While we were out

About a week ago Jean and I went to the store and I had my camera so I took some recent photos of her. Jean pushed the cart around and was very social with many people. Later we had a snack and OJ, she was content making some of her folding art while we enjoyed our small meal.

Hospice Dog

Author Jon Katz has an article on Slate about bringing his therapy dog to visit a woman with advanced Alzheimers.

Second Marker

The second marker for the progression of Mother's illness is the trouble she has taking pills. Up until now, she has been able to swallow her pills whole, as directed. Just since Marcie and Margaret have been here, she has lost the ability to do this. Sometimes she can, but more often the caregivers empty the contents of her hydroxyurea ( treats her blood condition) capsule into a small amount of applesauce and give it to her that way. They also give her warfarin (a blood thinner, prescribed after her blood clot)) this way.

Mother has no trouble swallowing. She enjoys meals, both the food and the company.

What she lost was the ability to follow directions. Before she could comply with the directive "Swallow, Jean, don't chew it!" Now she can't.

Welcome Christina & Rebecca

Mother just spent Saturday with her two new Saturday caregivers. Rebecca Field, who has known Mother for 40 years, is taking care of her two Saturday mornings a month. Christina Elston is taking care of her Saturday afternoons.

Rebecca is studying gerontology at PSU. She initially agreed to take care of Mother for two Saturday mornings because we were short staffed during Margaret's August vacation. She wanted to help us out and get some personal, hands on experience that her academic program can't deliver. She likes the Fremont Street Center for Healthy Aging so much she decided to continue.

Christina's last caregiving job was as home health aide to a man with cerebral palsy. She did this for a year. She also has worked in nursing homes, where she said she was responsible for delivering care to 20 Alzheimers patients - simultaneously. She and her husband recently moved to NE Portland (they live not far from Tom). She also works for Community Warehouse. Christina was born in Portland, but grew up in Missoula.

Mother's most active time of day is the afternoon. Today the block association was having a barbeque at 5:00. Mother, Christina, and I walked down to say hello and to introduce Christina to Mother's neighbors. Mother has no trouble recognizing John Morrison as her special friend. He spent time with her at the party, and walked back up the house with us, Mother holding his hand.

It is an artistic block. John Morrison's recent book of poetry has been nominated for this year's Oregon Book Award. He is up against stiff competition - both Judith Barrington and Brian Doyle have books nominated in his category. A few doors down is installation artist Jacqueline Ehlis , whose most recent exhibitions have received ecstatic praise. Inbetween John M. and Jacqueline E. is a family of Robert Hayden, a jazz musician.

It is an ingenious block. Dennis blogged about Russell Senior, who plants wheat every year in his front yard and makes strawberry shortcakes for the entire block with his harvest. Architects Kathryn and Howard have a container vegetable garden in their driveway which looks as if it will continue throughout the cold season.

Right now Dennis is out at the block party showing films. Mother is sound asleep. Christina is pedaling home on her bike.

Midnight Rambler

Taking care of Mother in her own home has always meant two things: taking care of Mother and taking care of her home. The central challenge where these two goals converge is Mother's Alzheimers' caused incontinence, which makes her a hazard to her own home. Without intervention, incontinence renders any environment unlivable. This is one of the main reasons people get moved to nursing homes.

Here at the Fremont Street Center For Healthy Aging, we are interested in delivering reality based care. We want to see Mother's Alzheimers for what it is (an illness), and what it is not (the end of life as we know it). We don't want to exaggerate it or underestimate it. We want to respond, with individualized attention, to the impact of Alzheimer's on this particular, unique human being.

Incontinence has provided one marker for the progress of the Alzheimer's caused dementia which has disabled Mother for at least six years. In the spring of 2006, when Dennis and I arrived in Portland, Mother had stopped being able to do housework, but she still was putting herself to bed, and getting up in the morning without help. She made her bed every morning. She slept in her clothes. Occasionally she experienced incontinence while she slept - I only knew this because we would find her standing in the living room wrapped in a blanket. She knew how to take off her wet pants, but had lost the ability to dress herself.

