Little Things

We’ve had a string of good days lately. I say that because Kate seems happy and has appeared to enjoy herself. It doesn’t mean there has been any lessening in the other symptoms of Alzheimer’s. Her memory only gets worse, and I observe new signs of confusion.

As we prepared to leave the restaurant after lunch the other day, she asked (using hand signals) if she should take her napkin with her. That is the first time I recall her ever asking that. She has frequently taken paper napkins. She has used them in the car to wipe the saliva from her mouth or to store in a basket in our garage (after she has torn them into smaller pieces). This time it was a cloth napkin. Perhaps I shouldn’t have been surprised. On several occasions, she has asked if she should take her glass with her. Two or three times she has actually taken her glass. In two instances I caught her and returned the glass. Another time, the owner of the restaurant saw her walk away with the glass and asked if we would like a “To Go” cup.

Later at dinner that night, she asked, “Are we in Fort Worth?” I told her we were in Knoxville. She said she thought she recognized the buildings across the street as buildings in Fort Worth.

When we got home, I turned on the TV to a recording of CBS Sunday Morning while she worked on her iPad. After a while, I told her I was going to take my shower. She had her robe in her hands, pointed to herself, and then pointed in the direction of the hallway to her room where she keeps her clothes. This is one of those situations in which I misinterpreted her hand signals. I thought she was going to her room to get a night gown. I said, “Yes,” and she left.

When I got out of the shower, I noticed that she wasn’t there. I just thought that she was taking a while to find something and would be back shortly. When she hadn’t come back in another ten minutes, I went to check on her. The first thing I noticed was that all the lights were out. That made me wonder if she had gone to bed in her room. That has happened before, but it had been a long time. I called her name, and she said, “I’m in here.” She was on the bed in the guest room next to our bedroom. It turned out that she thought I meant for her to go to bed in there. The only thing I could figure out was that when I thought she was asking if she should get a gown for bed, she was really asking if I wanted her to go to bed in the guest room.

I felt really bad about that. I know that she has become much more accepting of my suggestions about clothes that she wears. She also asks me what to do a lot more than in the past. In this case, I felt like the master who had sent her away to her room. I quickly explained that I never would suggest she sleep in another room without me. She said she would prefer to be with me, and I told her I always wanted her to be with me. This is just one more of those things I’ll never understand.

On a brighter note, last night she was lying in bed working on her iPad while I was reading in my chair. She became unusually talkative. She began by saying she was glad that we had married and that we had had a happy marriage. This is a conversation that we have a lot. We both reflect on the things for which we are grateful, especially for our marriage. She talked about our children and how proud she is of them. This led to her talking about her mother and how glad she was that we had kept her in our home for the last five and a half years of her life.

All of these are things we have talked about many times, but there were two things that stood out about this occasion. One is that she would stop and start to go back to her iPad. I took this as a signal that she was finished, but very shortly, she would continue the conversation. This must have happened three or four times before she really stopped. It made me feel that she was having a powerful sense of gratitude.

The second thing that stood out was her talking about her mother’s having stayed with us during the last years of her life. Although she was not detailed in her description of those days, she clearly had not lost her memory of our having kept her. I have discovered so many things about which she has absolutely no memory that I was thrilled to know she remembered this special time. Moments like these are precious.

Could she be forgetting my name?

After we ordered our lunch today, Kate looked across the table at me and asked, “What is your name?” I misunderstood her and thought she said “her name.” She said, “No, your name.” I made some lighthearted comment, and she said, “No, seriously, what is your name?” I said, “Richard,” and she said, “Creighton.” Then she asked if I had another name, and I gave her my middle name.

This is the second time in the past few weeks that she has asked my name. In each case, I first thought she was just playing games with me. My second thought was, “Could she really be forgetting my name?” Today it seemed clear that she might be doing just that.

I do know that when we were in the waiting room of her dentist’s office this morning that she asked, “What are we doing here?” I explained that she was there to see her dentist. She said, “I don’t even remember who she is?” I also know that I had to wake her up at 10:00 to get her ready for her appointment and that she was quite groggy when she got up.

I know, of course, that there will be a time when she forgets my name and then forgets who I am. I am already witnessing that happen to close family members. I just hadn’t thought we could be approaching the time when her forgetting would include me. I’m not ready for this.

Things I’ll Never Know

So much of Kate’s behavior is normal that I am struck when she surprises me with something unusual. A couple of things have happened in the past day or so. The first occurred late Thursday when we were preparing to leave for dinner. All day she had been wearing two tops that didn’t match. At first, the one on top was inside out. I mentioned it to her, and she began to take it off. I asked if she wanted me to tell her. She said, “Absolutely.” Then I told her I didn’t think the one on top matched the one underneath. She said, “Who cares?” I let it go as I usually do.

