Thursday, July 31, 2008


In response to public demand.....

Here is the story of "when Jenna first met Dennis" which Jenna told at Dennis' birthday dinner last night.

Jenna met Dennis when she was working behind the counter at Posteritati, Sam Sarowitz' movie poster store in Nolita  (North Little Italy). Dennis came in and inquired about a certain movie poster. Then he looked around at things in the store and left.

When she next met him, it was five years later. I was introducing her to him in my kitchen in Portland.

Marcie Sims Appreciation Days

The larger experiment being attempted by the Fremont Street Center for Healthy Aging addresses the issue of aging in place. Can the care for a late stage Alzheimers patient be provided within the everyday routine of a normal family household? Paper diapers, superb health insurance coverage, and professional caregivers during the day are all part of what has made the experiment at Fremont Street work thus far. 

The mini-experiment we are conducting within that larger one is - can we live without Marcie? 

The first day of Marcie's vacation, Jenna arrived and cared for Mother in the AM. Charlie spelled her in the PM. Both grandchildren (Charlie is a grandchild-in-law, I guess) know Mother very well. She got lots of attention.

As I reported, the next day Mother woke up with one thought on her mind - where is Marcie? We had arranged that Margaret come in that afternoon, 1:00 - 5:00, so that day didn't feel different from the ordinary.

Yesterday, Wednesday, is the day I am most busy with my job. Dennis took responsibility for caring for Mother the full day, and it went off without a hitch. But examining the exact contents of the day may be revealing, when it comes to understanding what makes a day with Mother- and no caregivers - work.

The biggest pressure on caregivers, both professionals and family members, is the stress and tedium of constant exposure to the workings of a disabled mind. The non-Alzheimers brain, the one you and I possess, reacts with alarm to the cognitive misperceptions and communication roadblocks which are part of everyday life with someone with Alzheimers. It makes perfect sense to avoid this stress, and most people do.

The consequence of this social avoidance is that the person suffering Alzheimers, who is already socially disabled and severely limited in their ability to make contact, is given even fewer opportunities to connect with the larger family of human beings. Someone who needs more gets less. 

Our theory, here at the Fremont Street Center for Healthy Aging, is that placing a person with Alzheimers in the middle of a functioning family is one way to effortlessly ( or relatively effortlessly) increase the number of hours they receive social contact.

On days when Dennis and I are away at work, and when Jenna and the kids do not visit, the house is pretty still, so Marcie and Margaret take Mother on outings so she can have the contact with other people.

Yesterday the day went really well for us, without a professional caregiver here to provide respite, but let's look at just what happened during that day.

While I was gone in the morning, the Kaiser nurse arrived to do a blood draw. This week the City of Portland is tearing up Fremont Street right outside the house, so there has been activity and crews bustling about right outside the window. Damage to the cable lines meant a Comcast technician spent the morning going in and out of the house checking to see if he had re-installed the cable line correctly. Plus Dyana was here doing her monthly cleaning. So Mother had three visitors, and the house was full of activity.

When I got back in the afternoon, Dennis, Mother and I went over to Perry's, across the street, to celebrate Dennis' 55th birthday. We were the only people there. Mother had a root beer float and some Thai chicken. It was Happy Hour, and we were very happy. 

Mother raised her glass to Dennis.

We returned home in time for dinner. Jenna brought her kids over and we sat around the dinner table eating hamburger casserole, and vegetables from the garden. Dennis and Jenna swapped stories about walking to school, and Jenna told the story of when she first met Dennis.

Sam, Joy, & Bart practiced climbing the rope which hangs in Mother's bedroom doorway. Joy helped me water the garden. Dennis explained baseball scoring to Sam while they watched TV. Bart divested himself of his pants, proving his genetic connection to Tom Richardson, who did the same thing at his age.

Mother went to bed at 8:00 on the dot. I don't think she had a boring/bored minute throughout the whole day.

Now the point of this story is this: that much hustle and bustle is what is takes to replace Marcie in our lives.

Mother has a great day with she gets visits from:

1. A Kaiser nurse
2. A Comcast technician
3. Dyana, our home environment specialist
4. City of Portland road crews outside the house
5. a root beer float at Perry's 
6. One grand-daughter and three great grandchildren

On a day when Mother has this much flotsam and jetsam of human existence flowing in and out of her life,  she doesn't need the attention of a highly skilled caregiver. But notice the convergence of unusual factors. Because we can't expect the road to be torn up everyday, or the birthday of a family member (a blood draw, a downed TV cable) to happen everyday, we have Marcie and Margaret to help Mother make it through the barren desert that is her social life.

Because Margaret and Marcie do such a great job at keeping Mother supplied with opportunities to be social, Mother was not frightened by the pounding of the road crews, perturbed by the technician rooting around her living room, uncomfortable sitting in a booth at Perry's or unnerved by the presence of three young children, all talking at once, at her dinner table.

Because it is Marcie's vacation,  we are renaming this part of the summer Marcie Sims Appreciation Days. (When Margaret's vacation arrives in late August we will do the same for her.)

This post is a tribute to Marcie, who is on vacation, taking time off from a job well done!