About a year ago, she moved to wearing paper diapers around the clock. This turned out to deliver immediate huge psychological benefits. She was relieved not to have constant daytime worry and embarrassment about minor incontinence. Paper diapers were a godsend which returned her dignity to her. She was visibly more relaxed. Around this time, she lost the ability to put herself to bed. I mandated a bedtime for her caregivers to observe. In a rare moment of lucidity, she thanked me for doing this.

She lost the habit of making her bed every day around the same time as she lost the ability to dress herself and to put herself to bed. She never lost the ability to use the toilet.

She still has not. However, her dementia has progressed so that in addition to using the toilet correctly, which she does 98% of the time, without supervision, she will also mistake/appropriate other objects to serve as a toilet. Because there is always someone here with her, this has not been a problem. She can be redirected to the bathroom, and she has no objection to that.

In the middle of the night, however, there is no one there to redirect her. She has trouble finding the bathroom very rarely, but when it does happen, we come down and discover a wet spot on her bedroom rug. We also, for the first time since the arrival of the new caregivers in February, have begun finding wet spots in her bed. Her only problem was finding the toilet to urinate. She never has trouble finding it for bowel movements.

We were temporarily stumped as to how best to address the wet bed dilemma. All the best support in the world delivered during the day couldn't help her during the night, when everyone was asleep. Then, in a searing flash of insight, we realized that we could change Mother's diapers midway through her night.

I have begun doing this. I gather it is a standard practice in nursing homes. I thought Mother would dislike it. She doesn't mind. William used to change her diapers in the middle of the night. So she had a memory of the experience, and it wasn't new to her. She is so fit that she can help, even lying on her back.

The true obstacle to this, most practical solution to an Alzheimer's caused problem, was Dennis' and my own emotional reaction. Changing your Mother's diapers is one thing when she is standing there, clothed, during the day. When she is lying in bed in her pajamas, the role reversal you are experiencing is so complete it has to be confronted, and the emotions processed. Dennis, who has been able to do everything else with Mother, found this job impossible. There was nothing in him which found the practice of waking up a woman and pulling off her pants acceptable. But after a few tries, I have found that changing Mother into clean diapers while she is in bed is not that hard.

The reason I am spelling this all out in such detail for my fellow aging specialists across the country is that this particular job - that of addressing incontinence- is what sends most elders to nursing homes. This is what it comes down to. I am not minimizing the size of the problem. Eventually for us too this may become the problem that sends Mother to a nursing home. But if we had thrown up our hands and said "Impossible!" before trying the simple step of changing Mother's diapers while she was in bed, we would have been essentially outsourcing one extremely simple intervention to the staff of a nursing home, and asking Mother to move out of her house in order to make that happen.

We would be changing her whole life so that professionals could change her pants.

This problem solving update is the latest new development in our daily routine here at the Fremont Street Center for Healthy Aging. Mother remains physically healthy, active, and emotionally connected to the people around her.

Harvest Time

Yesterday Mother's kitchen was overflowing with red, ripe, juicy, organic tomatoes. Too many to eat in salads! We planted eight tomato bushes last June, and all were productive. Marcie found one tomato which weighed two pounds.

Marcie took on the challenge of turning this bounty into food. She spent the morning chopping onions, garlic, tomatoes and our own basil. By the end of the day she made four freezer containers of tomato sauce, and one delicious lasagna dinner.

Dennis and I were gone for much of the day. I left with the counters covered with fruit and came back in time to see thick sauce, simmering on the stove. From what I could see, a sunny day filled with cooking is Mother's idea of a good time. She was positively purring with contentment. When Marcie works in the kitchen, Mother putters around beside her or sits at the dining room room, watching what is going on. Cooking always makes the house seem the opposite of empty. Maybe this is why Margaret grated up a bunch of carrots and made a cake on Sunday. Cooking grounds Mother. It smells good, feels good, and results in food which tastes good -- everything about it is familiar to her. You don't do it unless you're planning a dinner, and Mother completely understands dinner.

