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Good Moods Make for Good Days

In my previous post I failed to note that Kate was in an especially good mood yesterday. I am sure that played a significant role in my own sense that we had had such a nice day. It is not that she is usually irritable. She does continue to show more irritability than before her Alzheimer’s, but those moments don’t last long, and, fortunately, at those times she is not difficult to get along with. That said, sometimes she is especially happy and cooperative. That is the way she was yesterday.

She also continues to be reflecting or thinking a lot. Over the course of her illness she has occasionally said something that sounds like we had just been talking about something and expects me to know what she is talking about. There were a couple of those experiences yesterday. She said, “I’m going to be very careful.” Instead of acting puzzled and asking what she was talking about, I said, “That’s a good idea.” She said, “I’m going to stick close to you whenever we are in public.” I told her I would watch out for her. She said, “I know you will. I feel safe when I am with you.”

When she says things like this, as she has done in recent weeks, I tend to impute more to her actions than may be justified. In this case (as in others recently), I believe that she is grappling with a sense that she is less and less in touch with her environment and the people around her. It may be her way of expressing her own insecurity. Overall, she seems not to associate her challenges with her diagnosis, but she still knows she is not normal.

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Coming Home

I am glad to report that our travel home yesterday was uneventful, that is, we had no trouble at all. Anytime we are facing activities or appointments that have definite time demands like airline flights, I worry a little about making sure Kate is ready. It may seem strange, but we actually encounter fewer problems like that now than in the past. I find that Kate really works harder to get ready than she used to. That is part of a general pattern. It is as though she recognizes that she is not in control and feels the need to work harder. I don’t mean that she appears frantic about it. It is just that she seems more attentive to doing things “the way they should be done.” For example, until Alzheimer’s began to take its toll, she always made up the bed shortly after she got up. Over the years I have heard her say, “My mother taught me to always make up the bed.” She stopped that for quite a while. Within the last six months she has begun to partially make it up once in a while, not daily and not completely. She pulls the covers over the bed and throws the pillows in their approximate places. She also hangs her clothes up more regularly though she doesn’t hang them in what I consider to be the “proper places.” Although it saddens me somewhat to see that she has to work hard to do the right thing, I believe it is a good thing that she is taking more responsibility. She still wants to be independent. I want that to continue.

She was still sleeping soundly yesterday morning at 8:15 when I woke her up. Kevin came over for a short visit before we went to the airport. She didn’t want to get up, but she did without a complaint. Kevin dropped by at 9:15. She was ready, and I had everything packed. That gave us a brief time to be together before leaving at 10:00.

The rest of the trip went smoothly. We arrived in plenty of time. I had been a little worried that we might be rushed, but we had sufficient time to gas up the rental car, return it to Avis, check in, have lunch, and still be early enough to have some waiting time before boarding. This eliminated any potential stress that might have occurred otherwise.

We stopped by our favorite Mexican restaurant on the way home from the airport. Our server last night was a comparatively new one. It turns out that she is from Venezuela. I had a nice conversation with her entirely in Spanish. We told her that we had visited Venezuela many years ago. I think she liked that. We also bumped into an acquaintance from the Y. He was with his wife, children, and grandchildren. We had a nice conversation with them as well. For me it was just another reminder of the value of eating out.

Kate got into her night clothes pretty quickly and right into bed. She worked puzzles on her iPad for well over an hour before calling it quits for the evening. She and I both slept well although she coughed a good bit during the night. She seems better this morning, but we are both still struggling from the cold we got three to four weeks ago.

We got right back into our routine this morning. We made it to Panera about 9:30. Kate was ready to come home at 10:30. After a short break, she wanted to work in the yard despite the fact that it was 36 degrees. At least the sun is shining brightly. She has been out there almost an hour. I am about to call her in so that we can make our way to lunch.

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Amidst the Joy of Christmas There Are Moments of Sadness.

This has been a special Christmas season for us. My feelings are no doubt influenced by the belief that next Christmas Kate may be less able to enjoy it. Since her diagnosis we have tried to “live in the moment.” That has carried us through the rough spots along the way and continues to do so. At the same time, there are moments when the progression of Kate’s illness is evident in new ways. When this happens, I feel sadness overtaking me for a short time. That happened in the car after lunch today.

