Doing Dementia: The Journey Continues

ALZ: Out of the Closet

2011-10-09T22:56:00.000-07:00

Alzheimer's disease, once a secret families tried to hide, is now out of the closet and onto the public plazas and streets.

With noisy pride, caregivers and families and friends of persons with this disease walked under a sunny sky today on Avenue of the Stars in Century City, raising money and awareness.

Among the 3-4,000 people, I found my friend Marnie Reid from Sunrise of Santa Monica and joined her contingent of about ten. Marnie was one of the kindest, most dedicated and perceptive persons caring for my mother while she was in the Reminiscence Neighborhood at Sunrise.

Families walked, all wearing t-shirts with the name or photo of a loved one who had died of Alzheimer's.

I was walking for my mother--but also for myself.

Walk to end Alzheimer's

2011-10-07T17:05:00.000-07:00

About 3,000 people are expected Sunday in Century City (Los Angeles) for this year's Alzheimer's Walk. It begins at 8:30 in Century City Park.

There are other walks all over the country... Sept. 21 was National Alzheimer's Awareness Day.

You can either walk or just make a donation by using the link attached to the title of this post.

See also www.alz.org.

Beauty at Ninety

2011-09-25T01:11:00.000-07:00

I visited a friend's mother at Regents Point in Irvine.

Beauty everywhere... in the faces and flowers.

Her mother is 90 years old and in hospice care but still gracious and a pleasure to talk with. She even laughed deeply at one of my jokes!

At one point, mother-like, she asked "Aren't you chilly?" and I realized, yes, I was. I put on a sweater.

At her mother's nintieth birthday party last June, my friend made t-shirts with photos of her at various points in her life. Children and grandchildren each wore a t-shirt of her at the same age each is now... or of him or herself as a child with her.

From the perspective of life at its busiest, this beautiful woman's life is now much diminished, but from another viewpoint, there is still quality of life.

Web seminar on ALZ and LBD

2009-06-09T20:37:00.000-07:00

Betwixt and Intermixed - Dementia With Lewy Bodies

Three members of the Lewy Body Dementia Association Scientific Advisory Council (SAC) are participating in an upcoming free webinar on dementia with Lewy bodies (DLB), the quintessential overlap disease between Alzheimer (AD) and Parkinson diseases (PD).

This live discussion, hosted by the Alzheimer Research Forum, will take place on Monday, 15 June 2009, from 12 noon to 1 p.m. EST and will feature short slide presentations by Drs. Ian McKeith, Brit Mollenhauer, James Galvin, James Leverenz, and Walter Schulz-Schaeffer, with audio provided via a telephone line. (Drs. McKeith, Galvin and Leverenz are members of LBDA's Scientific Advisory Council.)

Questions for the panel can be submitted in advance and during the live event. An interactive chat session will follow the webinar.

Click here to learn more and register for the event.

A-Betas: the New Trans Fat

2009-05-12T10:54:00.000-07:00

I learned a new term last night--amyloid-beta proteins--and it's sure to become a household word like trans fatty acids.

These A-beta proteins are the sticky stuff that make up the famous plaques deposited in brains of persons who show symptoms of Alzheimer's disease.

On last night's HBO special "Momentum in Science," doctors described A-Beta deposits as "dirt" or "splinters" in the brain, causing inflammation in which microglia (another new term for me) eat up the A-beta but also kill brain cells.

A researcher showed two very dramatic before-and-after slides of twenty-some neurons with many connections and then (after adding microglia) just a few neurons with almost no connections.

That was enough for me--I'm going to try to reduce the A-beta protein in my brain.

It turns out that insulin resistance and glucose levels are related to how much A-beta is present in one's brain and spinal fluid at any time.

"Insulin levels sky rocket," they said, after eating foods high in saturated fat and simple sugars. "They remain elevated for a long time... and cause increased beta amyloid in the spinal fluid."

So I'm converted: no more egg mcmuffins with orange juice (does juice have simple sugars?) when traveling.

The other segments of "The Alzheimer's Project" are about patients, families, and caregivers--useful if you aren't already involved in dementia care.

But I recommend that everyone watch the two-part series on the science of Alzheimer's Disease (AD). You can see it by streaming from the website hbo.com/alzheimers... if you can spell it. It will also be repeated several times this week, or you can buy the DVD.

Another tidbit: aerobic exercise for 30 minutes dramatically increases insulin resistance for 24 hours. Those nasty splinters aren't deposited.

Looks like my sporadic beach jogging needs to become daily.

Alzheimer's on HBO

2009-05-11T14:31:00.000-07:00

The TV gods have decreed that this is your week to learn about Alzheimer's.

HBO is airing a three-part series on the illness accompanied by a two-part supplementary series "Momentum in Science," which includes 15 sections on various aspects of the causes and possible preventive measures for Alzheimer's.

See http://www.hbo.com/alzheimers/index.html. (You can click on the title above "Alzheimer's on HBO" to get to the website.)

Tonight on the west coast, the shows begin at 7:30 pm and 8 pm. They are repeated all week and also available through HBO On Demand and by streaming from the above website.

I missed the last big documentary, Addiction, because we didn't have HBO, so I bought the DVD edition. But now we have not only not killed our television but subscribed to an even greater selection of cable channels, including HBO.

None of last night's first section, "The Memory Loss Tapes," was new to me, as a veteran of four years' visits to the dementia floor of an assisted living residence.

It was moving, nonetheless, especially the woman tormented by the hallucination of a snake on her wheelchair (as my mother saw worms coming out of the fire sprinkler on her ceiling).

She also talks to her "neighbor" in the mirror and wonders why she is so silent and won't ever come to her room to visit.

I was surprised that HBO filmed and aired the actual death of one gentleman, after showing video and photos of his entire life. It was a gentle death, much like my mother's, but surprising on television nonetheless, followed by his funeral complete with open-casket viewing.

If Alzheimer's or another dementia runs in your family, this is an easy way to learn more about it.

Glimpse of Glory

2009-04-09T23:12:00.000-07:00

It's Skaertorsdag--Maundy Thursday in Denmark--and it's also one year after my mother died on April 9, 2008.

We drove around rural Jutland near Aalborg looking at churches and their graveyards, trying to find my relatives with the surname Nejsby or Norgaard. The Lutheran churches had services scheduled for Longfredag (Good Friday), but there was no sign of any service on Thursday evening. We had to leave the next day.

We had found one Baptist church the day before, in Vaarst, where my family had been members of a Baptist church in 1870--and no Baptist churches in any other city, so I planned to return there in the evening for a possible Maundy Thursday service.

When we arrived at 6:40 and I studied the list of services, I realized that at 18:30 a service had begun--we heard singing and children's voices. I persuaded John to join me in attending, though he was worried that there might be a foot-washing service.

"Baptists don't do that," I asserted hopefully. "Only Episcopals and Catholics."

As we entered, we realized everyone was in the church hall sharing a meal there. John started to protest that we weren't welcome and turned to leave, but two kind women had seen us and came out into the hall to welcome us and invite us in.

Soon we were seated at a table, part of a U-shaped set of tables where about fifty people were reinacting the Last Supper. A cross-shaped arrangement of one hundred or so votive candles glowed in the center on the floor.

Though we felt embarrassment at being strangers in an intimate group and at being late, soon we were singing a hymn that sounded like "The Church's One Foundation" but with different words.

Then a Taize song was chanted, followed by singing a Danish hymn I didn't recognize.

Then the pastor spoke in Danish.

He read from John 13, where Jesus washes the feet of the disciples, and then read from I Corinthians 11:23-26. I made out the words "the new covenant in my blood" ("den nye pagt ved mit blod").

Then he broke a large loaf of homemade bread and blessed a flask of grape juice. These were passed around, each person breaking off a piece of bread for the person next to him or her and pouring two inches of grape juice into the neighbor's cup.

The silence in candlelight was warm and holy. John and I took part in the ritual, and I was convinced that I shared some of the same genes with these people, as well as the same faith.

The deep communion was like that of the church members in Babbette's Feast, which I had watched a week before flying to Denmark.

When they were gathered around a humble table, "...the rooms had been filled with a heavenly light, as if a number of small halos had blended into one glorious radiance" (p. 53).

In that scene, a man speaks who had years earlier passed up a chance for love with one of two sisters in the story:

But the moment comes when our eyes are opened, and we see and realize that grace is infinite. Grace, my friends, demands nothing from us but that we shall await it with confidence and acknowledge it in gratitude... See! that which we have chosen is given us, and that which we have refused is, also and at the same time, granted us. Ay, that which we have rejected is poured upon us abundantly. For mercy and truth have met together, and righteousness and bliss have kissed one another!

Then I noticed it was 7 pm, and with a nine-hour time difference, 10 am in California.

"Just the time my mother died a year ago," I realized with awe.

At the moment marking her death, here I was sharing a holy meal honoring Jesus' last intimate breaking of bread with his disciples before his death--a meal where Jesus is present for us, where heaven and earth join.

In the joyous, familiar faces of these people, I felt the presence of Jesus, my mother, my great-grandmother (born in this village), and all the believers who had lived here in the 1800s and since then.

The usual curtain between earth and heaven, life and afterlife, was drawn aside. We were all very near and joyous.

After the service, the people asked us where we were from.

In halting Danish, I said, "Vi kommer fra California. Jeg soeger den familie Nesby. Min bedste mor bo her." ("I am looking for the Nejsby family. My great-grandmother lived here.")

The man and two women across from me said, "We three are all Nesbys-- there are many Nejsbys here!" He began speaking some English and called over his brother who had traveled in the US.

We shared their dinner of salad, meat, bread and compared our family trees. I told them that she had been a member of this church, and they told me that another family member had been the pastor.

The church had first met in secret at the family's farm because changing to Baptist faith in this Lutheran country had caused them to be rejected by others.

Their great-grandfather and mine had been brothers. They were as amazed at our arrival as we were to discover so many third cousins.

Soon were were in the sanctuary taking photos of us with fifteen or so family members. Then they took us to see the "Nesbygaard," family home and barn over 200 years old.

Then we went with them to Jens Anker Nasby's home where we studied their family history records--including the name of my great-grandmother, when she immigrated, where she lived and died in the US.

We had to leave the next morning to catch a ferry from Aarhus back to Copenhagen, but all evening we shared so much joy--a gift from God on this day marking my mother's death.

One Year Later: Remembering

2009-04-08T13:39:00.000-07:00

Tomorrow will be April 9, 2009--one year after my mother's death.

For the last several weeks I've been reliving the events of a year ago:

Last year her birthday was on a Wednesday, and while taking her out to lunch, I noticed that she had trouble eating. Two days later at a P.E.O. meeting at my house, her swallowing problems became more apparent.

By the following Monday, her caregivers were worried that she wasn't eating and urged me to take her to her doctor.

I did so that afternoon and was shocked by how much her weight had fallen: from 110 lbs. to somewhere in the 90s. I had expected the doctor to give her an appetite stimulant or do something helpful, but instead she diagnosed my mother's condition as "end-stage dementia" and told me that I needed to place my mother on hospice.

The doctor had urged me to do this more than a year earlier, but I had said I would wait until some health crisis precipitated it.

Now she asked if we wanted to have my mother fed by intubation or not; my siblings and I said no to that kind of feeding. That meant that she would die naturally by starvation and dehydration (the usual cause of death in end-stage dementia). Hospice doesn't usually allow an IV for hydration, and her assisted-living residence does not allow IVs.

Even as I finally began working with hospice, I still expected my mother to live several more months--no one told me how quickly the end could come.

The next three and a half weeks were a whirlwind of get-acquainted meetings with 5-6 people each from two hospices: the initial person with whom one signs up, the nurse in charge, the nurse's aides (various ones on various days), the physical therapist, the social worker for the spiritual well-being of the family, etc. Because the first hospice's aides took her to meals without her false teeth in, I changed to another hospice.

I soon figured out that the hospice services provided as much morphine as we asked, and an hour or two per day of physical care, but no hours of just sitting with the patient. (Actually, in my two experiences with hospice, they seem overeager to provide morphine, almost saying, "Here you go, use as much as you want; just keep her out of pain.")

Meanwhile, the caregiver who worked with her 4 hrs. per day on five days per week made a trip to visit family in the Philippines.

I decided (with my siblings) that Mom needed someone to sit with her around the clock, especially at night, so I contracted with an agency to do that, meeting the owner and several new caregivers who would do various shifts.

It was a nightmare of worry: meeting with all these people, trying to get my mother to eat and take her medicines, making calls to Bill and Jim and Emily to discuss these issues and advise my brothers to come for last visits.

But my mother was losing the ability to swallow. We gave up on soft foods and turned to pureed foods, then to Ensure only, then to water. And finally she could not swallow water.

A year later I remember two moments in particular out of all this whirlwind.

1) A kind RN, Jewish, who in her initial assessment visit with my mother said, "Oh the poor dear, she's so weak. She's dying. Yes, she will not last more than a few weeks."

She said this maybe 10 days before Mom died. It was so helpful to have someone speak directly like this--it changed my approach. A few days later I stopped trying to get my mother to take her pills.

2) The other moment came on the last Saturday afternoon of my mother's life. My sister had visited her in the morning, and I was going to spend the afternoon with her, looking forward to an intimate time of talking and sharing with her, perhaps reading a psalm or praying with her.

I wanted to drive her somewhere to see the poppies blooming or see the ocean from the Santa Monica pier. We did go to the pier but she was not too interested.

Back at her room, I settled down for a quiet time with my mother, but the evening caregiver came an hour early. I remember being disappointed but not having the courage to tell the caregiver to leave.

Instead I went home, went to dinner with my husband, and came back at 10 pm to spend the night on the floor of the room when the caregiver had to leave. She was asleep when I arrived and did not wake up more than once briefly in the night while her Depends were being changed. I spoke to her briefly then.

I wish I had taken the time to clear out all the caregivers and other concerns in my life and just spend several quiet hours with my mother... but I didn't realize she had only Sunday, Monday, and Tuesday left to live.

In the morning when she woke up, she said, "Anne, are you there?"
"Yes," I said. I got her up, dressed her, tried to get her to drink Ensure or at least water, then took her to church for her last time--a feat in itself.

Then we went to my house, but she was tired, so we returned to her residence. It was all busy time, not face-to-face communication time.

Even on Tuesday evening, her last full day, I taught my class as usual in the morning, returned to Santa Monica, and did not spend more than two hours with her. Even that was with others in the room, discussing care issues: how much morphine she should be getting, how to moisten her mouth, whether she should have a shower or not. I thought she'd live several more days.

I helped her move from her chair to her bed, turned on the CD player with songs like "The Old Rugged Cross," kissed her goodnight, and left her with the caregiver.

The next morning just after 8 am, while I was jogging on the beach, I got the call: "She's having labored breathing."

That started the last whirlwind of actions (call Emily, call brothers, get updates and make decisions with the staff). Emily arrived.

By 10 am, she died.

And then a new flood of decisions and actions had to take place, dealing with the mortuary and the church where her service was to be held. My sister did most of the arrangements with the church; we went to the mortuary together where an inept official made the process much worse than it needed to be.

I don't know why all these events and worries are so vivid a year later.

As it turns out, I am in northern Denmark for the first time in my life, looking up the roots of my Danish grandmother (my father's mother), visiting Copenhagen, Aalborg, Viking museums, old churches with my husband.

But still my thoughts are with my mother one year ago.

Flowers for Her Birthday

2009-03-12T08:52:00.000-07:00

Mom was born ninety years ago today.

She is grateful not to have to face a cake with that many candles. She didn't want that many years, or even the last few of the 89 she completed.

A year ago I took her to lunch at Carrow's and noticed that it took her so long to eat. She was having difficulty swallowing but managed to eat about five breaded shrimp.

She ate a spoonful of mashed potatoes and applesauce, a few French fries.

She wanted rhubarb pie--not on the menu.

She drank a huge cold glass of milk, but three weeks later she couldn't swallow milk or water.

She starved to death, actually--they call it "end stage dementia" when the brain and throat muscles of an Alzheimer's or other dementia patient can't work together to swallow.

But at the end it was a peaceful death, painless, with her daughters holding her hands.

Resting Place

2009-01-04T21:49:00.000-08:00

I stand knee deep in snow near the spot where Jim and I buried Mom's ashes last June.

The lilac bush I planted there is covered by snow--I hope it's still living. Colorado blue spruce overlook the spot, near where the ashes of her parents are buried close to their cabin at Trout Lake.

Is this why I drove from Los Angeles to Colorado on January 1 and 2? All I knew was that I needed solitude and beauty.

But standing here, I realize I am drawn to this spot. Being here is a way to talk to my mother.

"Are you cold?" I ask her silently. "Would you rather still be with us?"

Of course, I answer for her. I feel her longing for Christmas, the cheer of being with all of us at this time of year.

Instead her ashes rest under this snow.

But she would not have wanted to suffer, I tell myself. Having her Depends changed twice or three times in the night by male caregivers, being showered and lifted in and out of chairs and her bed, being badgered into taking her medications, living in a care facility rather than at my house... she hated it.

I remember how accepting she was of her final parting.

"I won't be here tomorrow," she told a caregiver. She wasn't even interested in her book, Adventures of a Telluride Native, formerly a source of great pride.

Does she have consciousness now? Perhaps not. Perhaps she doesn't mind her ashes being here, alone under this tree.

Or perhaps her consciousness is greatly expanded, wide as the Milky Way, joyful, in God's presence.

I don't know. But I still feel drawn to this spot. There are dried sunflowers in the house from last summer, and I want to lay them on the snow here.

Lost Child

2008-12-24T23:34:00.000-08:00

At Christmas there were so many moments of sadness, missing my mother, who died last April.

When I brought boxes of Christmas decorations down from the attic, there were the two shopping bags labelled "Grandma's Christmas things." I wouldn't be taking them to her apartment to create Christmas cheer this year, as I had since 2003.

She loved Christmas and had not wanted me to take these decorations down in mid-January last year, probably knowing she would never see them again. All the cozy cheer of Christmas to be put away forever--that's hard.

Stunned by these thoughts, I had to sit down in a chair and shed a few tears.

There were other moments--finding the Christmas apron I had made for her, putting up the elegant holiday wreath she had bought us.

But the hardest came on Christmas Eve when I hung up the stockings: Dad, Mom, Roz, Ellen, Marie... and found the stocking labeled "Grandma."

There will be no stocking for her this Christmas.

I mourn as if I have lost a child, not a person 89 years old who was actually ready to die.

She was so child-like in her last years and sometimes asked, "Are you my daughter or my mother?"

I cry because one of my children is missing this Christmas.

P.E.O. Lives On

2008-09-26T21:25:00.001-07:00

I went to a P.E.O. party today, trying to get home from Northridge in time to get there by 4 pm.

In this crowd, dinner is at 4:30 or 5 pm. At least I was able to get home by 6 pm to watch the presidential debate, fleeing the bridge and other games offered.

It was good to see their faces but also sad to see the decline in health of some of those my mother's age. More canes being used, more deafness in conversations, more members missing because of health issues.

But travel to Chile and "Michy Pitchy" and important books read in book clubs.

The president had a large red circle around her left eye socket, as if she had been whacked with a door knob. She explained that she'd had surgery.

Maggie, one of the weakest, reminded me that I had wheeled my mother in through the patio last year... "You came right through there," she said, still seeing us.

Until that moment I hadn't thought about attending this same B.I.L. dinner a year ago today.

Then I remembered it all: the crisis of my mother's diarrhea in the wheelchair just after we arrived, my embarrassment at the increasing smell, my effort to stay a decent amount of time before leaving, Mom's insistence that she wanted to go home.

"Why did you go this year?" any reasonable person might ask.

Well, I am now a P.E.O. I took those vows of sisterhood. These old ladies are my sisters, dammit.

I'm teaching Monday, Wednesday, Friday, so I'm excused from the meetings at 10 am every other Friday. With this 4 pm party and the Christmas party, I feel that I will have done my duty.

Still trying to be the good little girl.

Mental Health Advocacy

2008-09-25T21:53:00.000-07:00

I went to an annual celebration of LA's Mental Health Advocacy Services tonight, a guest of my friend Shirley Luehring Kirby, who is a board member. (See www.mhas-la.org.)

LA Times columnist Steve Lopez was one of the featured speakers, receiving an award for his book The Soloist about his friendship with a talented musician whose life had been derailed by schizophrenia and who was living on the streets of Los Angeles for many years.

The movie version starring Robert Downey Jr. and Jamie Foxx will be released in November.

I was moved by Steve's account of his encounters with Nathaniel Ayers and how they changed him.

In fact, while driving home I suddenly had an insight about my mother that never before occurred to me in the five months since her death from end-stage dementia on April 9.

Usually when I think about her, I feel grateful that I am no longer spending two or more hours per day visiting her and making medical decisions about how and where to care for her.

But tonight I had a sudden onrush of memory: her lying lonely in her bed, sleeping, then being wakened to have her Depends changed and to be turned onto her other side.

A rush of gratitude followed: Thank goodness tonight she's not sad and alone. She will not be in danger if the fire alarm goes off--will not struggle to get out of bed, fall on the floor, and break a bone as she did last December.

I've uttered the platitude that "At least she is no longer suffering," but always before I was thinking about her inability to swallow in her last few weeks, her being confined in a wheelchair, her loneliness and boredom in the daytime living in a memory-care floor of an assisted-living facility.

Tonight the pain of those evenings flooded back:
* me trying to leave at 7 pm or so.
* her saying, "You'll stay and put me to bed, won't you?'
* me saying, "No, Esther will come. I have to leave now."
* or me getting her through the shower, putting on her nightgown and getting her into bed, then trying to say goodnight and escape as she asked me to stay longer.
* her later waking alone in the night with urine in her Depend, waiting for someone to come, then suffering the indignity of having the sodden diaper changed, often by a man.

Tonight I don't have that worry, I realized. She's not lonely or in danger.

I visited the residence three days ago and learned that now there's only one person on her floor at night in charge of 31 residents. Before there were two.

I've been grateful for the release her death gave to me, but hearing the stories at the dinner this evening reminded me that just a few months ago she faced the long night alone every night.

I no longer have to fend off guilt as I kiss her goodnight and return to my warm comfortable home.

"Can't I stay here tonight?" she asked me a few times in the last weeks of her life when she sat at my dinner table eating a snack at 5 pm.

"No, I have to grade papers," I would say, or "prepare for class" or "fix dinner for John."

I did have work to do, but mainly I just needed her to be at her place so I could have the night to myself and not be setting up the bed, undressing her and putting her to bed, tending her during the night, and getting her dressed and fed in the morning.

As it turned out, her death was peaceful. I was relieved that I no longer had the burden of her care and that she had faced it all with such courage.

But this evening, after hearing about the dangers Nathaniel faced at night, Mom's night suffering and my worry about it suddenly took me by surprise.

Thank goodness we are both free now.

Free on the Fourth

2008-07-04T09:29:00.000-07:00

This is the first Fourth of July that I have been free of care for my mother, care for children, care for grandparents, care for anyone at all.

I treasure this day to set my own agenda, yet I am sad that I am not in Telluride. For me the only place to be on the Fourth is Telluride, watching the parade, going to the barbecue in the park, perhaps listening to the fireworks reverberate against the 13,000-foot peaks.

I don’t like the fireworks because they are symbols of bombs and grenades, IEDs. They are violence made pretty. Still, I want to be in Telluride and I miss her. This holiday is all about her and her home town, where I've been for nearly all the July 4s of my life. She made sure the family was there when she had young children.

In 2004 and earlier years, I took her to Telluride for the celebrations on July 4. Since 2005, I've dressed her up in red, white, and blue and taken her to lunch here, then to fireworks in the evening.

I’m sad that she doesn’t have this Fourth to Celebrate, but if she were still here, it would be a burden for me. My whole day would revolve around her.

Instead, this year I am free.

Depend on It

2008-07-02T22:38:00.000-07:00

Today amidst various errands I pushed a grocery cart through the grocery store nearest to the assisted living residence where my mother lived, gathering $130 worth of various foods, cleaning supplies, cat litter, etc.

But when the Depends caught my eye at the end of aisle two, I suddenly felt tears at my eyes, the tension of a suppressed sob in my chest.

I realized that today's a Wednesday; it's been exactly twelve weeks since my mother died peacefully at 89 years of age.

So this is what it means to lose her, I realize: though I accept her death as necessary, a blessing to both of us, I miss her at odd moments like this.

I see the Depends and don't buy them, remembering how often I piled three packages into my grocery basket and rushed on to the wipes, the V-8 and other weekly purchases.

I realize that she is not two blocks away, waiting for me impatiently. She is gone. It's better that she's gone, but sadness remains.

Our lives come to an end, and the world carries on without us. She wanted to be near the center of my life, but now she is a memory, a sudden swell of feeling as I pass the incontinence products in the grocery store.

View from Above

2008-06-30T23:53:00.000-07:00

Flying back from Indianapolis to California today, the plane passed over the Rocky Mountains in southern Colorado.

I wanted to look down and see Telluride, Trout Lake, Mesa Verde, but a haze covered the area, and shadow too. The sun must have set down there.

"My mother's ashes are down there," I thought. "I'm flying over the spot where they lie, under the lilac bush."

Last week my brother Bill reported that the red columbines I also planted under the lilac had died. I'm sad that they died... I wanted that spot to look so beautiful, to contain her cherished flowers.

"I wonder if she cares," I then mused, looking down from the airplane window.

And staring out at the billows of cumulus clouds illumined by the setting sun, I realized, "No, she doesn't care. She is so far beyond caring about that little spot on earth where her ashes lie. It's only Bill and I who are tending that spot, wanting the lilac to survive its first cold winter at 10,000 feet, wanting the shooting star columbines to bloom there."

She is so far beyond, but we still care.

Love Is a Pink Bear

2008-06-18T11:42:00.000-07:00

Before driving to Colorado with Mom's ashes, I sorted through her remaining possessions, looking for things to take to Trout Lake to keep in her cabin there as a kind of memorial to her:
~the antique doll buggy given to her when she was four years old,
~her diary of 1936-38,
~photos of her with her brother Reynold Gustafson and her cousin Walter Pera,
~her framed poem "Work,"
~the photo collage I made for the door of her room at the assisted living.