I was struck by how completely Mother has switched roles. She is like a child, happy to have her mother nearby. When Marcie or Margaret is busy in the kitchen, her world is complete. Jenna used to be the same way.

Sunday AM

Mother went to church this morning with Margaret and myself. Margaret has been quietly and persistently advocating that Jean develop more of a social life. We have been thinking about starting a group which welcomed caregiver and caregiving recipent duos, but we never thought of the social life going on each Sunday one block away at Fremont Methodist Church.

Mother sat through the entire service, participating when she could. They have a wonderful ( volunteer ) choir, and while they were singing the anthem, the spiritual "I Want To Be A Christian", Mother leaned over to me and said " I used to do this."

After the service she was personally greeted by a wide variety of congregation members, one of whom turned out to be a caregiver herself.

The church is small - about 60 in attendance today. They emphasize inclusivity, so it is a perfect match for Mother. Margaret plans to take her back again. This Christmas season Mother may get a chance to hear the Christmas choral music she loves so much.

Walking Down 25th On a Sunny Saturday

It was such a beautiful day on September 13 that I was able to get Jean out of the house with no coaxing at all. Also, without a top coat. You have no idea how rare this is.

It was around three in the afternoon.

The walk started with a bang when Anna went racing down the opposite sidewalk. Anna is a standard poodle. She has no fancy hair cut and is very friendly. Someone down the block had called for her and off she had went. A galloping standard poodle, fancy haircut or not, is a sight to see. Katherine followed along shortly after with leash in hand, calling for Anna to come back. Anna finally did, meeting Katherine just about exactly across the street from us. If I had been in a capricious mood I might have called for Anna myself and she would have bounded over to us. A welcoming look probably would have worked just as well. I stayed the impulse and Katherine got Anna to sit before I changed my mind.

Jean and I then continued south.

Further down the sidewalk Jerry, who lives three houses down on same side as us, was talking to a man who we didn't recognize. They ended their talk before we got to them. The last time I saw Jerry was the night before he and his wife Teresa were going to Italy. I asked about the trip. He gave us a nice report and asked if we had sampled the lemon cucumbers. I told him that we had enjoyed them immensely. Our garden had produced two or three hundred cucumbers of two different types. We gave away dozens of them. Jerry in return had given us some of his, of the lemon type, which I had never heard of.

It is a very gardening street. Katherine and her husband Howard grow stuff all winter. Cattycorner at the end of the block is a man who grows a crop of wheat in his yard. He is also a great connoisseur of strawberies. Every year he grinds his harvested front yard wheat into flour and makes it into shortcakes for his own private strawberry festival. Just about everyone in the neighborhood shows up. Jean and I attended the last one and had an extremely nice time.

We continued our walk without anything else exciting happening. It is expected to be another beautiful day tomorrow.

Dennis

Second reported Glen sighting

Mother pointed to an empty chair across from her at the dining room table and said "There he is." "Who?" Dennis asked. "Glen." she replied. 

Hallucinations are part of Alzheimers. Mother mentioned seeing Glen before.

It Takes A Village, Again

I found Mary Pipher's book in Mother's room. It is a collection of case histories.

All of Dr. Pipher's case histories follow families as they learn how to work together to care for a newly helpless member. She advocates thinking of dependency as an inevitable and necessary state we all pass through - everyone as infants and most of us as old people. She recommends accepting as natural that people need help. Everyone. Everyone needs help. There is no point to pursuing an ideal world where no one needs anyone.

It is as if she had been present when we drew up the plans for the Fremont Street Center for Healthy Aging. It is as if she sat on our Board of Directors. 

Mother & Rabbits

On the way home from a walk, Dennis and I ran into Marcie and Mother. Together we visited Kathryn & Howard's vegetable garden, then Mother and Marcie continued the walk, and Dennis and I came home.

