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Some Things Work. Some Don’t

I’ve often thought that a large part of caregiving is either preventing or solving problems. I haven’t tried to keep a tally of my victories and losses, but we seem to have gotten along reasonably well. Of course, one of the reasons is that I keep discovering things that Kate can’t do. That’s when I grasp that I am the one who has to change and adapt to what she is able to do.

In yesterday’s post, I mentioned that I had taken photos of the primary screens that she faces when working her jigsaw puzzles. I thought that was a pretty clever idea. When I shot each photo, I put my index finger on or up against the button or place she needs to touch in order to pull up the next screen. How could I go wrong?

It’s not really hard at all, to go wrong that is. All you have to do is think like someone who doesn’t have Alzheimer’s (that would be me) instead of one who does. Kate couldn’t connect my photos with what she was seeing on her iPad even though they were almost identical except for my finger in the photos. I worked slowly with her for about fifteen minutes before I could see that what I was doing was causing her more frustration than the problem I was trying to solve. It is actually much simpler for her to ask me what she should do next than to translate my pictures and do it herself. When I stopped to think about it, her system was working for her all along. I was really addressing my problem of having to get up from my chair to help her.

Her most critical problem seems to be her eyesight. That’s true whether she is looking at the screen on the iPad or my photo of the screen. That relates to her Alzheimer’s and not to the physical properties of her eyes. As well as I can understand it, her problem is knowing where to focus her attention. She is faced with an array of stimuli and is confused about which one(s) to attend to. She does, however, choose the correct ones most of the time. I’m guessing that because there are times when she goes for a good while without asking for help. Other times I see that she has chosen the correct one. I don’t know how to explain that. It’s as though she knows one minute and forgets in another.

One of the most frequent problems she encounters occurs when she touches a button for the store located in the upper right-hand corner of the screen. When she does that, she is presented with a large collection of puzzle packs for purchase. When she touches a puzzle pack, she gets a screen asking for the password. Then she is stuck because she doesn’t know it. That is a time for help. The button for the store is small enough that I am surprised that she sees it. She often can’t see the button that says “Play” that scatters the pieces so that she can reassemble the puzzle. It is about three times the size of the button for the store. I think there are so many pictures of other colorful puzzles behind the “Play” button it is too difficult for her to see the green button she should touch. I think I will continue showing her what to do each time she runs into a problem. In time, that may help her learn to touch the correc button more often than she is currently doing, but, perhaps, it won’t. She depends so heavily on her puzzles for entertainment I will do everything I can to help her continue with this pastime.

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Changes in the Wind

Over the past week I have been glad to report that we have had so many good moments. After a confusing start (the second day in a row), the string of good days continued through yesterday. Despite these good days, I am also noticing increasing signs of decline. Kate’s dependence on me is even greater now than before. She seems uneasy when I am not immediately in sight. Sometimes this happens in the house as it did last night after returning home from dinner. She went to the bathroom to brush her teeth while I went to another room. When she came out and didn’t see me, she called my name. (Yes, my name. Although she often can’t remember it. Often she is able to remember it when she needs me. If she can’t, she just says, “Hey.”) When I got to her she gave a sigh of relief and said, “I’m glad to see you.” This kind of experience happens more often outside the home. At Casa Bella the other night, I was walking ahead of her when she stopped to speak to someone. When she turned around, she didn’t see me. I heard her say, “Where’s my husband?” I turned around and walked toward her. She was very relieved when she saw me.

She doesn’t remember the layout of our house or the names of the different rooms, but she can find her way by trial and error. She prefers that I tell her or lead her where she wants to go. That is almost always the bathroom. When we return home after lunch, she often asks me where she should be, not just the room but the place to sit as well.

Another sign of her dependence is her comments on feeling safe with me. A few nights ago, I brought her nightgown to her and started to go to another room. She asked me to stay. She said, “I’ll feel better if you are with me.” We stood in the hallway while she undressed and put on her gown. Then we walked back to the bedroom. I don’t understand why she felt she needed me. My best guess is that she wanted to make sure she put her gown on the way it is supposed to go. She has had problem for quite a while getting into it so that it is not backwards. She is now confusing the sleeves with the opening for her head. I am usually with her when she does this. She must have felt uneasy because I was going to leave it in her hands. At any rate, she is feeling more insecure when left on her own.