As we were about ready to leave for dinner, she was still wearing the unmatched tops. I suggested she might change for dinner. She accepted my suggestion and only asked, “What would you like me to wear?” I brought her something else, and she put it on. As we were walking toward the door, I noticed that she was carrying the two tops she had just taken off along with a robe. I told her I didn’t think would need those; so she left the tops in our bedroom. She came back with the robe in her arms and took it with her to the car. I didn’t say a word. I’ll never know what motivated her to take her robe with her.

Last night something else happened. She had gone to bed about 8:00 while I took a shower. I usually turn out the lights and leave her in the bedroom to sleep while I turn on some music in the family room and read. I don’t usually hear from her until the next morning. About 9:15, she came into the family room and asked if I would come to bed with her. She said, “It’s easier for me to go to sleep if you’re with me.” I joined her.

When I got in bed, I held her. In a moment, she said, “You’re my daddy. I feel safer when you are here.” Then she said, “I’m your little girl.” I assured her that she was. A couple of times she said something else and called me, “Daddy.” Then she appeared to go to sleep.

When things like this happen, I try to imagine what was going on in her brain. I’ll never know.

We’re on a different schedule today.

Kate slept unusually late this morning. I decided that given the flu, rest would be a good thing. I checked on her just after 11:30. She was still sleeping soundly. That gave me plenty of time to have my breakfast, wash, dry, and fold two loads of clothes, as well as checking the morning email and spending time on my blog.

In addition to rest, I know that she is supposed to get her Tamiflu approximately every 12 hours. That led me to wake her at noon. When I got to the bedroom, I saw that she was already up. I went back to the kitchen which serves as my office. I continued to work on another blog entry on social isolation that I will probably post on Monday while waiting for Kate to get ready.

Kate finally walked into the kitchen about 1:15 not knowing at all what time it was but ready to go. She was a little grumpy. In a cheerful tone of voice, I told her I was so glad to see her, and I wasn’t going to do anything to upset her day. She smiled. I gave her a hug, and she was fine. I had already decided to skip Panera and go straight to lunch at Bluefish. It was 2:00 when we sat down at a table. By this time I was already getting an impression that we were both making steady progress recovering from the flu. Except for having slept so long as well as several times she coughed, Kate seems back to normal. I also feel better but know that I still need another day or to before I am where she is now.

We left the restaurant at 3:05. I knew that Kate would not want to spend the rest of the afternoon at home; so I had brought our iPads and cups planning to go directly to Barnes & Noble. That is where we are now. Before settling down at my iPad, I had one of those experiences that every parent knows about but might not think of in connection with a person with dementia and her caregiver.

I selected a table for the two of us and gave Kate her iPad while I got her a passion fruit tea with lemonade. I returned to the table with her cup. Then I took out my iPad. Before I could start, she asked me where the bathroom was. It is located off the main area; so I don’t feel comfortable letting her go or return on her own. I closed my iPad and carried hers and mine as I led her to the restroom. I waited right outside and brought her back when she had finished.

This kind of shift from one thing to another is not a big deal, but it happens so often that it can be a problem for the caregiver. I should note that sometimes I can predict such things. In fact, this was one of those times. I had thought of asking her about going to the restroom at the restaurant. Then I thought I would wait until we arrived at Barnes & Noble. That plan failed when I forgot to do it. It’s another illustration that as a caregiver, I am frequently making these kinds of mistakes. There is just so much to remember.

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.

When Kate is happy, I am happy.

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

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

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

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

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

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

Growing Dependence

I continue to see different ways in which Kate expresses her growing dependence on me. It is expressed in lots of little things. Most of these are not brand new. It’s the number of different things that occur and the way in which she expresses them. For example, after the sitter left this afternoon, I asked if she had gotten along all right. She said yes. Then I said, “You know I always worry about you.” She said, “I know you do. Because you don’t want anything to happen to me. You’re a good husband.” I said, “I’ll always be there for you.” That kind of exchange is very common for us now.

At dinner, she asked me the name of the owner of Chalupas. I told her. Then I mentioned his wife and the children who also occasionally work there. She stopped me and let me know that I was telling her more than she could take in. I believe her honesty represents a sign of trust that I will respond with understanding to her own expression of vulnerability. She depends on me to know when to stop, and I do immediately. I not only stop, but I often apologize for going so far beyond what she had asked. I know that she can’t process much information and try not to overwhelm her, but I frequently go too far in answering her questions.

