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.