It occurred when I told her that we had plenty of time before our haircuts at 3:00. That would give her time to work in the yard. She tried to get the words to tell me she wanted to do something else. They wouldn’t come. At first, I didn’t guess what she was trying to say. Then I asked if she wanted to work on her albums. She did. I told her I would be glad to get out her computer. She paused for a moment and then said, “First, I would like to pull a few leaves.” I told her that was fine. She could do whatever she wanted. I knew the moment she said she wanted to start by pulling leaves that she would forget the albums. That is exactly what happened. She has been doing something like this periodically. Not once has she actually started on her albums.

These family photo albums are very important to her. She frequently tells me to “remember that for the album.” She says that in response to all manner of things that come up in our conversation. When we are with other people and someone asks her what she has been doing, she often tells them she is working on her albums even though it has been at least two years since she has done anything. Long before that, she was only editing photos, not taking any steps that led directly to assembling the photos for her album.

It is not just this episode that makes me pessimistic about next Christmas. It is many other things that I take to be signs of her decline: Her more compliant nature when I make suggestions, especially about her clothes, her growing dependence on me as reflected in her asking for permission to do so many things, or to help her with her clothes, and more.

We have been very fortunate for such a long time, but I see our quality time together diminishing as she moves into another stage. I will continue to be thankful for the many good times we have had, but I already feel sad about the prospects for the future.

 

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Enjoying Time With Long-Time Friends

Two days ago I mentioned that I had received a call from Jan and Scott Greeley while we were in Barnes & Noble. They were in town for the memorial service of a friend and were to let us know when they were ready for lunch. We met them and had a great time catching up on things they were doing. They are among our most traveled friends. Recently they returned from trip to Costa Rica. Scott and Kate have been friends their whole lives. Their mothers were friends and were pregnant at the same time. I understand from Kate that the two mothers occasionally tried to encourage a more serious relationship. By the time that might have happened, Scott’s family had moved to Midland, Texas. The two families saw one another from time to time, and they both ended up at TCU where Kate and I met.

I say all this to convey that Scott is someone Kate has known well and liked her entire life. Since they have lived in Nashville as long as we have lived in Knoxville, we have been able to get together several times a year, especially during the past few years. So when I told Kate, that the call was from the Greeleys and that we would be leaving to meet them for lunch, I expected to see her eyes light up. Instead, she said, “Tell me who they are again.” I explained and thought she understood though she still expressed no excitement. I put away my computer in preparation for us to leave. I expected her to close her iPad. Instead, she told me she wanted to finish her puzzle before going. It turned out that she was not just on the last couple of pieces but several. It took her another five minutes or so to finish. Then we left. For me, her nonchalant response to our meeting the Greeleys was a significant sign of how much her memory is deteriorating. It is one more of many little signs that tell me we are moving more quickly to another stage of her disease.

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More Signs of Confusion

Before we went to Casa Bella last night, Kate started to put on an outfit that I thought was less appropriate than she should wear. She told me to pick out something. I did and put the pants and top on the bed in her room while she was standing there. I left the room to get myself dressed. Shortly she came into our bedroom wearing the same thing she had been wearing. I told her she didn’t put on the things I picked out. She gave me a puzzled look and asked where they were. I told her I had put them on the bed. We walked back to her room. I found the top on a hanger in her closet. She had thrown the pants across a chair. It was obvious she had no recollection of my having picked these out for her. I stayed with her while she took off the top she was wearing. I told her she didn’t need to change her pants although they were more casual than the ones I had picked out. Again, I went back to get ready. She came into the bedroom where I was getting ready. Once again, she was wearing the top she had been wearing to start with. I went with her to her bedroom and helped her into the top I had picked out.

This morning she was a little disoriented. Shortly after 8:30, I went to the bedroom to see if she was up. She was walking back to our bedroom. She asked, “What can I wear?” I asked her if she would like me to find something for her. She said, “Oh, yes.” There was no effort to express her independence. I walked to her room and picked out something from her closet where there were many options she could have chosen. When I returned to our bedroom with her clothes, she thanked me and put them on.

On a related note, I have noticed that she is having increasing trouble putting on her clothes. For quite a long time she has frequently put on her tops and pants backwards or inside out. This tendency is increasing. Last night as we got ready to leave for Casa Bella, she had great difficulty getting her top on correctly.

She has had similar problems today with two different coats. Late this afternoon, we went to Panera. The sitter had taken her there earlier, but she was eager to get out of the house. We had another hour before going to dinner; so back to Panera we went. Since it has been cold and rainy today, I gave her a coat to wear. I watched as she struggled to get it on. She wanted to do it without my help. She ended up getting in the car with her right arm in the right sleeve but couldn’t find the sleeve for the left arm. Before we left Panera, she started to try to put on her coat and then asked me to help her.