I also came across things that needed to be given to the Salvation Army but had so far escaped that fate.

Then I saw the pink plush bear that sits on a shelf and sings:

L is for the way you look at me.
O is for the only one I see.
V is very very extraordinary.
E is even more than anyone that you adore.

And love is all that I can give to you.
Love is more than just a game or two.
Two in love can make it;
Take my heart and please don't break it!
Love was made for me and you.

I found this bear in the Mission Hospital gift shop when Mom was having surgery for her second broken hip in August, 2004. It has two strings of pearls and a white plush wide-rimmed hat with a pink silk ribbon tied in a rosette. Another ribbon comes from the back to tie in front at the waist in an elegant, floppy bow.

Its head bobs left and right, the mouth opening and closing as it sings, sitting upright on a solid oval base though the arms and legs are soft, a shiny pale pink velveteen with stuffing.

I had squeezed its paw and played it for her many times in 2004 and later, always bringing a smile to her face. Sometimes she tilted her head left and right in rhythm with the music, as if dancing to it though sitting upright in her bed.

Yes, I decided, the bear has to go to Colorado. It rode in the car with me across the desert and up into the mountains, representing my mother's taste in dress in her later years with its hat and bows and pearls and plush pink.

While I was cleaning my house at Trout Lake, however, I noticed things that needed to be given away and decided that the pink bear was one of them. Surely it should be given to some poor child who would enjoy it.

In Telluride there's a collection of shelves and bins called the Free Box; people leave items, and others who have needs come by and sort through them, taking anything valuable. I drove there.

Dropping off my bags, I placed the bear on a shelf in full view, hoping someone would take it home to a child, hesitating to leave the bear but finally driving off to return to Trout Lake.

Leaving town, however, I thought of the bear sitting there and wanted to go back and get it.

I pulled over and yelled at myself: "You're crazy, Anne. Why do you want that bear? It should go to a poor child. You can't keep everything."

"But it reminds me of her," I answered myself. "It means more to me than it would to some child who would get it."

Feeling completely foolish, I turned around and drove back to the Free Box, walked up to the bear, and picked it up in full sight of a couple of Mexican-American men lounging there.

As I again drove out of town, I squeezed the pink bear's paw so it sat in the front seat singing, "L is for the way you look at me...."

Back in her cabin, I put it on the bureau in the bedroom, but a few days later, thinking of the dust and mice that would attack it over the winter, I took the bear to my car and drove it back to California, where it sits in my house near Mom's glass cabinet holding her doll collection.

I need to give away more of the dolls and sort through her many papers and photos--but the pink bear is here to stay.

Surrounded by Beauty

2008-06-15T11:26:00.000-07:00

Here are the mountains around Trout Lake, where Evelyn's ashes rest in peace.

For the story of her life, order Adventures of a Telluride Native from Western Reflections Publishing at http://www.westernreflectionspub.com/ or from Amazon.

Return to the Earth

2008-06-14T22:08:00.000-07:00

Today we placed Mom's ashes in the soil under the small lilac bush that I transplanted near her cabin yesterday.

The service was just before sunset, after Jim and his boys had been fishing in the lake.

I read from the Episcopal Book of Common Prayer, The Burial of the Dead, Rite One, including the Commendation and the Committal.

"O God, whose mercies cannot be numbered: Accept our prayers on behalf of thy servant Evelyn, and grant her an entrance into the land of light and joy, in the fellowship of thy saints; through Jesus Christ thy Son our Lord, who liveth and reigneth with thee and the Holy Spirit, one God, now and forever. Amen."

Tom read parts of Psalm 90:

Lord, thou hast been our refuge, from one generation to another.
Before the mountains were brought forth,
or ever the earth and the world were made,
Thou art God from everlasting, world without end....
For a thousand years in thy sight are but as yesterday when it is past,
and as a watch in the night....
The days of our age are threescore years and ten;
and though men be so strong that they come to fourscore years,
yet is their strength then but labor and sorrow, s
o soon it passeth away, and we are gone.
So teach us to number our days,
that we may get a heart of wisdom.

I read:
"Grant that all who have been baptized into Christ's death and resurrection may die to sin and rise to newness of life, and that through the grave and gate of death, we may pass with him to our joyful resurrection....

Grant to us who are still in our pilgrimage, and who walk as yet by faith, that thy Holy Spirit may lead us in holiness and righteousness all our days. Amen....

Grant us grace to entrust Evelyn to thy never-failing love; receive her into the arms of thy mercy, and remember her according to the favor which thou bearest unto thy people. Amen."

In the commendation portion of the service, I read these beautiful words:

"Give rest, O Christ, to thy sevant with thy saints,
where sorrow and pain are no more,
neither sighing, but life everlasting.

Thou only art immortal, the creator and maker of humankind; and we are mortal, formed of the earth, and unto earth shall we return. For so thou didst ordain when thou createdst me, saying, 'Dust thou art, and unto dust thou shalt return.' All we go down to the dust; yet even at the grave we make our song: Alleluia, alleluia, alleluia....

Into thy hands, O merciful Savior, we commend thy servant Evelyn. Acknowledge, we humbly beseech thee, a sheep of thine own fold, a lamb of thine own flock, a sinner of thine own redeeming. Receive her into the arms of thy mercy, into the blessed rest of everlasting peace, and into the glorious company of the saints in light. Amen.

Glancing often up to the last sunlight on the majestic peaks, I read the Committal:

"All that the Creator giveth me shall come to me;
and the one that cometh to me I will in no wise cast out.
The God who raised up Jesus from the dead
will also give life to our mortal bodies,
by God's spirit that dwelleth in us.

Wherefore my heart is glad, and my spirit rejoiceth;
my flesh also shall rest in hope.

Thou shalt show me the path of life;
in thy presence is the fulness of joy,
and at thy right hand there is pleasure forever more."

Then I opened the plastic bag with her ashes, about five pounds in weight, poured them into the ground under the branches of the lilac bush, and asked Tom and Greg to help me scoop earth lying nearby (from planting the bush yesterday) and place it over her ashes. We did that and then covered the fresh earth with sections of sod that had been growing there.

I read from the Commital:

"In sure and certain hope of the resurrection to eternal life through our Lord Jesus Christ, we commend to Almighty god our mother and grandmother Evelyn; and we commit her body to the ground; earth to earth, ashes to ashes, dust to dust. The Lord bless her and keep her, the Lord make his [sic] face to shine upon her and be gracious to her, the Lord lift up his [sic] countenance upon her and give her peace. Amen."

The Lord be with you.
And with thy spirit.
Let us pray... [the prayer Jesus taught us]...

Rest eternal grant to her, O Lord:
And let light perpetual shine upon her.

May her soul, and the souls of all the departed,
through the mercy of god, rest in peace. Amen.

The God of peace, who brought again from the dead our Lord Jesus Christ, the great Shepherd of the sheep, through the blood of the everlasting covenant: Make you perfect in every good work to to God's will, working in you that which is well pleasing in his sight; through Jesus Christ, to whom be glory for ever and ever. Amen.

O God, whose blessed Son wa laid in a sepulcher in the garden: Bless, we pray, this grave, and grant that she whose ashes are buried here may dwell with Christ in paradise, and may come to thy heavenly kingdom; through thy Son Jesus Christ our Lord. Amen."

For me, reading these beautiful words and putting Mom's ashes to rest in a place of such beauty, was a joyous experience, filled with awe and a sense of God's presence.

Jim was sad and a bit choked up, said he did not want to see her ashes.

"You don't have to look," I told him. "This is a very beautiful and happy time for me, but you have a right to have your own feelings about it, to be sad."

Tom and Greg, ages 18 and 14, were quiet; I wasn't sure what they were feeling.

At any rate, we left her ashes there, near the ashes of her father, which were placed next to a one-foot tree on a knoll behind the cabin in 1976, and the ashes of her mother, placed there in 1984.

We left behind her ashes, guarded by the little lilac bush with the three red columbine plants blooming next to it.

Jim and Greg cleaned the ten fish they had caught in the afternoon, while Tom and I drove over to my house to fix dinner.

I am confident that she rests in peace, back in Colorado at last, forever.

Returning to Colorado

2008-06-11T09:49:00.000-07:00

My mother's greatest wish was to return to Colorado. She missed Boulder, the Flatirons, Telluride, Trout Lake, her homes there and all the beautiful mountains.

Today I am driving her to Colorado--that is, I am driving her ashes.

The Telluride native, after all her adventures, is returning to Colorado.

I feel her presence with me in the car. Her ashes are glad to be done with sitting on my mantelpiece in California, glad to be speeding across the Mohave to Needles, Kingman, and Flagstaff, glad to be cross the Navajo Nation and reaching the Four Corners, then crossing the San Juan River into Colorado, driving through Cortez up the Dolores River valley to Trout Lake.

I couldn't take her here in the summers of 2005, 6, and 7, but she is going now. Last summer when I drove to Colorado, she said, "Is there any good reason why you can't take me with you?"

I mentioned one or two reasons, but there were many: her incontinence, her wheelchair-bound status, her weakness (unable to drive in a car for eight hours per day), her need for an oxygen-supply tank once we arrived, my lack of strength to transfer her into wheelchairs every time we left the car and then put her back in the car, the vigilance she would need at night, my lack of patience for dealing with all this.

At any rate, today I am driving her and some of her most treasured possessions to Trout Lake. I will leave her diary of 1936-38 and various photos in her cabin there. I will lead a service of deposition of remains with my brother Jim and his sons present as we lay her ashes to rest where she wanted them to be, near her cabin at Trout Lake.

Alzheimer's--Not LBD !

2008-05-14T22:02:00.000-07:00

The envelope arrived today from the UC Irvine Institute for Brain Aging with the report on the pathology of Mom's brain. Her doctors had encouraged us to participate in a program of full physical and mental testing, followed by donating her brain after death, to assess the accuracy of the diagnosis they had given her and to improve future diagnoses of others.

I trembled to open it.

Dear Ms. Eggebroten,

The neuropathological evaluation of your late mother, Evelyn Eggebroten, has been completed. According to our neuropathologist's observations, the final diagnosis is consistent with ALZHEIMER'S DISEASE. I have enclosed a more detailed report.

If you have any questions, or if we can help you in any way, please do not hesitate to give us a call at 949-824-5032.

With sincere thanks,

Bobby Dahlin
Research Associate
Institute for Brain Aging and Dementia Tissue Repository

The full page report inside says, in part, "Neuritic plaque formation... isch;emic cell change... No Lewy bodies, Pick bodies, or achromasic neurons are observed."

I was stunned. The doctors had been saying that her probable diagnosis was Lewy Body Disease, but there were none of these bodies in her brain. Instead there was the long threads of plaque called Alzheimer's, along with "ischemic cell change," which means cell damage caused by mini-strokes.

She seemed to have so many Lewy Body characteristics... she never lost her ability to speak in full sentences, to recognize her children...

It is a mystery. But this information will be helpful when the next generation--Bill, Jim, Emily and I--reach that stage of life.

In Remembrance

2008-05-04T12:52:00.000-07:00

Driving past Mom's residence--but not picking her up--on my way to church this morning was difficult.
Somehow I felt guilty for not stopping to get her, though I knew that was crazy.
Entering church, I sat in a different place than I had always sat before with her.
The service was fine until Communion and the words, "Do this in remembrance of me."
I thought about Jesus, aware of his impending death, asking his friends to remember him--a sad moment.
Then I thought about Mom on the day before she died, a Tuesday. I wished I had spent more time with her. Instead, I was bustling around going to work as usual and doing other errands. I could have chosen to spend the afternoon with her.
When I walked up to take the bread and wine, I was acutely aware of not pushing her up there with me in her wheelchair.
I felt like half a person. I guess that's how widows feel when their husband dies, or how widowers feel.
Back in my seat, I realized that from now on this central Christian ritual will always be in remembrance of Mom, as well as Jesus, at least in this particular church--unless I am with other family members to distract me. On April 13 with my cousins, the Communion didn't strike me this way, nor on April 20 when I was rushing back to do things with Roz. Last week I missed church to attend the LA Times Festival of Books at UCLA.
After church I attended the lecture on Judaism by Rabbi Michael Mayersohn of the Alliance for Christian and Jewish Studies. I couldn't have done that if I had her with me--she got bored in long lectures.
Then I drove home, happy to arrive at 11:15 and not to have to do shopping for Depends and other necessities, not to have to spend another two hours or more taking her to my house, urging her to eat, taking her back to her residence, settling her, and coming back home.
I am relieved to have more time for myself today--writing, gardening, sorting through her things to pass them on to my brothers and sister, paying bills.
But for the foreseeable future, I will be thinking of her as I drive to church, during church, and during the hours after church. Sunday was the day I spent the most time with her, except for doctor days, holidays, and other special events.

How strange. I couldn't have predicted that.

Regrets

2008-05-04T12:11:00.000-07:00

"You took such good care of her," friends often say to me. "I know you miss her, but at least you have no regrets."

"Oh, there are always regrets," I answer, usually with a laugh.

I do think of things I wish I had done, and I will share them in hopes they may give someone else insight.

1) I wish I had not kept pushing her to eat and to take her meds. It wasn't until about five days before she died that I really accepted her inability and unwillingness to continue with those basic acts of living.
For years I had been her coach, pushing her to walk again after breaking her hip in 2004, to do her exercises, to eat well, to take her meds.
It was so hard to accept her acceptance of death. She knew that eating and drinking were pointless. On the Monday and Tuesday a week before she died, she could still swallow pureed foods. By Friday, she was only drinking Ensure, but her face was set toward death.
I nagged her into drinking, half spoonful by half spoonful, one fourth cup of Ensure that day. I wish I had not nagged--had just sat and talked with her.
The next four days I squirted Ensure or water into her mouth with an eyedropper and instructed her caregivers to do that. It was hard to see her dehydration (hospice doesn't usually allow an IV for rehydration--they figure it just prolongs the suffering).
We were so pleased when she had enough liquid to wet her Depend twice on Tuesday, the day before she died. I thought she might last another few weeks.
I wish I had not kept urging her to eat, drink, etc.

2) I wish I had instructed her caregivers to accept her death and let her share her feelings.
Years and months and weeks earlier she had said, "I just want to die."
"Well, Mom, you will die when it's time but now you need to eat this (or take your meds or do something else)," I would say to her.
"Evelyn, don't talk like that!" Connie would say, her private caregiver.
In her last weeks when Mom started saying, "I'm ready to die," I would say, "You're tired, aren't you? You're ready to be with God. That's good."
But Connie would still say, "No, Evelyn, don't say that! We love you. You're going to be okay." She's Catholic and Filippina; perhaps for cultural or personal reasons, she could not look death in the face and say, "Yes, you are getting weak. You're going to leave us, aren't you?"
Most of the many caregivers who came into her room gave her pep talks about getting better or cajoled her into eating, drinking, taking meds instead of sharing her quiet acceptance.
I wish we all could have taken a course in how to speak with people who are quietly dying and know it. I wish I had tried to alert some of them to this issue rather than just listening to them and feeling unable to change their attitudes.

3) I wish I had spent more time with her on Tuesday, April 8, her last full day before her death at 10:05 am on Wednesday.
I went to teach my class at CSUN as usual that day, though I expected her to die within several days, maybe Thursday or Friday or Saturday. After finishing at 11 am, I did my office hours and worked in my office until 2 pm or so, then drove to Pasadena to pass out flyers on the Fuller Theological Seminary campus for the upcoming EEWC meeting--a meeting I missed because it turned out to coincide with my mother's funeral. I was really happy to be in Pasadena doing that, not rushing back to Sunrise to spend hours worrying about Mom. I knew a private caregiver was with her.
In Pasadena I also spent time mailing tax returns and a party dress to Ellen for a prom she was attending. I didn't get to Mom's room until 6 pm or later. I stayed an hour, talking to her and to the private caregiver Clarence, a petitie Filippina, who came early for her 7 pm shift.
We moved her from her chair to the bed, getting her in her nightgown.
"Do you want forties music or Christian music?" I asked her when settling Mom into her bed.
"Christian music," she said.
I told her I had mailed that dress to Ellen for a prom--that news brought a smile to her face. Most of the time Mom's eyes were closed; she wasn't speaking except in a whisper. A few people came in to see her.
Later various people told me the significant interactions she had had with them that afternoon. To Marnie she had said, "I won't be here tomorrow." Marnie had to good sense to turn away and shed a few tears but not to argue with her.
Thinking about it now, over three weeks later, I wish I had spent that afternoon with her. On her last day, I spent most of my time away, doing other things.
Why didn't I sit with her, talk with her, listen to her, share her calm acceptance of death?
I know the reasons I had then, but in retrospect the wiser choice would have been to sit vigil with her.
I guess her long illness had worn me out. It had been a long vigil, in a sense, and on that day I was giving myself a little vacation from being in her room. It never occurred to me, "This could be her last day, her last evening."
My brother Bill had said that about seven days after she stopped eating and drinking, she would slip into a coma that would last 3-5 days. It was hard to say exactly when she had stopped eating and drinking because we kept managing to get a little food, Ensure, water down her, and she never entered a coma, unless it was two hours before she died. Even half an hour before she died, she seemed responsive to my sister Emily.

So those are my regrets--and one more--that her obituary still has not appeared in any newspaper in Boulder, Denver or Telluride. I found this out two days ago when I asked my brother Jim, who lives near Denver, for a copy of it. He had written one the day she died, and I had edited it carefully two days later and sent it to him. He had sent it by email to the Denver Post but had not followed up on it. I was upset to find out that no notice of her life and death has appeared. I now wish I had asked him to let me take care of it. At the time I was trying not to be a bossy older sister, instead trusting him to do it. But he has a busy life, as we all do, and it had not been a priority for him.

I've learned that a death brings out sibling issues long buried: fears, anger, rivalry. That has been the hardest part of this past month. For anyone facing the imminent death of a parent: be prepared for this. Don't be surprised. Meet your own needs, and expect your brothers and sisters to meet their own needs and voice their feelings, even when it hurts others. Put on a heavy raincoat for this storm. Don't spend too much time with one of them who is flailing about.

Anyway, perhaps by writing out these regrets I will be able to let go of them and move on. And perhaps someone else will be able to learn from my mistakes.

New Address

2008-05-03T11:22:00.000-07:00

Now I know why I waited over three weeks before trying to cancel Mom's Verizon telephone service.

Today I spent an hour trying to do it and then finally gave up in tears. If I'd made this attempt any earlier, I would have been even more upset than I am today.

My big mistake: trying to do it on a Saturday morning.

First I dialed Verizon, entered my info, and went through a couple of menus, always hearing offers of expanded service. Finally I heard the automated voice give me choices that included "Disconnect."

"Disconnect," I said. A menu of further choices followed, including "Entire account," which I repeated firmly.

The computer voice sounded astonished and wanted to know why I was disconnecting. She gave gave me a list of options, none of which fit the bill. (I didn't want to select "Moved to a new location.")

"Just let me speak to a representative," I begged the voice.

To do that, I had to enter my name, address, phone number, etc., a few more times; then I was put on hold. Finally I got a new message: "The Verizon office you have requested is closed. Please call back at another time."

Just to make sure, I tried a different Verizon number (maybe "Billing questions" would work if "To order services" didn't) but reached the same dead end.

Okay, no humans available on a Saturday. With all the unemployed people in this country, Verizon can't put 50-100 of them to work on a Saturday. Or even one--being placed on hold for two hours would be better than nothing.

"Okay, I'll tell them she moved," I decided, "Just so I can disconnect this phone before the automatic billing hits her account with another $35.

But Verizon then demanded the five-digit zip code of the location where she had moved.

"Heaven!" I yelled. "She went to heaven, dammit! There's been a death in the family."

That put me back on their track to speak to a representative, and to hear five minutes later, "Please call back at another time."

So I tried again. This time I punched in 00000 for the zip code, but the voice then asked the name of the state.

"Death!" I yelled.

"I didn't understand your response. Please repeat it," said the automated voice.

"Argentina!" I tried again.

"Virginia?" the voice asked.

"NO!" At this point I looked in my address book and got a five-digit zip code for New York City. If I gave them a location, maybe they'd let me disconnect. I dialed through all the numbers and menus again, this time prepared.

"10021" I responded when asked to enter the five-digit zip code.

"You have moved to New York. Is that correct?" asked the voice.

"Yes," I agreed.

"We will connect you to a representative to handle your request," the voice promised.

I was encouraged--until I entered my info again and ended up on the same track that ended, "Please call back at another time."

Verizon refused to let Mom go without handing me to a fully human representative, probably to offer her service in another location, but those employees don't work on Saturday or Sunday.

Reluctantly, I decided to try the other option the automated voice had been suggesting repeatedly: "Go to our website." I went to my computer and tried to disconnect her service online.

Again, the only option was to say she had moved. No place on the website did death appear as a reason for ending service. So after name, phone number, address, etc. I entered:

City: Death

State: None

Zip Code: 00000

Then I found that my entry of all this information was pointless because I hadn't logged in first.

"Okay, I'll select a username and password to log in," I decided.

Username: Shedied.

Password: Dammit.

But still I was stymied. The voice said, "Before you can use this password, we will verify your order by automatically dialing your home billing number within twenty minutes after you select NEXT. "

Great! That call would go to her old room, which we emptied three weeks ago, phone and all. There was no way to say, "Could you please dial my phone number, not hers?"

Foolish me--attempting to disconnect a phone on a Saturday.

After All

2008-04-30T16:19:00.000-07:00

After all the confusion of hospice, meds, caring for someone who is dying, my life is quiet now. Mom died three weeks ago today.

She stays with me in two ways.

First, I'm surrounded by stacks and baskets and boxes of stuff from her apartment (as well as more boxes of things from when we moved her out of her home in 2001), including some twenty framed photos of her that stand all around my living room on tables, window sills, etc. I need to sort and discard and pass along many of these things, but so far I haven't had time. (There are two weeks left in the semester of the course I am teaching.) I also need to call several of her old friends and report her death to them... not done yet.

Second, I keep thinking especially on Sunday or at 4 pm on other days, "I need to go visit Mom--wait a minute, I don't need to go visit her."

The constant sense of responsibility for her hasn't yet left me. I keep thinking I need to buy Depends or V-8. At this time in the afternoon, I start feeling guilty for doing whatever I'm doing and not yet going over to her residence. But then I remember she's gone.

Aisles of the grocery store or drug store trigger automatic responses: "What's the price of Depends?" It takes will power not to go check on the price, not to buy flowers to take to her, not to buy Hershey's kisses to fill the candy dish for her caregivers.

I haven't stopped by her place to see my friends there who took care of her: Marnie, Susan, Esther, Stan, J.R. The last time I was there, nine days ago, it seemed as if she must be just around the corner in her room, waiting for me, the same as ever.

Being so close to where she lived, I felt her absence more keenly.

I'm grateful that she's not suffering and that I have my time for so many other things on my To Do list--but it takes time to get used to her not being here.

She's History

2008-04-25T17:02:00.000-07:00

Now that Mom is gone and the busyness of her memorial service is over, other concerns absorb my attention.

A crisis with daughter #1 absorbs all my attention for a week, and I realize that I'm not thinking about Mom at all.

Then it blows over--actually a false alarm--and I remember I need to grade the midterm I gave a few days ago. And I should order plane tickets to the graduation of daughter #2.

The backlog of other things to do leaps into mind: 2007 tax return, visas and hotel for our big summer trip, preparation for a speech on abortion at PARO (Presbyterians for Reproductive Options, meeting during General Assembly in June).

When I do think of Mom, I regret not thinking of her at all for half a day. She would hate that! Always she wanted to be important, but now she is not the focus of my attention.

She's history.

Dementia Lives On

2008-04-19T16:47:00.000-07:00

I thought my walk with craziness was over, but I feel surrounded by it every day.

I take on too many tasks, stay up too late, get up to teach a class on two or three hours of sleep--and realize I am now the carrier of dementia.

I go to Build a Bear with my oldest daughter buy a graduation dress for her chihuahua to wear to her sister's graduation from college on May 18: should it be a spaghetti strap floral print or a more formal pink satin? "My dog can't wear anything tacky because it reflects on me," she says. I'm reeling from this craziness.

At the parent Al-Anon meetings I attend, we understand that we are all crazy over how to deal with addiction in our children. Is she or isn't she using? Should I check on her, do an intervention--or let her have the dignity of her own mistakes? Should I cut off his funding because I know he's using? We recite Step Two: Came to believe that a power greater than ourselves could restore us to sanity.

John goes into his office Saturday at 5 pm and stays until after midnight. Craziness again--workoholism.

When I visit the other residents where my mother used to live, my heart aches to see the behaviors of Alzheimer's, Lewy Body, and other forms of dementia. That world lives on, even if I don't go there. The caregivers report to work every day.

Dementia lives on.

Ashes at Last

2008-04-18T12:37:00.000-07:00

I went to pick up Mom's ashes this morning.
The mortuary didn't call me to say her remains were available, but her body was cremated on Wednesday at a crematory 20 miles from here in North Hollywood, so we figured today was the day to try to claim them.
After calling, I drove over to Gates Kingsley and waited as they retrieved them.
While waiting, I surveyed the various brochures and free promotional items.
Wow--a monthly planner, courtesy of your mortuary, along the lines of Psalm 90:12, "Make us realize how short life is...."
I waited in the same room where Emily and I had that difficult interaction with Jerry Morton nine days ago.
I noticed a fake white rose in a small clear vase half-filled with plastic water covered by a layer of dust.
"Here are the cremains," the staff person said, returning. "And here's your permit to carry them."
I signed more papers and walked off with the labeled plastic box inside its knit velour green bag, cradling it in my arms like a baby: the earthly remains of my mother, 7.5 pounds.
I set it on the front seat where she had sat twelve days earlier, where she loved to sit, riding around in my minivan.
At home I found that it was too big for the elegant urn that my parents had brought back from Japan fifty years ago, so I set both the urn and the green bag on my mantlepiece.
What a relief to have her remains back from that mortuary!
In June we will drive them to Colorado and scatter her ashes on our property near Trout Lake, as she had requested.