Tuesday, July 29, 2008

Mother Has Her Children On Her Mind

Dennis was helping Mother dress for bed. This can be a very slow process. He asked her to sit down so he could take her shoes off. She said "I can do that." Dennis said "But isn't it nice to have people do things for you?" She said  "I have children. I hope they know that."

Mother has been talking more than she did, but saying "I have children" twice in a week - after never mentioning us at all - this is new.

Mother Remembers The Important Things

As Marcie was preparing to go on vacation, I said to her, only half joking "Don't worry about us, we'll be OK." She laughed but said she actually had been a little concerned how Mother would cope.

Yesterday was our first Monday without Marcie since February 11, the day she arrived. This morning Mother woke up and came out and asked Dennis "Where's Marcie?"

Mother does not call me by name, or Dennis. The only person she calls by name is Jenna. And now Marcie.

Monday, July 28, 2008

More research results

Here's an article in USA Today which addresses some of the issues which lie at the heart of the research conducted here at the Fremont Street Center for Healthy Aging.

Great Minds, Thinking Alike

A study in Kansas bears out what we have found to be true here at the Fremont Street Center for Healthy Aging.

" They discovered that when nursing aides communicated in a kind of baby talk for seniors - using a high pitched sing song tone, comments like "good girl", diminutives like "honey" and language that assumed a state of dependence "are we ready for our bath?') - Alzheimer's patients were twice as likely to resist their efforts to help.

The patients actions described above  - turning away, grimacing, groaning, saying "no" - is normal behavior about non-Alzheimers patients ( most of the world) when confronted with rude or unwanted behavior on the part of others. In other words, this is normal behavior, not caused by Alzheimers, but caused by inattentive care.

Saturday, July 26, 2008

Another First

Margaret said the other day, while on a walk, Mother suggested that they go to the store and buy a bottle of wine.

Wednesday, July 23, 2008

A First

Mother invited me to take a walk.  A long walk for her now is around the block.  She likes to walk in the afternoon. Sometimes, if the weather is nice, she and the caregivers take several short walks a day.

I went with her and Marcie around the block. Halfway around the block she said "I have children." I was surprised to hear this, since she used to deny this strenuously. She said "They come over and then there's alot." I said "Your children bring alot of people when they visit?" She said "Yes. They act real nice, then......" and she shrugged. 

"And then they leave?" I asked. "Yes." she said.

Sunday, July 20, 2008

Tools for Retooling

If you have been following the Oregonian coverage of the new phenomenon of bike rage, you may need the following recipe to help you reclaim your sense of familiarity with the world.

"Peaceful & Happy Tea

1 tsp. green or jasmine tea
1 tsp. rose petals
1 tsp. rooibos tea
1 tsp. dandelion leaves
1 tsp. lemon balm
1 tsp. chamomile flowers
1 tsp. crushed of sliced fresh ginger
1 tsp.  roasted brown rice and/or borage flowers
( What's a borage flower?)
1/2 cup fresh mint OR 1 tsp. dried peppermint

Add large pinch to 2 cups of just boiled water, and let steep for  2 - 5 minutes. Sweeten with honey and/or ginger candy."

This recipe comes from Sonia Gaemi, aka Dr. Sonia. To my surprise, all of the ingredients are either here in the house or growing in the yard. 

I theorized to Margaret that the easily enraged bikers were non-Oregonians. She theorized back that no, the easily enraged drivers are non-Oregonians. No one knows who all these infuriated people are. 

I am issuing an open invitation to them to come to the Fremont Street Center for Healthy Aging and drink some tea.

Thursday, July 17, 2008

Name Game

Margaret told me yesterday that she noticed that Mother calls Jenna by her name. She doesn't do this for anyone else in her life, now that Glen is gone. She calls Dennis "Glen", and once in a while she will use my name correctly to a caregiver, but she doesn't use my name, ever, to me.  

Somehow, Jenna's presence in her life has been longstanding enough so that Mother remembers her by name.

Mother asks the caregiver who I am almost everyday. She always looks baffled when they say "That's your daughter Anne." However, when Joy was over the other day, Mother pointed to her and told Margaret "That's Anne."

Tuesday, July 15, 2008

Same Time, Same Place

The oncology appointment was brief. They took Mother's blood pressure, weighed her, did a blood draw, and told us that they'd see us next year.

Time Based Nurture

I have been trying to describe the exact model we are testing here at the Fremont Street Center for Healthy Aging. We eat well, get exercise, and try to live balanced lives - all well established avenues to health. But we are doing something else on top of that, and I was trying to figure out what it was. Last Saturday, we had a dinner in the backyard with Jenna and her family, Dennis' sister Debbie and her husband Jim, their daughter Heather and her husband Kyle, and their son Zander. The age range: two 2 year olds and one 80 year old. Four couples, one widow, one caregiver, four children.

This is the model we are testing. Can a person with Alzheimers be incorporated into family life? Can they live at home? Do the benefits of family life outbalance the practical problems/challenges/headaches/  rigors of living with adult who has advancing dementia? 

