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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.

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Another Marker on Our Journey

I was so relieved that Kate had accepted and enjoyed the new sitter yesterday that I neglected to make another comment that is relevant to her whole journey. Her willingness to accept the sitter and her actually saying that Anita is her “guardian” or “companion” is a significant indicator of a newer stage in her illness. In some ways, it seems rather natural. After all, she has gradually given up lots of her independence. At the same time, the fact that I was so concerned about how she would feel about a sitter is an indication that I didn’t think she had reached such a compliant stage. This is another illustration of how even someone as close to her as I am could misjudge her decline
So I have mixed feelings about Kate’s reaction. I am glad it was easy for her to accept a sitter. On the other hand, I am once again saddened by another sign of where we are headed.

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More Signs of Change

Kate seemed unusually confused at lunch today. As we were waiting for our food, she pointed to several military from Fort Jackson which is very near where we live. Then she asked me the name of the base in Fort Worth. I told her that it is the Naval Air Station. .

After a quiet moment or two, I told her that tomorrow is Brian’s birthday. He is our oldest grandchild. She asked, “Who are his parents?” I told her that Kevin and Rachel are his parents. I mentioned that Brian is now 19 and how it didn’t seem that long ago that we had flown out to Texas when he was born. As we talked a little more, she asked, “Who are his parents again?”

She also asked me how long we had been married. I told her we had been married 54 years and that it would be 55 next May. We started talking about other things, and then she asked again how long we had been married. As I sat across from her and listened to her confusion, I felt a deep sense of sadness. There were moments when I fought to hold back the tears.

On the way home, she said she wanted to pull leaves. I told her I knew that was something she really liked to do. She acknowledged that and said, “Of course, when I start my two albums, that will keep me busy.” It is interesting that this comes up once in a while even though it has been about two years since she has done anything on them. At least she said “when I start” on my albums. She must recognize that she hasn’t been working on them.

When I pulled into the driveway, she asked if she could pull leaves. Then she asked about using clippers. After that she asked if she should wear a cap and where she should start. This is just a continuation of a pattern she has established over the past few weeks.

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A Surprising Positive (?) Change

Much earlier in Kate’s journey, I commented on the fact that she didn’t ever put up her clothes. I have pictures showing clothes stacked on the bed in her office, on the floor, and in two of the guest rooms. This continued for a very long time. I am glad to report that she is considerably better about hanging up her clothes now than in the past. That doesn’t usually happen at night when she changes into her night clothes. At that particular time, she almost always throws her clothes on the floor or the chair beside the bed along with her shoes and socks. Sometimes she picks them up in the morning or later in the day. Other times I get to them first. Over the past two-three years, I have made a point to try to pick up her clothes wherever I find them and put them back in her closet. But I don’t want to take away from the fact that she is actually working hard to keep things straight.

I don’t really know how to account for the change. I consider it positive for two reasons. One is that it makes it a lot easier for both of us to find the clothes she wants to wear. Secondly, I think it is good for her to have a responsibility, something to do besides working jigsaw puzzles and pulling leaves. On the negative side, I also imagine that she is struggling to fight the more natural tendencies of her Alzheimer’s. I see it in moments when she tries to figure out how to put on a night gown or a top. On occasion, I offer my help. She almost always turns me down. These are among those moments when I feel so sad for her. I know it takes an effort for me to face a losing battle trying to prevent or solve problems she has. I can’t imagine how it feels to have them myself.

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Another little thing

Earlier this afternoon I posted a journal entry about little changes in Kate’s behavior that are becoming commonplace. This afternoon she exhibited another one. It is not the first time this has happened, but I don’t recall saying anything about it. Kate came in from outside where she had been pulling leaves. She was hot and sweaty. Naturally, she wanted to take a shower. Typically, she just goes to one of the bathrooms. She chooses the guest room bath most often. Today, she looked at me and asked which one I wanted her to use. I told her could have her pick. She started to walk away. Then she turned around and asked, “Did you say the middle one?” I said, “That would be fine.” This fits the increasing pattern of asking for my advice or permission.