Odd Moments

2008-04-16T23:28:00.000-07:00

Today is a week after my mother died. I woke up realizing that the storm is over, no guests are in my home.

Jogging on the beach at 8:15 am, I remembered getting that phone call on April 9: "She is having labored breathing."

Fog shrouded the Santa Monica mountains, partially blocked the rising sun.

One dark dorsal fin, then another appeared above the sea 20 yards beyond the Venice breakwater: a pod of seven to ten dolphins. I jogged north on the wet sand to keep up with them.

Ah, to be a dolphin slipping in slow arches through the blue water!

Then, in the grocery store buying milk and tofu, I passed aisle 12 where the Depends are and realized: I will never buy Depends again. Strange to feel sad about that. On the fruit juice aisle: no more buying of eight small cans of V-8.

Tonight at the Al-Anon meeting I shared about making an amends to Mom a few days before she died: "Mom, I'm sorry I pushed you so hard to eat, drink, and take your meds in this last few weeks. It was hard for me to accept that you are done with those things, but I get it now."

Afterward I needed to make a call to Marie in Buenos Aires and wanted to do it by pushing one button on my cell phone, but John insisted that I use the 800 number Marie sent us in an email in the last few weeks.

I cried at that point: why couldn't he be easier on me, bereaved and touchy?

I have papers to grade tonight and want to do a few blog entries. All I really want to do is sleep.

Memories of My Mother

2008-04-14T14:18:00.001-07:00

My reflections at the memorial service for my mother:

I’d like to talk about six qualities of my mother that influenced me most.

1 Her generosity, impulse to help others
One day in Boulder when I was 10 or 12 years old, “I gave away your mittens and the sled to this poor family up in Nederland. But don’t worry, I’ll buy them for you again.”
· Giving her time as a visiting nurse—old man dying of cancer, poor families with 5 kids in apt.
2 Her seriousness about her career as a nurse
· When I was 13 and discovering nail polish, I asked her why she didn’t polish her nails. She laughed and said she had no time for such frivolous things nor for the P.E.O. clubs and parties that were her mother’s life.
· In 1943 she enlisted in the Navy as a nurse, much against the wishes of her parents. She loved being a WAVE, teaching maternity nursing in Bakersfield (she always loved newborns), and later in Baltimore was courageous about leading her students into the ghettos to teach them public health nursing.
· But after retirement at age 60, she did volunteer work with Red Cross and Meals for Wheels, did inspection of nursing homes, served on the board of the PEO Chapter House in Colorado Springs. She also sewed doll clothes and smocked dresses and baby clothes for grandchildren, did needlepoint, even joined PEO. A women’s circle at First Presbyterian Church of Boulder met in her home.
3 Her valuing of education.
· When I was about 11 or 12, she told me, “You need to go as far as you can in education, otherwise you’ll have to work for someone you don’t respect.
· Earning MS from 1958-60 with four children 12 and under.
4 Her mistrust of doctors “often with the comment, “He thought he was God’s gift to women.” Or he didn’t bother to come to the delivery—I had to catch the baby.”
· in her last year or two of dementia, except John, Duncan, her sons and brothers… chased out Roche Vermak and chaplain from hospice… was initially not too friendly to grandsons she hadn’t seen recently
· Get that bad boy out of here! He’s going to eat all our bacon! (Beulah ________ )

5 Her impulse to control others, often with a touch of anxiety
· Like her mother, probably her grandmother Martha Brown
· Fearlessness, fierce determination—buying wall-to-wall carpet herself in 1960s though salesman wanted her husband’s signature
· Keeping Kermit working, moving to Bakerfield, then Baltimore for this purpose, buying and selling homes in those cities.
· Nursing Kermit until his death

She slipped into dementia in the years after his death:
· Reader’s Digest sweepstakes
One day in about 1997 she called me and said, "Hi, this is your mother. Don't tell anyone, but I am going to New York. I got a letter from Reader's Digest today saying I am definitely the winner."
"Oh, that's great. Congratulations. But are you sure? What did the letter say?"
"I have it right here. And I've decided I'm going to wear the red suit with the pearls. But of course I will have to pack a suitcase, and I need to get to Talbot's because I don't have a smart-looking winter coat--"
"Could you just read it to me?"

· Rebuilding her cabin at Trout Lake -- She was unstoppable; she got an architect to draw up plans; she paid for them and was ready to take bids from contractors when we were finally able to convince her that the money she had in savings and the cost of the house didn't match.
· Writing her autobiography

7 Another quality I remember is her concern for family status, for making a positive impression on others—
· When she was writing her life story, she insisted on viewing her marriage and her life as having been lived “happily ever after.” Originally I thought her book would be a family history, but as we were finishing it, I finally accepted that it was going to fall into the genre of romance. It had to be the Adventures of a Telluride Native—struggles and serious problems had to be left out. I found a one-sentence summary of the book: “Kermit and I were married on Oct. 19, 1947. There followed a happy and interesting life blessed by four children.”
· The best stories she left out of her book because they did not reflect well on her or the family. For example, she would often tell me about the Telluride High band competing against other bands in Grand Junction in 1935. They rode there on a school bus; something was wrong with the reed of her clarinet and the band director told her, "You just sit there and do the fingering, but don't you dare make a sound." Once she continued the story further: “My mother went along to ‘look after me,’ but really to do some shopping in Grand Junction. We had no shoe stores or dress shops in Telluride. My friends and I went to Woolworth's, and we were shoplifting--"
"You were shoplifting?" I asked.
"Yes, we were regular delinquents. We were putting things in our purses. I wanted to buy a present for my mother, but it was the Depression, and no one had any money. I saw these beautiful hair combs, the kind you put in your hair when it's done up. They had pearls set in them. I put one in my purse and came outside and showed it to my friends, and then I went back in and got another. When we were home, I gave them to my mother, and she wore them proudly for many years in Telluride--but probably everyone in town knew they had been stolen. Don't put that in the book."

Well, Mother, it’s not in the book, but these things will forever be in our memories of you.

Friends and Family

2008-04-13T06:29:00.000-07:00

Day Three after Mom's departure was much easier.

My cousin Martha arrived from Colorado Springs, and she shared great memories of my mother's kindness to her children while traveling between Boulder and the Springs caring for our grandmother in her declining years. Grandma lived in the P.E.O. Chapter House there, and Mom was on the board of it. In her early sixties, Mom still had no grandchildren and enjoyed buying toys and sewing doll clothes for Martha's three daughters, Theresa, Gayle, and Sarah. She even stayed with the girls when Martha went into labor with her fourth child, Cory.

Sarah came with her and took over care and tube feeding of Celeste, including subcutaneous hydration. She and Martha also sorted and set out Mom's doll collection in the glass cabinet for display as more friends and family arrive. Each granddaughter or niece will be invited to select and keep one of the dolls, long-forbidden behind those glass doors.

Diane, one of Ellen's godmothers, called to say that she and Roz's godmother Judith would be driving down from San Francisco and Watsonville with another old friend, Deborah, whose first daughter was born two weeks before Roz.

At sunset Martha, Sarah, and I went on a beautiful, peaceful walk on the beach and then went to Mom's room to remove the last things--clothes on hangers, thirty bottles of Ensure (what was I thinking?), and kitchen cabinet items.

My daughter Roz arrived home in the late evening along with her chihuahua, Gracie, bringing a wave of happiness. John had driven to Long Beach to meet her Jet Blue flight.

Harried but stoic, John has decided to be the hero of this perfect storm, buying legal pads for To Do lists, making a schedule sheet for train and plane arrivals and departures of family and friends, mowing the lawn, insisting that the Asian chicken salad from Pick Up Stix for Monday noon had to be ordered today and finally doing it himself.

Necessary tasks happened easily: I called a local moving company at 11 am, and by 2 pm three men and a truck had arrived at Mom's room to remove the furniture and most of the boxes.

After a frantic search for the best photo of Mom, I showed up at my local one-hour photo shop at 5 pm asking for a 12 x 20 print to stand on an easel at the memorial service. I had the print an hour later.

The day had its humorous moments, however: at 10 am when Martha and Sarah arrived, I was still in my pajamas, rushing around straightening the house after writing a few blog entries starting at 5:45 am.

At 10:30 the doorbell rang and it was two young girls who started saying something about Merry Maids. I almost said, "No, I can't make any donations today," ready to close the door, before realizing that they had arrived to clean my house. John had ordered house cleaners, and here they were. I was still in my pajamas. When I finally started my bath, the house was bustling with people.

Fortunately, the Merry Maids left two hours later, having cleaned the bathrooms, emptied waste baskets, and vacuumed a bit. John thought they were actually going to clean the hardwood floors, but I wasn't surprised that that job still awaited me.

The hardest moment of the day came when I was skimming this blog, looking for a good photo of my mother. Instead of finding any usable picture, I found myself reading the first few lines of various entries over the past three years, and the full pain of so many difficult days of care swept over me. How did I ever get through it? How did Mom?

I'm so grateful those days are over.

LBD: The Final Plunge

2008-04-12T08:44:00.000-07:00

When Dr. Claudia Kawas of UC Irvine Medical Center was diagnosing Mom in February, 2004, she described a major difference between Alzheimer's Disease and Lewy Body Disease.

"With Alzheimer's," she said, sketching a straight line at a 45-degree angle on a piece of paper, "there's a slow and steady decline toward death. Patients lose short-term and long-term memory, then the ability to talk, and finally the ability to swallow. But with Lewy Body there's usually a long plateau followed by a sudden drop. In the end, these patients also lose the ability to swallow, so they can't eat or drink."

She drew a horizontal line that turned 90 degrees down.

At the time, I couldn't really imagine what she was describing, but now four years later, I have observed the slow decline of many residents on Mom's floor of her assisted-living residence, and in the past four weeks I have witnessed the sudden drop.

On Mom's 89th birthday, Wednesday, March 12, I took her out to lunch and realized for the first time how slow she was in chewing her food and swallowing. She ordered steak and shrimp, did not touch the bites of steak I cut up, managed to eat six or seven shrimp, cut into bites, chewing each for a long time.

I was impatient with that two-hour lunch; she ate only a couple French fries, a spoonful or two of cottage cheese, a bite or two of cornbread. Often the chewed food fell out of her mouth. The easiest thing for her was the tall glass of cold milk; she drank that down and liked it so much.

Two days later at the P.E.O. meeting at my house, she asked to go back to her residence moments after I wheeled her into the living room where the ladies were gathering. When we had refreshments, all the fruit and coffee cake she ate fell out of her mouth onto her blouse. It was embarrassing, and I decided I would not take her to any more of those meetings.

A week later I had placed her on hospice at the advice of her geriatrician (accepting the suggestion she had actually been making for over a year). She was eating less, so we started feeding her and argued with her, "Just take this spoonful!"

A few days later we bought Ensure, and she drank it down hungrily, enjoying it.

But a week later she could only drink it slowly, a sip at a time. We put her on pureed foods and thickener in her liquids. The hospice doctor said she might aspirate some of her liquids into her lungs and then get pneumonia.

The last food she ate was March 31 and April 1, when Connie got her to eat a quarter cup of pureed food each day, spoonful by slow small spoonful.

She was also refusing her pills, but on Thursday a week before her death, she swallowed all of them quickly, and on hearing the report, I warmly congratulated her. "Good, Mom! You took all your meds this morning."

"I did it for Jim," she replied.

Those words told us that the not swallowing was partly inability and partly her own decision that she wasn't going to prolong her life any more by trying to eat and drink.

About that time, when Marnie Reid, the lead caregiver, was trying to get Mom to take her meds, Mom suddenly said to her, "Why?

"It's good for you," Marnie answered.

But Mom calmly told her, "I'm ready." At that, Marnie had to hold back tears.

We gave up on solid foods, pureed foods, and meds; then we gave up on Ensure and only tried to give her milk and water in spoonfuls, then droppers squirted into her mouth for the last five days of her life.

Mom's final plunge took only four weeks--from fairly normal but light eating to no drinking or nourishment at all--and death.

Four years ago Mom's diagnosis was tentative, and we decided to have her brain studied after her death to determine what kind of dementia she had. After all, there are implications for the next generations.

But her sudden decline is proof for me that she indeed had Lewy Body Disease.

Control--or Surrender?

2008-04-12T07:41:00.000-07:00

As the family gathers and the memorial service approaches (3 pm on Monday, April 14), I want everything to go well.

I want the flowers to be beautiful, photos to be displayed well, music and sharing of memories in the service to go well, the cookies and coffee after the service to be appropriate.

I want stacks of my mother's book to be available to those who attend the service. She was so proud of Adventures of a Telluride Native, and I put so much effort into it. I have so many boxes of it in my garage! What better time to get rid of some copies--instead of distributing a little card with her photo and a few facts about her life, a whole book.

I want the buffet at my house beforehand to be relaxed and comfortable, to provide enough appropriate food (plates of cheese, sliced meat, and fruit? or Asian chicken salad from Pick Up Stix?). I want the family gathering in a restaurant after the service to go well.

In fact, I want everyone to be happy in sharing their sense of family as well as their grief--all 20-30 of us and friends who will gather as well. I want to control everything and make everything perfect!

But--uh--maybe I'm going to need to give up that control.

Maybe this is going to be a big week for Al-Anon style acceptance of "the things I cannot change" and recognizing that the only thing I can change is myself. I can give myself peace of mind, no matter what other difficult interactions occur, by accepting what comes and trying to stay close to God for sustenance and guidance.

Today's reading in Courage to Change: One Day at a Time in Al-Anon II, advises "...surrender, accept my discomfort, and pray for guidance" (April 12, p. 103).

These few days will be an excellent opportunity to grow in that ability to surrender, accept discomfort, enjoy the good moments, and pray for guidance.

As Psalm 37 puts it, "Delight in YHWH, and you will be given the desires of your heart.... Rest in YHWH, and wait patiently."

For starters, I can give up having copies of Mom's book available at the service. Emily has strong feelings about not wanting it there.

But for anyone who wants to read about Evelyn's childhood in Telluride and her years as a Navy nurse and professor of nursing, as well as look at early family photos in Telluride, used copies are available from Amazon.com (under Evelyn Gustafson Eggebroten), and new copies can be ordered for $20 from Western Reflections Publishing Company, www.westernreflectionspub.com. The mailing address is Western Reflections Publishing, P.O. Box 1149, Lake City, Colorado 81235.

Adventures of a Telluride Native by Evelyn Gustafson Eggebroten (Boulder, Colorado, 1999).

Don't Die in LA County

2008-04-12T06:21:00.000-07:00

The hardest moments of each day come at dawn, when I can't help remembering where Mom's remains lie at the moment: in a wooden coffin in refrigerated storage at Gates, Kingsley & Gates Moeller Murphy on Arizona Avenue at 20th St. in Santa Monica.

When my Aunt Grace died in Boulder three years ago, her remains were cremated nearby two days later, and we respectfully buried her ashes in the cemetery in Boulder a few days after that.

But as my friend Jerry Morton at Gates, Kingsley informed me and Emily a few days ago, there's a waiting line to be cremated in Los Angeles County. His mortuary uses two crematories, both of which were so much in demand that it would be at least a week until Mom's remains could be cleansed by fire.

On Thursday, the day after she died, he called me at work to report the good news: "I got a cremation for Wednesday!"

At first I was confused; it sounded as if he was going to be cremated. Then I realized I was supposed to respond by congratulating him on his good work at getting one of the last available slots for a week after she died.

Maybe he expected me to say something like, "Oh, that's great! I'm delighted!" I mumbled some kind of thanks.

My brother Jim also has strong feelings about her body lying in a refrigerator for a week: "It's disrespectful to her."

Like the good Norwegians, Danes and Finns that we are ethnically, we want that funeral pyre lit up now. We don't want her body to decay in a casket underground, nor do we want it to languish in a refrigerator. For our comfort, we want ashes and we want to take them to Colorado as soon as possible. Her wishes were that they be scattered near Trout Lake, twelve miles south of Telluride, where she was born.

We will all have more peace when "dust to dust, ashes to ashes" is accomplished.

Yesterday at 5:45 am I woke and could not help thinking about where her fragile body lies, how it looks, her mouth open for air, her eyes closed, her white hair scraggly even after our heroic permanent wave appointment.

I cried out, speaking to Mom instead of about her for the first time since she died: "Oh Mother, I wish your ashes were in Colorado."

I've Grown Accustomed to Your Face

2008-04-11T23:52:00.000-07:00

Both yesterday and today, about 4 pm I caught myself thinking that I should go to Mom's residence and check on her. It's a habit--something I do about that time every day.

I went to her room yesterday to move some things; it was so peaceful to feel myself back in her presence.

Today at about 4 pm it seemed so natural to be going to Mom's residence, so unbelievable that she is not there and that soon I won't be going at all. My sister and her husband and I began sifting through the collection of clothes and jewelry and dolls. It's too soon for me to dismantle her room with all her possessions, but I want the refund of maybe $150 per day,and I want the visiting relatives to see some of the old family photographs and other treasures when they gather at my house.

When I jogged this morning, the lavender ocean was glassy and pink with purple in the pre-dawn light. A lone dolphin swam north following the shore. On the Venice breakwater, two crabs poked their large pinchers at each other, activated by my presence. A cormorant swooped down and briefly held a large crab, which struggled and freed itself.

Those were the moments that sustained me as I struggled to edit the obituary written by my brother Jim so he could send it to the Denver Post and Boulder Camera before he leaves to drive to California; as I discovered that my MSN software is corrupted and not receiving or sending email; as my husband and I labored to transport Mom's heavy, glass-windowed doll cabinet from her room to our house.

One other happy moment: ordering sprays of pink and white flowers on easels for the memorial service. Mom loved pink.

Perfect Storm

2008-04-11T23:16:00.000-07:00

I guess the formula is about 2(Th) + d = Mg.

You take the number of people that usually gather in your family for Thanksgiving, multiply it by 2 or 3, add the death that has just occurred, and come up with the memorial gathering.

Just when my house is at its messiest because I have put so much time into accompanying Mom through hospice, I'm going to have all my relatives arrive, eight or ten of whom have never seen my home?

Then there's the sibling rivalry in Mom's generation; the family history and sibling rivalry in my generation with my two brothers and my sister; then the relationships in my kids' generation.

On the one hand, there is the joy of seeing people again with whom you have shared your entire life history. All seven of my female cousins will be together for the first time since 1966--I'm really excited and grateful for that. Three are flying in from Washington state, one flying from Colorado Springs, and one (who still lives in the Cortez/Mancos area where our family lived one hundred years ago) taking Amtrak from Gallup, New Mexico, to Los Angeles.

On the other hand, long-forgotten hurtful words and deeds of many years ago suddenly resurface between siblings and others. I love each of my immediate and extended family members, and I want to spend time with them; they are willing to spend time and money to gather in order to honor my mother's life--but this comes at a time when each of us is most vulnerable, feeling pain. It's a recipe for difficult interactions.

In addition there's a new kind of Russian roulette: guessing which ones of us will be the next to get Lewy Body Dementia. Mom's father and his mother probably had it; some of us in our generation will also get it.

Meanwhile, we go through the craziness of cleaning the house for a big family gathering.

John asks gingerly, "Would you mind if I hired a housecleaner?"

I nod okay though for 32 years I have resisted paying someone else to do work that I should do my self. I don't have much opinion these days. Call it acceptance, call it lethargy. I'm an observer of life only. The gathering will occur and we will celebrate the family ties, whether or not I have a clean house.

I will work with the housekeepers and try to clean everything up, but the storm will arrive and then be over.

"I take shelter in the shadow of your wings until the storm is over." --Psalm 57:1.

Perspective

2008-04-11T11:38:00.000-07:00

I received this email from the Women's Basketball team coach at Cal State University, Northridge, today. It reminded me that my mother's passing after 89 years is normal and only a little sad. Others, including my bright and responsible student Shanice, are facing real tragedies.

To Whom it may Concern:

This is Staci Shultz, head coach of the Women's Basketball team at CSUN. I am sending an email to the professors of Shanice Howard because she has recently experienced a family tragedy of her younger brother being murdered last week and she has returned to her hometown of San Diego. I have been told that the funeral is tomorrow and she will hopefully be returning to campus and class on Monday, but it is not definite. I am aware that she may have missed some assignments, and hopefully when she returns she can make these assignments up. If there are any problems or concerns feel free to email me and we can hopefully solve them. Please keep Shanice and her family in your blessings.

Staci Shultz
Head Coach
Women's Basketball

To my blog readers: please pray for Shanice and others who are facing the death of a young family member and perhaps even a life deliberately taken by someone else.

Afterward: Day 1

2008-04-10T23:21:00.000-07:00

After teaching, then making motel reservations for arriving family, going to my usual Thursday pm therapist appointment, and fielding phone calls on my cell, I arrived home at 8 pm to find eight messages on the house phone:
1. From Herschel: "What time on Monday is the funeral?"
2. From the mortuary: "Hello, Evelyn, it's Jerry at the mortuary. I just had a rather disturbing call from one of your brothers, and i want to touch bases with you... "
3. "Anne, it's Jerry again. I would like to chat with you this morning."
4. My brother Jim: "Basically, I'm flexible if you guys need to wait another week for this service...."
5. Sharon B.: "Precious Anne, this is Sharon calling. I'm going to try to come on Monday, so I'm very much looking forward to touching you again. Tears and tenderness my dear friend. Much, much care to you and all of your family."
6. Joyce, an Episcopal pastor: "I've heard word from Calvin that your mom passed away. You are in our prayers--I'm sure it will be glorious.
7. Dorothy from P.E.O.: "Hi, Nina called earlier to say Evelyn was at peace, and this is so hard on you... The Lord will give you, you know, strength to do everything. You've taken such good care of your mother--it's just remarkable. You have no regrets--that I can see--from what we've seen of you and Evelyn in our meetings...."
8. My cousin Gene: "We're just trying to find out a little bit about where the service is going to be and when..."

Rest in Peace

2008-04-09T23:47:00.000-07:00

At 7 am I treated myself to a jog on the beach. The air was 45 degrees, the tide as low as I had ever seen it (sea level -.9, the newspaper said). Pelicans flew overhead and sandpipers hopped on the wet sand.
I picked up a paper-thin white sea shell. "As fragile as Mom's life," I thought.
At the Venice breakwater, I saw crabs with red and brown legs sitting in the deep crevices between rocks, just touched by the morning sun. A seal bobbed in the waves just beyond the breakwater. To my right someone took photos as he directed a young man wearing only white briefs into various poses against the sea and rocks.
I was jogging back at 8:15 am when Laquetta called me: "Your mother has labored breathing, and we would like to give her oxygen. Her respiration is 11. I've called hospice."
"Eleven breaths per minute? Oh, okay, yes, give her oxygen if that's what you do at this point," I said. "My sister's on her way, and I'll be there as soon as I can."
I drove home, changed from the waist up and depended on Roz's body mist to take the place of the shower I'd planned on.
"Cat, you're on your own," I shouted as I ran out the door. There would be no tube feeding today until maybe 10 pm, just like yesterday. So much for Dr. Dell's orders to wean her off the tube slowly.
~~~
Mom was indeed breathing with effort, stretching her neck muscles and heaving her shoulders a little when I arrived at 9 am. She had an oxygen mask over her nose.
The private caregiver and home health aide had just given her a sponge bath and were asking me which clothes she should wear today. I found the open-back pink hospital-style nightgown and gave it to them, with lavender bed socks; not a day for real clothes, I decided. They rubbed sweet-smelling body lotion on her as well.
Once she was resting and comfortable, I sat on her bed and held her hand, talking to her.
"It's Anne. I'm here and Emily's coming. Did you sleep well last night? You're having a tough time today, aren't you?"
She did not show any sign of hearing me; her eyes were half open and her mouth gaped as she struggled to breathe.
The hospice nurse, Yael, wanted to give her morphine to ease the troubled breathing, even though morphine would hasten her end.
"Wait for my sister to arrive," I said.
When Emily came, we prayed over her and concluded with the Lord's Prayer. I couldn't see any sign of Mom trying to say it with us, but I trusted that she could hear us even if she couldn't rally enough to speak.
As we ended the prayer, Emily and the hospice nurse Yael noticed that Mom's breathing was slowing still more. One deep breath, a pause with maybe shallow unnoticeable breathing, then finally another deep breath.
"No need for morphine," she said. "She's going very soon."
Then there was a longer pause between breaths.
"That's it," Emily said.
"But she might take another few breaths after a pause," Yael said. "They sometimes do that."
The pause continued.
At 10:15, Yael said, "I'm pronouncing her for 10:05"--the time of her last breath.
We prayed and cried over her and began making phone calls to our brothers, husbands, children.
~~~
I called the UC Irvine Institute for Brain Aging and Dementia because we had agreed to donate her brain to be studied to determine exactly what type of dementia she has and to correlate the symptoms she had so that doctors will be able to identify Lewy Body and other dementias more accurately in the initial stages.
They arrived about noon to take her body to Irvine in order to "harvest" her brain.
Then we made arrangements with the mortuary to pick the body up in Irvine and drive it back to Santa Monica for cremation.
~~~
Meanwhile, Emily and I debated when to have the service, checking with Bill and Jim to determine which days they were available. Bill works as a trauma surgeon in Tacoma this weekend, and he didn't think he could get a substitute. He's also unavailable April 17, 18, 19, and 20, in Texas to teach a class on surgery. Jim will be at a conference in Chicago April 21-25--so we had to choose between Monday, Tuesday, and Wednesday of next week.
We chose Monday, April 14, at 3 pm. Emily made arrangements with Brentwood Presbyterian Church.
~~~
Both Emily and I have meetings scheduled for Monday afternoon or evening; Emily will cancel her church meeting, and I will miss the quarterly EEWC-LA meeting planned for that day 5-7 pm.
I was looking forward to the book discussion on Frank Schaeffer's Crazy for God: How I Grew Up as One of the Elect, Helped found the Religious Right, and Lived to Take All (or Almost All) of it Back. I had expected to be one of about 5-6 people at this meeting--now I will miss it, and it's too late to reschedule. (Yesterday I distributed flyers at Fuller Theological Seminary, and earlier I'd done a mailing.)
~~~
Emily and I retreated to a local restaurant, Gilbert's El Indio, to have lunch. John joined us.
~~~
Afterward we went to the mortuary, Gates Kingsley Gates, to make arrangements. The official, Jerry Morton, said we needed a Durable Medical Power of Attorney to sign papers asking for a cremation, so I pulled a copy of the DMPOA out of my canvas bag full of file folders.
He took one look at it and tossed it back at us: "This is not a California DMPOA. It doesn't specifically mention permission to cremate. We can't use it."
We argued that it gave us the right to dispose of her body (as it did) as well as to make health decisions, but he said something like, "There has to be a California DMPOA," implying that he was only obeying the law.
Mr. Morton said he'd have to mail overnight copies to Bill and Jim, who would have to sign it with a notary watching them, and then mail it back--before any cremation could be done.
Emily, frustrated, left at 4 pm to fight traffic back to Mission Viejo. I sat there and endured more arrangements and conversation with the man, who looked 72 years old and had puffy hands--not long for this world.
"How can any human be expected to deal with arguments this on the same day as watching her mother die?" I wondered.
Then he left the room and came back saying, "I can't get a cremation until Wednesday. Instead of overnight mailing permissions back and forth, maybe your brothers could sign it on Monday."
I called Emily, who okayed this plan.
Meanwhile Emily had called Jim, who said the guy was probably just bullying us. "You should change mortuaries," he told Emily, but she said it would be too much trouble. We had already paid.
"I changed hospices, and that meant starting over again with new people. I can't change mortuaries," I told her.
Jim called Mr. Morton shortly after I left, and later on my phone machine I found a distressed message from the man.
~~~
Afterward I took my Al-Anon books and pamphlets to the room of the Wednesday night parents' meeting and left them there, calling several members to make sure they'd be taken care of.
Then I drove to Point Dume on Westward Beach, one end of Zuma Beach in Malibu. I parked and walked to my favorite place in the cliffs there at the edge of the beach. (Of course, there was some shooting for a film being done there, but they let me pass.)
I walked and delighted in the beauty: pelicans hanging motinless twenty feet over my head, seagulls and black cormorants, crashing surf on huge boulders, sunset and a crescent moon in the western sky.
There's a remote beach there at the very tip of the point, reachable only at low tide and by climbing over and around the boulders. For the first time I climbed out to it, needing to get away from the voices of morticians and caregivers and everyone.
I would have stayed too long, until it was too dark safely to climb back, but Roz called on my cell phone asking for more details on the day and Grandma's passing. She was the one person I wanted to talk to, so that was good. When I lost the signal, I started going back, just to get to the signal, and realized it was already almost too dark to see the rocks and safe places to step.
I called her and then sat at the foot of the huge smooth volcanic intrusion that forms one cliff until 9:30 pm, looking at the stars and thinking about life and death, about my mother no longer on earth, somehow transformed into a distant presence.
Orion, Mars, the moon, and the fading sunset--I could have stayed there happily forever, but the beach guard had said any cars remaining after 10 pm would be locked in.
~~~
I drove home and fed the cat.

