Life has a lot of twists and turns and highs and lows. As Kate’s Alzheimer’s progresses, I am more mindful of such variations. The good news is that we still have far more highs than lows. New Year’s Eve and New Year’s Day have been among the highs. As I’ve said before, that doesn’t mean her memory improved or that her confusion disappeared. It means that she has been in a good mood and that we have enjoyed ourselves to the fullest.
Both days were low-pressure ones. Except for our dinner reservations New Year’s Eve and our 12:30 lunch reservations yesterday, we didn’t have any time-specific obligations. That makes both of us more relaxed. After lunch yesterday, Kate rested on the sofa while I watched some of the Alabama/Michigan game. She rested about two hours and was asleep most of that time.These two days were a great way to bring in the new year. It reinforces my belief that we have been very fortunate.
In a post one year ago, I noted several significant changes that had occurred in 2018. Among those were starting to forget my name and hers, recognizing me as her husband, greater confusion (often forgetting our house and how to get around in it, the city in which we live), sleeping later in the morning that led to our typically going to lunch rather than to Panera, and greater dependence on me with things like toileting, showering, and dressing.
For the most part these are the same things that I would say about her changes in 2019. The difference is that everything is noticeably worse than before. The exception is sleeping. That has become more erratic. On the whole, she still sleeps later than she used to do; however, she isn’t consistent. Sometimes she gets up earlier. She routinely rests right after we get home from lunch. That normally lasts at least two hours. Until recently, she hasn’t slept much while resting. Now she seems to drift in and out of sleep. She does seem to be more tired than in the past. I believe that is a result of having to work harder to get through the day.
Two other changes are worth noting. One is her physical mobility. Getting into and out of chairs or up and down steps requires a lot of thought and effort on her part. It was during this year that I got a handicap placard for the card. I have only used it a couple of times, but I expect to use it more in the coming year. Most places we go I can find a parking place that is reasonably close to where we are going, and I want her to walk as much as she can. I am, however, much more sensitive to parking than I used to be. There are at least three restaurants that I would visit were it not for the difficulty getting in because of parking or stairs.
The other thing is her problem with speech. The past six months her loss of vocabulary became obvious. I am sure it has been diminishing gradually for a long time. I suspect most of that loss has been words that we don’t use very often. Now she is forgetting words that are in everyone’s daily vocabulary. In addition, it is much harder for her to express herself. She starts to say something and then says, “You know what I mean.” If I say that I don’t, she gets irritated with me.
As I said last year, I can’t predict what lies ahead in 2020. I only know that this is a progressive disease. She won’t be better. In fact, the last year has been one in which her decline has been more rapid. Her experience on Monday of this week when she was unable to make a lot of sense throughout the day may be a sign of things to come.
Next year at this time we will be looking at a move to a local continuing care retirement community. When I checked a couple of weeks ago, I learned that they are on schedule to be ready for occupancy in January 2021. That means I will soon need to begin making preparations for a move. When I made the commitment in May, I felt that it would not be a problem for Kate. Now I am beginning to wonder. She still likes our home here. Although she doesn’t know her way around the house, and except for mornings, she seems to have a comfort level being here. I think her confusion in the morning is because she wakes and doesn’t recognize where she is. If that continues, it should not make much difference where we are. In addition, a smaller place might actually be easier for her. I just don’t know, and I’m not going to worry about it now. We have taken everything a step a time since her diagnosis. That has involved many gradual changes along the way. I expect the changes this year to be more significant, but I feel I have a game plan that is working. In addition, I have the flexibility to shift gears as needed.
Having said that, I am now recognizing that life as we have known it for the past nine years is passing away. I am particularly mindful of the things that have dropped out of our lives in recent years – our last summer to host grandchildren, our last international trip, our last visits to Chautauqua, to Kate’s home in Fort Worth, to Texas to share Thanksgiving with our son and his family, and to Memphis for Christmas with our daughter and her family. I don’t expect this to have been my last Christmas and New Years with Kate, but I know that it won’t be the same next year. I confess to more than a bit of sadness at that thought, but I believe I will adapt this year in the same way I have done before. I’ll keep my focus on Kate’s happiness and celebrating what she can do as opposed to what she can’t. I am still amazed at how much she can enjoy life. She may well continue enjoy life through 2020. My intent is to stand by her as long as she can and thereafter.