Because it has been such a nasty day I was concerned about Kate’s being occupied while the sitter was with her. Working outside was impossible. That only left the iPad to keep her busy. As far as I could tell, that did not turn out to be a problem. Neither Kate nor the sitter said anything.

As she has been doing, Kate warmly greeted the sitter. She also thanked her when she left. After she was gone, Kate said something about how sharp she is. I said, “It must be nice to have somebody here with you.” She nodded agreement and then said, “It really is. More than I thought at first.” I still don’t know if she realizes she has two different sitters, but she has never mentioned anything that suggests she does. She seems equally happy with each of them.

We reached a significant milestone with the sitters this week. It marks the end of the first ninety days since they started coming. The importance of this is that our long-term care insurance doesn’t start reimbursing us until after that period. If everything goes according to plan, I will need to submit records of all the payments made through Tuesday of this week. After they have accepted them, they will reimburse us for all future expenses up to a daily maximum set by our policy (12.5 hours). At the moment, I can’t begin to estimate how long it will be before we hit that maximum. I hope it is a long time.

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There’s A Difference Between Short-Term and Immediate Memory

During the early stages of Kate’s journey, I thought “short-term memory” referred to remembering things that occurred yesterday or this morning. As time has passed and her condition has worsened, I am now focused on what is called “immediate memory.” That is just what it sounds like and is very important in coordinating with people. A few minutes ago, I observed a good example of Kate’s very weak immediate memory.

We are at Panera, and she got up to go to the restroom. When she returned, I noticed a label on the pants she is wearing. The pants were inside-out. This surprised me because I had noticed the same thing at home before leaving. She had taken them off and put them back on again. When I mentioned this to her, she went back to the restroom to change. Then she returned again wearing them inside-out. This time I haven’t said anything. I suspect we will go home shortly. I will tell her then so that she can change before we go to lunch.

Another example of weak immediate memory occurred at home before coming to Panera. I had placed her morning pills on the island in the kitchen with a glass of water beside them. I do this almost every day. I thought she had started taking her pills but noticed that she opened the cabinet and took a glass that she was about to fill with water. I told her I had a glass of water on the island with her pills. She turned around to take her pills while I started getting ready to leave. Then I heard her say, “Somebody put salt in this glass.” When I looked up, I saw that she had picked up the glass that I was using to gargle with salt water. I had deliberately put the glass in a spot where I thought she would not see it. I was wrong again. I reminded her of the glass that I had put with the pills. This time she got it.

Perhaps the most common daily example of this involves her clothes. Whether she puts her own clothes out to wear or whether I do it, she frequently forgets them and gets something else to wear.

Her reaction to these things is different now than in the earlier stages of her disease. At that time she expressed more frustration and depression. Now I don’t notice any emotion. I think that occurs for two reasons. The obvious one is that she has no memory of what she has done. The other is that she seems to have reached a point at which she is not as bothered by how others perceived her nor how she perceives herself. I usually don’t say anything to call attention to these things, but sometimes I do. When that happens, she often says something like, “Who cares?” In some ways, I am both surprised and pleased that when I tell her about clothes that are either inside-out or backwards (both of which are very common), she often thanks me.

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A Few Little Things; Do They Mean A Lot?

As a caregiver, I find myself trying to be attentive to changes in Kate’s behavior. It is often challenging to determine if the things I notice are a function of her AD or just part of the normal variation like all of us experience. Here are a few things I have noticed recently.

She is working outside for shorter periods of time than in the past. This could be related to the cooler weather although it is not as cool as other times when she has worked through very cold and very hot temperatures. It also could be related to the fact that she has pulled so many leaves off the shrubs that there isn’t much to pull. I have even heard her comment that she doesn’t have much but she wants to do a little bit.

She is also taking fewer showers. Part of this also results from the cooler weather. When she comes inside, she isn’t sweaty and in need of a shower in the way she is in the summer. On the other hand, she has been taking a shower in the morning and often another before we go out to eat. Now she is limiting that to just the morning, and sometimes she skips that. On a few occasions, she has come in from outside and said that she is going to take a shower and doesn’t.

