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An Unusual Conversation

I find that there are so many things going on in our lives that I don’t come close to writing about all of them. There are also events that I want to report but can’t do so at the time. Then later I forget them. One of these things occurred about ten days ago. Here’s the story.

One of the topics I have mentioned on several occasions involves the conversations between Kate and me. I would have said more if there were more to say. The truth is that Alzheimer’s is hazardous to conversation. Normally one doesn’t think of it, but conversation is dependent on our memories, Much of that involves recent memories like things we have done, people we have seen, events in the news, and places we have been. Kate can’t remember any of these things. That means she relies on her distant past. For a good part of her journey, she has often spoken about her family and, especially, her mother. That has carried her in limited social encounters with friends or strangers. She has also done that with me, but we are together so much that the result is that she doesn’t talk much at all. We say very little wherever we are. As a talker, that has been a significant loss to me. She actually prefers that I minimize my talking. I suppose that makes it more comfortable for her. She doesn’t have to respond.

A week ago this past Saturday, we drove to Nashville to visit Ann and Jeff Davis. Typically, we would spend the entire time in silence. This trip was a notable exception. We talked just over an hour of the two-and-a-half hour ride. During this time, we focused on things for which we are grateful. These included things like our marriage, our children and grandchildren, our parents, friends, things we have done, and places we have been. We kept the conversation at a more general level that didn’t require Kate to recall specific details. I loved having such a conversation and hearing her express her thoughts on all these topics. I am confident that Kate enjoyed it. I know I did. As an added bonus, it made the trip to Nashville seem a lot shorter than it really is.

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Making Choices

Everyday all of us find ourselves making choices to do one thing or another. We can’t do it all. It’s no different when one is caring for a person with dementia (PWD). The only difference is the caregiver always tryies to decide  which of two or more alternatives is the best one for the PWD. I’ve had to make one of those decisions today and hit a home run.

This afternoon the UT Opera Theater had an annual student recital. We have attended several of these in the past and enjoyed them immensely. The Live in HD at The Met production today was Tosca. We couldn’t do both; so I decided on Tosca. Although I am sure the recital was good, I believe I made the right decision. We’ve seen quite a few of these operas, and this was one of the best. Kate loved it. When she is really enthusiastic about a performance, she not only applauds but also says, “Wow.” I heard several of those today. I am a little sensitive about this because she is the only one in the audience that expresses anything audibly.

While the opera itself was outstanding, it was even better to know that Kate was so enthusiastic about it. At the last of these operas last spring she wanted to leave after the first act. I don’t remember what opera that was. I do know that was the first one she has not enjoyed. I feared that our opera experiences might be nearing the end. It looks like we have a bit longer. This coming Friday, we are attending a performance of The Barber of Seville by a European opera company that comes to Knoxville periodically. In addition, there are several other Live in HD productions I would like to attend, including La Boheme and Cosi fan Tutte.

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More Confusion and Growing Dependence

After dinner tonight, we came back to the house and prepared for our normal relaxation time at the end of the day. I got Kate’s medications and put them on her bedside table along with a glass of water. Shortly, she came into the room and started to take her pills. She had only taken a couple when she must have turned around to do something else. Then she asked me if the remaining pills were for tonight or in the morning. This is something she has said on several evenings lately. Prior to this she simply assumed they were all the evening medications. Like many things, I can’t say what accounts for the change. It is just among the variety of things that go along with Alzheimer’s.

A little later, I got ready to take my shower when I heard her call, “Help.” It wasn’t a frantic call, but it was clear she needed something. I came out of the bathroom to see that she was struggling with her robe. It was inside-out, and her left arm was in the right sleeve. She couldn’t find the other sleeve. I got her straightened out and said, “Another case of teamwork. We work well together.” She thanked me and gave me a hug. It’s one more sign of her increasing dependence.

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Preparing For and Enjoying Time with Friends

Kate got up earlier this morning but late enough that we were a little short of time before meeting a group of friends at 11:00. We squeezed in just enough time for get Kate’s muffin. As she was eating, I reminded her that we were going to a birthday celebration today. As I had expected, she hadn’t remembered. I explained that this was a group of friends who had been faculty colleagues at the middle where she had been the media specialist for about ten years. Several of them had January birthdays and used to celebrate together. It had been five years since our last time together; so I had arranged for us to do it this year.

Kate asked me to tell her who would be there. I went through each of the six other people besides ourselves. In a moment, she asked again. After that she said, “You might have to tell me again.” She then asked me how we knew these people. I reminded her of the school connection.

Then she asked me to tell her who our children are. As she did the other day, it sounded like she really knew and just wanted to practice names. I told her their names. Then I proceeded to tell her the names of the grandchildren. After that she said, “Where are we right now?” I asked if she “meant this place.” She nodded, and I said, “Panera.” When we got in the car she asked, “Where are we?” I asked if she meant the city. She did, and I told her. As we neared the home of the couple hosting the event, she asked me the names if the people we would see. I told her and also told her I didn’t think she would have to worry about knowing each person’s name, that everyone would assume she knew them. I may be imputing too much, but she looked a little apprehensive as we arrived at the house.

