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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.

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Dropping Her Guard

Over the weekend, Kate and I went to see the movie, Jane, about the life of Jane Goodall. We were both amazed at the way the chimps in the wild became comfortable with Goodall after they were in close proximity for a good while. Some of this was fostered by Goodall herself by providing a supply of bananas that required the chimps to come closer and closer. We observed something similar on a PBS special on Nature recently. A photographer followed a cheetah and her cubs for a period of about two years. The mother cheetah and her cubs became so accustomed to the photographer that he was ultimately able to pet her and put a collar with a GPS device around her neck.

With these things in mind, I am noting that Kate is also showing more signs of dropping her guard with me. I feel sure something similar will occur with others. In Kate’s case compared to the wild animals mentioned above, she is influenced not only by having been with me a long time. I believe this change is also a function of the disease. It is much like an innocent child who doesn’t realize that what she says or does will be interpreted differently from the way she had wanted or intended. Let me give you an example of the kinds of things I am thinking about.

As we left the restaurant after lunch today, Kate heard a news item about a politician getting caught in lie. She didn’t understand and asked me to explain, a very common occurrence. That itself is a small example. In this case, after I gave her an explanation, she said, “You’re gonna have to explain this to me later.” Her words and they way they were expressed clearly showed that she simply didn’t understand, and it was not something that was very difficult. It would not surprise me if she had done the same thing if she had been with someone else.

Another example occurred after we were home. She changed her top to work in the yard. After buttoning her shirt, I heard her laugh. When I looked at her I could see that the right and left sides of the shirt did not meet as they should. I said, “You got a button out of place.” She said, “Two buttons.” She had been able to laugh at herself for doing this. Unlike the frustration she expressed in earlier stages, she was now able to look t what she had done with a touch of amusement.

She was struggling a little to get her shirt buttoned correctly; so I helped. She accepted my help without any problem. It took me a moment to get the two sides of the shirt as they should be. I said, “This can be tricky.” She said, “It really can be.” This exchange was done very naturally without feeling that this was a symptom of her AD. Over the past year I have more of this kind of behavior. It makes me think of what many people say about someone with dementia. “At least, she doesn’t know.” I can see we are moving in that direction. I also think her receptivity to the sitters, especially letting them take her to Panera, is another indication of this change.

Apart from these things, I see more and more little things that I have seen in the past. The difference is that now so many things are happening even in a single day. Several things come to mind. The weather has cooled in the past week, and I have given her an old jacket of my dad’s to use when she is working outside. It is a good warm jacket with one problem. It has a warm liner that we can take out. The problem is that each time she takes it off, the lining in the sleeves comes out. This leads to much confusion when she puts it on again.

She likes to use clippers when she is working with her shrubs, but he keeps losing them. Long again, I might buy fewer than six or eight pair over a six-month period. A few days ago, I bought her three new pair. She has already lost two of them, one the first time out, the other the second time. Earlier today, I looked around the shrubbery but didn’t find either one. I did, however, find a pair of sunglasses I bought about six weeks ago. They had been missing for at least a month.

After getting her shirt buttoned, she wanted get something to drink. She went to the refrigerator and poured herself a small glass of apple juice. Then she went outside without drinking it. She also walked by the jacket that I had just gotten out for her.

Fortunately, none of these things represents a serious problem. In the scheme of things they are very small. At this point, I have been able to adapt well enough that they don’t bother me. I am just glad that she seems happy and hope this continues for a long time.

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More Signs of Compliance

Today is Sunday, and it’s been a good day. Kate was up reasonably early though not as early as yesterday and the day before. I tried to interest her in church, but she didn’t bite. We did make our usual visit to Panera. Then we came home for about 45 minutes before leaving for lunch. Kate to a brief rest. Once I mentioned that it was about time for lunch, she got up both willingly and quickly. This was not characteristic of her one or two years ago. She is much quicker to come in from outside or stop whatever she is doing inside when I tell it is time to go. That certainly makes my life, and her, much better.

For the first time in quite a while we had a success with a movie, Jane, a documentary about Jane Goodall. It was an excellent movie that was enhanced by the discovery of over 100 hours taken Gumbe where she studied chimpanzees for thirty years. Kate loved it. As we walked out, she said, “This should be shown in every school.” Hers is a remarkable story and having original videos so that we could really see her with the chimps added to its impact.