The ratio of caregivers to patient around that table was 13:1. Thirteen of us did not have Alzheimers. One did. Mother was very comfortable being part of the group. The conversation was free flowing, and Mother participated. At one point she volunteered the information that Marcie, who was sitting next to her, was a very good person and deserved all the best things in life.

Marcie, by the way, agrees with that statement.

Does living with your family confer powerful but invisible benefits similar to the micronutrients found in fresh vegetables which you cannot find in vitamin pills?

Mother was surrounded by relatives in the backyard of her own house. Her birdbath, her mini-trampoline, her raspberry bushes and roses. Was she there as a charity, because she was wearing diapers and being told not to eat toys? Or was she there in the place of honor, since she was giving us this setting. We were there because of Mother. She had planned her life so that this dinner could happen. 

Mother took many steps to plan for her own old age. She did everything right, as far as providing the legal directives, the pension, the health insurance, the home ownership, the well educated offspring, the model of helping others who are helpless ( I saw this up close when she worked with Gill and me to secure Susie's guardianship, something which did not flow out of her natural tendencies or personality traits, but was motivated solely out of concern for Susie) and a entire life of non smoking and non drinking. She did everything possible to care for herself, and she valued her family.

Sitting around the table in her backyard was the result: a micro community which is "healthified" by her (her example, her bookcases, her birdbath) and which "healthifies" her back (by finding the right caregivers, reminding her not to eat toys). 

This is the model the Fremont Street Center for Healthy Aging is experimenting with.  Is it possible that some ways of living together endow health, just as some foods endow health, or certain levels of activity endow health. The intergenerational approach of the Fremont Street Center for Healthy Aging is not exactly new. Why was it discarded? When Bart, who will be three in November, visits Mother, it is super apparent that caring for toddlers and caring for people with dementia is almost exactly the same job. 

Once we get to the bottom of this research question, we will move onto the second topic of interest to Fremont Street research staff. Does Alzheimers, all by itself, cause isolation and emotional distress? Or is it the way people with Alzheimers are treated which causes isolation and emotional distress. 

Monday, July 14, 2008

Oncology Appt

Tomorrow we will be taking Mother to the oncologist.


In one of the rare moments when my professional life and my scientific duties here at the Fremont Street Center for Healthy Aging overlap, I sat down to watch TV with Mother, and Hellboy (the first one) was on. Hellboy was produced by Mike Richardson, who is an Oregonian, so it qualifies as an Oregon film under the expanded definition we are using for the festival.   Once it was on, Mother fell instantly asleep and I began blogging, so it is pretty clear that we are not among the millions who love Hellboy. This still is from the production I am watching. The guy on the right is the director, Mexican cinematic genius du jour, Guillermo del Toro.

Thursday, July 10, 2008

The Self Healing Human

Mother's discolored toe is all cleared up. It may be the problem came from Mother adjusting her sandals so tightly that they interfered with circulation. We are going to alter the offending sandal strap(s) so it is not possible for her to do this again. She can tighten them as much as she wishes, but not cause harm.

Mother is in excellent health: more trim and lively, with pink in her cheeks. She accepts her own reliance on the caregivers, Marcie and Margaret, and misses them (asks for them, comments on their absence) when they are not in the house.

Wednesday, July 9, 2008

This Morning, Thinking About Mother

Surprised to see Mother in the basement, Dennis asked Mother why she followed him down. She replied "Just looking for a little kiss". 

The Paul Simon song kept running through my head "....til he cried out/In his anger and his shame/I am leaving, I am leaving/But the fighter still remains".

Monday, July 7, 2008

Safeway Adventure

Marcie & Mother took advantage of the perfect weather to go grocery shopping today at Safeway. They went both there and back on the bus. Mother pushed the shopping cart.  Another example of holistic care - Mother was shopping, something she did every week of her adult life.

Sunday, July 6, 2008

American Beauty

Margaret took Mother to the Peninsula Park Rose Garden yesterday. The intense heat wave is over, and the weather is mild so Mother likes being out.

Thursday, July 3, 2008

She Does Yoga Too

Here's a link to The Sandwich Generation, a video by a filmmaker and a photojournalist who are caring for a parent with Alzheimers in their home. The Fremont Street Center for Healthy Aging has a more specialized focus than this family had - we are not trying to raise young children and study aging at the same time.

Tuesday, July 1, 2008

Dr. Report

The report from the visit to Dr. Harbison.

It had been six months since he last saw Mother. He checked her out thoroughly, and was not concerned about the discoloration of her toe. He recommended two things. He said he thought she should stay on the Coumadin, and that we should make an appt with her oncologist because the last time she was seen by that doctor was a year ago.

Mother has no problem going to the doctor. She is comfortable with all stages of the trip - the elevator ride, the hallway trek, waiting for her name to be called, sitting in the exam room. She was able to cooperate with all of Dr. Harbison's requests. Margaret was amazed by how relaxed she was.

Mother always liked Kaiser. She secured lifetime Kaiser coverage for herself (& Glen) when she became a civil servant. She planned to get the quality healthcare she now receives.

The discoloration of her toe seems to be going away.