This post got way longer than I intended, so I am going to separate it into two parts. It is about the last 2 years of my mother’s life, and the way she died. I believe the story illustrates aspects of the treatment of the very old that trouble me.
My mother was the kind of woman you notice. Her hair was black and she had a deep widow’s peak. She stood straight, she was slim. For her time she was tall. She cared a lot about her appearance and she spent money on clothes when she would skimp on everything else. She was intensely intellectual. She had a brilliant mind, she spoke and wrote well. She was a social animal and loved to be the center of attention.
She had a Ph.D. in economics and had written a couple of books and taught college. She continued her intellectual life into her old age. After she retired to La Jolla, CA she spent a lot of time at the Institute for Continued Learning at UCSD.
At the age of 95 she agreed to give a lecture on economics at the Institute. She worked hard writing it all out. Having to read it distressed her because when she was younger she wouldn’t have had to look at her manuscript. Nevertheless, after the lecture she told me, “A very old man [remember, she herself was 95] hobbled up to the podium and said ‘that was the best lecture on economics I ever heard’”
Besides economics and politics she had a passion for music and theater. When I visited her she would tire me out taking me to concerts, plays, and to lunch and tea with her many friends.
Gradually I began to see that she was slipping. Every few months I would travel down the west coast to La Jolla to check on her. She became more and more difficult. She wanted to discuss her problems every minute, and she became angry if I occupied myself with anything else, like reading a book or listening to the radio. She was aware that she was deteriorating mentally, and she hated it.
In 2004, when she was 98, it became clear to me, and to my sister as well, that she could no longer function on her own. Up to that time she had been living in a little apartment near the sea in La Jolla.
She was forgetting appointments, forgetting to pay bills, and her gait became a sort of shuffle (a symptom of Alzheimer’s), her spelling deteriorated, and she frequently showed signs of confusion about daily activities. We wanted to let her stay in La Jolla, a place she loved and considered home, and where she still had a few friends living. However, there was no facility there that would take someone with even mild dementia. The best we could find was a place about 40 miles away.
I persuaded her to come back to Bellingham near me. She had tried living here for a while after she sold her pretty house in La Jolla, and I packed everything up and moved her up here in 1997. But she pined for the warmth and familiarity of her southern California jewel of a village, and so I packed her up and moved her back again. That was in 2000. Now, in 2004, we were preparing to make yet another move.
At first I thought she could still function in the retirement place she had lived in when she was here before. We had all the papers ready, and she was to move in the next day when her best friend in that retirement place suddenly died. She declared that the shock was too much and she couldn’t live there.
I have a duplex here on my island that I live in one side of, and I moved her into the other apartment. It wasn’t ideal from the point of view of social life, and she didn’t like the isolation of the island, but for a while we muddled along.
It was difficult, though. She was demanding and wanted me to be with her and entertain her all the time. She really couldn’t read much any more and my attempts to find her friends among the other older people on the island were not successful. She needed help with bathing, and I am a small person, smaller than my mother, and I was already in my 70’s. New things were no longer easily managed. I found I had to watch her, because she would decide to take walks and get lost. People would pick her up along the road and bring her home.
For reasons not relevant to this account I had to go away for several months, and I arranged for people to take care of Mother full time.
When I came home at the end of the summer my sister and one of her daughters visited briefly. The main person who was taking care of mother was a wonderful lady named Stephanie with whom my mother had definitely bonded. Things seemed to be going reasonably well. After I returned Stephanie continued to come part time which gave me some respite. Fortunately, Mother had enough income to pay for all this.
I got tickets to some Shakespeare plays in Vancouver because mother was very keen to see them. Stephanie went with us and we stayed in a hotel. There were 3 plays. Mother was having difficulty getting around, so we got her a wheelchair and had hearing aids for the plays. I felt that she wasn’t getting much out of the plays – she did a lot of dozing.
She was not doing well in Vancouver. She had difficulty with bowel incontinence, and it was a struggle for Stephanie and me together to get her in and out of the bathtub to clean her up. I became quite worried and wanted to take her home to the doctor, but Stephanie persuaded me to let her see the last play.