As we drove into the garage after dinner, she whispered and asked, “Are we staying here tonight?” She had asked the same question last night and always whispers when she asks. I suspect she thinks there might be somebody else who might hear her. Before getting out of the car, she asked (with hand signals as she often does) if she should take her cup into the house. As I have reported a number of times before, she often asks if she can work in the yard, if she can use her clippers, and where in the yard she should work. I have never told her that she can’t work in the yard. I assume asking for permission is just an extension of my handling so many other aspects of her life.

By themselves, none of these incidents is dramatic, but they, along with many other similar ones, suggest an increasingly greater acceptance of her dependence. As I think of it, one area where she had held on to her independence involves the clothes she wears. That is another area where she has really displayed more dependence. Coupled with my increased acceptance of what she wears, we are having fewer problems with clothes than in the past.

Being Cooperative

In my recent entries I have paid particular attention to ways in which Kate has declined. One thing that I haven’t mentioned directly is that she has been unusually cooperative with me over the past few days. It isn’t that she is normally uncooperative, but she has held on to her independence and has expressed resistance to many things that I have done to help her. That involves things like offering her my hand when she is walking up or down steps, selecting clothes for her, or telling her about stains on here clothes. It also involves things like letting her know when it is time to go some place or how much time we have until we leave or whether we have a lot of time or whether we need to hurry.

Recently, she has not expressed the same degree of resistance or irritation. I don’t mean that it has disappeared, but that it is very noticeable that she has been much more agreeable in the past few days. I can’t help wondering if this might not be another indicator of her decline, that she is acknowledging her dependence on me and letting me take charge. I will also say that I have been increasingly respectful of her desire for independence and wonder if my own actions have been less threatening to her sense of independence.

Sad Moment, – Sundowners?

About an hour ago, Kate came in from outside where she had been pulling leaves since we got home from dinner. I met her in the laundry room, and she said, “What now?” I told her it was time to take a shower and get into her night clothes for bed. She accepted that and went to shower.

After quite a while, I went back to her room to make sure she remembered to put on her night clothes. When I got there, she was about to get dressed to go out. I told her I was just coming back to remind her to put on her night clothes. She thanked me for that and said she was about to put on her regular clothes. I left the room.

In a little while she came into the kitchen fully dressed with her iPad in her hand along with a book of crossword puzzles. She was ready to go out to Panera or Barnes & Noble. I reminded her she needed to put on her night clothes. She went back to her room.

I had sat down in my chair in our bedroom when she walked in fully dressed. Once again, I told her it was time for her night clothes.

She went back to her room. When she returned, she was carrying a night gown but still dressed. She said, “I can just put this on over . . .” (did not finish). I told her she should take off the clothes she was wearing and just wear the night gown, that she would get hot wearing both.

She left again. She came back without the nightgown but had put on a different top. I stood up, walked over to her and put my arms around her and told her how much I loved her. She hugged me tightly and started to cry. She quickly stopped herself. Then I said, “Wouldn’t you like me to get you a night gown?” She nodded. I went back to her room and got a night gown and brought it to her. When I gave her the gown, I said, “We take care of each other, don’t we?” She agreed. Then I took the clothes she had been wearing and hung them up in her closet.’

I am back in the bedroom now. She is working on her iPad. When I walked in, I said, “The way you are lying there you look like the subject for an artist to paint.” Then I said, “We have a good time, don’t we?” She agreed. I said, “We’ve had a good time; we are still having a good time; and we are going to have more good times.”

New Patterns

I have previously noted on several occasions that Kate will ask me if she can pull leaves outside as we approach the house after being away from home. This started as something only occasional. It is now becoming a regular pattern. Normally, she asks, “Can I pull some leaves?” After I tell her she can, she frequently asks, “Can I use the clippers?” Often she doesn’t say the word for clippers. She just closes and opens her right hand. I know what she means and tell her it’s all right. After that, usually as we have pulled in the driveway or garage, she says either, “Where can I start?” or “Where do you want me to start?” or just “Front or back.?” I sometimes tell her she can start anywhere she wants. Sometimes I know that we will be going out soon and don’t want her to get so hot that she needs a shower. In those cases, I sometimes suggest she choose a shady spot or even point out a shady spot if I see one. Having settled on where she will start doesn’t mean that is what she does because her memory doesn’t permit her to remember. She seems to gravitate mostly to the two flower beds along the driveway or the flower beds in the front of the house.