This has been a week when I feel I’ve had more to say than I’ve said. I’ve been busier with Kate, and a few holiday related tasks. In addition, I have been dealing with a few household issues, a leak in our pool, a leak in a pipe under the house, a toilet that needed fixing, and some minor electrical work. Perhaps more than anything else, I haven’t been exactly sure how to express what I want to say. It’s all wrapped up in a single word: change.
Haven’t I said that before? Yes. Maybe that’s why it’s hard for me to say it again in a way that distinguishes what is going on now from the past. I’ve devoted a little more time this week to paying attention and thinking about that rather than writing. I haven’t considered this a waste of time at all. I’ve read about authors who have made a point of saying that the “thinking” part of writing for them is the most valuable part. With that in mind, let me tell you about some of the things that are going.
Kate more frequently expresses insecurity about what to do when she wakes up, when brushing teeth and bathing, when we are in restaurants. She was especially uneasy during our Christmas dinner at Ruth’s Chris. That may have related to the somewhat more formal nature of the room, the service, and the fact that this is not a restaurant we often frequent. It had been several years since our previous visit. That was with the staff at the office and a time when her Alzheimer’s affected her much less than it does today. Whatever the cause, she was never fully at ease.
Her morning confusion seems to be more severe now. On several occasions, she was so frightened that she hasn’t wanted to get out of bed. Each time I have been able to help her recover, but it takes longer than the past. That happened day before yesterday. She didn’t know “anything.” I talked with her very slowly and calmly. She didn’t know who I was, but she trusted me. I was eager to get her up so that we could have lunch together before the sitter arrived, but I knew that rushing her would make things worse.
I put on some soothing music at a very low volume, and we talked for fifteen minutes or so. Though I talked about her parents and our children, nothing rang a bell. She became comfortable talking with me, but she was still confused. Then I decided it was time for something more upbeat. I remembered that several weeks ago she had recognized and liked the song “A Bushel and a Peck.” I played it. The minute she heard it she laughed. We were making progress. I was streaming the song from a playlist of Doris Day music, so we heard a couple of other old songs we both recognized. Then I switched to the soundtrack of My Fair Lady. By the time we got to the third track, I suggested we go to lunch. She didn’t jump right up, but she did let me ease her up, and we got ready. She was fine.
She struggles more with her clothes than in the past. Sometimes she wants to be independent, and I let her do what she can. It isn’t long, however, before she asks for my help.
Her vocabulary is diminishing. She often says, “I don’t know how to say this.” She can’t pull up the words that express what she wants to say. That is more than a vocabulary problem. It is also a problem organizing her thoughts.
Along with that she sometimes fails to recognize common objects. Ironically, that almost always happens with her iPad. When she sees it, she asks, “What’s this?” Last night I handed her toothbrush to her and didn’t know what it was or what it was for. I explained how she should use it. At Panera this morning, she looked at a napkin and asked what it was.
I have no way of measuring this, but it seems like she does not know my name or our relationship for a longer time each day. On the other hand, she almost always feels comfortable with me. She trusts me. It is when she first wakes in the morning that she is least likely to know my name or relationship. She does, however, know to call me in the morning. Most of the time, she just says, “Hey.” Interestingly, there are times during the day when she needs something and calls me by name. This seems to be a example of a simple “stimulus/response” behavior. She occasionally asks my name shortly after using it.
Our Christmas Day conversation when she couldn’t remember anything about her mother was a striking first. She has always retained strong and very positive feelings for her mother. I thought that would be the last memory to weaken. Of course, that didn’t last. I haven’t seen any similar signs since then.
There are more times like this when she seems to be in a fog. These seem to occur most frequently in the morning when she wakes or during the day after resting a while. It is like her brain closes down while resting or sleeping. Then when she opens her eyes and looks around, she doesn’t recognize anything or in some cases, she has hallucinations. After resting in her recliner a while the other day, she opened her eyes and pointed to something across the room and said, ““It’s been a long time, you know.” <pause>. Then she pointed to the ceiling and said, “Hey sit down. All of you.” (Chuckles)
She talks in her sleep more. Sometimes I talk back to her, and she speaks to me while still appearing to be asleep.
Her vision is worse. I think that accounts for some of her uneasiness when walking from the car to a restaurant and back as well as her difficulty getting seated or going up and down curbs. She frequently fails to eat food on her plate because she hasn’t seen it. Occasionally, I walk to another room after we have been talking. When I walk in moments later, she doesn’t recognize me and asks, “Where did he go?” If I say, “Who,” she usually says, “The other guy. The one I was talking to.”
She loses me easily. Sometimes that occurs when we are within a few feet of one another. The other night at a nearby pizza place, I saw that there was just one remaining booth and walked ahead of her to claim it before someone else. When I looked around she was looking for me. We looked at each other, but she didn’t recognize me until I walked closer. She was frightened that she had lost me.
Surprisingly, she seems to be rather good at seeing small spots. It is not unusual for her to eat everything on her plate and then look for tiny specks of remaining food that she picks up with her finger.
Her sleeping pattern is more erratic. She had a long period of time when she slept regularly until 11:00 or after or when I woke her. More recently, she went through a period when she would wake up early and go to the bathroom then go back to bed. I’m not sure there is a pattern anymore.
She has more problems with eating. She is particularly confused when she has both a fork and a spoon. If she has soup, she usually begins to eat it with a fork. Then I show her the spoon. After she uses the spoon, she uses it for everything else.
She also uses soups and condiments as sauces for other parts of her meal. For example, we eat lunch at Bluefin on Saturday. They prepare excellent grilled salmon that she likes. It is not unusual for her to dip her salmon in the ketchup that accompanies her sweet potato fries. I brought some lobster bisque home from lunch on Christmas along with Our sweet potato casserole. She used the bisque as a dip for the casserole.
As she was finishing her meal last night, she poured all of the remaining ice and tea onto her plate with a few pieces of chicken and began to eat the dozen or so flat, square pieces of ice along with her chicken. She didn’t leave a speck of anything on her plate or the two cups with her side dishes of strawberries and applesauce.
She is beginning to forget how to take her pills. Sometimes when I hand her a pill and a glass of water, she asks what to do with it. She occasionally puts the pill in her mouth, drinks the water, and doesn’t swallow the pill. When I hand her the next one, she says, “What do I do with this one?” I have to watch her more carefully than in the past. She can take one pill and forget the others.
Yes, life is changing. There are more things that demand my attention. Having said that, we still have a good time together. I’ll say more about that in another post.