We left Vancouver and I drove her directly to the hospital where she stayed for 4 days. She seemed to have become practically immobile, and I thought perhaps she had had a stroke. They never determined what was wrong with her, but after the requisite amount of time for Medicare they referred her to a rehab center. There they put her on a regular ward at first, but soon moved her to the dementia unit which had a security lock.
She was soon able to walk again and she had various sorts of therapists. When she was first in rehab she was having serious delusions, like thinking her feet were musical instruments, but she improved quite quickly with therapy, and by the end of her stay was no longer having bizarre thoughts. Her bowels came under control and she was walking better. After 6 weeks the rehab administrators declared she would not improve with more treatment (that’s Medicare’s time limit) and that she would now have to pay $6,000 per month to stay there not including any therapy
Now there was the dilemma of where she should live. The medical opinion was that she needed institutional care and could not be at home with me. My sister was also opposed to her living on the island. I did not want her to stay in the rehab place. It had a dismal look about it and it smelled bad. Some of the other patients were in much worse shape than Mother, and could be disturbing. One poor lady went up and down the hall continually shouting, “I want to go home.” Another, a good looking man in his 60’s, would come up to every visitor and say, politely, “Could you tell me how to get out of here?”
We found a reasonably pleasant place where the patients were segregated according to the severity of their dementia. Because of Medicare rules I could not get any further therapy for her. The medical opinion was that it would not improve her condition, and she couldn’t have therapy without doctor’s orders. I continued to have Stephanie visit with her a couple of times a week. I took her out to lunch at least twice a week and to all her doctor’s appointments. But she hated living there, and whenever I returned her to the facility she would beg me not to make her go back. It was hard for both of us.
There were some lighter moments. The residents at the facility often strayed into each other’s rooms, and one day when we were having lunch at Anthony’s she complained to me repeatedly that there had been a man in her room the night before. I told her not to worry about it and made a mental note to mention it to the caregivers. After lunch, when I took her back, a new sign had been placed directly in front of the outside door that said “Dementia Care Unit”. She read it and exclaimed, “Dementia Care! No wonder there was a man in my room!”
Some days her memory was pretty good, and there were other times when nothing would trigger remembrance of past events. One day I mentioned Kitty, her step-daughter-in-law, but I couldn’t evoke a recollection of who Kitty was. The next time I saw Mother I tried Kitty again. “Oh, that poor woman, she works so hard and she has so little. I wish I could do something for her,” said Mother. She remembered Kitty perfectly.
Once as we were driving through Bellingham she looked around and said, “I used to live here, you know. I had all my wits about me then.”
She never had a visitor she didn’t recognize. A friend from New Zealand came once, the son of Mother’s best friend at college in New Zealand. It had been about 10 years since she had seen him, and I warned him that she might not know him. But she did, she was delighted to see him, and they had a good time together that day.
I have told enough of this story to make my first point about the last, difficult part of life for many of those who live to be very old.
I believe it could be a lot better. The facility my mother was in cost more than $5,000 per month, and it was basically custodial care only. There’s an attitude that says, “They’re old; they can’t be ‘improved’. Put them away, play them some Lawrence Welk now and then and forget them.”
I believe we shouldn’t just give up on people with Alzheimer’s, or dementia. I saw that therapy was helping my mother and they cut it off because of Medicare regulations. Perhaps it isn’t so much the therapy, but the intelligent attention. It isn’t good enough for a well meaning young person with no education to say, “How are you today, Marion.” What’s needed is a person, or persons, with some expertise, interest and intelligence to work with these folks. I could have had my mother with me with that sort of help. And I needed help for things like bathing. I know in some cases bathing help is available, but it wasn’t for us because of the island location.
My mother could afford not only the care she got but also many extras like having Stephanie visit, going out to lunch frequently, and shopping for clothes, which she loved. But many of the people in the same facility were just spending down until Medicaid took over when their money ran out.
It is inevitable that some old folks will end up without family to care for them, but there are others like my mother, who have loved ones to keep them at home if adequate help were available. There are programs to help people with disabilities live as normal a life as possible. Something like that is needed for the very old.