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Strangeness continues

For the most part today has been quite normal. I took my morning walk. Upon returning home, Kate was in the yard. Though I had planned on our going to Panera around 10:00, I decided to let her remain outside as long as she was enjoying herself. She came in around 10:00, and we got to Panera at 11:00. We just ate lunch and came back home.

Around 3:30 she was bored and asked the whereabouts of her iPad. I had left it charging when we returned from lunch. She had obviously unplugged it; so I went to the usual places where she might have been using it. No luck. When I told her, she said, “I hid it.” I hesitated and then said, “I’m not going to ask.” She said nothing. We both looked in drawers and closets without any success. Then I engaged the Find my iPhone app from my iPad. It quickly confirmed that my phone and iPad as well as Kate’s iPad were in the house. Then I chose the “Play Sound” option. We heard the ping and identified that it was near the kitchen. Then we realized it was coming from the laundry room. We found it in the back of the closet in the laundry room. It was behind a couple of jackets and a large container of laundry detergent. It was not immediately visible when you looked in the closet. It was then that I said, “I have to ask.” She gave me a look that said, “Forget it;” so I did.

These little things are not problems in themselves, but I can’t help wondering what lies ahead. I don’t think of this as a problem for me, but it can be quite troublesome for her. I would like to avoid that.

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What Happened Next

I just came back from Kate’s room/office. She had been cleaning up. There were no clothes on the bed, and most of the clothes on the floor were gone. I said something about her cleaning up. She acknowledged it and continued her work. I decided to let her continue because she seemed content. I believed she was not going to be as interested in watching one of our recorded programs. I am now going to put the chairs back and plan to listen to some music after taking a shower.

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Strange Behavior

We got back home from dinner about 25 minutes ago. After we got inside I asked Kate if she would like to watch one of the BBC programs I had recorded. She said she would. I turned the TV on and moved the chairs in front of the TV in the family room. A few minutes later she walked through the family room with her pill box, toothpaste, and night guard. I thought she said, “I’m going to take my medicine.” As I was sitting here in front of the TV, she came into the family room and said, “I’m taking my underwear.” I looked up and saw that she had underwear in her hand. She also had a pair of men’s trousers in her arms. I had bought them for her to wear outside when she works in the yard. I told her we weren’t going anywhere. She said, “Oh, that’s good.” Then she turned around and went back to her room. I haven’t heard from her since. That has been about 10 minutes. This is not the first time she has imagined my telling her we were either going somewhere, that someone was coming here, or something similar. I am beginning to wonder if this might not be something I see more of in the months ahead.

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Feeling Sleepy

Several times recently Kate has mentioned being sleepy. This happened again today. As she has done the past few times this has come up, she had been trying not to get in bed and rest. The unusual thing about this is not that she feels sleepy; it is that she has been napping for several years when she feels this way. Now it seems as though she shouldn’t being do it. Today and yesterday, I suggested she take a nap when she complained of being so sleepy. Then she very willingly got into bed to rest.

Today she got up about 30 minutes after getting into bed. She walked into the kitchen looking a little tired and forlorn. When she got sleepy at Panera this morning, she walked around the outside of the restaurant. At that time I said walking around was a good thing and that sometime we should do that on our block. I was careful to let her know that I didn’t mean “taking a walk.” That is something she strongly resists.

So when she came into the kitchen, I suggested we walk down the block. She accepted, and we ended up walking around the block. That is further than I expected she would go. I achieved this in stages. When we got to the end of our street, I told her she could choose whether to walk directly back to our house or walk around the block. She chose the latter. This is something I would like to make a habit.

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Feeling Good

In the past few days a number of people have asked me, “How is Kate?” In each instance, I have said that she is getting along well right now. I have been clear to say that it isn’t that there is any improvement in her condition but that she and I are enjoying life. I make a point of this because I was discouraged when we returned from our cruise in January. Although I sensed that the complete change in scenery and routine were factors in her failure to enjoy the trip as much as I had hoped, it is only now that we have been back a while that I know how much impact that had on her. She suffers boredom and is periodically irritable at home, but at least she is on a fairly routine schedule. Of course, I have read and heard caregivers talk about the importance of a routine, but going through the experience of the cruise has made a greater impression on me. I suppose that it is quite normal. I don’t think any of us fully appreciates what is involved in dealing with any illness until we experience it. This morning I had a conversation with someone who is undergoing chemotherapy for lung cancer. He was telling me all the things that he has learned and never knew anything about before he became a cancer patient. I am sure that is equally true for someone who has a kidney problem and has to undergo dialysis. I definitely believe it is true for a couple facing Alzheimer’s.

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In The Yard Again

Kate has spent a lot less time in the yard this spring than she did last spring, summer, and fall. Today seems like the old days. We both woke up early this morning (a Saturday) when we would normally sleep a little later. I was up at 5:00 and walking at 6:10. When I returned home at 7:20, Kate was working in the flower bed in the front of the house. She remained out there until 9:00 when she came in. After lunch today, she expressed an interest in going to Lowe’s to buy more plants. I took her. When we got home from Lowe’s, she went outside and remained there until almost 6:00. We went to dinner and got home about 40 minutes ago. She went back to the yard where she is pruning. While I don’t believe the pruning is necessary or that we need more plants, I am very happy that she seems to be back into yard work. She enjoys it, and it prevents boredom that occurs when she sits inside and works jigsaw puzzles on her iPad.

