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You just can’t explain everything.

I have sometimes said that the job of an Alzheimer’s caregiver involves two things. One is to prevent problems. The other is to solve them. To do this well calls for a good understanding of the person for whom you care. Ordinary life has led us to search for explanations for just about everything. Some things are easy. For example, if you know that your loved one is cold, you can turn up the heat or add blankets or warm clothing. Most of the time caregivers are able to find the right explanation. Other times, we don’t. That makes me think of Kate’s salivation problem. For about a year and a half, she has almost given up swallowing saliva. Instead, she uses napkins or a variety of paper products to wipe the saliva from her lips. When nothing is available she simply wipes the saliva with her hands or her clothing. I have now consulted three different physicians who have offered several possible ways to address the problem without success. They don’t know why this is happening.

The salivation issue is an unusual one, but there are numerous other things that dementia patients do that are not easily explained. For example, why would Kate hide her iPad in the back of the coat closet in our laundry room? Why would she put her underwear on a shelf in her closet where she keeps her shoes? Why would she put her pill box on the next-to-the-top shelf in our bathroom where it is a challenge to reach? The fortunate thing is that these things are harmless. They just cause a problem when you can’t find what you are looking for.

There are other things that do no harm but are inappropriate in one way or another. Some time ago, perhaps a couple of years, Kate started putting or two or occasionally three tops on when one would do. That in itself is no problem. Layering is often recommended to keep warm in cold weather. Layering could also be done as a fashion statement. Sometimes Kate’s choices could pass for that. Typically, however, they involve multiple tops that don’t match or complement one another in color or style. I never recall her doing this before Alzheimer’s.

This afternoon she did something else for which I have no explanation. Kevin had called. After a few minutes, Kate hung up her phone. It wasn’t long before she came into the kitchen where I was. She was carrying two different tops and an 8 x 10 picture frame containing pictures of our twin grandchildren. She walked outside. When we went to dinner tonight, I noticed that she had put them in the back seat of the car. For the first time, I noticed that she had also put some underwear with them.

For quite a few years, she has brought home left over food items from our restaurant meals. She brought them home in a paper napkin. Originally, these went into the compost. Over time she has forgotten about the compost. Now she frequently just brings our used napkins home. Before we get home, she tears the napkins in smaller pieces. When she gets out of the car, she throws the napkins into a basket on her side of the car. Over time the basket is overflowing with napkins. Then our housekeeper empties them into the garbage, and the process starts all over again. Oh, how I would like to know what is going on in her brain when these things occur.

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A Moment of Pleasure, For Her and For Me

Kate hasn’t read any books or periodicals in years, but once in a while she picks up a book at home and puts it near her chair in our bedroom or near a chair or sofa in our family room. Although I’ve never seen her look at them, I assume she must have taken a glance before taking them off a shelf and setting them aside to be read “later.” She has taken particular interest in books that were from book shelves in her parents’ home.

This morning before going to Panera, she brought a book to the kitchen and said she wanted to take it with her. (She wasn’t just informing me; she was asking if that would be all right.) I told her that would be fine. When we got to Panera, she left the book in the car.

I had left a cup at Barnes & Noble yesterday afternoon. After lunch, I told Kate I would like to drop by B&N to see if it had been turned in. She was fine with that. I parked the car in the lot in front of the store and told her she could come in with me or sit in the car. She said she would like to remain in the car. When I returned, she was looking at the book. It was entitled Bird Life in Wington. She told me it was fascinating and wanted to read a passage to me. Her eyesight (from cataracts and her Alzheimer’s) make reading nearly impossible. She struggled, but didn’t read to me. She just leafed through the book and, periodically, would stop and attempt to read. I don’t know much about the book. From what I could see and what little she could read, it is a novel about a fictitious town called Wington in which all the characters are birds.

