Change has become a normal part of our lives since Kate’s diagnosis in 2011. It’s difficult to predict how Kate will feel each day. Fortunately, she has an abundance of good and very good days, and on most days, more highs than lows. Alzheimer’s, however, brings with it a host of challenges. The past 12-14 months have been among the most difficult ones of our marriage. Despite that, with only one day remaining before the new year begins, I can honestly say that I’ve never felt more upbeat than I do right now. And it all relates to Kate.
The biggest changes we faced this year really began just before Thanksgiving 2020 when Kate and I tested positive for COVID. Prior to that, she had been declining and showed the first signs of losing her mobility. I believe Covid pushed that ahead at least six months if not a little longer.
The experience was traumatic for her. She was in the hospital for eight days and bedridden for seven weeks after returning home. That meant everything we had to do for her had to be done while she was in bed. She didn’t like that and was verbally and physically combative whenever we had to move her.
We needed additional in-home care. For three years, we had in-home care four hours a day three days a week. We were fortunate to have had only two or three different caregivers during most of that time. When Kate got home from the hospital, we increased the care to 7-8 hours a day seven days a week. That involved more than ten different caregivers. That meant we didn’t have the kind of consistency I would have liked.
On top of that, we were scheduled to move to our retirement community in April. There was a lot to do in getting our house on the market and downsizing to a two-bedroom apartment. It’s a testimony to how easy my life has been that this was the most stressful period of my life.
Although our house sold quickly, and I was happy that we made the move, all of my normal routines were radically disrupted. That itself added a bit of stress. Fortunately, I began to develop new routines and to appreciate the various services that a community like ours offers. Life has certainly been easier here. It is also a very supportive community with an excellent staff that works to make the residents happy.
With the move, came a change in our caregivers. Now, we have one caregiver who is with us ten out of every fourteen days. She takes off every other weekend. Our only problem has been finding a person to fill in for her that weekend. We have another caregiver who comes every Friday. She’s been with us for more than four years. Unfortunately, I received word a few days ago that she is retiring and won’t be with us after today. On the whole, however, we have more consistency among our caregivers now than we have had in over a year. That’s been a good thing.
The best news I have about this year is Kate’s adjustment to her COVID experience and our move. At the time of our move, we were getting her out of bed a few days each week. That improved several weeks after the move, but she was still combative though less so than in the past. In another few weeks, we were getting her up every day.
That was followed by getting her out of the apartment a few times each week. We were out for a limited time and just strolled through the hallways and back home. Several times when the weather was ideal, we walked through the park that is on the grounds across the street from our building.
There are quite a few areas in our apartment and in the hallways of our buildings where we go from the floor to a carpeted area. Kate was frightened by the slightest bumps when we crossed them. As she began to feel more comfortable, we began to visit one of our cafes for ice cream in the afternoon. That is now almost a daily activity for us.
For a long time, I relied on carryout from the dining room for our evening meal. Then two or three months ago, we started eating in the dining room. That and our afternoon ice cream stop have become a very pleasant part of our day.
The best change by far has come in the past couple of months. Kate seems considerably more at ease than she has been since COVID a year ago. She is much more cooperative when we change her, dress her, and get her in and out of bed, her recliner, or her wheelchair.
She has also begun to respond to other residents when they speak to her. A few days ago as we were leaving the dining room, we saw four other residents. As we passed their table, Kate said, “How are you guys tonight?” Then she added, “What’s so funny over there?” Another night, the director of food services stopped at our table. He said, “How are you Mrs. Creighton?” Kate said, “I’m fine, but who are you?” On another occasion, one of the food service staff came to our table. She spoke to Kate a few minutes. When she said she was leaving for the night, Kate was sad and said, “I love you.”
Like so many other changes, I’ve tried to discover the cause. That’s always difficult. Most of the time I’m not sure. When I first noticed the change in her comfort level, I considered two possibilities. One is that it arises out of unknown changes that take place in her brain on a daily basis. For example, she can be at ease one moment and the next moment experiences a delusion that disturbs her.
The other possibility is that she has simply gotten used to life the way it is now. We have more consistency with our caregivers, and we follow a regular daily routine. As I suggested above, we started making gradual changes when she came home from the hospital. Although she’s never shown any sign that she recognizes we are living in a different home, the move was accompanied by significant changes. We continued to introduce her to new things and have now established a routine with which she has grown accustomed. At least, that’s what I believe, and for the moment, I’m sticking to it.
Apart from that, music continues to be very important to us, and our relationship is very strong. That doesn’t mean she always remembers my name and that I am her husband. It means that 90% of the time she recognizes me as someone familiar to her and someone she likes and trusts. Our relationship has never been stronger.
For all of these things, I am grateful and “feeling good” as we move to 2022.
Happy New Year to All.