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Lots To Think About

We are now at Panera, something I had planned for the morning though it didn’t happen quite the way I intended. That is one of the commonplace occurrences in our lives nowadays. Each day I list the day of the week, the date, and our activities for the day. Except for meeting and other appointment times, I am flexible though I put down a specific time. This morning I put down 10:00 for Panera. Most days Kate isn’t ready before that time. Once in a while, she is. Today was one of those days. It is also an example of how short-term memory affects coordination. Shortly after 8:00, I mentioned that we might go to Panera this morning and have an early lunch before a United Way communications meeting I have at noon. Here is how things turned out.

At 9:15, Kate walked into the kitchen and said, “Well, I think I will work outside for a while.” She sounded as though it was not something she was excited about, just something to pass time. I said, “I thought we were going to Panera.”  She smiled and said, “Oh, I forgot.” Then she turned around to go back to her room to change. She looked happy that we were coming here.

At that point, I was still in my walking clothes and needed to change for the day since we would not be coming back home in time for me to get ready for my meeting at noon. It turned out she got ready very quickly but she had only changed clothes. She had not gotten her iPad that she uses while at Panera or her cup that she also uses for her drink. I also noticed that she didn’t have a sweater, and it is usually a little cool at Panera in the morning. So I gathered all my things as well as these things for her, and we left at 9:35.

All of this occurred without any angst on her part or mine. I have learned to consider these kinds of things normal. She is always ready to do something that she likes. Most of the time Panera fits the bill, especially if it is in the morning. First of all, I think she considers the blueberry muffin to be a treat. Second, it is a comfortable location to pass time. We almost always see people we know.

My intention in writing down this experience is to convey that this is the kind of thing that happens multiple times during a day. They are not horror stories in any way, but they are examples of how the caregiver is always shifting gears and trying to head off or solve a problem. There are so many of them that I find myself slipping.

A good example is a phone call I placed this morning. About a month ago, I took Kate to see a neurologist who said he would need her to get an MRI. We did that a few days after the appointment. I expected to hear from the Doctor the next week that he had the results and wanted to schedule an appointment. I have thought of this a number of times since then but never remembered to call the doctor. It turns out that the doctor has never received the results. His office is going to call today. Then we will schedule a follow up appointment with him. This is the kind of thing that I could and should have taken care of right away, but it somehow just didn’t rise to the top of my list of things to do. That is happening with many of my obligations.

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Everyday Mix-Up

I called Kate in from the yard about 25 minutes ago. She came in and took a shower. A minute ago she called to me. I went into the family room where she was standing. She asked, “You want to eat outside?” I told her I thought we would eat out. Then she told me that she thought I had said something else and indicated she was probably wrong. This is one of the many little things that are not of any great consequence but can be a coordination problem, especially if they occur where there is a time deadline that is approaching.

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Imagining and Other Things

I don’t mention it regularly, but Kate continues to have Deja vu experiences. They tend to be in the same places or situations. She says, “There he/she is again.” as we pass by someone while we are driving. The person is normally walking or running, but sometimes it is a person standing at a bus stop or something similar. By far the most typical experiences occur in restaurants where she very regularly says, “See that family?” or “Notice that man.” Then she will say, “You’ll see him/her/them again.”

She also experiences periodic false memories. This morning she came into the kitchen and said, “I’m ready.” I asked if she wanted to go to Panera, and she did. I told her I wanted to finish writing an email message and then we would go. I finished and then took a few minutes to get our things together (iPads, my computer, cups for drinks, etc.). On this occasion (a rare one), she seemed eager to leave and asked, “I thought you wanted to get me out of here while Libby (our cleaning lady) is here.” I hadn’t even discussed leaving the house or said anything to her about Libby except that she was coming this morning. Ah, it is just now coming together as I write this. Kate was in bed when I returned from my walk shortly after 8:00 this morning. I told her I was back and that Libby would be coming soon. She must have interpreted that to mean I wanted her to get up so that we could go to Panera.

Before leaving Kate brought out a few things to give to Libby. She often does this. This time I noticed that she had put out a pair of her shoes. She saw my look of surprise and asked, “Is something wrong?” I told her that those were shoes we had recently bought. She said, “You told me they were too small.” She took the shoes back to her room.

It also looks like she has come to see me as the person responsible for washing the clothes. Last night she brought some dirty clothes into laundry room and dropped them in the washing machine. I was in the kitchen. She called out to me, “The washing machine is full.” I took this to mean that she was letting me know it was time for me to wash. I said, “I’ll take care of it.” Then I did. She never said anything. To her it must have seemed like an everyday occurrence.

Despite these kinds of things, I still say that we are getting along well under the circumstances. I am trying to keep us busy. We still go to as many movies as we can. The believe the number she will like is smaller than I would want it to be.

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Transitioning

As I have mentioned on a couple of occasions, perhaps more, I have noticed that Kate is looking to me to take charge of things she had controlled in the past. Specifically, I have commented on her willingness (though reluctantly) to receive and even ask for my help finding the right clothes to wear.

There are a couple of recent things that I have not made a point of. Yesterday evening, for example, when we drove into the garage from dinner, she asked in the style of a little child, “Can I go around to the side of the house and work for a little while?” I told her I would be happy for her to do that.

After she came in, she brought a handful of clothes into the kitchen and said, “These are wet. You might want to wash them right now.”

These things are especially striking to me since she is also more frequently commenting on how much I want to control her life. She occasionally refers to me as “Master” in a derogatory sense. And despite the fact that I am constantly thinking of the things that will make her happy or not in an effort to keep her upbeat, she occasionally remarks that “You don’t think of me. If you were the one who is hot, you would see that the air conditioner (in the car) is on right away.” I take these things as part of the transition to a period of greater dependence on me. This is something to which I do not look forward. I treasure the fact that we have been able to enjoy ourselves so much since her diagnosis. I will always be grateful for this time. I would also like to postpone as long as possible the stages that remain ahead.