A Good Day

2008-04-08T22:21:00.000-07:00

After blogging and grading one set of papers, I went to bed at 4 am and got up shortly after 6 am feeling refreshed. Sometimes I'm so grateful for two hours of sleep.
I left the house at 7:30 am, as did John. Neither one of us did the cat's tube feeding.
"Well, they said to wean it," he said.
I thought to myself, "That's cold turkey, not weaning." I knew I wouldn't be back until evening.
My class went well; I stayed until 2 pm so a student could take a make-up midterm.
Then instead of driving straight to Mom's residence, I drove to Fuller Theological Seminary to pass out flyers for an EEWC meeting this coming Monday. (See www.eewc.com.)
Back in Santa Monica at 4:30 pm, I went directly to Mom's room.
I thanked and dismissed the private caregiver, wanting to sit alone with Mom myself until the evening person arrived at 7 pm.
Mom wasn't talking, just responding with nods to questions. She seemed quiet and maybe bored but okay. I wondered if maybe she'd like to leave the building, get out for a ride to my house.
"Would you like to go to my house?" I asked her.
Her eyes opened wide, her face suddenly expressive and smiling; she waved her arms and tried to talk. It was a clear yes, so I removed her blankets and pillows, pulled the wheelchair in.
As I started to move her legs off the bed to pull her into a sitting position, though, she cried out in pain, the most pain I've been her express in days.
"Oh, I'm sorry," I said. "That's painful for you. Maybe it's not a good idea to go to my house."
I called the meds dispenser, realizing that Mom probably needed morphine. She hadn't had any since noon.
Chhandita gave it to her--0.25 ml in her cheek (5 grams).
Then at 6:15 pm the night caregiver came in, and she and I settled Mom into her bed for the night. I said we would skip the sponge bath, trusting the Home Health Aide in the morning to do it. Clarence Torres, the aide, said she had enjoyed reading Mom's book the previous night during her 12-hour shift. I noticed that the stack of nine books that I had set out had disappeared, so there was none for Clarence to look at tonight.
Though I'd intended just to go home and sleep, I told Clarence I would return with 10 more books.
When I returned and parked in front of the building, I saw a person with an unfamiliar face, very angry looking, parking near me. Inside, she was taking my elevator; I wondered if she was the hospice chaplain, the only hospice person I hadn't met yet.
She turned out to be an LVN, Nellie Davydova, sent from hospice to check up on Mom after the director of Mom's residence called to complain that we hadn't seen a hospice nurse since last Thursday. Being a novice at this hospice thing, I didn't know we were supposed to see the nurse more often. It turned out that she was upset at being delayed in heavy traffic.
The first thing Nellie did was count Mom's respirations, only 12 per minute. Then she scolded me: if her respiration is 12 or below, don't give her morphine. It can slow down the breathing too much.
"Wow, no one told me that!" I said. It was scary--my ignorance could have killed her.
We had been so alone this long weekend--from Thursday at 6 pm until Tuesday at 7:30 pm, no RN or LVN from hospice had paid a visit. The only one we'd seen was this RN on Tuesday evening.
After taking Mom's vitals and making various health arrangements, Nellie left.
At that point I went home and collapsed into bed. No dinner, no nothing. It was 10 pm.

Cat Pee

2008-04-07T23:34:00.000-07:00

When I got home at 8 pm tonight after an hour of setting things up for the night with a new private caregiver 7 pm to 7 am, I felt sad. Mom is drifting away from this world: weaker, not speaking much, sleeping more.

I wanted just to lie down and cry, but little by little, tasks pulled me into a more normal path: taking in the mail, boiling the shrimp so there will be some kind of food available when John gets home at 10 pm, squirting the puree down the cat's feeding tube.

I knew I should eat, but only comfort food seemed possible: two leftover squares of a Hershey's bar, then a smoothie made of strawberries, plain yogurt, and orange juice.

I postponed grading papers and preparing for tomorrow's class in favor of an entry or two on the blog.

Just before sitting down at the computer, however, I carried some clean sheets to the linen closet, where I found the mess I had made at 2 pm: half the sheets in the closet were on the floor because I had pulled them out to find two matching sheets and a pillowcase to take to Mom's residence for the caregiver who will work 7 pm to 7 am.

Wearily I started putting them back in the linen closet until I thought I smelled something wrong. Cat pee? No--but some of the sheets were definitely damp.

I collapsed on the floor amid the sheets and cried.

"I can't do it!" I kept saying. "I can't do it."

Last night after sleeping on a futon next to Mom's bed, getting maybe three plus three hours of sleep, I'd come home planning to take my first bath in two days and sleep. But I decided to feed the cat first, before bathing and putting on clean clothes, and sure enough, the tube clogged and puree squirted out all over me and the cat.

At least I was wearing yesterday's clothes, but I'd had enough. In a burst of energy, I decided to take the cat to the vet before my bath and nap, in order to get that damn feeding tube out. The vet said the tube would be in two weeks at most, and today was the day. If the cat could just go outside during the day and eat its own food, things would be better. Tube feeding a cat while watching Mom starve to death is too much.

But the vet refused to remove the tube. "We have to wean her off the puree," she said, writing down a detailed seven-day plan for the cat's feeding.

I left cursing the cat, drove home, ate a bowl of oatmeal, and took my bath. I called and got an appointment with the nurse practitioner to see her and get the antibiotic extended for the bronchitis/sinusitis I've not quite beaten.

Before rushing out the door to that appointment, I dove into the linen closet for a set of matching sheets. I would not have visited at 4 pm, except that I needed to take a letter to Mom's residence informing them that we would not be renting Mom's room in May. I was worried that each day I delayed would cost us $230 (Mom pays $7000 per month for room, board, and care).

When I delivered the note, however, the office manager told me that 30-day notice wasn't needed in the case of death. "When were you going to tell me this?" I felt like asking.

Anyway, I was dismayed to discover that the cat for whom we have been doing twice-daily feedings and paying exorbitant vet bills had decided to pee all over the linens on the floor. She's been using her litter box pretty well until today; I guess those fresh sheets were just too much of a temptation.

After my pity party, I got up and took my smoothie upstairs to sit down at the computer.

I also set the table for John so he could eat his shrimp and leave me in peace upstairs. When he got home, I used the excuse of grading papers to avoid our usual dinner-time conversation. I didn't feel up to telling him about the cat or my mother, and I knew he'd need support for his difficult day. (Today the Pulitzer Prizes were announced but the LA Times didn't win any. Also the Times had had to print today a lengthy retraction of its Tupac Shakur story two weeks ago--about the worst thing that can happen in journalism.)

I'd like to cancel my class for tomorrow morning, but some students drive an hour or two in order to get to campus. They wouldn't find out until they arrived at the classroom door.

I guess I'll make an attempt to mark their weekly response papers (this time comparing the Gospel of Mary Magdalene and the Gospel According to Luke) and then skim their list of three articles found for their research papers. But it's 11:30 pm, so I will just go to bed if I get sleepy.

Tomorrow's another day.

Drifting Away

2008-04-07T21:41:00.000-07:00

When I arrived at 9:30 pm last night to sleep on a futon next to Mom's bed, she was already sound asleep and didn't know I was there.

I spoke with the two nightshift caregivers, did some catch-up reading in my Al-Anon books of daily reflections, and turned out the light at midnight. At 3 am I woke and called a caregiver to check Mom's Depend and turn her onto her left side; I tried to squirt a dropperful of water into her mouth.

At 6:30 am I woke and folded the futon, gathered my books to go home at 7 am when the caregiver arrived. Mom was still sound asleep, but at 7 am when I was meeting the caregiver and instructing her in the care, Mom stirred.

"Hi, Mom," I said. "It's Anne. How are you doing? This lady Marilyn is going to take care of you today. I'm going to leave now."

"No, don't leave me!" she cried in a panic, grabbing my arm. All night she hadn't known I was here, but now that I was leaving, she was afraid.

I calmed her down and Elisa, the caregiver she knows well, arrived. We decided she might be in pain, and it had been 15 hours since her last morphine, so I squirted o.25 ml into her mouth. It tasted bad. Her mouth gagged open, toothless except for the eight front teeth on the lower jaw, a pitiful sight.

"I love you, Mom," I said, kissing her forehead, and left.

When I returned at 4 pm, she was sitting in her recliner by the window with the curtains wide open to the bright afternoon. Until a week ago she would always demand that the curtains be closed: "It's too bright." But today she was defenseless, either too remote to notice or too weak to make her wishes known.

"Hi Mom, it's Anne," I said, kneeling at her side and putting my face up to hers.

She didn't open her eyes or respond. In fact, her eyes seemed to be growing shut, shorter at each end, the tiny lashes almost invisible. Is it possible that if you keep your eyes closed all the time, the upper and lower lid will start growing together at each end, so the eye is only half as long as it should be?

I kept talking to her and she finally responded a little, her eyes opening a crack but the pupils rolled away, not looking at me.

I called for someone to take her vitals; her pulse was 64, but her blood pressure was only 114 over 59.

"Would you like to lie on your bed for a while?" I asked. "Are you tired of sitting in this chair?"

She nodded. We moved her to lie flat on her bed and made her cozy under the covers.

I left to go to the bank and mail some things to my daughters at the post office, thinking about how weak she had been.

Because she is not eating or drinking, the byproducts of her metabolism are probably building up in her blood; she is being poisoned. My brother Bill, the doctor, says that within 5-7 days her kidneys or liver will fail.

It's a grim vigil, waiting for this to happen, but she appears very peaceful lying in her bed or in her recliner. No struggle or pain is visible.

As a nurse who has shepherded many patients through this process, she understands what is happening. She accepts dying and wants to get through it. That's why she clenches her jaw when we try to squirt a dropperful of water into her mouth. If a caregiver tries to make her sip water or open her mouth to swab it with a tiny wet sponge on a stick, she waves her bony arms fiercely to scratch and fight the attacker.

Clearly, dying is hard work. All we can do is stand by and respect her determination. She's still in control.

Get Me to the Church on Time

2008-04-06T22:44:00.000-07:00

Mom woke at 3:30 am. "Help me! "

"What's wrong, Mom?" I asked, jumping up from the futon. "It's me, Anne."

"Anne, I can't stand myself."

"What? Do you have pain? Where?"

"Everywhere," she answered. "I want to get out."

I gave her a tiny squirt of morphine into her cheek and called a caregiver to check her Depend and help me turn her to face the other direction. I went back to sleep.

At 7 am she woke again. "Mother, I want you!"

"I'm right here," I answered.

"What day is it?" she asked.

"Sunday," I answered. "But you don't have to go to church unless you want to."

"I always go to church," she answered.

I thought about that possibility: actually take her to church, even though she's weak, a few days before her death?

I hadn't brought anything to wear to church; for the night I'd just worn soft jogging pants with a stripe down the side and a turtleneck long-sleeved shirt, very pajama-type clothes but not actual pjs. If she actually tolerates getting dressed, I could stop at home on the way to church and change clothes, I decided.

When Elisa came to Mom's room at 8 am, we managed to get Mom dressed in a soft tan cashmere pullover sweater and velour soft pink pants. I put a pink and tan sweater vest over the sweater. We gave her two eye dropperfuls of water and squirted some morphine into her mouth.

"Would you rather stay here and rest in your recliner or go to church?" I asked.

"Go to church," she said every time I asked her.

I wondered if I could actually take her and get her back without her dying en route. Being alone with her if that happened would be really difficult. She seemed clear about wanting to go, however, so I decided to risk it. At 9:30 Elisa and I lifted her into her wheelchair and I wheeled off toward the elevators and the car.

The other caregivers gaped at me as I wheeled her off. Most of the residents in the "Reminiscence Neighborhood" never leave from day to day, though they are able to walk and in relatively good health, but here she was on hospice, a few days from death, being wheeled off to go to church.

I grinned sheepishly as we left. "Well, the worst it can do is kill her," I said.

There wasn't time for me to go home and change clothes, much less take a shower, so I walked in wearing the clothes I had slept in: navy jogging pants with a red stripe down the side, a white turtleneck shirt, as well as a red hoodie jacket of Mom's.

We arrived at 9:55 am while the pastor was doing the children's message, just before the main sermon. I hoped our arrival would not startle him; after all, my sister Emily had been emailing him on Saturday about possible dates for the memorial service, but now (two Sundays after Easter) I was wheeling the resurrected, ghost-like Evelyn into church.

He seemed to take our arrival okay, but suddenly I saw the tables of bread and wine on four sides of the congregation.

"Oh shit, it's Communion Sunday," I said to myself.

That's not my usual response to this sacrament, but I knew that Mom was not up to receiving Communion today. It would be difficult, perhaps dramatic.

After the sermon, when the time came, the pastors did an especially elaborate version of the bread and grape juice because some of the children were celebrating their first Communion.

The congregation was asked to get up and walk to one of the four tables to get the bread, walk back to their pews and sit down, then take the bread in unison. Because I was boxed into the pew by the wheelchair on the end near the outside aisle, this was a tricky maneuver, but I managed to get out, take a bit of bread, and get back into my seat.

At the proper time I pressed a tiny morsel of it to Mom's lips, but of course she clenched her jaw, refusing all food.

Then we had to get up and out again to collect our little cups of grape juice. I brought back three, one for me, one for the man next to me, and one for Mom. I thought I'd just touch it to her lips as a gesture, but when I did, she spit a bit of yellow phlegm into the cup. Alas--an unholy moment. Catholics and some Protestants make a point of offering eucharist to persons who are dying, but this is not how it's supposed to happen.

Except for this part of the service, Mom got through it without too much noise or fuss. Her eyes were closed and she may have been drifting in and out of sleep, but she had to hear the praise band shouting, "I'm free! I'm free to live! I'm free to praise!"

Afterward I wheeled her out into the line of people shaking hands with the pastors at the door of the church.

"How's she doing?" asked the Reverend Lisa Bove innocently.

"Well, she's had a couple of near-death experiences in the last day or two," I admitted. I didn't say, "She shouldn't be here. My sister will say I'm crazy when I tell her we came to church."

"Let's pray for her," offered the Reverend Charles Svensen, who had been receiving Emily's emails about dates for the memorial service.

"Dear Lord, we pray that you will keep our sister Evelyn safe as she walks this final part of her journey and bring her safely into the glory of your Kingdom," he said, kneeling at her side with Lisa.

"Amen," we all said.

"The pastor prayed for you," I said to Mom then and asked, "Do you know that?" Her eyes had been closed almost the whole time. She nodded yes.

When I reported the scene to Emily later in the day, she commented, "Oh, that's good. You reported her near-death experiences, and he prayed for her to have a full-death experience."

After I lifted her into the car and drove off, I asked, "Would you like any ice cream?" We often stop at Baskin-Robbins after church or after a doctor's appointment.

"Yes," she nodded but didn't take even a tiny spoonful of it when I put it to her lips.

I took her to my house, but she was unable to grab onto the car to help get herself in and out. I had to lift her from her wheelchair and then from the car back to the chair.

Later in my kitchen, she wanted to go back to her residence almost as soon as she arrived.

I took her back at 12:30 pm, grateful that no medical emergencies had occurred, thinking to myself, "She'll probably never get out of her room again."

We had a peaceful afternoon. I read Psalm 23 to her, and when I recited the Lord's Prayer, she tried to join in with me in a faint voice.

At 3:30 pm we gave her a tiny dose of morphine. Her blood pressure was normal today, 128 over 79. At 4 pm a relief caregiver arrived, giving me a break until 8 pm.

Moment of Panic

2008-04-05T23:25:00.000-07:00

Today Mom was almost dead when I arrived at 10 am, hunched over in her wheelchair with her head almost touching her knees, phlegm blocking her throat, her upper plate of false teeth in her lap.

The morning caregivers were nearby busily serving breakfast to their 28 residents, unaware of her condition. Mom had pushed herself away from the table, trying to leave and go back to her room, but she'd only gone about ten feet away.

When I tried to talk to her, she was nonresponsive and as limp as a rag doll. Her eyes were rolled back so only the white was visible.

I called the meds person to take her blood pressure. She couldn't get a reading, but Mom was still breathing lightly and had a pulse. We were all panicked.

"Today's the day," I thought. "I didn't think it would come this soon."

We managed to wheel her back to her room and stretch her out on the bed.

Beulah, one of the caregivers in the dining room, said that Mom had not eaten any breakfast but had coughed up a large glob of yellow phlegm. More phlegm was still in her mouth, but she wouldn't open to let us clean it out.

Finally we got a blood pressure reading of 102 over 61. Her pulse was 74. I called my sister and told her, "It's today, I think." Emily cancelled her plans to do a wedding rehearsal and drove up to see Mom, arriving at 12:30 pm.

Realizing that Mom was not going to get individual supervision from her residence, I called the caregiver agency and changed our request from eight hours a day to twenty-four hours in two shifts of twelve hours, 7 am to 7 pm and then an equal shift at night. Mom is probably going to die in the next six or seven days, but she will not die unattended, hunched over in a wheelchair or alone in her bed at night. Someone will be with her.

The agency would have coerced someone into appearing that night at 7 pm, but I told them we wanted the two twelve-hour shifts to begin on Monday. For the weekend I would stay with Mom overnight as well as during the day, with breaks provided by Emily on Saturday and the scheduled caregiver 4-8 pm on Sunday.

At 2 pm Mom's blood pressure was still 102 over 59. I left Emily in charge until 7 pm, when I would be back to spend the night in Mom's room.

We changed her into her nightgown and tried to squirt a little water into her mouth to freshen it.

Then I said, "Goodnight, Mom. I love you."

"I hate you!" she said vehemently.

"That's okay, you can hate me," I answered. "Is it okay to put music on?"

She nodded. We listened to hymns on the CD player.

Meanwhile, I called my brother Bill to discuss the day with him.

"It would have been an easier death for her to go today from lack of oxygen than to do organ failure," he commented. "There's a lot of suffering with that."

"Yeah, I guess it was kind of pointless to revive her now so she can die in four or five more days," I confessed. "Oh well...."

After talking to the nighttime caregivers. I turned out the light about midnight, sleeping on a futon on the floor.

Caregiver Slavery

2008-04-04T19:04:00.000-07:00

I'd asked Baby to work this weekend, but she called me Friday morning and said that she'd been sick all week and couldn't work on Saturday or Sunday.

I called the new agency, American Angel Caregivers, and asked if they could get anyone to work eight hours on Saturday and Sunday on short notice.

"No problem," said Ana, the owner.

But when I talked with Connie Erni at 4:30 pm, she said she had agreed to come, as a personal favor to Ana, even though she would miss a family birthday party. Her cousins were upset with her for telling them she couldn't come at the last minute.

I realized Connie had been coerced.

"No, don't come on Saturday," I said. "I'll take care of my mother on Saturday. Can you come for eight hours on Sunday?"

"Yes, but I would like to go to church," she said.

We agreed that I would do Sunday morning to mid-afternoon, and Connie would work 4-8 pm.

This was okay with me; I wanted to have some private time with Mom while she was still lucid, without my sister or caregivers present.

End Stage Dementia

2008-04-04T18:01:00.000-07:00

Mom is not doing well.

She's still alert and talking to us; she knows who we are, but she's eating almost nothing and not drinking very much either. We try to spoonfeed her pureed food, but she is not able to swallow it.

The doctor says she is weak; her throat and swallowing muscles are weakening. They told us in 2004 that not being able to swallow is the typical final stage for both Lewy Body Disease, which she has, and for Alzheimer's.

I couldn't really imagine it then--how is it possible to be unable to swallow? But now I see her eager to eat something, taking it in her mouth, but unable to move it to the back of her throat. Instead it falls out or her tongue pushes it out in the attempt to move it. Then in irritation she says, "I don't want any more" and clenches her teeth.

My brother Jim from Denver came out for a visit this week and had three good days with her. We took her to the Santa Monica Pier and to my house to sit in our kitchen and talk and try to eat. When Jim was saying goodby, she told him, "I love you."

She probably will not make it to May 1. We are thinking the service could be as early as April 26 or even April 19. It will be in our church in Santa Monica with our pastor who knows her because I take her every Sunday. He also knows Emily from various pastors meetings.

She is peaceful and aware of her condition. She wants her suffering to end and says, "I just want to go to heaven."

A week ago she was asking how much money she has left; when I told her, she said, "Enough to go to Japan!" I let her talk about making a trip there. But two days ago she said, "I don't think I have the health to go to Japan." "No, I don't think so," I said.

We appreciate your prayers as she makes this final part of her journey.

Jim's Report

2008-04-04T10:47:00.000-07:00

An email from my brother Jim:

"Sorry to send this, but I want to be clear just in case anyone's in denial. Hospice and the care assister both pointed to indications that Mom's body is shutting down: cold feet and extremities, purple in the hands and feet, inability to eat or even drink, swallow or pee, nausea, pain or imagined pain in back, falling feeling, more sleep going into a deep state where she repeats things like "please take me...." or "please just let me die."

If I take what I heard from Hospice, who deal with dying, I give her a few days. She's clearly lost a lot of weight since I saw her last year, but she's still got body weight there -- enough to pain my arm, and lots more than Aunt Grace at the end.

I am planning for her passing; maybe Tom, Greg and I will come out for a memorial (by car).

Thanks to you all for telling me to get my butt out to see her, because we had a nice visit.

Jim

The Cat, On the Other Hand

2008-04-04T08:09:00.000-07:00

Mom is declining, but the cat is doing great.

She's sitting on my lap and purring as I type this.

Twice a day we squirt pureed cat food down Celeste's feeding tube.

Yesterday I took her to the vet, hoping to get the tube removed and return her to eating kibble by herself.

"No!" said Dr. Hernandez. "It can't be removed until she's been eating normally and drinking water for a full week."

"It's been four days, " I argued.

I lost. It takes a village to determine the fate of a cat. Once I enter the vet's door, it's out of my hands. That doctor has taken a hippocratic [sic] oath to serve and protect animals; she wouldn't put the cat to sleep, and now she won't remove the tube.

So I come home from begging Mom to eat and put a can of cat food in the blender with a little water; I corner the cat, place her on a towel on the washing machine, and squirt the food down her tube. I also have to put two pills down, and they get stuck in the tube. I keep trying to push the syringe and clear the blockage until suddenly the cat food spurts all over the wall and me and the washing machine. I wait a couple hours until the clogged pills dissolve and try again.

We could put a gastric tube in Mom, too, but with her dementia she'd probably pull it out. I'm sure she wouldn't like it. Her quality of life is already so low that another six months with a feeding tube would be miserable for her.

Celeste has so much energy back that she's back to her usual tricks: touring the house each day to select which bathroom rug she will do number two on.

My prayer: that she will soon be outside in the daytime to perform that act on the grass.