We were greeted by three people at the front door. From that point, everything went well. Kate’s gift for social interaction came to the rescue. I suspect that everyone was surprised at how well she seems to be doing. There was a lot of conversation before, during, and after the meal. Kate was not very talkative, but neither was I. Several of the others are big talkers, and there was a lot of reminiscing of experiences they had shared in their teaching careers.

There were only two things that Kate said that would have been signs of her Alzheimer’s. The woman hosting us had prepared a spaghetti casserole that was a recipe of Kate’s mother’s. We talked briefly about that early in the meal. Fifteen or twenty minutes after that as we were talking about foods that we liked, Kate said, “I wish you could have had my mother’s spaghetti casserole.” I had informed everyone of Kate’s diagnosis before we got together; so they didn’t say anything to make her realize that was something we talked about before.

The other thing was that Kate told them about a school at which she had taught. As she described it, I knew that she was talking about the school where each of them had taught together. I was a bit uncomfortable as she was talking because I knew that some of the things she said weren’t true. I am sure everyone realized that she was confused.

What I will take away from this gathering is that Kate handled herself very well, and we both enjoyed ourselves. I still can’t escape the sense that she is changing significantly and hoping that she will be able to function well in social situations for a good while to come.

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Memory is fading, but she can still be light-hearted.

At Panera this morning, Kate asked me the name of a young man who works there. I told her. Then she asked again. I told her again. A minute passed. She looked up at me and said his name. I said, “You got it.” She smiled and said, “Ask me again in five minutes.” She knows she is not likely to remember.

We got our haircut this afternoon. Kate went first. When Dawn was cutting my hair, she commented that Kate had mentioned the move to Texas again. I told her that she had been telling other people the same thing. Fortunately, she says just the right thing when people ask when we are moving. She says, “We haven’t set a time yet. We’re not rushing.”

As we walked away, Kate asked, “What’s her name?” When we got in the car, she asked, “Where are we?” I asked if she meant the city. She said, “Yes.” I told her. It is such an interesting contrast, appearing to get along so well and then forgetting people and places you might think she has the greatest likelihood of remembering.

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An Uplifting Phone Call

Shortly after returning from lunch today, I received a call from Inez Grayson. She is a friend of Kate’s and a former staff member at our church. They became friends when Kate was the church librarian. She had called me a couple of weeks ago to arrange a time when she could take Kate to lunch to celebrate her birthday.

Inez wanted me to know what a good time they had had and how much she enjoyed the lunch. Inez had arrived before I arrived with Kate and had ordered their lunches following my recommendations for Kate. Inez said she was so impressed that Inez had remembered what she likes. She also commented on how much Kate had talked. She found it surprising how many things that Kate had remembered about some of their past experiences. Several people whom Inez didn’t know came to the table to speak to Kate. Inez said she handled herself beautifully. After the friends had left, Inez asked who they were. Kate said, “I don’t know.”

I was so pleased to hear how well the lunch had gone. I’m not surprised. She has always been very fond of Inez, but I always like to hear that she has gotten along well. It is another good illustration of how well she can function in social situations. I hope this continues for a long time.

When Inez first called, she was happy to include me, but I thought it would be much better for just the two of them to have time together. I know that when I am around, I can dominate more than I should. I am so glad I wasn’t there.

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Off to a Late, But Good Start

As she has done several times lately, Kate slept late. She opened her eyes when I walked into our bedroom about 8:30, but she didn’t get up until 10:30. That is after going to bed around 8:45 last night. Until recently, she had been going to bed between 8:00 and 8:30 and getting up around 9:00. It is quite possible that our recent trips to Texas have thrown her off a bit. On the other hand, I always wonder if she might be establishing a new pattern.

This is a light day for us. The only commitment we have is to get haircuts at 3:00 this afternoon. Because we have plenty of unscheduled time, I decided to drop by Panera for Kate’s muffin even though it was 11:30. I thought it would be good for her to be occupied for an hour here before we go elsewhere for lunch. It’s a sunny day though a bit chilly. I suspect she may want to work in the yard a little between lunch and our haircuts. That will leave us with another hour and a half or so before having dinner. I find that the day seems to go well when Kate’s activity is divided into small “chunks” of no more than two hours.

She is in a good mood today and is happily working her jigsaw puzzles on her iPad. She hasn’t asked me to help her once, and we’ve been here about fifty minutes. That is a rare event. I am optimistic we will have another good day.

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More Rehearsing of Names

Not long after we sat down for lunch yesterday, Kate said, “Tell me my father’s name.” I gave her his full name. The she asked for her mother’s name. Once again, I gave her the full name. Unlike the other day, I believe she really knew the answers and also believed I knew them. I think she was just leading into a way to talk about the names of people and places she is beginning to forget. I asked her to tell me our daughter’s name. She got it as well as her husband’s name. She stumbled on her boys’ names, but when I said Ron, she immediately said Randy. We did the same with our son’s family. When I told her that Kevin and Rachel have three children, she looked surprised and said, “Three?” I gave her the names of all three.