After returning home from dinner, Kate went to her room and came back with a robe. This is something that occurs frequently when she has intended to get a gown. I asked her if she had wanted a gown. She looked a little surprised and then went back to get one. She brought one back to the bedroom but also brought a different robe. She had obviously forgotten that she had already brought one.

As I was getting out of the shower, she came in and said, “Question. Do you think I should go ahead and get into bed?” I told her I thought that would be a good idea. She doesn’t ask me every night, but it is common for her to ask me if it is time for bed and/or if she should put on a night gown. I am not sure what has prompted this. My suspicion is that there are so many things that I tell her it is time for that she is beginning to anticipate my questions. She is very sweet when she asks, and I must say I feel a touch of sadness when she feels she needs to ask me questions like this.

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Always Something New

Tonight I brought Kate’s meds to her as I do each night. She asked, “For tonight or tomorrow?” This was surprising to me because I have never given her medications at one time to be taken the next day. Sometimes I can see something that has occurred that would prompt a question like this. In this particular case, it was something new that seems “out of the blue.”

We have the evening news on TV. The big news for the past three days is the shooting at the First Baptist Church in Sutherland Springs, Texas. Virtually, every time we have had the had the news on radio or TV, we have heard reports of this horrible shooting. Kate has responded to some of the news with greater than normal interest because of her roots in Texas and the fact that our son lives in Texas. Each time, including a moment ago, the subject has come up, she has reacted as though this is the first time she has heard of the shooting. She always asks, “Where is this?” I know I must have told her as many as ten times. She is simply unable to retain it.

This prompts me to say that I have been reading some of my posts from the first ten to eleven months of 2011. One of the things that strikes me now is that some of the things about the weakness or lack of short-term memory sound identical today. It illustrates the lack of precision of my words in describing her symptoms at that time. I suspect it also reflects my own perception of how short short-term memory is. In reality, it is much shorter today, but I had not yet had the experience of the kind of short-term memory that is more appropriately called “immediate” memory.

I have always thought that the progression of Kate’s illness has been very gradual. Comparing my early posts with what I know today provides strong reinforcement for this perception. Her decline has been even more gradual than I had thought. That adds to my belief that Aricept (donepezil) and Namenda (memantine) may have been effective. Of course, there is no way to be sure since we don’t know what would have happened if she hadn’t taken them.

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A Change in Mood

We have had a long string of good days over the past three weeks. We were bound to experience a change. Today is the day. I didn’t notice anything different before making our morning trip to Panera. In the car on the way over, she didn’t want me to talk. I complied. Before getting out of the car, I asked her if she wanted to know if she wanted to take her book of crossword puzzles inside. She hesitated a moment and then said she didn’t. While we were there, she was frustrated as with her jigsaw puzzles. Over the past few weeks she has had even more problems than usual but had learned to simply hand over the iPad to me to get her back where she wanted to be. Today, she was just disgusted. At one point, she gave me a look that meant she was ready to go. We got in the car to go home. As we approached the house, she asked if there weren’t somewhere else we could go. I asked if she would like to go to Barnes & Noble. She say, “Anywhere. I don’t care.” I had wanted to go by Walgreens and select some photos for printing and suggested we go together. She accepted. That really didn’t do the trick either. It did, however, pass a few minutes during which she didn’t seem frustrated or depressed.

I decided to go for an early lunch at a restaurant where we usually eat lunch on Saturday. This Saturday we have another engagement; so I thought that might be a good option for us today. The primary reason for my selection was that it is almost 25 minutes to the restaurant. I was hoping that the drive would give her time to regroup. I took my iPad in with us and showed her pictures of our recent trip to Texas. She seemed to enjoy that.

Upon our return home, she asked if she could pull leaves. I told her that would be fine. She did that for about thirty minutes and then came inside. In a few minutes, she came into the kitchen where I was working on my computer. She had her iPad under her arm. She was obviously ready to get out of the house. We got in the car and went to Barnes & Nobel and spent about 45 minutes there before leaving for our regular hair appointments. She is finishing up right now as I am writing this post. Tonight is opera night at Casa Bella. I hope that will give her a lift.