"I'm Ready"

2008-04-03T23:18:00.000-07:00

This evening Marnie, the lead caregiver for the Reminiscence Neighborhood, was sitting with Mom and trying to get her to take her 5 pm meds and to drink a little milk.

"Why are you doing this?" Mom suddenly asked her. "I'm ready."

"Yes, you are ready, aren't you?" Marnie replied. She stopped pressuring her to take the meds.

A few minutes later Marnie slipped out of her room to cry.

She reported the scene to me later--with tears.

Marnie's own mother died last November of cancer at age 71 in the Philippines. Marnie had visited for a month in the summer, but she could not nurse her during her final months without quitting her job here in the US. Instead she earned money to send to her mother and to build a wonderful memorial plaza with benches and flowers to house her mother's ashes (and later those of other members of the family).

Marnie nurses Mom like her own mother; she came in last Sunday on her day off to care for Mom and try to feed her.

What a gift to us! We can't repay kindness like this; we can only accept it with gratitude.

Dying Clears the Mind

2008-04-03T19:32:00.000-07:00

Dying clears the mind.

In the last four years of Lewy Body Dementia, Mom has often been confused, irritable, forgetful, even hallucinatory.

But today when Jim told Mom he was leaving, her mind was clear.

"Thank you for coming," she said.

There were four of us bustling around the small room: the hospice nurse, the private caregiver, Jim, and me. It was not easy for him to have a private moment with her.

I wasn't sure she understood that this was his final goodby.

"Jim's going to fly back to Denver," I said loudly. "He came here to visit you for three days."

"I know," she said.

"Goodbye, Mom," Jim said, hugging her as well as you can hug someone stretched out in a recliner.

Jim and I walked outside the room and left the hospice nurse and caregiver to continue their work with her. We were talking two minutes later when they called Jim back in.

"She wants to see Jim again," they said. He went back in, and the three of us retreated to give them another few moments together.

"I love you," she said clearly.

"I love you too, Mom," he said.

After a few more words, he left again.

Tremendous presence of mind for someone dying with Lewy Body Dementia--it moved us all to tears.

Jim, her third child--neither oldest nor youngest nor nearest during her last few years--needed to hear this, and she needed to tell him.

Her clarity took our breath away.

Are You My Mother or My Daughter?

2008-03-26T22:02:00.000-07:00

"Are you my mother or my daughter?" Mom sometimes asks me, on a day when she's a bit groggy or confused.
Sometimes I say, "I'm your daughter but right now I'm taking care of you."
Then I change the subject to avoid focusing on her confusion.
Sometimes I don't explain.
Other times she just says, "Mother, you're hurting me!" or "Mother, don't make me do this."
I don't remind her that I'm her daughter.
~~~
But now I'm not sure myself: am I her mother or her daughter?
The boundaries between us are getting so confused as I tell her to eat or take meds, make medical and financial decisions, and sign for her on all legal and medical papers.
I tell people what she wants, what she thinks, what she is saying when her mumbling is too faint to be understood.
I tell my brothers and my sister what she is doing, how she is feeling, what she ate or didn't eat, drank or didn't drink, what meds she refused or took, what her needs are from day to day.
I tell her doctors and the caregivers and the hospice people all these things too.
I sit with her when she sees her therapist, silent as he probes her mood and behavior, until he turns to me and asks for my report. If she gives fanciful answers or starts to tell an unrelated anecdote, I give more accurate answers for her. If she's too sleepy and unresponsive to talk to him, I speak.
One day I wheeled her into the office of my own therapist, unexpectedly. We had driven to UV Irvine for an appointment for her, and I didn't have time to return her to her residence before going to my own therapy appointment. I couldn't leave her in the car.
"Mom, this is my doctor, Deborah," I told her. "Deborah, I misjudged the travel time and had to bring her in with me today."
She listened avidly to my whole session, adding her two bits here and there, trying to take control and make it all about her. (Which, in some sense, it was.)
The next week my therapist had a hundred comments on how controlling she is, how demanding, how I kowtow to her, what good care I take of her, etc.
Anyway, the point is, we are enmeshed.
Ever since I moved her to California in November, 2003, what few boundaries we used to maintain have increasingly dissolved.
If she's happy and healthy, I'm happy.
If she's upset, so am I.
This pattern is the opposite of good thinking on my part. As a codependent person and an Al-Anon member, I am not supposed to let other people's moods or behavior affect my moods or choices, but I'm not good at maintaining my boundaries.
This week that she's starting to decline and being put in hospice, I came down with bronchitis for the first time in ten years or more.
~~~
However, I went to my Al-Anon meeting tonight and got clarity on this issue.
I am her mother, and I need to start acting like it.
I need to take control of the medical decisions, stop waiting to see what she wants or how she behaves, stop trying to bring my brothers and my sister into every decision.
If she asks again, I'll say, "I'm your mother."

Time to Increase Private Caregiver Hours?

2008-03-26T18:30:00.000-07:00

I had a flash of insight just now--or maybe just another dumb idea like putting her on hospice, firing Roze Room, starting up with another hospice, etc.

Maybe we should increase her private caregiver time to 8 hours every day again, not two days a week.

However, I'm not sure how long she can pay for this. Not a year!

I went there at 1:30 pm today and found her lying in bed, facing the wall.

She always begs to be put back to bed in the daytime now... but I don't let her do that.

I got her up into her chair, and today as yesterday she kept saying, "Don't let me fall!"

"You're not falling," I say. "You're in your chair. Here I am."

She grips onto me and doesn't want me to let go or leave. Because her eyes are closed, she doesn't know if I'm there unless she is touching me.

But when I start coughing, she tells me to leave, take care of myself. So she is somewhat sane, and perhaps more sane than I am.

A friend who died 5 years ago told me ten days before dying that she had frequent sensations while in bed of falling (that feeling we all have had in bed a few times, our mind not anchored down by sight or hearing before we rustle the covers and remember where we are).

Mom may be having that sensation. In any case, she's very clingy. And of course, controlling.

What do you think?

Stealth Doctor Explained

2008-03-26T13:15:00.000-07:00

Roze Room called today to see if I indeed want to cancel them.

I said yes, the deed is done. Though the doctor who paid a stealth visit at 6:30 pm last night sounded really kind and accurate in her assessment of Mom's situation, Dr. Rosen and I made the decision at 5:30 pm to move to Skirball Hospice. I talked with Skirball. I can't call them and Dr. Rosen again and tell them we want Roze Room.

Besides, I don't want a hospice that pays two stealth visits in one day, one putting a hold on milk products and the other starting them up again. Neither one called me to let me know the decision, ask for input, explain, etc.

I said I need to talk with this mystery doctor to ask why she didn't call me before, after, or during the visit--and to hear what her assessment of Mom is.

I was wondering if Roze Room sent her over to protect themselves on the last day of their six-day stint as the hospice service. Was she there to correct the stop-milk order, so they wouldn't look so bad? Maybe in case of a lawsuit? Was she intentionally avoiding a conversation with me?

A few hours later Dr. Ana Cartmel called and explained. She said she has 18 years of experience as a hospice physician and teaches physicians and residents.

Last night she had another patient to check on who lives on Mom's floor. After working with the other lady, she realized Mom was nearby and decided to pay an unplanned visit. Because she had to rush off to speak at a nearby facility at 7 pm, she didn't call me afterward, as she normally would have done.

After hearing this, I realized she was a good doctor paying a visit out of kindness. I asked her to tell me what her assessment of Mom was.

"She just looks very weak, tired, but extremely peaceful and also comfortable. Her lungs were not congested--they were totally clear, though earlier in the day the home health aide had listened and found her congested. The aide spoke with Renee, the RN, who placed the "Hold milk products" order and called me afterward.

"It was not a stop order--a hold just for the moment, until someone could assess her further.

"My assessment is that she is probably aspirating frequently on the liquids and maybe on her own saliva. Her whole body is becoming weak, and the muscles in her throat and mouth are weakening as well.

She is probably getting some liquids or foods into her lungs, and this could cause them to sound wet and congested at one time during the day, but totally clear hours later.

Over a period of time I would expect her to get pneumonia with the aspiration, and I expect she will go from this."

"Pneumonia, the angel of mercy," I said. "She always said it was a quick and easy way for elderly to die when they were sick. She was a public health nurse and taught nursing."

"How interesting that this was her profession!" Dr. Cartmel said.

"Yes. Pneumonia, much better than organ failure as a way to die," I said with this new view of her future.

She said a dietary consult should be ordered by the new hospice service--whether to have her on pureed food, etc.

She said to give her all the milk and Ensure she wants--milk is not the cause of her phlegm.

Also: Stop V-8--it's acidic and could be causing her nausea, esp. if given just before meals.

"If I'd known you were such a good doctor, I would perhaps not have changed her from Roze Room," I said. "But the decision is made. I don't want to call Dr. Rosen and have her change the referral she just made to Skirball."

Sad, confusing. Better if I had waited a few days before ending Roze Room.

But still--twice in one day I was not informed about a medical decision (hold milk products, don't hold them) and not given the opportunity to be involved in that decision.

Do Not Kill Her Without My Permission

2008-03-26T07:14:00.001-07:00

Today I expect to sign up with the third hospice company in 24 hours.
I say hospice company, not hospice service, because they are making big bucks off this work via Medicare.
When I sign all the paperwork and talk to the MD, RN, LVN, social worker, chaplain, and home health aides, I will stress one point: DO NOT KILL HER WITHOUT MY PERMISSION.
In other words, do not order any medications or stop any foods or liquids without talking to me first.
The first hospice was Roze Room, which I hired a week ago today. I fired them yesterday.
Roze Room as in sweetness and light, Rest here in this rose-scented room while we kill you.
They were doing fine until they sent an order to stop all milk products, the only form of nourishment Mom has taken in significant amounts during the last week. She just pecks at her solid foods but drinks full glasses of milk or Ensure.
Next I called Vitas, highly recommended by the Filipino caregivers and the Indian med nurse who form the front line in the battle against death when people end up in the Reminiscence Neighborhood. (In this brave new world, we pretend that the Alzheimer's, Lewy Body, and vascular dementia patients can reminisce.)
Vitas as in We are giving you life, not death.
But at 5:30 pm the geriatrics internist called me and said she doesn't refer to Vitas. She's heard bad things about it. She refers only to Roze Room or Skirball.
So after six phone calls and a few faxes, starting to make appointments and get the papers signed with Vitas, I called and cancelled with Vitas.
Dr. Rosen's office faxed a referral to Skirball. I expect to enter negotiations with them today--starting over where I began a week ago: intake papers, medical histories to every conceivable level of person who might visit, appointments, etc.
Skirball as in the name of the Jewish philanthropist who also endowed the Skirball Cultural Center on Mulholland Drive a few miles from here.
I hope it's not Skirball as in Ha ha, got you now, screwball.
I will tell each person I speak to from this agency, DO NOT KILL HER WITHOUT MY PERMISSION.
Do not order morphine without telling me first.
Do not stop her milk products without telling me first.
Call me when a doctor visits--I'm only five minutes away. I will be there. I'd like to consult with any visiting doctor--to give information and receive input.
Call me as many times a day as you want, whenever anybody visits. Just stay in touch with me.

Playing Musical Hospices

2008-03-25T22:10:00.000-07:00

Today we played "musical chairs" with hospice agencies.
We started out with one hospice, Roze Room, completing a week with them.
Next we jumped out of that chair, ran around the circle, and jumped into another hospice, Vitas.
Then the doctor said she doesn't refer to Vitas, doesn't recommend it, so we jumped up and ran around the circle again, landing in Skirball Hospice.
Quite a game.
I spent about eight hours playing this game.

Teetering on 89

2008-03-25T21:11:00.000-07:00

Mom weighed 92 pounds a week ago today, and she has eaten very little since then.
But she looked animated and good Saturday night and Sunday, while Bill was here. She was dressed in her best Lord & Taylor suit, a touch of rouge on her cheeks, string of pearls and earrings.
Yesterday at 2 pm she looked shriveled and unresponsive: a sleepy day after high activity. Normal pattern.
But today when I saw her at 2 pm she looked--well, like death warmed over. Pale, weak, less flesh on her face than the day before.
"She didn't eat anything yesterday or today," JR told me. "I tried three times last night to get her to eat but she refused. She wouldn't drink any milk either." He was apologetic, fearful of being the bearer of bad news. Every day he has to report something to me; yesterday it was that she had refused to let anyone put her false teeth into her mouth.
No food or milk for 48 hrs., I reflected. That would shrink anyone, especially one who is 89 years old and weighs probably 90 or less.
Mom was mentally weaker too; she kept saying, "Don't let me fall!"
"You're just sitting in your chair," I tried to reassure her. "You're not going to fall."
Connie arrived to start her 2 pm to 10 pm shift, and an impromptu meeting began:
JR: "She wouldn't eat or drink anything."
Chhandita, patting her arm gently as if she were on the threshold out of this world, "Poor dear! But she drank a glass of milk for me last night with her meds. Today I used one of these blue sponges on a stick to clean the phlegm out of her mouth--it was sick. I will ask hospice to order more of these and maybe to suction out her mouth."
Connie, also caressing Mom: "Yes, honey, you need to drink some milk. Give her Ensure. She needs that."
The sight of those blue mouth sponges hit me: this is really hospice. When Aunt Grace died, they used these to moisten her mouth because she could no longer drink.
The earlier phone message from the REM director, Laquetta Johnson: "She has phlegm in her throat and could not swallow this morning. No meds, no breakfast or lunch. So I called the hospice RN."
Chhandita: "Hospice faxed an order today to stop all milk and milk products."
Me: "Isn't there milk in Ensure? But she has to have Ensure or something. They can't stop her milk when it's the only thing she will take."
Connie: "I'm going to get the Ensure and see if she'll drink it."
Me: "Yes, ignore the stop milk order. She has to have something. I don't like them to give an order like that without even visiting her to see the phlegm or calling me first to find out it's the only sustenance she's taking. They didn't even order something else like soy milk."
Connie: "Yes, Roze Room. You should go to Vitas. Everyone here is on Vitas; they are very good."
Chhandita: "Right, Vitas is better. Roze Room is not very professional; they don't handle the meds orders well."
Me: "Why didn't you tell me?"
Connie: "Yes, when you said Roze Room was the hospice, I thought 'Oh no!' But I didn't want to say anything because you had chosen it."
Me: "Why didn't you tell me? You both deal with the various hospices, and you both think Roze Room is not good?"
Chhandita: "Yes, Vitas is better."
Connie: "Look, she's drinking it just fine. She likes it. It's Ensure, Evelyn." She shows it to me.
Evelyn: "Don't take it away!"
Me: "Okay, Mom, you can have all you want. Good--strawberry milk. I'm going to call right now and change her hospice."
I made the call but started coughing so badly I had to hang up.
At that point I just left, retreating homeward, not to nap and write a book review but to start three hourse of hospice & health phone calls.
Mom, however, looked better already, greedily sucking the straw in her cup of Ensure.
By 8 pm tonight Connie reported that she had drunk two full bottles of Ensure and looked much better. "I put the video of favorite hymns on her tv, and she was singing with it," she reported.
When you weigh 89-90 pounds, a cup of Ensure is the difference between life and death, fading quickly or sitting comfortably in a recliner singing along with hymns.

And Now I'm Starting to Lose It

2008-03-25T20:56:00.000-07:00

The heirloom ring, a circlet of diamonds surrounding an opal, sits on my computer desk, unused for over a week. Ordinarily I wear it and would especially for Easter and my brother's visit, but I forgot.
Getting out of bed just now at 8:45 pm, I chose two socks from six littered at the side of my bed, left there because for the last three nights I've been too tired to change into pajamas. I just fell into bed and hours later pulled off the socks and tossed them.
I'm on antibiotics for sinusitis and had only four hours of sleep last night, so I went to bed at 7:45 pm.
But then I remembered to call Connie, Mom's caregiver, and tell her that I made a 2 pm appointment with a doctor for tomorrow, so she could come to work at 3 pm.
"Oh yes, Anne, the doctor came to see your mom tonight," she told me.
"Doctor? Which doctor? When?"
"From Roze Room, maybe 6:30 pm. And she said your mom's phlegm is not caused by milk, and we should keep her on Ensure. And she asked, 'Why is she on hospice?'"
"Why didn't you call me, Connie? I could have been there in five minutes. I made an appointment for her to see a doctor tomorrow about her phlegm, because my brother Bill says it could be white tongue, a yeast infection in her mouth. But I'll cancel it if she saw a doctor tonight."
"Oh, Anne, I didn't think of calling you," she replied. "Anyway, she said keep her on milk and Ensure, whatever she asks for, but not V-8. She said the V-8 could be causing her to have an upset stomach, and we give it to her before dinner, so maybe that's why she's not eating."
"Oh--good that she says Ensure is okay, important to know about the V-8. But I cancelled Roze Room today, after I talked with you," I told her. "I'm getting another hospice. But I would have kept Roze Room if I thought they had a good doctor who would take an interest."
After a few more words I hung up, stunned and frustrated.
In the last six days I've seen two RNs and an intake person, giving lengthy medical histories to each; I've had calls from an LVN and a home health aide and narrowly missed a social worker--after several calls--BUT NOW I MISS A DOCTOR.
The doctor seems to have given excellent advice, cancelling the "Stop milk products" order faxed over earlier in the day by someone at the hospice agency.
But she didn't call first or during the visit to tell me she was there and give me to opportunity to give input.
She wanted the medical history--but asked questions from the caregiver, not me.
I am flabbergasted.
The hospice social worker yesterday, after asking if I or my siblings will want bereavement counseling, said something like, "Let us know if there's anything we can do to help you."
"You are not helping me," I retorted in exasperation. "I am trying to go along with this whole hospice thing, but I'm getting calls and deliveries several times per day from various hospice people who want me to be there and sign papers and give medical histories. This is much more work for me than before I put my mother on hospice. I'm on an antibiotic myself and I have to work tomorrow until 2 pm. I can see you after 2 pm or later in the week, but you are not helping me."
"Oh yes, ma'am, I understand how you're feeling," she cooed. "We can meet later, maybe in two weeks or whenever you want."
So now after all these other calls and elaborate arrangements, a doctor pops in and no one calls me.
Claro: this whole hospice thing is going to be extremely difficult--and the problems have nothing to do with grieving. It's just coping with the onslaught of appointments and mixed up exchange of information and conflicting orders from the various MDs, RNs, LVNs, home health aides, social workers, and chaplains.
Stop milk products.
No--give her as much Ensure as she will drink. Or milk. Whatever she wants--except V-8, her stand-by for the last three years.
After that conversation, I had too much adrenalin flowing to go back to bed, even with only four hours of sleep last night.
My happiest hours today were the six I spent driving to campus, teaching, meeting with students, and driving home. I thought I'd make a quick visit to my mother, return home, take a nap, and write a book review.
Instead starting at 2 pm I spent 1 1/2 hrs. with my mother and consulting with Connie and the med nurse, Chhandita, followed by another three hours on the phone cancelling one hospice service, starting another, consulting with my brother Bill and my sister Emily, and negotiating with the office of Mom's geriatrician, Dr. Sonya Rosen, to get a new hospice, finally getting a call from Dr. Rosen.
I had just cancelled with the second hospice of the day, Vitas, when I called Connie tonight and got the news that the hospice doctor had visited. That ended hope of getting to bed early tonight.
Does it sound like my life is out of my control?
Oh, and I forgot to mention that I squirted 20 cc of pureed cat food down my cat's feeding tube before going to bed.
As Step One in AA and Al-Anon says, "We admitted that we were powerless over __________--that our lives had become unmanageable."
Fill in the blank with the addiction of your choice--in this case, over care of my mother as she enters hospice.
My life is out of control for sure.
If it takes a village to raise a child, it seems to take a village to usher someone out of this world as well.
Everyone in the village is talking at once with conflicting advice or orders, unaware of the last few people who have tossed a viewpoint into the mix.
This hospice thing is going to be one hell of a ride--for me as well as for Mom.

A New Trick Every Day

2008-03-24T22:54:00.000-07:00

For someone supposedly on the threshold of death, Mom sure has a lot of tricks up her sleeve.
Every day she has a new way of asserting control over her own life and circumstances, of commandeering the attention and energy of me and the team of caregivers at her residence as well as any stray hospice workers, chapains, or passersby.
In more active days it was throwing her walker down the stairs or biting or striking caregivers.
Now it's more often clamping her mouth shut to refuse meds or food--though the dramatic smashing of drinking glasses a few days ago shows she can still do actively angry things.
Today she refused to let caregivers put her false teeth into her mouth in the morning (her upper plate and partial lower plate)--someting she's never done before.
When I arrived at 2:30 pm, the reports started flying in:
"She refused to let me put her false teeth in!" said JR. "She did not eat or drink any breakfast or lunch!"
But a home health aide from hospice had been there left a note: "She drank some milk and ate grapes."
I didn't remember she was coming... but good. Except--feeding her grapes without teeth in her mouth?
A big no-no.
Mom did not open her eyes when I talked to her. I could tell she was having her normal non-booted up day after a very active day.
I tried to talk to her, got the teeth, managed to get them in her mouth, and instructed them to give her milk at least at dinner.
Then I left to pick up an antibiotic for myself and to figure out what to do with the cat.
I tried to get the cat put to sleep today, but the vet said she's looking great, should not be put to sleep. Instead we should pay for a $500 feeding tube to be installed in her throat.
I left it up to John. He said to go for the tube.
So the cat gets intubation, but Mom's on hospice and neither eating nor drinking--allowed to starve, I guess.
Go figure.

Easter Glory

2008-03-23T21:09:00.000-07:00

Mom shone in all her glory today-- freshly permed hair, lightly rouged cheeks, Lord & Taylor suit with silk rose/black blouse and skirt.
I sent Bill to assist her with breakfast before I picked them up at 10:30 am for the Easter service.
She took her meds, no problem, swallowed right down--after all, Bill was there to watch.
She ate a little of her oatmeal and also her scrambled eggs. Drank milk.
We went to church--she did pretty well.
At my house, though, she couldn't eat much of the waffle with strawberries and whipped cream I gave her.
We put her down for a two hour nap, then got her up for Easter dinner. She ate a little.
Then Bill flew to Las Vegas for his surgeons meeting, and I was left to take her back to her residence.
A long tiring day for her--but a good day. She knew she had had a special day and enjoyed it.

Smashing Glasses

2008-03-22T22:50:00.000-07:00

Never a dull day with Mom.
I sent Ellen to help Grandma eat lunch today, and she did it, though arriving after most of the non-lunch was over. That is, Mom didn't eat much, but Ellen fed her some strawberry ice cream.
"She looked really bad," Ellen said.
Bill flew from Seattle to visit Mom. When he and I arrived at 5 pm, the staff said she was having an agitated day.
"She threw her glass across the table and it smashed right here," Stan said. "There are still bits of glass we missed on the table," he added, pointing.
"She smashed a glass???"
"Yes--just now, and she did one at lunch, and one yesterday."
"She didn't just pour the water or juice out, but smashed the glass?"
"Yes, clear across the table--quite a good arm. Did she ever play baseball?
"Oh no! And she did this three times in the last 24 hours?"
"Yes."
"Are you going to kick her out?"
"No," the caregivers chuckled.
I went to tell Bill, whom Mom had just recognized.
"You're my son Bill."
He tried to feed her, mostly unsuccessfully, trying to get her to lean her head back so the food wouldn't fall out before she swallowed it.
Then we took her out for ice cream, which she wouldn't eat, and for a brief visit to my house.
All in a day.

Attack of the Hospice Team

2008-03-21T23:59:00.000-07:00

Never mind that it's Good Friday, and that I met with two hospice people yesterday, an intake specialist and an RN.
Today I'm fielding phone calls from various other hospice people.
A chaplain wants to visit (on Good Friday morning? should he be at church?).
"Fine, go ahead," I say, "But I will not be there. And she doesn't like men. I don't know if she'll let you in the room."
[Later report: she sent him running.]
While I'm at a Good Friday quiet meditation in church, and a home health aide calls on my cell to say she will visit in the afternoon if I want or Monday if I prefer.
"Visit today if you want," I say, wondering why no one gets Good Friday afternoon off, but it turns out she doesn't want to. It's a long drive across town for only one patient, and she has to pick up her kids from day care, so we agree that she will come on Monday.
Conclusion: hospice does not pause for Jesus' death or perhaps not for death at all. ("I said I could not stop for death so he kindly stopped for me?")
Actually, they are probably underpaid and overworked, the lower working class, chaplain and all.
Hospice is so sad, from every angle.
I visited Mom later in the afternoon.