She seems to be narrowing the choice of clothing she wears and frequently wears the same thing two days in a row and sometimes three days. I think this has developed because she has started undressing in our bedroom rather than in her room where she keeps all of her clothes. When she takes her clothes off, she throws them on the chair beside her bed or on the floor beside the bed. When she gets up in the morning, they are the first things she sees. She may just be taking the easy way out.

Along with these changes is something that I have mentioned a number of times over the past few weeks. She is significantly more cooperative. A good example of this occurred this morning when we returned from breakfast with a small group of people who work out at the Y.

She asked, “What can I do or not do now?” This occurred shortly after we decided to go to Panera. I said, “I thought we were going to Panera.” Then she said, “I could take just a little time to work outside.” I told her that would be fine. As she usually does, she expressed surprise that I was so agreeable to doing this. Then she said, “I’m going to use the clippers.” I reminded her that they were missing.

I went inside to take care of a few things while she worked outside. After 30-40 minutes I went outside to tell her that I was ready to go to Panera. That is when I saw that she was lying down in the flower bed pulling weeds. She was wearing a new coat that I had bought her about two weeks ago. I said, “Oh, you’re wearing your new coat.” She said, “It’s all right. I haven’t hurt it.” I started to respond to her but decided that wouldn’t help. In the past, this experience might have led to more irritation on her part. This time she simply got up and walked toward me. She asked, “Did I do something wrong?” I assured her that she hadn’t. We have a lot of moments like this. In the past she would have expressed stronger resentment of what she considers my pickiness. Maybe we are both learning how to handle things like this.

Are any or all of these things a sign of a more fundamental change? Does it relate to her AD? I still can’t answer these questions.

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Little Things That Add Up

During the past few weeks, I have looked back at the entries I made during the first year after Kate’s diagnosis. I have been struck by the similarity of symptoms then and now. If you are someone who has read the early posts as well as recent ones, you may be thinking Kate hasn’t changed very much. That is definitely not the case. She is unquestionably worse now than almost seven years ago. The difference now is the number and type of symptoms that occur. The progression of her illness has been very gradual. Were that not the case, she would be in a very different place today.

Last night and this afternoon, I observed two instances of behavior patterns that are very similar to what she has been doing but with subtle differences. They may be subtle, but they keep accumulating and make a difference for the long run.

About 8:15 last night, I told Kate that I was going to take a shower. She wanted to know what she should do, and I told her it would be a good time for her to put on her night gown and prepare for bed. She got up from her chair and went to her room to get her gown. When she returned, she was wearing a robe and was carrying a pair of slacks. Coming back to our bedroom in a robe rather than a night gown has become a rather frequent occurrence. I asked if she felt better in a robe than a gown. She looked puzzled. Then I clarified why I was asking. I told her that I had noticed that she frequently came back in a robe than a gown. Again, she looked puzzled. I asked if she would like me to get her a gown. She said she would appreciate that. I gave her a hug and told her I would be glad to do that. She thanked me. Like many things, I will never know why she doesn’t get a gown. She has any number that are hanging in her closet. I suspect that she may forget why she has gone into the closet, her eyes catch a robe, and she pulls it off the rack. She almost always wants a gown when I ask.

As we drove up to the house following lunch, Kate asked, “What can I do now?” I told her she could work outside or she could stay inside and work on her iPad. She indicated that she wanted to work outside, but first, she wanted to brush her teeth. I told her that would be fine. It is really a great day for outside. It is a bright sunny day and in the low-60s.

I came inside and hung my jacket in the closet. I was walking toward the kitchen when she came out. She asked, “What do I do now?” I reminded her that she had said she wanted to work outside. She said, “I was just making sure.” This may not be the first time this has happened, but it is at least the first time it has struck me that she must have forgotten what she had said she was going to do and wanted me to tell her. In the past, she would have forgotten and just done whatever she wanted at that moment.

Something else happened this morning that sensitizes me to Kate’s prospects for more serious declines. I got a text from a college friend, Nancy Hardwick, who lives in Denton, Texas. Kate and I had dinner with her and her husband, Charlie, in October when we went to our 65th class reunion at TCU. She indicated that Charlie, who also has dementia, had declined rapidly in the past few weeks, had not eaten in two weeks, and might go on hospice as early as tomorrow. I had known from Nancy and could tell by observation that Charlie was ahead of Kate in the progression of his dementia, but I never imagined that a few weeks later, he would be going into hospice care.

