Web seminar on ALZ and LBD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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 !

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

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

"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.