Act V: Hospice

2008-03-20T22:55:00.000-07:00

Today, after doing the meds and squirt of purree down the cat's throat, and the subcutaneous hydration, I drove to Mom's residence to meet the intake person from Roze Room Hospice.
Signing papers and giving Mom's medical history took over an hour. By the time I got Mom set up in her recliner and left, it was noon.
I had to be back at 3: 30 pm to meet with the hospice RN. Again I gave the health history and we discussed Mom's current needs.
At one point I asked Mom what her needs were.
"Just to go home to Telluride," she said. Right on target.
The discussions took until 6 pm, partly because Jill Murphy volunteered to give Mom an enema. I had explained that Mom had not had a bowel movement for 4-5 days, and someone had suggested that being constipated could cause her not to eat.
After Jill left, I dressed Mom and took her back to the dining room, where I spent 45 minutes trying to get her to eat and drink a little. Earlier she had refused her dinner.
I cut up her chicken and put a bite in her mouth.
She chewed it, then took it out of her mouth and dipped it in her water glass.
Then she put it back in her mouth and continued chewing, with a final result for each bite of either swallowing it or spitting it out. She did the same procedure with a few mushrooms.
With her mashed potatoes, two tiny spoonfuls were all she would eat.
She did drink an entire glass of milk by straw--very slowly.
I realized I could get her to eat if I were willing to spend an hour or two on each meal, breakfast, lunch, and dinner. Or if I could get the staff at her residence to work this hard with trying to get her to eat.
Or we could just accept that she will be eating less and will be dying.
I went directly from the feeding exercise to the Maundy Thursday service at our church.
Home again, I lit a candle and sat in the dark, reflecting on Jesus death, the commandment to love others, and the end of Mom's life.
Then, of course, I ate dinner and worked on the cat.
~~~
"A new commandment I give you, that you love one another; as I have loved you, that you also love one another." John 13:34

Grandma and the Cat

2008-03-19T23:43:00.000-07:00

Celeste, the cat, stopped eating and drinking three weeks ago. She's 16 years old, which translates to age 80 in people years.
When I took her to the vet on Feb. 27, the day before going out of town for a week, Dr. Kenneth Jones ordered a bunch of meds and said she would need 4 oz. of water squirted down her throat at least twice a day, as well as pureed cat food served up in the same manner.
"Fine," I said. I drove away and handed the cat off to Margaret at the Holiday Hotel for Cats.
I even endured the hour of conversation generally required when depositing a cat there, because I knew I was giving them a sick cat that would require extra care. Actually, I felt I was doing Margaret a favor; she loves a crisis with a cat that requires TLC.
She heroically did it all, even taking the cat to the vet during the week and starting hydration.
When I picked up Celeste a week later, however, I had to step in as intensive care nurse.
Margaret gave me detailed instructions on feeding by squirting pureed food down the throat, and I got more instructions and meds in a trip to the vet.
A week later, when I took the cat in again, determined to have her put to sleep, Dr. Jones' partner, Dr. Dell, talked me into giving her another week to start eating. "Her liver and kidneys and heart are fine," she said. "It would be a pity to put her to sleep when we might be able to turn her around."
And then on Monday of this week, March 17, when I was again determined to end this time-consuming charade of cat care, I discovered that Celeste had eaten some of her kibble on her own and drank half a small bowl of water. Oh well. The verdict was to give her another week and to continue the regimen.

So today at 7 am, before going to pick up Mom for her trip to Settimio's Salon, before putting her either in the hospital or on hospice, I had to work on the cat for half an hour.
Here's what I had to administer:

Morning
1. Antibiotic eye drops – one each eye
2. Cyproheptadine ¼ tablet for appetite
3. Lysine nutritional supplement—5 ml in dropper
4. Liquitinic vitamins 1 ml
5. Cefadrops—5 ml in dropper, refrig
6. Interferon—by dropper—in refrig.
7. Methimazole ear gel (for hyper thyroid)
8. Wet cat food mixed with water pureed and squirted down throat
9. 50 ml nutriwater (subcutaneous hydration--by syringe under skin)
10. Injection of Ipogen every other day: Mon Wed Fri Sun Tues

After doing all this to the cat, I had real scruples about just putting Mom on hospice at the first sign of not eating and drinking. Hospice generally means no IVs, no hydration except drinking by mouth.
Why does the cat get three weeks of hydration and squirt-down-the-throat feeding, along with a weekly CBC, but old folks just get put on hospice and allowed to die?
It didn't seem fair.
On the other hand, the cat doesn't have the option of hospice. It's one injection, euthanasia.
Old folks don't get the injection. They have to slowly die by organ failure, usually the kidney and the poison of their own wastes not cleaned from the blood.
With all these reflections, I was getting completely mixed up.
But after seeing Mom's hair rolled up in tight curlers and drenched with permanent wave fluid, I called Dr. Rosen.
"Hi," I said. "We want to wait a day or two on hospice. My brother feels that she should get two liters of saline solution and a CBC and electrolyte report before putting her on hospice."
"Oh, that's fine, I completely understand," replied Dr. Rosen.
"Can she have the saline solution in your office?" I asked.
"No, we don't do IV," she said.
"Should I take her to the ER to have it done?" I asked. "My brother said it would just take a few hours."
"No, in an older person you can't give it that fast. It will take 24 hours. You'll have to hospitalize her to do that because her residence doesn't allow IVs. But I'm certainly willing to admit her," she offered.
So we agreed that she would be admitted ASAP, as soon as a bed could be found.
I didn't say that nothing could happen until we finished at the beauty salon.
Then I called Bill to report that I had arranged for hospitalization.
"Good," he said, "if she needs it. If she's dehydrated. But if she is able to drink, you can probably take care of hydration without hospitalizing her. You and Emily are the ones who are there and can tell how she really is. I'm not there, so I will go along with whatever you decide."
I also talked with Emily, who freaked out when she heard that Bill had recommended hospitalization for rehydration.
"Bill just wants to save her because that's what surgeons do! It will cause her more suffering--she will be upset and disoriented by being moved to the hospital. He did this the last time by saying we had to give her a pacemaker. You and he insisted on that. I'm the youngest and no one thinks I know what I'm talking about. Bill always takes over because he's THE DOCTOR, and you are THE CARETAKER. Neither one of you is really looking at what she wants. She keeps saying, "I want to die." You are just putting her through more suffering."
"Well, Bill said he would defer to you and me. He doesn't want to force her into the hospital if she doesn't need it. What he really wants is the CBC and electrolyte results in order to know if she needs hydration."
Then the hospital called and told me that the bed was ready. Just bring her in after getting her vitals done at her residence.
All these conversations were taking place in Settimio's Salon, where Emily had joined me at noon, among the hairdryers and other clients, while Mom sat under a hairdryer.
"Well, Emily, it's not just Bill. I started having second thoughts about jumping into hospice without first doing a hydration. It's because I spend a half hour every morning and night working on my cat..." I tried to explain the Celeste factor.
Naturally, after talking to Emily for a few minutes, I was convinced that Mom didn't need hospitalization for hydration. And Emily did need to take charge of the situation and have her recommended course of action take priority. We would just take Mom back to her residence and do the best we could to get her to drink, if not eat.
In any case, we would let nature take its course. That's what our culture does with humans, though not with cats, at least not in our socioeconomic bracket. Until the cat has proven itself definitely beyond all hope.
I called the hospital and cancelled the bed I had just accepted.
I called Dr. Rosen: "You know, we're not going to hospitalize her after all. We're going to go ahead and start hospice today and try to get her to drink but not take any drastic measures if she won't drink. I'm so sorry for all this confusion."
"Oh no, I understand completely," she said. "These decisions are always very hard for families."
The hair was dry--Bembe combed it out, teased and sprayed it.
We took Mom back to Ocean View Assisted Living. I called the hospice people and made an appointment for tomorrow at 10 am to do intake papers.
I left Mom in the hands of Emily and the caregiver Connie.
I went to Color Me Mine with my daughter Ellen, 23 years old, and we each chose a ceramic piece and painted it.
I chose a bud vase and painted it with swirls of pink (my mother's favorite color) and kiwi green (my favorite color). I carefully added a bouquet of three purple pansies with yellow hearts. Pansies are one of my mother's favorite flowers--her mother grew them in front of the house on Main Street in Telluride.
Pansies, like violets, for remembrance.
Then we went to the Century City Mall where Ellen bought a pretty white blouse and I bought a BCBG soft green sweater with long front flaps to throw over the shoulder. Actually it's kind of a swaddling sweater.
I needed to treat myself, wrap myself in warm pretty cashmere in memory of this difficult day.
Then Ellen went to her AA meeting and I went to my Al-Anon meeting, where I work on taking care of myself and not being a caretaker of everyone from the cat to Ellen to my mother.
Clearly I have some more work to do.
Back home again, it was time to work on the cat.

Before Death: Beauty

2008-03-19T21:53:00.000-07:00

A week ago I made an appointment for Mom to have a hair cut and permanent wave done at a salon near her residence.
She's been long overdue for this perm. At her birthday events, her long hair stuck out around her head like King Lear.
I put a plastic tiara on her head to hold it down.
~~~
Yesterday when we made the decision to put Mom on hospice, a sane person might have also cancelled the appointment for the perm.
Mom is weak, barely eating or drinking, but I dragged her out for that perm!
The three-hour plus event is a big ordeal: she had her hair washed, cut, put up in fifty tiny curling pins, soaked in the permanent wave fluid for twenty minutes, rinsed, soaked in a neutralizing fluid, rinsed, set in rollers. Then she had to sit under a hair dryer for half an hour or more and finally have her hair combed, teased, and sprayed.
This is not easy for a healthy person; for someone dying, it was almost torture.
"Take me home! I just want to go home!" she kept saying.
"No, it's just a while longer. You want to be beautiful," I told her and the hairdresser, Bembe, a Mongolian American and senior citizen, told her. (She talked about her own mother, 98 years old and living with Bembe, walking around, cooking a bit for herself.)
"No, I don't want to be beautiful. I just want to die. Leave me alone," Mom kept begging.
At some points she was so weak, almost faint, that I was afraid she might die in the hairdresser's chair. I regretted starting this, especially since she might only live a few more weeks.
I was still debating hospital or hospice with my brother Bill and sister Emily by phone.
The hospice and hospital were calling me.
"I'll bring her over soon," I told the hospital.
"I'll call you back soon," I told the hospice.
To neither one did I admit, "She's at the beauty salon. I can't admit her until we finish her perm, if she survives it."
Somehow we finished it.
Emily arrived, and we took her back to her residence.
Whatever comes, she will at least look good.
Now that's important, isn't it?

The Debate: Hospice or Not?

2008-03-18T22:56:00.000-07:00

I called Emily to report that I had indeed given permission to put Mom on hospice.
She sent emails to our brothers, Bill near Tacoma, WA, and Jim near Denver.
After informing the staff at her residence, I spent the next 2-3 hours dealing with my grief.
But at 8:30 pm it occurred to me that our brothers deserved more than an email.
I called Bill to report to him and discuss the options. He hadn't read the email and was taken by surprise.
He's a general surgeon working at an Army hospital, and he wanted to know what her CBC was and her electrolyte levels.
"When were they last done?" he asked.
"I don't know... maybe last fall," I answered.
"Well, without that information we don't know if this is an acute crisis that could be turned around with hydration or whether it is a slow decline," he continued. "You should get her blood drawn to determine those things."
"The doctor did say that putting her in the hospital for hydration was the other option," I reflected. "We could still do that if you think it would be better."
"Here's why doctors order hospice," Bill said. "They're thinking, 'How do I let this patient die without making the family upset?' So they order hospice, mostly to take care of the family."
"Oh," I said.
"What kind of doctor is it? An internist?"
"She's a gerontologist," I said.
"Oh, of course she would put Mom on hospice then," Bill said. "They're just waiting for people to die. That's what they do." He was thinking of the contrast between surgeons like himself who do everything they can to save lives vs. gerontologists who accept death when it approaches, perhaps even too soon.
"If people get too dehydrated, they can't drink even if they want to," he continued. "Their throat gets flattened. But even then you can give them a Dovhoff tube down their nose into their stomach, not for food, just for water."
"She had nasal intubation to breathe when she had that allergic reaction and her throat swelled up," I said. "That's a pretty bad procedure. I don't think she'd like it."
"After it's done, people don't even notice that they have the tube in," he said. "But if they quit taking oral liquids and have no other means of hydration, people get confused and weak. First the kidneys fail--it takes 3-6 days for kidneys to fail. If they take no liquids at all for two days in a row, then they are not able to take them. Their creatinine goes up. They become comatose from the uremia."
"You mean they are poisoned by the things not cleaned out of their blood?" I asked.
"Yes--it's a terrible way to die," he said. "But if you give her two liters of saline solution by IV, you might get her eating and drinking again."
"Well, we could do that," I agreed.
"You can have it done in the doctor's office," he said.
"No, she doesn't do that in her office. But maybe I could take her to the ER and have it done there," I continued.
"Yeah, that should be just a few hours," he said. "You wouldn't even have to hospitalize her."
"Well, I'll call the doctor in the morning," I said. "But she has an appointment for a perm at 9:30 am and that will take until 12:30 0r later. We couldn't do it until after that."
"You don't have to hydrate her if you feel she can drink enough fluids on her own," Bill said. "You can go ahead and put her on hospice and just hope that she can continue to eat and drink for as long as possible."
"Yes, she did drink some milk this evening," I said. "I think she can still drink some."
So I hung up and lay awake for part of the night wondering whether to do hospice as Emily and I had agreed or to postpone it a day and first put her in the hospital for hydration.

Surprised by Hospice

2008-03-18T22:00:00.000-07:00

I stopped by my mother's residence for a brief visit at about 2 pm, not planning to stay long because on Tuesdays she has a caregiver 2-10 pm. I took a few Easter cards and cards for upcoming birthdays for her to sign.
But the staff flagged me down with alarm: "She didn't eat any breakfast or lunch, and she's refusing liquids too. She won't drink V-8 or orange juice."
I tried to get her to drink and found it to be true. She was refusing meds and liquids.
"Okay, I'll make an appointment with her doctor," I said, thinking it would be within a day or two.
"Ask for an appetite stimulant," suggested Chandita, the meds dispenser.
"Okay, that's a good idea," I agreed.
At 3 pm I called for an appointment, saying she was refusing to eat or drink, and the receptionist offered me an appointment at 4 pm.
So much for the rest of my day, I figured.
I called my sister Emily to consult with her: "I know the doctor will urge hospice," I told her. "She suggested it a year ago and six months ago."
"Well, maybe it's time," Emily said. "I'll support you if you feel the time has come to start hospice."
Indeed, shortly after 4 pm Dr. Rosen was laying out our choices: either hospitalize her in order to do hydration and blood work as well as x-rays to determine why she's not eating--or accept her decline and make her comfortable by using the services of hospice while keeping her in her familiar surroundings.
The main indicator was that she weighed only 92 pounds--down from 102 on January 16. She had lost ten pounds in two months.
The best choice was clear: hospice.
Dr. Rosen wrote out a referral to Roze Room Hospice, saying: "End stage dementia with functional decline and weight loss."
I wheeled Mom back to her residence shocked by this sudden change.
Sadness filled me: we had just celebrated her 89th birthday a week earlier. I'd been wondering how to make her money stretch out another 2-3 years. And now she might have just 3-6 months... or less.

Both Mom & the Cat

2008-03-17T21:31:00.000-07:00

Strange that both Mom and the cat stopped eating and drinking about the same time.
I wanted to put the cat to sleep, but the vet talked me into letting her live and doing every possible measure: subcutaneous hydration, pureed food down the throat.
I'm trying to help Mom to live as long as possible too.
After struggling with the cat to get pills down her throat, I go visit Mom.
She spits out her meds, won't eat or drink.
I get impatient with Mom because I've just fought with the cat.
I can't do both of these things much longer.
I spent two hours today on Mom, 1/1/2 hours at the vet's office, not counting the hour or more morning and evening to do all the cat's intensive care.
I'm crazy.
I guess I have a sign printed on my forehead: SUCKER.
I do whatever anyone asks, at whatever cost to myself.
I've got to stop this.

Forgetting How To Eat

2008-03-16T19:55:00.000-07:00

I pick up the crumbs of my day after spending 9:15 am to 2:15 pm taking care of my mother.
Devastating.
Debilitating.
I lay in bed for an hour after getting home from taking her back to Ocean View Assisted Living. I needed to recharge my batteries.
~~~
The day begins with squirting food and meds down the cat's throat, an increasingly difficult struggle as the cat gets healthier and more able to fight me off. There's cat food all over one leg of my pajamas, where I hold her down, wrapped in a towel, for the feeding.
Then I do the subcutaneous hydration.
After that I can take and shower and get dressed.
I arrive at 9:15 to take Mom to church for Palm Sunday, hoping she'd had her meds so we could roll out the door.
No chance.
"I waited until you came," Chhandita says. "She won't take them for me."
So we begin to work on the meds. Mom spits the first capsule out of her mouth when Chhandita puts it in.
For me, this is a replay of the scene an hour ago with the cat. My patience is already gone so early in the morning.
"If you don't take your pills, you're not going to church," I say. "You can just go back to your chair and sit in this room."
"I want to go to church," she whimpers.
"Then take your meds!" I yell at her. "We're not going anywhere unless you can swallow those pills."
She then swallows each down, followed by juice. Twenty minutes pass before we start toward the elevator.
In the car, Mom is crying and trying to defend herself against my anger.
Usually I write down the things she says, but this time I just drive on, trying to ignore her incoherent babbling.
"I just want to go to heaven," she repeats. "I'll be fine there. They know I'm a good girl."
~~~
She mumbles and hums during church, inappropriately. Time to stop taking her to church, I think to myself, if she's going to bother other people.
~~~
She eats very little afterward at my house, though I serve her one of her favorite foods, a waffle. It falls out of her mouth. She has forgotten how to eat. Somehow she gets down a few bites, half a banana, some grapes.
"Time to go back," I say finally.
"Oh, so you want to get rid of me," she says.
It's an automatic response, I tell myself.
Anytime I say "Time to go back," she will say "So you're getting rid of me."
Don't take it personally.
It's so hard to spend hours with her and then be accused of not caring when I finally take her back. She hooks me again and again, raising the ever-present guilt and anger.
I put her in the car and we drive back.
After I help her out of the car and into the wheelchair, she suddenly vomits up everything she had eaten for lunch. All over her nice clothes. I scoop it up, clean her up, wearily push her back to her room. There I change her shirt, clean her face, give her gum to chew.
"I'm going now," I say finally.
"You're getting rid of me."
When I get home, I collapse in tears for an hour.

"Is That Why You're Getting Rid of Me?"

2008-03-15T21:07:00.000-07:00

I was planning only a short visit today because I had put so many hours into Mom and the P.E.O. meeting yesterday.

I went over about 4 pm, hoping to walk her to dinner and leave.

"Hi, Mom, how are you?"

"Oh Anne, thank goodness you came. Now can we go to your house?"

"Well, if you want to. We were there yesterday for the P.E.O. meeting, remember?"

"Yes, that was very nice. Can we go now?"

So I took her to my house.

She didn't say "I want to go back" shortly after arriving, as she usually does.

Instead she sat there, eating a bite or two of what I placed in front of her.

I brought the dog in. I put the dog out.

I turned on the tv. I turned it off.

Finally I said, "It's time to go now. I need to work on the taxes. "

"Is that why you're getting rid of me?" she asked.

Yes, I thought, I need do something besides take care of you and the cat, which requires a half hour morning and evening of forced feeding, meds, and subcutaneous hydration.

I said, "I finished your taxes and sent them to the tax lady, but now I need to do mine."

But her words hit me like a hurricane: You don't love me. I am a chore. You just want to get rid of me.

Never mind that I just spent eight hours yesterday on you and the P.E.O. meeting.

Today you want to stay at my house all evening and not go back.

It's never enough.

When I got back from taking her to her residence, I cried.

Hosting the P.E.O. Meeting

2008-03-14T20:59:00.000-07:00

I got up early, vacuumed the house, set out a table cloth and St. Patrick's Day plates, went to buy a cake for the P.E.O. meeting at my house, and then picked up Mom from her residence.
When I got back to the house, several ladies were parked out in front waiting.
I let them in, brought Mom into the house in her wheelchair, and began hosting the P.E.O. sisters.
After a few initial greetings, Mom said, "I want to go back now."
"No, we're going to have the P.E.O. meeting," I said. "I can't take you back. Here are some strawberries and other fruit."
I plied her with food; we sang Happy Birthday and she blew out one candle.
But the food fell out of her mouth onto her blouse. She was hunched over and not swallowing after chewing. It just fell out.
The meeting began. I couldn't attend to her and the ladies at once.
One of the ladies lost the keys to her car, so we spent most of the morning searching the street, the car, the lawns and sidewalks and the house for her keys.
It was a disaster.
Finally it was over and I took Mom back to Ocean View Assisted Living.
Never again, I said to myself.
She's not good enough to sit through a meeting like that. It's pointless.
I am trying to push her toward life, but she is declining.
I need to accept that reality and stop all this effort.

The Day After

2008-03-13T20:54:00.000-07:00

When I stopped by to check on Mom today, she was in complete sleep mode, the typical sleepy day that occurs after a heavy day of social interaction.
She did not open her eyes when I greeted her, barely spoke to me.
I learned that Emily and her son Duncan Andrew had visited earlier in the day.
Too bad that he had seen her in this condition instead of at her alert, communicative best as she was yesterday. He returns to the Naval Academy in Anapolis and probably won't see his grandmother again before she dies.
"She's like a skeleton," he told Emily.
Mom can look very bad when she's out of it.

Happy Birthday: 89 Years

2008-03-12T21:18:00.000-07:00

Not Getting Any Attention

2008-02-27T21:30:00.000-08:00

Again I didn't get to Ocean View to visit Mom until about 6:30 pm. I've been busy preparing to leave for a week's trip to the East coast. Today I took the cat to the vet and the Holiday Hotel for cats. (The cat had suddenly stopped eating and was diagnosed with hyperthyroid disease, so I was grateful that Margaret at the hotel even took her.)
When I arrived to visit Mom, she was sitting in her recliner in her nightgown, covered with blankets, her eyes closed. I always kneel on the floor and put my face in front of hers to talk with her.
"Hi, Mom! How are you?" I asked cheerily.
"Poorly!" she said, opening her eyes a little.
"Poorly? Why? What's been happening?"
"I'm not getting any attention," she snapped back, accusing me.
"Oh, I see. But Connie was here today. She took you downstairs to listen to the music," I argued.
"Yes, but I just want to see you."
"And you got a bag of popcorn to eat while you were there," I continued, having already had brief report from Connie.
"Yes."
"Well, I don't think you are doing so poorly," I said. "You look good to me."
After a bit more chat, I broke the news to her:
"I'm going to visit Ellen and check on her," I said. "In Connecticut, where she's in college again."
"So you're going to leave me," she commented.
"Yes, I will be gone for a week. But Connie and the others here will take good care of you," I continued.
I fussed over her, gave her some grapes, put some sugarless candy from the cupboard into her candy jar.
I wrote a check for a cash advance to Connie, so she can pay her property tax and not lose the home she bought a year ago with her husband, now unemployed. I'm paying her for the next 15 weeks. We did this on about December 1 too. She offered to visit Mom more often, because she needs the money, but I said no because Mom is running out of money. Her monthly income doesn't cover the cost of living at Sunrise. She needs an extra $2-3,000 per month from the money she has from selling her home in Boulder, but that amount is running low now.
I left typed notes with phone numbers and contact information to reach my sister and brothers on the door and in the offices of the Reminiscence Neighborhood and of the medical supervisor.
Then I left.
I will try to visit her tomorrow before leaving for the airport, but realisitically, I don't expect that to happen.

Can I Live With You?

2008-02-26T21:16:00.000-08:00

I stopped to visit Mom today about 6 pm, after taking the dog and cat to the vet, after teaching in the morning and staying on campus until 3 pm so two students could make up the midterm they missed last week.

Connie, the private caregiver, was with Mom, as she is on Tuesdays 2-10 pm and Wednesdays 5pm - 1 am. I greeted them both. Mom was sitting in her recliner watching the musical Annie on her television.

"How are you?" I began. "Did you have your dinner tonight?"

"Yes, but I'd like to come up to your house for supper," Mom said. "Can I do that? Can I take Connie and live with you? I don't like being here. I'd rather be with you."

Wham--all these demands, when I was doing a very brief visit and preparing to leave for a week to travel to the East coast.

"Well, Connie can't live at my house. She has a husband and two kids. She doesn't want to leave them," I began.

"But I could live with you," she continued.

"Well, I don't think that would work very well. I'd have to be there all the time to take care of you and cook three nice meals a day, like the ones they give you here. I couldn't take you to the bathroom all day and do your bath every night. I have to teach my classes," I tried to explain.

"Oh! Well, I guess you can't. Then I want to go to the Chapter House where my mother lived," she said.

"That's in Colorado, a long way from me. I'd have to move to Colorado, and I can't do that."

She pretty much accepted these realities, once reminded of them.

But her initial joy over her new plan--moving in with me--was so touching. I felt bad that actually I am planning to be away for a week... she will be abandoned, from her point of view.

In Search of Song

2008-02-20T23:00:00.000-08:00

I succeeded in another brief visit today.
Hearing singing on the first floor at 4 pm, I rushed her down to hear it, but the 3 pm weekly program had just ended.
We got popcorn and the local newspaper and returned to her floor.
Then I helped her to walk 100 feet with her walker from her room to the dining area. She can still walk pretty well, but I stand with my hand on her back to make sure she doesn't lose her balance and fall backward. I pull the wheelchair behind me because sometimes she walks fifty feet or less and has to sit down.
For several months I wasn't making her walk--she walked only once a week or less with Connie. But now I am trying to make sure she continues to walk, so she won't forget how and so her turned in feet will straighten out a little.
I left by 5 pm, saying as I always do, "I'll see you tomorrow at 2 pm."
I used to say the actual time I expect to arrive--maybe 4 pm or 11 am--but now I always say "2 pm" and she feels secure in this.

Popcorn

2008-02-19T23:27:00.000-08:00

One of the surviving pleasures in Mom's life is a bag of popcorn.
Her residence has a popcorn machine in the lobby, and whenever she passes it, she demands some, though she often can't remember the word.
"I want some of that candy," she will say.
For a couple of years, she wasn't allowed to eat popcorn because her swallowing has become less competent; her potential for choking is great. But because she loves the popcorn so much, I gave in and started letting her have it again.
I think she'd rather die by asphyxiation from popcorn than never have it.
I came to visit her briefly even though her private caregiver, Connie, came today for 8 hrs.
I wheeled her down to the first floor, got her some popcorn, and wheeled her right back to her own floor, where I handed her into the care of Connie.
She was content with that, though at first as always she had demanded to be taken to my house.
I succeeded with my plan.

Knocking Things Over

2008-02-18T23:08:00.000-08:00

I arrived at Mom's residence at 4:30 pm, determined to keep my cool and spend no more than an hour of my day. I planned to take her to my house for some leftover spaghetti dinner and return her.
"How's everything?" I asked a caregiver, cheerily.
"Well, okay... she did knock over her V-8," Claudia began.
"At the dinner table? On purpose?" I asked.
"Yes, we had to change the tablecloth, and then she poured out her water on the table too."
"Oh dear!" I said, thanking Claudia for her work in cleaning up the mess.
Another big protest by Mom, a display of her feelings of anger over having to be at this residence and not getting enough attention. It was a hook she has used before; on other days it has caused me to feel upset and embarrassed.
But this time it didn't bother me. It even seemed funny--and I knew it was only because I had arrived so determined not to be pulled into her drama that I still felt calm.
Options: scold her and tell her that I would not take her to my house today because she did that? Or ignore it and take her to my house as planned?
I decided that scolding and expecting her to remember or change her behavior would be craziness on my part.
I took her to my house and gave her the spaghetti dinner (from the freezer, the spaghetti with sauce from her favorite restaurant, The Blue Parrot Cafe in Louisville, near Boulder).
She enjoyed it, and I took her back.
All within the space of an hour, as planned.

Who's the Crazy One?

2008-02-18T09:56:00.000-08:00

Let's see here: Mom has Lewy Body Dementia and lives on the secure floor of an assisted living facility, along with Alzheimer's patients and others with vascular dementia or similar types of impairment.
This is not a fun place to live, not a good stage of life to be in--almost 89 years old, approaching death--but I try to make her happy.
I think that my daily visits and the excursions on which I take her should make her content with her situation, along with the medications. She takes Zoloft for depression and Seroquel, an anti-anxiety med.
She's depressed and irritable, but I keep trying to fix everything for her.
I think, "If I do x, y, and z, she will be content and enjoy her remaining days."
Duh-- it's impossible. She's not going to be happy with her limited, repetitive daily cycle.
She's the sane one, depressed about it all. She's going to be unhappy and tell me about it.
I'm in denial, losing my sanity over trying to interact with her, take her out, cheer her up.
I need to accept reality and stop trying.
For my own sanity, I need to stay away from her or at least limit my time with her to one hour per day. These 5-6 hour excursions are killers. She says things that hook me into feeling bad for her, trying harder to spend time with her and take care of her.
But no matter what I do, she is still going to be gloomy about going back to Ocean View Assisted Living and being just another of the thirty crazy old people on her floor.
What she would really like is for me to take her into my home and spend 24 hours per day taking care of her: meals, bathroom trips, bathing, conversation, excursions, medical visits.
I can't do that, and even the amount of time I'm giving her right now is debilitating to my emotional state and my energy to carry out the other work of my life.
I don't know how people do it who are caring for an LBD parent or spouse in their own home, with or without help.
I do know that all of them sooner or later give up and place their family member in a care facility.

Comments on this subject by Melody Beattie in The Language of Letting Go (The Hazelden Foundation, 1990):
We can learn not to get hooked into unhealthy, self-defeating behaviors in relationships--behaviors such as caretaking, controlling, discounting ourselves, and believing lies.
We can learn to watch for and identify hooks, and choose not to allow ourselves to be hooked.
Often, people do things consciously or without thinking that pull us into a series of our self-defeating behaviors we call codependency. More often than not, these hooks can be almost deliberate, and the results predictable.

"You Ditched Me"

2008-02-17T19:30:00.000-08:00

This morning I tip-toed into the Reminiscence Neighborhood, nervous about what I might find. Would it be like Friday when Mom hadn't had breakfast and was refusing her meds? Or would I be able to take her out to church with a minimum of fuss?
I found her settled into her recliner in her room. Good! She was done with breakfast, though she looked a bit agitated. Someone had applied lipstick all around her mouth in a sloppy way--I would have to fix that before we left.
"Hi, Mom, it's Anne. Are you ready for church?" I asked, pushing the recliner's control to make her sit up and to transfer her to the wheelchair.
"You ditched me yesterday!" she hissed. "I was going to watch the news with you, how John is winning, but you never came." [Note: she still thinks he's running for President.]
"What?"
"I cried all night. Oh well, it doesn't matter now."
I was stunned and felt tears come to my eyes. Not only did she not remember that I had come yesterday, but she thought I had "ditched" her.
"Don't you remember that we went and got a Nestle's Crunch?" I reminded her. "I came to see you yesterday."
"Oh yes, I remember. But you left without saying goodbye. You ditched me."
I didn't even argue it, just moved her into the wheelchair.
"My back is bare!" she cried, so I adjusted her blouse and sweater to make sure her waist was still covered after the transfer.
"Here's your purse," I said numbly.
"I wish you'd let me have your purse. You have nicer purses."
"Me? You don't like my canvas bags."
"You went away and your never came back. I cried all night--I did!"
I didn't answer. All that time I had given her yesterday, apparently to naught.
"I forgive you now," she continued. "I thought we could all watch tv together, but I just saw it myself, down in the dungeon."
Okay, I told myself, that's hallucination, thinking some place here is a dungeon.
"You said you'd come back, that we could look at it together, how John was winning, but you never did. I cried myself to sleep."
By now we had completed the trip by two elevators to the basement parking garage, and I was lifting her into the car.
We drove silently and without much traffic to San Marino Community Church where a friend of mine, Karen Berns, was preaching today. I turned the classical music up high so there'd be something to listen to. I didn't feel like talking, and I needed to distract her from this track she was on.
We arrived early for the service, and Mom was cooperative during it, nodding her head to the left and right with the rhythm of the hymns being sung.
After the service Karen and her husband invited us to go out to lunch, but I declined. Mom is not patient with sitting in a restaurant; I wouldn't be able to enjoy it.
Instead I drove her to the Huntington Library, just a few blocks away, thinking it would brighten her day as well as mine to wheel through the gardens, maybe take a peek at the Ellesmere Chaucer manuscript.
The roses weren't blooming, but I pushed her wheelchair through groves of huge camellia bushes and trees.
"I want one of them," she said, so I picked up fallen blossoms as we walked; she had a lap full of various kinds: luscious magenta, striped pink and white, single-petal red with huge stamens.
We spent maybe an hour there until she demanded to go home and we started back. I got her a butter pecan ice cream cone and myself mint chocolate chip.
On the way back, traffic stopped: I forgot that people would be driving toward the beach on this holiday weekend. Though I left the freeway to take city streets, our driving time was still doubled; as we neared her residence it was almost 4 pm.
"Now let's go to your house," she said, unaware that her six hours with me today was the limit.
I sat there with my hands on the steering wheel unsure how to explain to her that she was returning to Ocean View Assisted Living.
"No, the sun is going down," I finally said. "It's time to go back to Ocean View."
She started to argue with me, but I put my hands over my ears as I drove. It was just too painful to listen to more demands. We drove into the parking garage.
"My back is bare," she screeched as I eased her from the front carseat into her wheelchair, but actually it wasn't bare. I had carefully pulled the blouse and sweater down before the movement. "I hate you!" I thought to myself. "You say this even when your back is covered and warm. Your demands never stop."
"I love you," she said to me as if she had read my negative thoughts. "Thank you for everything you do."
I didn't answer. Somehow the correct reply just would not come out of my mouth.
I arrived home at 4:15 pm and, just like Friday, required more than an hour of rest and reflection before feeling able to start any other task.
Spending six hours with her exhausts me.
~~~
I made three decisions:
1) I will not take her out of Santa Irena again. Not to Women-Church in Claremont next week, not anywhere.
2) She will stay on a narrow track: her residence, church, my house--well, maybe 2-3 more P.E.O. meetings before I pull that plug too. That's all she really wants: to be at my house or her residence or church. No use taking her to the Huntington when what she really wanted was to sit in my kitchen.
3) I will go on a diet for time spent with her, limiting it to one hour per day. I just can't handle these longer days.