This news reminded me of a similar situation with a friend in Nashville. A year ago in August, I saw her at a luncheon here in Knoxville. I was aware of her Alzheimer’s and that she might be a little ahead of Kate. A month or two later, I learned that she had made a sudden decline and was on hospice. She died in February.

As I noted above, Kate has not experienced a rapid change of this nature. Knowing about these two friends, however, makes me more aware of that possibility.

In addition to these things, I have wondered about Kate’s behavior patterns over the past six weeks. She has been in an unusually good mood. She has been very compliant. I am wondering about two different things. First, could it be that she is moving deeper into the “fog” that accompanies this illness and is not experiencing the frustrations that have nagged her in the past. The second is something of a statistical nature. I have often observed certain kinds of events occurring with greater frequency are often followed by a corresponding lessening. The most vivid illustration comes from my business experience. If we have a month in which business increases dramatically, that is often followed by a slower month.

I don’t spend much time worrying about these things, but I do wonder. Among all the possibilities that I have considered, a sudden decline anytime soon is not among them.

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Nearing the End of Movies

For some reason I had not made plans for anything special today. While we were having our Saturday lunch at Bluefish Grill, I thought about the fact that we would have a full afternoon without anything specific. I decided to see what movies were playing and noticed that a new movie that supposed to be a good family movie, Wonder, was playing across from the restaurant. They had a showing at 1:10 which fit our schedule beautifully.

For months, I have been attempting with minimal success to find movies that Kate can enjoy. It is only in the past year or so that has become a challenge. We had had great success with Jane last week. I thought surely this would be one she would enjoy. It is a very touching movie with a number of emotional moments. It focuses on a young boy who was born with a condition that has caused serious problems. After numerous surgeries, his face was scarred which makes it hard for him as he enters school after several years in which his mother had home-schooled him. The overriding premise to the movie is the value of kindness.

As always, I periodically looked over to see how she was reacting but couldn’t be sure until we left after the movie how she felt about it. I quickly found out that she was not enthusiastic. She indicated that she had been very sleepy, or she might have enjoyed it. I was very disappointed because I didn’t feel that she needed to be able to follow the plot that the children, especially the stars, would capture her attention. I have often heard that people with dementia can sense emotions longer than they are able to understand what is literally happening around them. I have had the impression that has been true for Kate because up until the past year, she was enjoying most of the movies we have seen. That didn’t work today. This was a movie filled with emotion, just the kind that should have touched and would have in the past.

Although I am disappointed and saddened by the phasing out of our movie-going, I don’t intend to stop trying. On the other hand, I must admit to more than a bit of pessimism that I will have much luck. When movies go, the next thing could be live theater and opera. Life is closing in around us.

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Looking For My Guidance

Kate’s asking what to do or when to do is not a new thing, but it almost always catches me by surprise. In this respect, I am almost like someone who is unfamiliar with her habits. This afternoon before I left her with Mary, the sitter, she presented me with one of those times. As usual, I had not mentioned that the sitter would be coming and I would be going to the Y. I’m not quite sure why I don’t. It may involve several factors. One is that I know she won’t remember even if I tell her. Another is a slight fear that she might not react in the positive way she has done thus far. The latter is not a serious concern since she has reacted so well on every previous occurrence. Maybe I will get over this soon.

When Mary arrived, Kate was in our bedroom working on her iPad. Mary went back to say hello and to let her know that she was here. Then she came back into the family room and took a seat. I went back to say goodbye to Kate. When I approached her, she motioned me to come over to her. When I did, she started to whisper something. I thought she might be about to ask her name. She surprised me when she asked what I wanted her to do. I told her she could continue working on her iPad or she could work outside or they could go to Panera. She acted surprised that she was free to do these things. I have had this impression a few times before. It is as if having a sitter restricts what she can do. I have tried to be very clear that I want her to do the things she wants to do while I am gone. The thought also strikes me that it may not be the sitter that is the cause of this sense of a restriction on her activities. I have mentioned that when we return from home during the day, whether it is from Panera in the morning or from lunch in the afternoon, she frequently asks if she can work outside, where she can work outside (the front, the back, or all around), and if she can use her clippers. I have never restricted her with respect to any of these things, but she always reacts with surprise when I say “yes” to each of her questions. Thus, it may be that she still sees me as setting boundaries for her even when the sitter is here. While I hate for her to feel that I control her in this way, I must admit that also makes compliance work well, something that is increasingly evident when I do want or need her to do something like coming inside to get ready, to wear clothes that are most appropriate for the occasion, etc.