As she was perusing the book, I noticed her mother’s handwriting on one of the pages. I pointed this out to her. She was touched by that and pulled the open book to her chest. She was so taken with the book at that point that she didn’t want me to drive away; so we sat in the car 5-10 minutes as she skimmed through the book, stopping periodically when something on a page caught her attention. As she did this, I pointed out other places where her mother had written something. Although I don’t believe she understood much about what she was reading, she was thrilled with the book. It was a thrill for me to see her get so much pleasure from this discovery. I told her it looked like it might be a book that her mother had used in her Sunday school class she taught for so many years. It appeared that each chapter may have focused on a particular moral lesson. Of one thing I am sure. This was a special moment for Kate and, thus, for me.

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Staying Busy Helps

Kate’s experience of boredom and my effort to relieve it leads to a somewhat active life. Yesterday could have been a problem in that I didn’t have anything planned except her monthly massage at 2:00. We made our daily pilgrimage to Panera, arriving earlier than we have in a couple of weeks. That meant that Kate was ready to leave before time for lunch. She seemed somewhat bored on the way home. Upon our arrival home, she asked what she could do. Since the sun was out and the temperature a little higher than it has been in the past couple of weeks, I mentioned that she could work outside. She liked that idea. About thirty minutes later, I went outside to let her know it was time for lunch. She was sitting in the middle of a flower bed. I have learned to control myself when I see her working like this in her everyday, but good, clothes. That doesn’t mean that I don’t notice. I didn’t say a word.

We went to a deli for lunch where she got an orange cranberry club sandwich that she likes. I got a salad that I like along with a cup of chili. It was a rather typical lunch. She spoke very little but didn’t seem bored as she had been earlier. I think working in the yard helped. It really is her therapy.

We had about forty-five minutes at home before we needed to leave for her massage. She talked about going outside again, but came directly inside and worked on her iPad for a few minutes. Then she rested in bed until I let her know it was time to leave. She was very comfortable and did not want to get up. When I reminded her about the massage, she wasn’t enthusiastic. It was clear that she would rather nap than have a massage. For a couple of years, I have arranged for her to go to a spa twice a month, once for a massage and the other for a facial. I am wondering how long this may be of some psychological benefit. I don’t honestly know how much she gets out of it now. My plan is to continue this schedule for the time being just because it offers another diversion for her, and it must be of some pleasure as well.

Before taking her for the massage, I got her cup and iPad along with my own things with the thought of going to Barnes & Noble (B&N) afterwards. After she was finished with her massage, I asked if she would like to go back home or to B&N. With no hesitation, she said B&N. We were there until just after 5:30 when we left for dinner. For some reason, she seems to be able to stay there longer than at Panera. I don’t know whether that is because we go to Panera more or if there is something about B&N that she likes. I do know that she seemed perfectly happy for over two hours. She never got up. I asked if she was ready for dinner several times. Each time she said, “Let me finish this one.” It is amazing how much time she spends on jigsaw puzzles. For quite a few months she has experienced frustration because she hits something that takes her to the store to buy more puzzles. When that happens, I have to get her out. More recently, she has been doing better. I am glad about that because this is her primary activity now. I hope that as the weather improves, she will spend more time outside.

The interesting thing to me is that she seems to like being at home only when she can work outside and in the evening after we return from dinner. It appears that she feels she spends too much time trapped in the house and needs to get away. Whatever the reason, I will continue to arrange things for us outside the house.

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When will I fully adjust to having a sitter for Kate?

It’s Wednesday morning. It’s one of three days a week that a sitter comes to the house to stay with Kate. She’ll be here four hours. During that time, I will go to the Y followed by meeting my friend Mark for coffee. That will leave me with another thirty to forty minutes to run errands. I know and read about caregivers who would love to have this kind of freedom. It means a lot to me as well. I only engaged a sitter when I no longer felt comfortable leaving Kate alone. If I didn’t have a sitter, I would be much more restricted. Best of all is the fact that Kate has accepted a sitter and seems to enjoy having someone with her while I am gone.