Following the family part of the name game, she asked, “Where are we right now?” I told her we were at Carla’s. It turned out she wanted to know what city we were in. I said, “We’re in the city where our home is located.”  She said, “Where is that?” I told her and didn’t go any further. Even though I know her memory is fading, I find myself surprised when I come face to face with examples like this. I wish it weren’t so.

Later in the afternoon, we spent some time at Barnes & Noble. Before leaving, she wanted to use the restroom. It is located about 60-70 feet and to the right of where we were sitting. She asked me to tell her where it is. I suggested that I take her. At first, she didn’t want me to. Then she quickly changed her mind. She went ahead of me and I took a seat on a bench directly across from the women’s room 15 feet away. I saw her walking back toward me. She said she couldn’t find it. I showed her the door a few feet behind her. She had walked by it twice without seeing it. These things confirm what I already know, that I need to stay close to her even in places like this where we are a closed space. It would be even worse in a mall or the Atlanta Airport where I lost her for 35 minutes on our recent trip to Texas.

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When Kate is happy, I am happy.

Periodically, I like to reflect on how I feel about Kate, our relationship, and the way things are going. The fact that it has been seven years since her diagnosis prompts me to do that now. The medical community uses a one to ten scale for patients to indicate their pain level. If I were to apply this scale to my feelings about the way things are going, I would probably say an 8. Kate and I are both in good moods right now. Both her mood and her state with respect to her Alzheimer’s influence my mood significantly. She has been in a particularly good mood for some time now. If that were the only factor in my mood, I would have said a 10. The fact that I notice more and more symptoms of her decline brings the rating down a couple of points.

During the past seven years, Kate has experienced more irritability than before. That was concentrated over a fairly lengthy period of time. The good thing is that it was neither intense nor constant. It was mild and relatively infrequent. I am never sure how much her behavior is influenced by mine, but I have made some changes over the couple of years or so that could have played a role in her showing less irritability.

In the past, we have often engaged in humorous banter that originally worked to lessen the seriousness of emerging problems. Kate has always recognized my OCD tendencies. As a result of my gradually taking charge of so many aspects of her life, she would tease me about how “anal” I am. I always responded light-heartedly in a way that encouraged her expressions of concern about my desire to keep her clothes clean, to see that she wore her yard clothes when she worked outside, to suggest that she change when I saw that what she was wearing was inappropriate for an event we were attending, and lots of other things .

I think this served us well for quite a while. Over time, however, her teasing seemed to display a more serious tone. I decided not to encourage this kind of banter any longer. I also made some important behavioral changes. I eased up significantly on what she wears. For the most part, I let her wear whatever she wants when she is working outside. I have also tried to be clever when she is about to wear something outside that really concerns me. For example, I bought her a new winter coat for everyday wear. When she was about to wear it to do her yard work, I told her I had something that would be even better for her. I told her it was a good warm coat. She accepted that. I bought a couple of pairs of new shoes and keep them in my closet. I bring them out for her whenever I think she should wear something a little nicer than the ones she wears every day. In the evening or the morning before she is up, I locate them and put them back in my closet. I do the same with her pants.

One other change is that I increased our conversation about our relationship. I encouraged talking about how long we have been married and emphasized all of the good things we have experienced over that time. None of this was something we had not done before. The difference was talking about it more with a deliberate attempt to facilitate good feelings about our relationship. For example, on occasions when she needs help getting her clothes on, she usually thanks me. Instead of casually saying, “You’re welcome. Glad to help,” I might look at her and very deliberately say, “I’m glad to do it. You know we’re really a team.” I’ve emphasized the fact that we are doing these things together. She has responded well to the idea of our being partners in everything. I, of course, see this as being partners in her Alzheimer’s. I don’t believe she thinks of that at all. I believe she looks at it as simply the kind of partnership that makes for a good marriage. She’s right, of course, but I also see a special connection to her diagnosis that she no longer sees.

I am not saying that my changes have made the difference in her happiness. That may only be a part. Kate has declined during this time period and become more dependent. Thus she is more accepting of my help in just about every area of her life. I do believe, however, that these changes have meant fewer bases for conflict, especially over clothes. It has also fostered more happy moments. We both like that.

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A Funny Thing

It’s no surprise that at this time of day we are at Panera. A few minutes ago, Kate went to the restroom which is just around the corner from where I am seated. The next thing I knew she tapped me on my shoulder and said, “I found you.” I said, “Did you walk around to the front?” She said, “No, I just turned right and walked right to you.” I gave her a “two thumbs up” response.  She laughed and said, “But will I be able to find you next time?”

She took her seat at our table and stated to work on a puzzle. Pretty soon she ran into a problem and handed the iPad to me. She said, “You’ll probably fix it just like that.” She had three puzzle pieces that were out of place. I put them in the proper spots. She said, “You’re so smart. I would never have figured it out.” I told her the problem was her eyesight and that it can be difficult to see if the pieces are not exactly in their places. (This is one of the puzzles that doesn’t have a snap feature that draws the pieces in place when you are close.) She acted like she was irritated because I had fixed it so quickly. In a minute, she looked up at me, and blew me a kiss.

I think this provides a glimpse of how most of our interaction goes and why I say that our personalities fit well together to minimize significant problems.