Traffic Jam

2008-02-16T22:39:00.000-08:00

Living in Los Angeles requires constant vigilance of traffic patterns. No hour of the day can be planned without taking traffic into account, unless one stays within a few blocks of home or travels on foot.
I was planning to attend a meeting of EEWC (see link: eewc.com) in Claremont starting at 4 pm, a drive that takes one hour on the 10 freeway on a Sunday morning or afternoon but two hours or more on a weekday afternoon if one leaves at 2 or 3 pm. At that time all the traffic is flowing east.
I planned on leaving at 2 pm, just in case, and visiting Mom from 1 pm to 2 pm before leaving. However, I didn't manage my morning activities well enough to get to Mom's residence by 1 pm.
At 2 pm I faced a choice: skip visiting Mom and make sure to be on time for the meeting at 4 pm, or visit Mom and trust that traffic on this Saturday afternoon would be about the same as on a Sunday: light.
Reason to skip the visit to Mom: yesterday I'd put six hours into her, so I could take today off.
Reason not to skip Mom: yesterday I'd been impatient with her about her refusal to take her meds, and she had cried. To make amends, I should visit her.
Guess which one I did.
When arrived, planning to spend just half an hour and leave at 2:45 pm, she was hysterical: "Thank goodness you came! I called you and told you I want to go to your house."
"We can go to my house, but we will go out and get some ice cream," I answered.
Then my favorite caregiver, Marnie, often in charge of the whole floor, told me she had been robbed at gunpoint two days earlier. I needed to listen to her story in all its frightening detail rather than rush out saying, "Later!"
Finally I took Mom out in the wheelchair to get a Nestle's Crunch and a banana. Then we returned and I left her in the dining area eating the treat.
"Bye--I'll see you tomorrow morning so we can go to church," I told her.
By now it was 3 pm, and I settled into the minivan for a pleasant hour-long drive with Prairie Home Companion on the radio and a Snapple iced tea to drink, travelling 70 mph. I was glad I had taken time for the visit.
But five minutes later traffic halted: there was an accident on the 10 freeway near the 5.
I decided to maneuver around it, taking the 110 to the 101 to the 10. Traffic flowed well for ten minutes but then it slowed to 30 mph and stayed there.
Frantically I switched to all the traffic reporting channels but no accident was happening ahead of me this time. I had to conclude the situation was normal--SNAFU.
For the next hour I maneuvered from the 10 to the 605 to the 210, hoping there'd be fewer cars and a speed of 60-70 mph, but it took me an hour and a half to get only as far as Azusa, still fifteen minutes away from Claremont.
I fumed and fretted: was this normal for a Saturday, as it is for weekdays? Or was the heavy traffic caused by the three-day weekend--people driving to Las Vegas or to Big Bear for skiing?
I was 45 minutes late to the meeting. An hour trip became an hour and three-quarters.
Now I really regretted having taken time to visit Mom. Once again, I had taken care of her by throwing my own commitments off.
But at least she knew I cared: I had not skipped a day.