So why is it that I still don’t feel completely comfortable? I find this discomfort hard to describe, and I’m not going to attempt an explanation for it. At the moment, it is only something I want to acknowledge. It begins in the morning of the days we have a sitter. For example, it is now a little after 8:30. Kate is still sleeping. I don’t know how long she will sleep. I do know that I am going to leave her for four hours starting at 1:00 p.m. The longer she sleeps the less time we will have together today. I also know that when I tell her that I am going to the Y or to Rotary or a meeting, she often responds with, “What am I going to do?” At that moment, I have a tinge of guilt about leaving her. I am typically rescued from this burden quickly because I never tell her I am leaving until right before or at the time the sitter arrives. That leads me to say something like, “Well, you and Mary (or Anita, the other sitter) can stay here or you can go someplace like Panera.” When the word “Panera” comes out of my mouth, she jumps on that right away even if we have just returned from there. By the way, that happens frequently on Mondays when I take her there (or remain there) for lunch. On a couple of occasions the sitter has arrived early before we are home. This past Monday Kate didn’t even come in the house. She just got out of my car and into the sitter’s car for the trip back to Panera.

Another pattern has developed in connection with having a sitter. As soon as the sitter leaves, Kate gets her iPad and sometimes her cup and comes to me in the kitchen. If she says anything at all, it is, “I’m ready.” That means she assumes we are going back to Panera or to Barnes & Noble. Then I get my computer and/or iPad and a cup, and we are off again. The afternoon visit is a short one because we usually go to dinner between 5:45 and 6:00.

As you can tell, the sitter is working out well for Kate and for me too. I wonder if some of my discomfort is not wanting to hand over any of her care to someone else. That makes me think of my dad. He cared for my mom without in-home care except for a short trial that my brother and I pushed him into. I know there were other factors, but financial considerations were among them. Now that I am walking this same road, I suspect part of his unwillingness to accept help was his desire to do it himself. He might have thought no one else could do it with the same sense of compassion and joy. I can identify with that.

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More Good Times With Friends

Today has been a good one for social engagement. Angie and Tom Robinson were in town for lunch and a pleasant afternoon of conversation. We had lunch at Carla’s. They had liked it year or two ago when we had first taken them there. I am glad we went. It offered them a glimpse of why I say that eating out is a social occasion for us. We go to Carla’s frequently and know several of the restaurant staff. One of those is the manager, who stopped by our table to say hello. She ended up giving us complementary desserts. As we were about to leave, the newly retired CEO of United Way took a table next to us. We introduced him to the Robinsons, and we spoke briefly before leaving. After that we came back to the house for more conversation.

It had been a good visit. Kate participated more than she usually does. She was more animated than normal, sometimes more assertive as well. I’ll have to talk with Tom about his impressions, but I felt she handled herself well. She is changing, but she does far better in social situations than I would expect knowing how little memory she has. At one point, she asked Tom about Bruce, a mutual TCU friend and one of my former roommates. I was surprised she recalled his name. As usual, I knew that some of the things she said were figments of her imagination. They aren’t, however, the kind of things that provide an immediate alert to others that she is confused.

After they left, I told her how well I thought the visit had gone. She agreed. Then she said, “Who are they?” After I reminded her, she said, “Oh, yes, from TCU.” Part of our discussion this afternoon was about our days at TCU. I was glad to see that she still had not totally forgotten that connection. Then she asked, “Who are they again?”

She is having significantly greater trouble recalling names in the past couple of weeks. Today, she asked, “What is your name?” I find it hard to believe that she has forgotten, but that is what it sounded like when she asked the question. After I told her my name, I asked, “Now what is your daughter’s name?” She couldn’t answer. I said, “Jesse.” Then she immediately gave me Jesse’s middle name. Clearly, the first name triggered the middle name even though it is one we do not use.

The changes in her memory make me think that making another trip to Texas in the spring and a trip to Asheville for our anniversary may not happen. If that is so, there are likely to be other changes on the horizon, and not as distant as I would like.

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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.