Twenty minutes later, Mother and Marcie trooped in the door. They had been invited to join by a neighborhood mom to eat ice cream with her kids on their front steps. Four children, all under the age 10. 

The children brought out their two pet rabbits to show Mother. She was more interested in their snow white Cairn terrier. Marcie said she enjoyed the visit very much.

Labor Day Report

On Labor Day we gave Marcie the day off. Margaret was not yet back from Burning Man. So Dennis made his famous Greek Salad, using tomatoes and cucumbers from the garden for Mother, me, Tom, Patti, Austin, Tim Smith,  Jenna, Charlie, Sam, Joy and Bart.

He also made Mongolian beef and brownies. 

Tom and Patti brought strawberry rhubarb pie. Austin arrived after visiting his mother in the hospital. Tina had emergency surgery for an ulcer earlier that day.

The next day Sam, Joy and Bart returned for the "Last day of summer vacation" in the back yard.

These three junior research staff members from the Emerson Avenue Center for Early Childhood Development are Mother's most frequent and enthusiastic visitors. Their own investigations into the aging process are well under way - Sam weighs 60 pounds and wears a size 1 shoe. Joy lost her first baby tooth and just started kindergarten. We're waiting to learn more about Bart's latest research. We can't get any information about it out of him. His favorite word is still "no".

Mother effortlessly mingled with dinner party guests, and participated in the conversation.

Oregon/Burning Man

To my surprise, I learned that Burning Man is the brainchild of an Oregonian, Larry Harvey. 

Burning Man was part of my life this summer because both Margaret Beeson, Fremont Street's resident Art Therapist, and Damon Eckhoff, the web designer for the Oregon Sesquicentennial Film Festival, were attendees. Margaret worked as a cook, Damon served coffee ( I think).

Margaret came back with a smile and a tan. She said the much reported dust storm was not severe enough to cause concern, and only occupied two days out of the entire festival. She and Depak, her boyfriend, were in charge of feeding 20 people throughout the festival - I asked her if they brought enough food along to last and she said they did. Miraculous!

Both Margaret and Damon are new to Portland. Margaret is from the Southwest; Damon from the Midwest. Both are artists. I suspect neither are aware that Burning Man is the creation of another Portland artist.

Jean Wyatt/Joe Biden: Separated at birth?

It has come to our attention that Mother's habit of touching her forehead to that of her conversational partner (cited in a previous blog posted by Jenna)  is one she shares with Democratic Vice Presidential candidate Joe Biden.

The Washington Times reports:

Mr. Biden also is able to connect more directly with caucus goers in part because his events are intimate. In Iowa City this past summer, he gripped a woman's hand and looked her in the eye while answering her question about regime change. He has a habit of touching his foreheads with voters when he's trying to make a point.

Perhaps Mother's great unexplored potential was as politician. She did get a Masters degree in Public Administration.

Margaret Beeson Appreciation Days

We're celebrating Margaret Beeson Appreciation Days here at the Fremont Street Center for Healthy Aging. Margaret is away on a two week vacation. While she is gone, Mother's usually stellar night time independent toileting is a little off. We don't know if there is a cause and effect relationship, but I am inclined to think when Margaret returns, Mother will be more settled.

Mother openly prefers her caregivers. Last night, after Nicole went home, Dennis and I made dinner to eat with Mother. She sat down and looked across the table where Margaret would ordinarily be, facing her. "Where's the girls?" she asked. 

Margaret is on a working vacation, feeding people at the Burning Man arts festival. She and her boyfriend have been doing this for several years. When she gets back, she may need a rest. I hope she'll be as glad to see us as we will be to see her! At least we can promise no dust storms.

Meanwhile the daily festivities observed here at the Fremont Street Center for Healthy Aging to commemorate Margaret Beeson Appreciation Days give us ample opportunity to honor how highly skilled Margaret is. Mother will be glad when she returns. She tolerates the step down in quality that Dennis and I represent, but she recognizes us for what we are - amateurs.