This past Sunday as we walked from the car to the restaurant, she said, “I feel better when I am with you.” She was holding my hand and added, “I don’t know how to say it, but I feel “safe” with you.” She frequently uses the word “safe” when she talks about being with me.

She also asks to hold my hand more often than in the past. For a long time, she has only wanted to do that in especially challenging situations. She often says, “I didn’t have to have it, but it is nicer.” She is in an “in between” stage right now. Sometimes she wants my hand; other times she doesn’t. She almost always wants me to hold her hand when stepping off a curb and crossing the street. This is similar to other behavior when she sometimes wants help dressing but not others.

I’ve been reporting for some time that she has difficulty with her puzzles. In the past week or so it has become even harder for her. Part of that is her eye sight. She can’t easily spot the places she needs to touch in order to leave a puzzle she has just completed or to select a new puzzle.

Over the weekend, we had unfortunate problem with the iPad. It has been operating much slower in the past few weeks. It came to a virtual halt on Saturday because the storage was completely full. I deleted a number of apps. She really didn’t need them since the only one she uses is for her jigsaw puzzles. That didn’t solve the problem. I ended up deleting the puzzle app and reinstalling it. That solved the problem but created another.

She is now using a newer version which means that the size and location of the different buttons are different than the version she had been using. Not only that, but I’ve been unable to locate the old puzzles in her library. Kate hasn’t noticed that, but she is having more trouble going from the puzzle she has just finished to the next one. The size of the “buttons” she has to push are much smaller which adds additional problems.

I’ve taken pictures of each of the pages where she needs to tap the right button. I have enlarged them and put them on 8 1/2 x 11 paper. I included my finger in each picture to show her where to tap. I am going to use a colored marker to make arrows that also point to the right spot. I should have that finished today.

Altogether these things have caused her to ask for my help much more than in the past. I’ve been helping a long time, but the frequency with which she asks for help has increased geometrically. Each time she needs help, I get up from my chair and walk over to her. It now occurs so frequently that I have only been seated a few minutes before she is calling again. That is because she needs help after completing each puzzle. It is almost comical. I have spoken with both sitters to make sure they understand the problems she is having and help her while I am gone.

Let me close on a higher note. Last night was opera night at Casa Bella. She and I had a wonderful time. We had not heard either of the two singers, and they were outstanding as were the pieces they sang. Most of the arias were ones we had not heard, but they were great on a first listen. We ended the day happily once again.

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Good News

My optimism paid off. When Kate finally got up, she appeared to recognize me. Last week, I received a shipment of new clothes I had ordered for Kate online. I selected something for her that looked very nice. That made me think about going to lunch at Andriana’s since we are planning to be in Nashville on Sunday. When I checked with our server to see if she was working at lunch, she wasn’t. I decided to try another restaurant that is nearby, Sunset Café. Like Andriana’s it is a cut above the average places we eat, and we don’t eat there often.

On the way, I played an album of Frankie Valli and the Four Seasons hits. Kate and I laughed about most of them. They are so dated now, but we still enjoyed them. We also had a good lunch. We are now back home where Kate is now resting on the sofa across from me. That is her customary pattern now. She has a hair appointment in thirty minutes. After that we’ll have another break before going to Casa Bella for opera night. That’s sure to be another hit. After a rough start, it looks like we will have yet another good day.

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A Confusing Start

About 8:15 this morning, I saw on the video cam that Kate was still in bed but awake and looking around the room. I went to the bedroom and sat down on the bed. She looked puzzled. I said, “It looks like you’re confused.” She nodded in agreement. Then she said, “Who are you?” I said, “Do I look like someone who is friendly?” She said. “Yes.” Then I told her my name. She asked her name. I said, “Kate Creighton and you’re very special to me.” She looked surprised and said, “Who are you?” I told her that I was her husband. This was one of those times when she couldn’t quite fathom that. I recited some of the things that have helped her in the past – our meeting at TCU, our courtship, our marriage, information about her parents. None of this meant anything to her. I finally got out the “Big Sister” photo album. As always, she liked the photo of her and her brother on the cover, but she didn’t recognize who they were. She asked who the boy was. When I told her that was Ken, her brother, I pointed to her picture and asked who that was. She said, “Me.” She looked at a few other pictures and didn’t recognize anyone. She said she was tired and wanted to rest.