A Perfect Storm

2008-02-15T16:24:00.000-08:00

I knew one thing this morning: I didn't want to give up five hours to take Mom to a P.E.O. meeting.
But that's what I do every two weeks. I started taking Mom two and a half years ago, then decided to join in order to keep taking her. It's her one outing besides going to church and going to my house, a vestige of her former life, seeing these P.E.O. sisters.
I'm a member, and she is, and I would take her to the 10 am meeting.
I delayed leaving the house, first typing up the slate of officers nominated for next year. Two meetings ago when they asked for volunteers for the nominating committee, Mom piped up, "I'll do it!" Everyone laughed, but then they said she was volunteering me. I wasn't clever enough to slip out of this trap.
~~~~~
I didn't arrive to Mom's floor until 9:40 am, hoping just to get her purse and wheel her to the car.
No such luck. She was still sitting at the breakfast table in front of a fresh plate of eggs and bacon, her two cups of orange juice and tomato juice untouched.
What I didn't know:
1) The floor was short-staffed today. The lead caregiver, Karen, was late going down to get the food cart from the kitchen because she had to wake and dress a few more residents than usual.
2) Mom had refused to get up at 8 am when Elisa, her caregiver, spoke to her. She had cried and said she didn't want to get up. Elisa didn't get her up until 9 am, then dressed her and took her to breakfast.
3) Mom had eaten her oatmeal but refused to take her meds. Ilse, the medicine person, had decided to try later. Karen had held off on giving Mom her eggs and bacon, waiting until she cooperated with her meds.
As various people were reporting these facts, I decided to take Mom and leave; at least she had had her oatmeal.
"I'm going to get your purse," I said.
But when I got back with the purse and the lighter wheelchair for car trips, Ilse said, "She's still refusing her meds." As if I were supposed to care.
I needed to leave, meds or no meds, but in the same way George Orwell found himself shooting an elephant, I found myself going along with the caregivers who expected me to enforce Mom having her morning meds.
"Mom, take your meds! Good! Now take the next ones," I urged.
"Don't spit them out," said Ilse.
"Mom! Okay, good, now let's move into this other wheelchair."
To Karen, I said, "Why isn't she ready to leave at 9:40? I asked J.R. to put in her chart for today 'No bus rides! She will be leaving at 9:30.'"
"I didn't see any note on her," Karen said.
When I picked Mom up to transfer her to the portable wheelchair, the entire black chiffon long skirt with liner she was wearing fell to her ankles.
"Is this skirt too big for her?" I asked.
"Yes," said Elisa. I'd set it out yesterday with a red sweater with inserted collar and cuffs to be worn to this meeting, but I hadn't thought about how loose the waist might be.
"Oh, I'm sorry," I said, wheeling her back to her room to get a safety pin. Why hadn't Elisa pinned it? Mom's clothes are my responsibility, though. She was 130 pounds three years ago; now she's down to 100, and she was probably 150 when she first wore this outfit. I'd bought some velcro and thread two months ago, intending to tighten the waists of all her skirts, but I'd been postponing this task.
By this time my patience was gone.
"You have to take your meds!" I yelled at her, pinning up the skirt. "You can't refuse them. We'll be late for the P.E.O. meeting."
"Don't be mean to me," she cried.
In silence I pushed her out to the elevator and to the car.
"Why are you mad at me?" she asked.
"Because you wouldn't take your meds," I answered.
"I did take them! They're lying," she cried. "They always say 'that old bag' and won't give me my meds."
~~~~~
When we arrived at the meeting, I put her into the wheelchair and opened and laid out the forty-pound ramp to get her up the entry steps.
She was still whimpering, and I thought she might not recover, but she still had her wits about her (well, some of them).
"Hi Evelyn, how are you?" asked Alva Mae.
"Fine, how are you?" she replied.
After devouring the fruit cup, the slice of coffee cake, the sausage, she fell asleep in the chair, quiet for most of the meeting until the Lord's Prayer.
I put the ramp back onto the steps, wheeled her out to the car, worked to get her into the car, then folded up the ramp and the wheelchair.
As we drove off, she said, "I'd like a Pepsi." We picked up a cheeseburger, milkshake, fries, and Pepsi from McDonalds.
I took her back to her floor, first toileting her. Off with the black skirt, on with some tan velour slacks. Off with the red Sas shoes, on with the black ankle-height ones for walking.
I took her back to the dining room and set her up with lunch.
Back in her room, I ransacked her closet for all the possibly loose-fitting skirts, tossing them in a heap, vowing to take time at home to tighten them with velcro.
I took the four pairs of dress shoes off the rack and hid them in a sack at the back of her closet.
I wrote a note to Laquetta, Queen of the Reminiscence Neighborhood, to have Mom's Individual Service Plan updated with these stipulations:
1) Get her up by 8 am--esp. on Sundays and Fridays when she is going out.
2) Make sure she is served breakfast by 8:30 am; otherwise she will have no appetite for lunch at 12 noon.
3) Use only the ankle-high black shoes.
4) Sundays she has to be ready to leave by 9:15 am. Some Fridays she has to be ready to leave by 9:30 am.
I left the note on LaQuetta's desk and fled to the car, feeling angry and upset about the whole morning.
~~~~~
At home by 2:15, I had planned to get to work at the computer immediately.
But instead I put away the forty-pound ramp in the garage, fed the dogs, and collapsed in frustration on my bed, unable to get up energy to do anything.

Old Folks Say the Darndest Things

2008-02-10T23:35:00.000-08:00

I had a big day planned for Mom: church as usual at 9:30 am, then a visit to my house where I planned to vacuum my floors and make waffles with strawberries and whipped cream on them. My sister-in-law Lee was planning to drive here from Malibu after church there with her five-year-old twin daughters, and I knew that Mom enjoys seeing the twins.

After church we wheeled to a market, bought the strawberries and whipped cream, and rushed home, where I vacuumed as she sat at the table eating grapes. Having been awake since 8 am or earlier, she tired of sitting in her wheel chair and fell asleep at the table, slouched in her chair. I kept cleaning and was just ready to start the waffles when she woke and said, "When are the twins coming?"

"I thought they'd be here by one o'clock, but they aren't here yet," I answered. "Are you tired of waiting?"

"Yes, I'm tired. I want to sit in my big chair," she said. "Just take me home. I want to go back."

I paused in my busy-ness and considered whether to convince her to stay so she could enjoy the fun or accept her desire just to take a nap. How soon would they come? Could I set her up to sleep in a chair in the living room and wait for them? Then I got a text message from John saying Lee wouldn't arrive until after 2 pm.

"Okay, I can take you back if you want to go," I concluded with disappointment. All my lovely plans down the drain—like a baby, she needed her nap on schedule and couldn't hang in there for another hour. Because I had given to Good Will the recliner I used to keep for her at our house, there was no convenient place for her to sleep. It would be an effort to get her onto a bed and then get her back up an hour later.

On the way home, she said, "I saw Reynold today. He's here… how about that!"

"Yes, how about that!" I answered. (He died in 2004.)

Back at her residence, I took her to the bathroom, then set her up in her recliner with a cheeseburger and fries and a milkshake because I hadn't really given her any lunch yet.

"Reynold came to see his little sister," she continued, and I reflected on the possibility that he might indeed have visited her.

After eating half the burger and fries, she started choking and coughed some of it back up.

"I'm choking to death!" she said. "I'm choking to death!"

"No, you're not dying," I countered. "You're okay. You just choked."

"I'm choking to death! It's awful to die."

"No, you're okay," I insisted. "You don't want the rest of this? Here, I'll extend your recliner. You can just take a little nap."

"Just take a nap to die," she repeated in a sing-song voice. "Just take a nap to die."

"No, you're not dying!"

"I never died before. It must be fun, don't you think?"

"Yes, maybe," I said, tucking a blanket around her and winding the back of a musical doll to sit on her lap.

"You are my sunshine, my only sunshine," the doll's bright notes began.

Mom started singing the song with it: "You are my sunshine, my only sunshine. You make me happy when skies are blue…."

Off the Hook

2008-02-08T11:30:00.000-08:00

Mom received the following letter from the US District Court in Denver today:

Evelyn Frances Eggebroten

Dear Prospective Juror:

Please be advised that a Judge of the US District Court has given the following direction with regard to your service as a juror:

After careful review and consideration it has been determined that you are EXCUSED, EXEMPT, or DISQUALIFIED from jury service. You need not report for jury duty.

If you have any questions, you can contact...

Very truly yours,

Gregory C. Langham, Clerk

by Joann Garcia, Jury Clerk

JURY DUTY!

2008-02-01T19:14:00.000-08:00

The US District Court, Denver Jury Division, mailed Mom a summons to jury duty on Dec. 27.

Then on Jan. 15 they sent a threatening note (fine or imprisonment) because they did not get an answer back within ten days.

So now I have filled out the response form, and I will try to find some kind of proof of her mental disability to enclose with it.

Never mind that she is almost 89 and lives in California, which they might have figured out by mailing it to her address here.

Penalty: Failure to respond and/or non-appearance may lead the court to issue an order to the US Marshal to have you brought before a judge for an explanation as to your non-response and/or non-appearance. Any person who FAILS TO SHOW GOOD CAUSE for non-compliance with a summons may be fined and/or imprisoned.

Imagine the scene: Mom hauled into a Denver court to explain to the judge why she didn't report for jury duty.

I bet she'd tell the judge a pretty good story.

She'd love the attention--and especially the trip to Colorado for the first time since she was brought here in November 2003.

Poison Pimples

2008-01-29T22:38:00.000-08:00

"I have these bumps on my chin," Mom says as we drive to her psychiatrist appointment at 1 pm.
"Bumps on your chin?" I ask, feeling her chin. "I don't feel any bumps.
"Yes, they have poison in them," she says. "They're on my cheek too."
"The only bumps on your cheek are your cheek bones," I answer, feeling her cheek.
She's always rubbing her chin because the stubble of hair there irritates her. We just shaved it a couple of days ago, so I'm thinking this started with the scratchy hairs there.
"Yes, I think Emily gave me these bumps on my chin," she continues.
"We're going to the doctor, so you can tell him about them," I conclude.
"What are we going to do with the Russian baby?" she asks next.
"What Russian baby?" I ask.
"Roz came home with a Russian baby," she says.
"No, she didn't," I correct her. "Roz got a little dog, not a baby."
Roz does have young cousins in New York who were adopted four years ago from Russia. I wonder if this fact migrated from some storage place in Mom's brain and attached itself to the recent dog information.
After we enter Dr. Chen's office, Mom starts to tell him about her bumps, but now they are pimples and they are on her hands.
He gently examines her hands and says, "You don't need to worry about them. I don't think they will bother you tomorrow."
He doesn't say, "There are no bumps here!"
"They're on my legs too," Mom asserts, but again he reassures her.
"Your fingers are purple on this hand," he says, but I tell him we've already discussed that circulation problem with her geriatrician.
"There was a patient across the street from my mother who died of these bumps," Mom continues. "Her name was Cinderella... Paradise."
"What a lovely name," he ventures.
"Yes. You probably think I'm crazy," she says.
"How are things at Ocean View Assisted Living?" he asks.
"Very aggravating," she answers. "Everybody is teasing me because the door to my room wouldn't open."
I don't explain to him that when she wheels away from the table half-way through a meal and arrives back at her room, she finds the door locked because the staff does not want her to enter and try to get out of the wheelchair into her recliner or onto the toilet.
Somehow she next mentions her husband, Kermit, who died in 1993.
"He went to the Colorado School of Mines," she says. I don't say, "No, that was your brother Reynold."
"--and he got a bunch of gold and silver slates and carried them home--" I don't say, "No, that was your grandfather who was accused of highgrading."
"--to his parents, Mr. and Mrs. A.R. Gustafson. They died. They fell from that silver and gold, carrying it upstairs from that place--"
"Oh, they did," Dr. Chen murmurs.
"They thought he was down at the chocolate shop, and I thought, 'Oh, that's sweet.'"
"Yes, that's sweet," he repeats, smiling.
"And I went down there. He had these bumps and I thought I was going to die from these bumps," she continued.
I wondered how long this tale by free association could last, but then she did a quick self-assessment.
"You must think that sounds pretty silly," she said. "You must wonder how a well-bred woman could have a dream like that, but I did. Of course, they were--"
"Do you have a list of her meds?" he asked me.
"No, they haven't changed since you saw her a month ago," I reply.
"How is she doing?" he asks.
"She hasn't been violent with the staff in the last month," I begin. "At least no one has reported to me any scratching or hitting. But when I come in the late afternoon, she is often very upset and crying about something that is a complete hallucination, something from the past that isn't even anything that happened to her. Like one day she was crying, 'My mother lost her baby... Byron and Serena had to walk to get the doctor.' But this happened to her grandmother, and the child Serena who went to get help is her mother. She thinks these things happened to her, but it was before she was born, in 1899 or something. I just try to take her out to do something, distract her, and she forgets about it."
"You're right to redirect her with real activity in the present," he says. "I don't think it's a good idea to try to medicate her for this. Let's just keep her Seroquel at 25 mg once a day. And maybe this time you can come back in three months."
"Oh, good!" I say. These visits are so pointless--I'm delighted to come less often.
"But these pimples," Mom says, trying to regain the spotlight. "You think there's no reason to have them under a microscope and be seen...?
"No, I don't think so," he answers. "I don't see them."
"You don't see 'em? Well, they're there!" she retorts emphatically. "Why do they come? After a night alone, there they are again."
"Well, it's possible," he ventures. "But you don't need to worry about them."
"Positive? They're not positive? Okay, I won't worry.... I was a Navy nurse in World War II," she counters.
"Yes?" he answers.
"I worked very hard to get everybody in the catalog of US News & World Report. And they had these pimples."
"Oh, I see, " he says as I thank him and push her in her wheelchair out of the office.
We go to the lobby to get ice cream, as usual, for a treat. She has a Nestle's Crunch bar and I have an ice cream sandwich.
On the way home, she is reflective: "I guess I don't need to worry so much about these pimples because everybody dies of something."

Running Errands

2008-01-28T19:16:00.000-08:00

I left the house to do errands and took the new little rescue chihuahua with me. My oldest daughter, Roz, found it online and will take it back to New York City with her when she next comes home.

In its pink and white wool sweater and yellow harness, it was a big hit at Mom's residence.

As we sailed out of Ocean View Assisted Living to continue our errands, the dog sat alertly on Mom's knees like a carved ornament at the prow of a ship.

I'd just intended to do local errands, but I'd gotten a call from the church that a member soon to have open heart surgery needed O- blood. Although I'd been rejected as a donor on Sunday because my hemoglobin was a bit too low, I decided to try again.

So we went to UCLA, parked at Whole Foods, left the dog in the car, wheeled a block to the clinic, waited.

In the car and while waiting I supplied Mom with cashews, grapes, sticks of gum. Food is one of her greatest pleasures at this point in her life.

However, my count was only 12.4 (12.5 was the cutoff), so the effort was in vain. With a brisk wind blowing, we went back to the car.

"It's so cold," Mom complained.

"You're okay," I told her, adjusting the blanket on her lap.

I was thinking, "It's this or sitting in your chair all afternoon. Cold or not, this excursion is probably more stimulating for you."

Once in the car, I put the dog in her lap for the drive back to her residence.

Queen of Hooks

2008-01-27T17:13:00.000-08:00

I arrive at 9:15 am to take Mom to church--our weekly outing, the only place she goes every week besides my house.
But first I had read my Al-Anon day-by-day books for my daily guidance, along with five psalms and a chapter of the Bible.
Melody Beattie's advice for Jan. 26, in The Language of Letting Go, is as follows (in part):

We can learn not to get hooked into unhealthy, self-defeating behaviors in relationships--behaviors such as caretaking, controlling, discounting ourselves, and believing lies.
We can learn to watch for and identify hooks, and choose not to allow ourselves to be hooked.
Often people do things consciously or without thinking that pull us into a series of our self-defeating behaviors we call codependency....
Someone may stand before us and hint or sigh about a problem, knowing or hoping that hint or sigh will hook us into taking care of him or her. That is manipulation.
What are the words, the signs, the looks, the hints, the cues that hook us into a predictable and often self-defeating behavior?
What makes you feel sympathy? Guilt? Responsible for another?
Our strong point is that we care so much. Our weak point is that we often underestimate the people with whom we are dealing. They know what they're doing....
Today I will be aware of the hooks that snag me into the caretaking acts that leave me feeling victimized....

As a result of this reading, I set out hoping to notice any hooks that Mom set out for me and to avoid being hooked.

When I arrive, Elisa, Mom's morning caregiver five days per week, reports that although she got Mom up and dressed in time, the kitchen had not served her breakfast promptly; she had eaten only oatmeal and fruit, without the scrambled eggs and sausage she usually has as well. I speak to the lead caregiver and to Ilona in the kitchen about that, reminding them that Mom has fallen from 118 to 102 lbs. in the past year and that her best meal of the day is breakfast. She often refuses to eat lunch or dinner but always enjoys a full breakfast.

Then I scoot Mom off in the wheelchair, past the medicine giver on the second floor, who protests that we shouldn't leave without her meds. Ilse had arrived on time, 8:30 am, instead of early, and as a result had not yet gotten to Mom and her meds. Usually I stop (if caught) and wait while we go through the med rituals: a squirt of something in each nostril, drops in the eyes, and 5-6 pills taken slowly, reluctantly, with juice or applesauce. But this time I say, "No, we will be late for church if we stop."

It's sunny as we drive to church, and I hand Mom her sunglasses, but she's putting them on upside down; I manage to steer them correctly onto her nose while driving.

"Look at that cute cloud!" she comments. And sure enough, the Los Angeles sky holds dramatic puffs of cumulus for a change.

There's still a handicapped parking spot near the church, so we save time there and sail into our customary spot on the aisle in the left rear of the congregation. Other than some humming and whispering at inappropriate times, things go well.

Her favorite times are when she drops her envelope in the offering plate and when we recite the Lord's Prayer. For some reason she always recites one line wrong:
"Forgive us our debts, as we forgive those who debt against us"--and being out of sync with the congregation on that throws her off for a few lines, until she catches up with "the kingdom, and the power, and the glory forever, Amen." (A few years ago when I took her to the Episcopal Church, they always said, "Forgive us our sins, as we forgive those who sin against us" and I think she's trying to follow this pattern with debts.)

After church, we head for the handicapped restroom as usual, and after placing her on the toilet, I don't hear any liquid trickling, so I replace the Depend and start to pull it up quickly. There's a smell but I ignore it, hoping for the best.

Suddenly, however, I notice a fat length of BM on the toilet seat. Whoa! I check things out, clean up more just emerging, decide not to throw out the newly soiled new Depend, wish I had brought plastic gloves and wipes, hope there's not any on her skirt or my clothing.

Then we head to the church hall with a blood donation station set up, where I am scheduled to give blood this morning. First I give Mom tea with milk and sugar, as well as cookies, while I fill out the form. But they reject me: the iron level in my blood is only 12.2, instead of 12.5 or better, so I can't give blood today.

We leave church, but by now the cute cloud has multiplied and it's raining heavily. We get soaked while getting her into the car. She has been talking all morning about going to my house, but I realize that project is going to be difficult in this rain. Better cancel it, just do errands and take her back to her residence.

"Mom, this isn't a good day for you to go to my house," I begin. "We would get all wet again getting out of the car and going up the ramp to the front door."

"I don't care! I just want to go to your house," she argues. "It's been such a long time since I was at your house." Hook #1

"Mom, you were there Friday. Two days ago. Remember? You met Roz's new chihuahua."

"Yes, I remember, but I don't go there very often," she maintains. "And I just want to see Reynold."

"Reynold is not at my house," I say carefully. I do not say, "He died four years ago."

"Oh, he isn't? Oh."

"If you want to get soaked in this rain, we can try to get out of the car and go up into my house," I concede. "But it would not be a good idea."

"Sunny California!" she says.

"We have to have rain some time," I counter.

After a few moments, she says, "Okay, I guess I should go back to my place." And she begins singing, "California, here I come! Right back where I started from."

I sing along with her until she, suddenly perceptive, she accuses me, "You sound like you're happy that you don't have to take me to your house!" Hook #2

It's true. I had told myself that it rains so rarely in California that I should take advantage of this unusual reason not to have to load her in and out of the car, supply her with various snacks and foods for a hour.

But I do not succumb to her effort to hook me into sympathy, guilt, and the usual Sunday trip to my house.

"Would you like some French fries?" I ask. "Let's go to McDonald's, and we won't even have to get out of the car and get wet."

"Okay," she says. "But I have to go to your house to get the news. John always has the news." Hook #3

"We can stop and buy you a newspaper," I answer. "And we will do a couple of other errands too. I need to buy some dog food."

At Centinela Pet Feed, I tell her, "Here's your milk shake. I'll just be a minute to buy the dog food."

"Get me some celery!" she demands.

"There's no celery here," I answer. "This is just a pet store, not a grocery store."

"If you won't get me celery, then I'll eat dog food!" she whimpers. Hook #4 --poor me.

"You don't have to eat dog food," I answer. "You have French fries, a cheeseburger, a milkshake, and a doughnut."

The rain is letting up by the time we drive back to her residence, and I hope she doesn't notice. I'm really counting on saving an hour by taking her back now, at 12:30, instead of 1:30 or 2 pm.

Inside, it takes a while to clean her up in the bathroom, but at least I have plastic gloves and wipes. I set her up in her recliner with her milkshake and doughnut on her tray in front of her, but she says she's too tired, not interesting in eating any more. I start a DVD that happens to be in her television, about the birth of Jesus. Oh well.

I open her newspaper, throw away the ads, elevate her feet, read her a post-Christmas letter from her best friend, Janelle Krueger, formerly dean of nursing at the University of Arizona in Tucson. Well, it's a typed Christmas letter from Janelle's daughter Bunky, with a note in Bunky's hand, and a signature from Janelle as well as Bunky and her husband. Such is communication at age 89 if one has dementia.

There are a few more hooks as she attempts to delay me and keep me with her longer, but at 1:30 pm I finally escape out the locked door into the elevator lobby.

A caregiver, Stan, sees me leaving and says, "You look tired."

"I just did four hours with her," I say. "That's not much, compared to your hours, but it's enough to wipe me out. And I didn't have any gloves or wipes when she had a BM in the church bathroom."

Stan is instantly sympathetic and solicitous: "You should have them with you."

I stop to use the second floor bathroom, as I often do when leaving. My need to close a door and be alone and quiet for a few moments is overwhelming.

Bougainvillea

2008-01-20T19:37:00.000-08:00

Some words Mom just can't find. She will use any word handy when she means her watch or her purse.

But at church today, when I parked her in front of the flowers while I went to sign a list to donate blood next week, she said, "Oh, bougainvilleas!"

She learned this word last May, on Mothers Day, when Bill was visiting and we picked a couple branches of this flower for her at a church in Malibu.

For some reason, she still remembers it today.

The Last Day of Christmas

2008-01-06T19:18:00.000-08:00

It's January 6--Epiphany--and our Christmas tree is still up. I bring Mom to our house after church to enjoy the tree one last day.

"Tomorrow we're going to take it down and clean up this room," I say.

"No, don't take it down," she begs.

When I take her back to Ocean View Assisted Living, she notices that the pretty lights and decorations in the third-floor elevator lobby are gone.

"The Christmas lights are gone!" she says with disappointment. "They threw them away."

"No, they just packed them away in boxes until next year," I explain.

"Do you think I'll be around to see it then?" she asks.

I pause: this is a serious question.

"Well, we don't know, do we? But I think so--you're not sick. You don't have any illness like cancer or anything."

The conversation moves on.

Note on Jan. 27: She occasionally comments, weeks later when we enter that elevator lobby, "Oh, the lights are gone!"

New Year's Eve

2007-12-31T22:35:00.000-08:00

It's New Year's Eve, so at 2 pm I drive to Mom's residence and bring her to my house to enjoy the sunny and warm California afternoon.

Roz is sitting in the back yard talking on her cell phone, so I wheel Mom into the patio area by the flowers and put the chihuahua Irie into her lap... then I give Mom a plate of fruit to eat.

Bill brought some holly from his yard in Steilacoom, Washington, when he was here, so I show her the holly and put a branch of it in her hands.

"We used to call it kinnikinick. We'd go to the south hillside to get it," she says.

"This is holly," I say.

"Do you think it's the same thing as kinnikinick?" she asks. I don't know the answer to that one.

Then I wheel her inside the house and give her some chocolate cake to eat.

"Here's your Christmas apron," I say. "Do you remember when we sewed this? It was about ten years ago."

"Yes," she says, looking at the newspaper. I put Irie on her lap for a photo in front of the Christmas wreath she gave us twenty years ago. It has a custom-designed scene in the center with a miniature tree, fireplace, rocking chair, and toys. Over the fireplace is a painting of Pike's Peak, and nearby stands a miniature newspaper titled Los Angeles Times.

After the cake and photos, Roz comes in to talk.

"Tell her your dream," I prompt Grandma, but she is reluctant to do that.

When I had first arrived at her residence, she had told me that in the night Roz and her friends had been noisily swimming in the pool there (what pool?) and she had had to report them. At that point I didn't try to argue with her that it had just been a dream, but now I hope to clarify it.

Instead, Grandma is confused and embarrassed. Not much gets clarified.

"We need to go out now and buy a few things at the store," I say. "And then we'll go back." I break this news gently. I don't say, "Back to Ocean View Assisted Living."

I'm pretty sure she doesn't want to return, but I need to cook dinner and be available for my kids. I can't make pizza dough, fix quacamole, make a spinach salad, bake the pizza and then bake brownies while also toileting Grandma and supplying her with things to eat and do--but I feel bad for her spending New Year's Eve alone at her residence, dozing in her recliner.

On December 31 of 2005 and 2006 I kept her with us for part of the evening, or I slept at her house to give the private caregiver the night off. In 2003 and 2004 I let her sleep at our house on New Year's Eve and Christmas Eve, and I slept on the floor in the same room to jump up if she tried to get out of bed or called for help in the night. But now I am trying to limit the hours I put into her care.

Mom cooperates with leaving my house at 4:30 pm, and we drive to a market to get a cake, a platter of cookies, and a platter of hors d'oeuvres for the staff at Ocean View. I feel so grateful to them for working on New Year's Eve, a gratitude mixed with guilt that they are caring for Mom on this evening instead of me.

The lines in the grocery store are long, however, and Mom has to wait in the car for twenty minutes or more.

We park and I load her lap with the trays of goodies.

"This is for the people who work for you," I say.

"Oh good," she answers. "I like to be generous." We take the two elevators to her floor; then we do our bathroom routine and I wheel her into the dining area.

"But I don't want to go to dinner," she argues. "I'm not hungry."

Though she has snacked for two hours, I don't want to leave her isolated in her room. I need her to be in the dining area for an hour at 5 pm before she returns to her room and sits in her recliner until bedtime.

"You need your protein," I tell her. "There's some healthy food here, even though you had cake at my house."

A caregiver puts a delicious-looking bowl of soup in front of her: pieces of potato and broccoli in a thick cream. She stabs it viciously with her spoon.

"It's the same soup every day!" she says angrily. "The same soup every day!"

She does have soup every evening, different kinds that probably all blend into one in her mind.

Her anger, however, is at having to be back at Ocean View, in this dining room, instead of at my house with her family.

"Goodbye, I'll see you tomorrow," I say, slipping off as quietly as possible.

Pity Party

2007-10-20T18:20:00.000-07:00

The hardest thing about visiting my mother every day is responding to her self-pity.

The wheel chair, the lack of memory, the incontinence I can deal with, cheerfully.

Today I brought her to my house; we ate pumpkin pie and played with the dog.

As I started to put the dishes away and prepared to take her back to the car, this was her comment:

"At least you came to see me. Maybe you'll come again some day."

"I come every day, Mom!" I said. "You don't believe that, do you?"

"I guess you do," she answered. "But it seems like such a long time before you come."

It's never enough.

Most days when I leave her, whether it has been an hour visit or a six-hour outing, she says, "You'll come back tonight and put me to bed, won't you?"

"No, I can't come back," I say. "I need to cook dinner for John." Or "I need to grade papers for my class."

"Oh, of course, you need to take care of John," she says, reluctantly recognizing that I have a few people in my life besides her.

I leave feeling miserable, unable to shake the feeling that no matter how much I do, it is not enough. She is voracious.

My Most Embarrassing Day

2007-09-15T22:43:00.000-07:00

Of course it happened at a P.E.O. meeting in a lovely lady's home.

Mom had been on stool softeners for several weeks, and I thought the problem of her constipation had been solved. Keeping the right balance of Sorbitol, prune juice, and various foods in her diet was tricky, though--too much vs. too little of one thing or another.

It might have worked out if she hadn't been given Colase.

There we were at the P.E.O. special event for B.I.L.s ("Boy I Love," my grandmother once explained to me, but in 2007 it is known as "Brothers in Love," partly because so few spouses are still alive). We had two B.I.L.s at this dinner.

We had just started to eat the catered Italian cuisine when Mom said, "We have to go now. I feel sick. I don't want to stay."

Fool that I am, I insisted on staying another 45 minutes until we had been there about an hour.

But I began noticing a bad odor. She needs to go to the bathroom, I realized. She may even have had a BM in her Depend.

Taking her to the bathroom in this home was not an option--it was too small to get the wheelchair inside, and there was no bar for her to hold onto while I removed her nylons and Depends.

The odor got worse. I got worried. Mom insisted on leaving.

The ladies were very polite.

Finally we made our excuses and left, wheeling to where I had parked the car.

As I helped her into the car, I realized the BM was outside the Depend--all over her skirt, the wheelchair, the seat of my car.

I drove back to Ocean View Assisted Living as fast as I could.

In the parking lot, I put a blanket in the wheelchair before moving her into it.

Up in her room, I peeled down the Depend and found a mess--all over her nylons, shoes, skirt, the floor. On my clothes too.

Marnie, a kind caregiver, had figured out that something was afoot as I wheeled Mom back to her room and insisted on helping me. She was a lifesaver.

Together we cleaned up Mom and the bathroom. Then I gave Mom a shower, put her in her nightgown, and left her in Marnie's care.

Hindsight: had I known the extent of her problem, I would have left the party immediately when she first asked to leave. Instead we stayed as the odor got worse and worse...

My brother Bill listened to this story and said, "Colase--I use it to have a colonoscopy. It cleans you out fast."

"I didn't know," I moaned.

From now on: no more Colase.

Calcium--The Culprit

2007-09-11T18:13:00.000-07:00

After weeks of trying to balance Mom's diet and relieve her constipation, we now have the solution: Just reduce her calcium pills to one a day.

In July her calcium was changed to three times per day, and soon afterward, her constipation began.

Today after reviewing all Mom's recent medical history, Dr. Rosen suddenly realized that the calcium increase was probably the cause of her constipation.

I take 2000 mg. of calcium per day with no ill effects, so it never occurred to me that calcium was the problem. But Dr. Rosen said sometimes it can cause this problem.

So we have changed the calcium back to 500 mg. per day, and added Sorbitol and Colase temporarily until her stools become normal again.

And the Answer Is...

2007-08-21T17:38:00.000-07:00

Constipation.

It turned out that "My bottom hurts" meant that she urgently needed to move her bowels, but was restricting because the movement would be painful.

When I first discovered the problem, I had to wear gloves and apply pressure around the opening of the rectum to force out the dry hard marbles... she screamed but it was necessary.

Thus began a week or two of medications to soften her stools... until diarrhea occurred.

Puzzling Over Her Symptoms

2007-08-20T11:19:00.000-07:00

I returned from being gone for almost two weeks to find my mother with a new set of symptoms but otherwise okay, just a little weaker and more confused.

She knew that Marie had visited her, but she confused her with Emily, my sister.

"How are you feeling?" I asked.

"My bottom hurts. I have a bladder infection," she answered.

I had made 6-8 phone calls earlier in the day to set up an appointment with a nurse for a catheterization, just on Marie's report of two days earlier, so I could answer Mom with, "Would you like to go to the doctor to check on it?"

"No," was her answer, but we went anyway. We have a regularly scheduled appointment with the doctor for next week, so whether positive or negative, this urine culture will provide information.

We accomplished it, with much pain and stress for Mom. I had taken her to the toilet just before the catheterization, but she hadn't urinated, as usual. Furthermore, her Depend was completely dry. The procedure, however, released 600 cc's of urine, so her bladder was full.

The puzzle is: why can't she urinate easily?

Her caregivers at Sunrise reported that she may be constipated.

Or is the problem an obstruction in the ureter?

I don't know... I will ask her caregivers to chart all bowel movements and major soaking of her Depend. Perhaps with a week of careful observation we can figure it out at the coming visit to the doctor.

Another UTI?

2007-08-18T11:10:00.000-07:00

My daughter Marie visited Grandma today and reported that she may have a bladder infection. She's saying, "My bottom hurts."
I can't do anything because I'm out of town.

"Loved Ones in Limbo" WSJ

2007-08-16T11:14:00.000-07:00

"Waiting for the End: When Loved Ones Are Lost in Limbo" by Jeff Zaslow appears in today's Wall Street Journal, August 16, 2007, section D, page 1.

"Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states," Zaslow explains. "For their loved one, 'coping with the ambiguity creates a unique type of stress,''" according to a researcher. (See full article below.)

This exactly captures the situation I find myself in with my mother.

Wall Street Journal, Aug. 16, p. D1

MOVING ON By JEFF ZASLOW
Waiting for the End:When Loved OnesAre Lost in LimboAugust 16, 2007; Page D1
In the days after the Aug. 1 Minneapolis bridge collapse, families of the missing stood by the Mississippi River, waiting for word. Some 1,300 miles away, in Virginia Beach, Va., a widower named Matt Buckley found himself empathizing with their sadness and sense of uncertainty.
"I know that feeling of limbo," he says. "I can picture myself staring into that murky water, wondering and hoping. That's how I felt when I'd sit with my wife, wondering what was in her head: Are you there? Are you with us?"
Don Erickson, trapped in a Utah mine, in a photo held by his wife.
In 2004, Mr. Buckley's 44-year-old wife, Mary, had routine foot surgery and, because of an anesthesia mishap, suffered massive brain damage. She spent 30 months in a coma before dying last year.
The loved ones of those still missing in the Mississippi -- and in last week's Utah coal-mine collapse -- know they will likely have to deal with death. But first, like Mr. Buckley, they must deal with limbo, an increasingly common way station in the grief process today. It's a stage of mourning that researchers say deserves more attention.
"We're prolonging life, but we're also prolonging dying," says Mercedes Bern-Klug, an end-of-life researcher at the University of Iowa, who studies what she terms "ambiguous dying syndrome." Hundreds of thousands of people are surviving longer with advanced dementia or traumatic brain injuries, or in coma states. For their loved ones, "coping with the ambiguity creates a unique type of stress," says Dr. Bern-Klug. "It's a form of angst we don't even have a name for in our culture."
Like families, corporations and nations are often unprepared for the repercussions of limbo. When ABC News anchor Bob Woodruff suffered a near-fatal head wound in Iraq, ABC had no firm contingency plan. Israel's former prime minister Ariel Sharon has been in a coma since January 2006, and Israel's government has moved on fitfully.
On the home front, the emotional toll of limbo can be excruciating. After Mary Buckley was left in a vegetative state with her eyes open, Mr. Buckley and his four sons endured false hopes offered by doctors, and their own feelings of helplessness and guilt. "I visited almost every day, but it was more out of a sense of duty than love," says Mr. Buckley. "The woman I married was gone."
During his wife's second year in a coma, Mr. Buckley developed romantic feelings for a widow who worked at a disability group. They proceeded slowly. She told him: "I feel like your mistress. You're still married." He replied: "I am and I'm not." By the time his wife died last October, Mr. Buckley had worked through his grief. "What I felt then was relief."
FORUM

Join Jeff Zaslow and other readers in a discussion on limbo and grief.
At the bridge in Minneapolis, there was also relief last week when the bodies of Sadiya Sahal and her young daughter were finally found. Ms. Sahal came from Somalia, where in Muslim culture it is crucial for someone to be considered either alive or dead. Not having their bodies was "mental torment" for Ms. Sahal's loved ones, and they were grateful to have closure, says Omar Jamal, a family friend and spokesman.
In Saugus, Calif., John Colvin will be in limbo indefinitely. His wife remains severely cognitively impaired nine years after suffering a ruptured aneurysm in her brain. Now 61 years old and otherwise healthy, she may live for decades. Mr. Colvin, a religious man, vows not to seek sexual intimacy elsewhere. "I could have become a hard-core alcoholic," he says, but instead he found solace in a caregivers' support group.
The group's members remind each other not to be martyrs and to care for themselves first. They also give each other permission to joke about their ordeal, and to fantasize about an end to it. One of their mottos: "You can think terrible thoughts as long as you don't say them."
As medical advances continue to "deform the dying process," Dr. Bern-Klug predicts, families will have to deal with variations of limbo that are now unimaginable. It's territory that must be charted carefully, she says, as more of us share that experience of standing on a riverbank, waiting.
. Email: Jeffrey.Zaslow@wsj.com.

No, I Did Not Marry

2007-06-16T18:18:00.000-07:00

One of the ironies of Mom's life is that every six months she has to sign a statement that she has not remarried. If we do not get these pieces of paper sent in, her US military annuitant paychecks stop coming.

Never mind that she is 88 years old, incontinent, afflicted with dementia, and in a wheelchair.

The US military thinks she might remarry. She became a widow in 1993, and it's now 2007, but they're convinced she might still scare up a suitor or two.

Here's the letter they send:

Certificate of Eligibility

We have not received the Certificate of Eligibility (COE) we previously sent you.

We have suspended your annuity until we receive a completed COE.

Please complete, sign, and return this COE to Defense Finance & Accounting Services, US Military Annuitant Pay, PO Box 7131, London, KY 40742-7131.
If you have any questions, call toll free 1-800-321-1080.

Your marital status is required to update your account, please attach a copy of your marriage certificate.

___ I did not marry in the past year.

___ I married in the past year (please attach a copy of your marriage certificate).

Nothing I write to them on these forms can convince them that she is in imminent danger of remarrying and thus becoming disqualified for this pension.

Maybe we should fly to Kentucky and present the evidence.

I don't explain the form to Mom any more, joking that they wonder if she remarried.

It just starts her thinking and talking about the delicious possibility of remarrying.

An Animated Day

2007-06-16T18:00:00.000-07:00

When I arrived at Mom's room at 3:45 pm, I found her telling stories with delight and great animation to two caregivers, Susan and Christina.
She sat in her wheelchair talking and laughing, her pink face full of life and joy.
They stood there watching her and laughing at her tales about her husband.
"So you enjoyed your husband. He was a good man. Here's Anne," they said finally after I watched for a few moments.
"Yes, and she's the product!" Mom exclaimed.
They laughed.
She wanted to go out and get French fries, to do something.
I'd been planning to take her to my house, in case my kids might be around for her to enjoy, but then I decided just to wheel her to the local deli to get French fries, as well as pick up that tube of Calmoseptine I'd reserved at the medical products store.
But as we were going out the door, my daughter Roz called on my cell phone. I wanted to talk to her, so I kept talking while pushing the wheelchair to Wilshire. Whenever I paused and just stood at an intersection talking, Mom demanded to know where we were going and why, so I pushed her to Von's, bought some kitchen waste bin liners, walked to the health store which had closed a half hour earlier, and went to the deli.
I tried to put the cell phone to her ear for her to listen and talk to Roz, but it didn't work. She doesn't hear phones or cell phones well any more.
Finally I ended the conversation, got the fries, and wheeled her back to her residence.
There she was happy to go to dinner and wanted to share her French fries with everyone.
I was able to leave without great angst on her part or mine.
A good day, but when I got home and found that two of my daughters were home, I wished I had brought her here to enjoy talking with them.

A Sleepy Day

2007-06-15T22:52:00.000-07:00

Good news: the bacteria causing the UTI is Enterococcus, which is susceptible to Levoquin, but even more to Amoxycillin. So Dr. Rosen will switch her to Amoxycillin and "run the susceptibilities" on the culture just to make sure.

Anyway, she won't have to have an IV, which would necessitate her leaving Sunrise for a week again. That means I can leave for a week, as planned, without having her in the hospital.

With that issue out of the way, I meant to visit Mom at 2 pm and leave for Pasadena at 3:30 pm, to avoid traffic for a dinner date with John and two friends.

But I had other work to do, including writing about Calmoseptine on this blog, so I didn't arrive until 3:45 at her residence.

What if she's talkative, wants to come to my house? I worried.

"She's having a sleepy day," reported Marnie, the head caregiver.

Indeed she was sound asleep in her recliner, unrousable. What a relief that she wasn't going to be demanding and slow me down.

I bustled around setting up a new laundry hamper I'd bought, putting away Depends and Calmoseptine.

Then I tried again to rouse her, and she responded a little. I took her to the bathroom and then asked, "Would you like to go to dinner or go back to your big chair?"

"I want to go to my chair," she answered and I got her all set up therewith pillows, music on the CD player, etc.

"Okay, I'll leave you now," I said, "Unless you want to go to dinner now."

"Oh, I guess I could go to dinner," she said.

So I put her shoes back on, got her in the wheel chair, turned off the music and took her early to dinner.

By then it was 4:40. I ran to the elevator to begin my commute to downtown LA to pick up John and then drive to Pasadena against the traffic for the Dodgers game.

But at least she was happy and had been toileted and had had more stimulation than if I'd left her sitting in the chair.

At least she wasn't sad and whimpering like yesterday. Maybe the antibiotic was working to end the bladder infection.