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Noticing a Change

Over the past few weeks I have noticed that Kate has been asking me to remind her of the names of people more often than in the past. It is not surprising that this was most evident during our recent trip to North Carolina. I am, however, noticing that she is asking for names with quite a number of people and places. I suspect that the more she does it, the more comfortable she becomes in asking me to fill-in for her memory.

Simultaneously, she appears to be more comfortable in accepting or asking for my help in other ways (clothes to wear, getting ready to go places, etc.) I know that I have mentioned a number of times that she occasionally says something about how much she depends on me. Yesterday at lunch, she said it. Only this time she said it twice, the second time she gave me a very serious look as if to convey, “This is not a routine statement I am making.”

I have always tried to affirm my desired to be here for her. My most typical response has always been, “You can ask me as many times as you want. That is why I am here.” I have othe variations of this sentiment. “I will always be here for you” is one that I have also used. Most recently, I have said, “We are a team. We will do this together.” I don’t think she literally understands fully what I am saying. I know that she takes it as a statement of support for her. For me, that is the most important thing. I want her to know that she can count on me.

 

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Not Feeling Well

Yesterday afternoon about 3:30, Kate wanted to get out of the house. I decided it was best to go back to Panera because it is close, and we would be able to get back home by 5:00 to get ready for dinner at Casa Bella. After an hour, Kate indicated that she was ready to go home. She seemed a little frustrated. I assumed that she might have had trouble with her puzzles on the iPad. That continues as an issue.

As we were leaving the parking lot, a car turned into the lot right beside us and startled her. I didn’t think much of it. She is often startled by sudden noises or movements. In just a few seconds, I looked over at her and saw that she had a napkin up to her mouth and seemed to be holding back tears. I asked, “What is wrong?” She said in a loud, almost defiant tone, “I don’t know.” Now she was crying but trying to hold it back. Crying has never been something she likes to do. She cried all the way home which, fortunately, is only 4-5 minutes at the most. It was very clear to me that this response was something totally uncharacteristic of her. I got out of the car in the garage and went around to help her. She got out very slowly. She was almost shaking and looked confused and feeble. It was almost as if she were wondering, “What is going on? Where am I?”

We walked back to our bedroom. I noticed that when she looked at me it was as if she didn’t know who I was. I spontaneously said, “Do you recognize me?” That brought an angry response. She said, “Of course I know you.” I didn’t push for any further explanations. I told her she was having a panic attack and it was probably best for her to simply lie down on the bed and relax. Then she sat on the bed and started to undress. As she did, she said she wanted to take a shower. She asked me not to leave her. I helped her into the bathroom and turned on the shower. She got in while I got a towel and waited for her. During the shower, she started to regain her composure and said she was feeling better.

When she got out and had dried herself, she seemed fine. It was then that I told her she seemed better and wondered if going ahead to opera night would make her feel better. She indicated she thought it would.

We had another pleasant evening at Casa Bella or so I thought. When the program was over and we had said our goodbyes, she walked out to the car very slowly. She told me she was very tired and wanted to get to bed right away when we got home. It was 8:35 then.

Before we got home, she began to tear up again. I helped her out of the car when we arrived at home. She held on to me and didn’t want me to let go of her. We walked directly back to the bedroom where she seemed to be frightened. As with the earlier episode, she looked confused and was shaking very slightly. I got her a night gown while she undressed. She wanted me to get into bed with her. I did. She wanted to be held and finally went to sleep.

Shortly after 4:30 a.m., she woke up and appeared to be having another attack. She asked me where the bathroom was. I got up and walked her to the bathroom. When she had finished, I walked her back to the bed. As before, she wanted me to hold her. I did. After a while it appeared that she was asleep; so I pulled away from her. When I did, she pulled me back. I remained that way for another 45 minutes when I got up for breakfast and a short walk. She remained very calm.

When I got back from my walk about 45 minutes had passed. I checked on her. She was still sleeping. She woke up around 8:00 and went to the bathroom. Then she went back to bed. I told her I would be in the kitchen if she needed me. I just went back to check on her. She is sleeping.

This experience leaves me wondering if this is something that might recur today or some other time in the future. Will it get worse? We have been so free of complications during this long, slow transition. I wonder what lies ahead and what we can do about it. Of course, I plan to contact her doctor. I may also check the caregivers forum on the Alzheimer’s Association website and the Memory People page on Facebook. This reminds me of the Alzheimer’s Association help line. That may be something else to explore.