I asked if she would like me to sit in the room with her. She said, “Oh, yes.” I took that as a good sign. Even if she didn’t know my name or that I was her husband, she seemed to feel more secure if I stayed with her.

About forty-five minutes later, I got up to get something from the kitchen. I saw that her eyes were open and said hello. She smiled and gave me a little chuckle. I told her I was glad to see her. She smiled again. I can’t be sure, but I think she recognized me. Then she dozed off again. I’m going to be optimistic that she’ll be fine when she wakes up.

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Sunday’s Lunch Conversation

Just a short note to say that Kate and I had another interesting conversation at lunch on Sunday. We ate at Andriana’s. Before we reached our seats, she pointed to a photo of Frank Sinatra. I told her who he was. That began our customary conversation about him. She asked if I had told her about the time she and her mother had eaten there. She hadn’t. No surprise. Her mother died before we started eating there. She pointed to a photo of Sinatra and proceeded to tell me that her mother looked it and asked who it was. Kate told her it was Sinatra. She said her mother was vaguely familiar with him. She told her about his relationships with women, and that was all her mother needed to know. They didn’t go any further.

It is interesting to me how much she is drawn to his pictures. There are other pictures and art work in the restaurant. The only other thing she has been curious about is a large poster of a bottle of Cinzano vermouth. Even that has only come up in the past six months. It came up again Sunday. She always wants to know what it is. I tell her, but, of course, it is impossible for her to remember.

Kate is at least occasionally aware that she frequently asks me about Sinatra. Yesterday she said, “I know I’ve asked you before. I don’t know why I can’t remember.”

Apart from Sinatra, we had another interesting, though brief, conversation. It grew out of something one of us said about our having grown up so far apart. That led to a discussion of how the choices we make can open or close doors for us. Before choosing to go to TCU, I had considered going to college in Florida where I grew up. Kate chose to go out of state her freshman year but returned home and to TCU for the rest of her college education. From there we talked about other choices that we and others make about our life styles and health and nutrition. This was not a deep conversation, but it was another reminder of the kinds of things that she is still able to do without a memory.

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Update on Sleep and Mood

It was a year ago that I first noticed a change in Kate’s sleep pattern. Until that time she went to bed early, generally about 8:00. In the morning, she got up between 7:30 and 8:30. Last spring, she started sleeping later. In conversations with her doctor, I took her off Trazadone. That enabled her to stay up a little longer, and she was more awake at lunch than before. In general, she still sleeps later. Recently, however, she has been more erratic in the time she gets up. Most days I wake her. I usually start that process around 10:00 or 10:30. Other times she surprises me by getting up early.

In the past week or so, she has gotten up earlier than usual. She was up before 8:00 Saturday. We arrived at Panera shortly after 8:30. That was two days in a row, and the third time we had been there in the past week. Prior to that it had been months since we had been there that many times in a week. A year ago, we went there almost every day.

What should I expect next? I don’t know. She was up early enough yesterday to get to Panera again, and she was upbeat. She appears quite normal until she asks a question that gives her away or until she encounters a problem on her iPad. For example, she was up before 8:00 this morning and wanted to take a shower. She seemed fine, but she asked where the bathroom was. I showed her. She was cheerful and related to me very naturally. I could have assumed that she knew me. As I helped her into the shower, she said, “What is your name?” I told her and left her in the shower.

When she was finished, she got back in bed. I sat down on the bed beside her. We chatted a minute or two. Then she said, “Who are you?” I said, “Do I look like someone you know?” She said, “I don’t know.” I said, “Well, do you think of me as friendly?” Again she said, “I don’t know.” I said, “The way you are talking to me sounds like you must think I’m friendly.” She hesitated and said, “Yes, I do.” I went on to explain that we are married and that we met at the home of one of her high school friends when we were students at TCU. That was the first moment that she seemed to fully accept that I am her husband. Despite these questions, she spoke with me as naturally as though she knew my name and understood that I am her husband. She did express surprise when I told her we were married, but she never looked confused. Only her words conveyed that. She was never afraid or concerned about not remembering who I am. She has only experienced an anxiety or panic attack a few times in connection with not knowing where she is or who she is. I am grateful for that.

I don’t know how long this will last, but it may not be long until she changes again. Right now, it almost seems like we are living as though she does not have Alzheimer’s. Of course, that is not literally so, but it is a happy time. We’ll enjoy these moments as long as it is possible.