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A Mixture of Happy and Sad

I am always glad to report the Happy Moments that Kate and I have. This is only the fourth day of the new year, but we’ve had a lot of them so far. At the same time, we are experiencing sad ones as well. I can’t say that we’ve had anything as serious as this past Monday when she was confused, frightened, and experiencing delusions off and on most of the day. She has, however, experienced some of the same things periodically all week. That has been accompanied by being tired and generally lethargic.

She is still responding positively to photo books as well as the flowers and photos in our family room but with somewhat less enthusiasm than in the past. She has also seemed more dependent on me. She wants my guidance on many things. She wants to do what is right, but she doesn’t know what that is. Increasingly, she asks me where to put her napkin. At least once this week, she couldn’t understand what I meant when I said she could put it on her lap and asked me to do it for her. She more regularly needs my help with toileting, washing her hands, brushing her teeth, and showering.

On the other hand, each of us enjoys being with the other. I have actually enjoyed not having a sitter twice during the holidays because both Christmas and New Years fell on a Wednesday, a day for the sitter. Yesterday, she was very tired when we got home from lunch. I was afraid she might not be as receptive to the sitter, but that wasn’t a problem at all. She really seems to have developed a comfort level with both of the sitters, especially Mary who comes on Wednesdays and Fridays and has been with us over two years. She does ask about me (where I am and when I will return) while I am gone. She also displays varying degrees of enthusiasm when I come back. Yesterday, she was especially happy to see me.

All in all, it seems like she has not been doing as well over the past week or so. I have noted before that mornings are her most difficult time. I find that understandable since she hasn’t had any external stimulation for eight to twelve hours. She usually recovers a short time after she is up. Now she seems to be having similar experiences in the afternoon when she rests. The other night she wanted to watch the news with me. I think it overwhelmed her brain. The next thing I knew she was having a delusion.

The last few times we have looked at her photo books, she has told me she is tired and needed to rest not too far into the album. When she is resting her mind wanders, and she imagines people and situations that I am supposed to know about. She says things like, “What time will she be there?” Or “Who else will be coming?” “Who are we meeting?” I try not to ask who because she always believes I know. I give her an answer knowing that she won’t remember what I said.

Music, whether on YouTube, or our own audio system is often good for her. I think that is because she can enjoy it passively. It doesn’t require her to try to understand or remember. She simply enjoys it. She does, however, frequently ask me who is singing. That happens a lot with the YouTube videos.

I take all of these things as signs that 2020 will be a very different year for us.

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An Example of Kate’s Insight

Kate and I had an unusually good time at lunch yesterday. I commented on how relaxed she looked. She said she was, and I told her I was as well. Then I said, “I think that’s because we didn’t have to rush to get here.” I went on to say that I like to be punctual and am least relaxed when I am pressed for time. I don’t remember exactly what she said, but here is the meaning. “I like it that when you are in a hurry. You try not to make me think you are.” She knows me pretty well. Alzheimer’s hasn’t taken that away.

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Lots of Happy Moments the Past Two Days

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.

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She Needs and Appreciates Me

I had just finished my walk and was getting ready to complete a blog post yesterday morning when I heard Kate’s voice over the video cam. I went to her. She said, “I am glad to see you.” I said, “I’m glad to see you.” Then I asked if there was anything I could do for her. She said, “Yes,” but she didn’t say what. She was pretty groggy. I asked if she would like to go to the bathroom. She said, “Not right now.” I said, “It sounds like you would like to rest some more.” She nodded. I started to say that I would be in the kitchen when she said, “Don’t leave me. I like you to be here.” I said, “How about my going to the kitchen and getting my things and coming back and sitting in the chair right here.” She that would be fine. When I returned, she thanked me for being with her and said, “You don’t have to say anything at all. You can if you want to.” She added, “You take good care of me. I don’t know how you do it?” It’s this kind of appreciation that gives me encouragement to do everything I can for her.