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Taking Stock of Where We Are

Once in a while I like to ask myself how I am feeling about the way things are going. Right now, I would have to say that I am not as upbeat as I have been in the past. Kate is changing, and I am changing along with her. What is most encouraging is that we are still active and enjoying ourselves. On the other hand, she is finding it even more difficult to perform certain tasks that before.

A good example occurred yesterday at Panera. She was working a puzzle on her iPad and got stuck and asked for my help. When I looked, I could see that all but two pieces of a 16-piece puzzle were in their proper places. She thought she had put the other two in their right places. She couldn’t see that a little of the background was showing around the edges of each piece. She also didn’t notice that the images on each piece did not fit where she had put them.

To help her, but not do it for her, I moved the two pieces to the side. That left two vivid orange spaces begging for the right pieces. I not only placed the pieces to the side, I put one above the other that would match the location of the appropriate spaces. She struggled trying to figure out which piece went where. I don’t actually I know if she got them. I tried to look, and she blocked my view. She may have just started over. One of the surprising things is that she placed the first 14 pieces in their right places and does so all the time. I know from past observation that she works very slowly and goes through a trial and error process.

When I see the trouble she has with her puzzles, it isn’t surprising that she is having difficulty getting dressed and undressed. Both of those tasks demand a lot of time and also trial and error.

I attribute her increasing dependence on me as well as her compliance as a direct result of her recognizing that many tasks are becoming difficult. I still don’t see any signs that she is frustrated or emotional in anyway because of these challenges. I do see looks of bewilderment, but that’s it. I am taking that as a good sign, but I don’t like seeing her work so hard to complete such routine tasks.

It is clear to me that from an emotional standpoint, I am the one who is facing challenges. For the first time in my life, I have experienced anxiety. It is evidenced in my forgetting things that I would normally remember. Yesterday, for example, our sitter told me she would not be able to come on Friday. She asked if the agency had told me. I told her they had not. Later I spoke with the agency. The person with whom I spoke said she had told me last Friday and that they are sending the sitter who comes on Monday. I had completely forgotten it. I also find that I am waking up at night and having trouble getting back to sleep, something that rarely happened in the past.

Fortunately, we are still getting out. That provides both of us the kind of stimulation that we need. We are having lunch with church friends today. Tonight we will be at Casa Bella for opera night. We have several out-of-town visits with longtime friends. This Saturday we will lunch with the Robinsons in Nashville. After that, we will visit Kate’s best friend, Ellen. We’ll be back in Nashville next Tuesday for a visit with the Davises. The following week we will also visit with the Greeleys. Since all of these friends live in the Nashville area, you might think it would make sense to make a single trip and stay a few days. In some ways that is right, but doing it in multiple trips prevents Kate from having too much social contact in a single time frame. That wears her out and can be confusing for her. We avoid that by taking multiple trips and spread out the pleasure. It makes each trip a little more special.

Let me close by saying once again life is changing. It is more challenging in variety of ways. At the same time, we are actively engaged in supportive activities and happy about our lives. We are far better off than many others who are making this same journey. We continue to be grateful and wish that everyone could be so lucky.

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A Peaceful Sunday

It was a very peaceful morning in our home. Kate slept until almost 11:00. I also slept a little later, 6:25, after initially waking at 5:15. I had breakfast and got in a walk of almost three miles. I checked email and did some reading in a book I discovered recently, The Dementia Handbook: How to Provide Dementia Care at Home by Judy Cornish. Her approach to caregiving for people with dementia has captured my attention. (I’ll say more about that below.) As always, I’ve had music going constantly. This morning it was a collection of classical sacred music. This is the closest I come to meditating.

The Dementia Handbook led me to think about how Kate and I have approached her Alzheimer’s. At the time of her diagnosis, we were determined to make the most of our time together although we didn’t know how much time that would be. The doctor gave us the impression that it might be as long as twelve years but, possibly, less. I am sure neither of us imagined that she would be getting along as well as she is almost 7 ½ years later. It is really remarkable how well she does, especially since her memory is so very poor.

I read a lot of different things about dementia. One of those is that people with dementia retain abilities related to emotions far longer than they remember names and facts. I was shocked when I first discovered that my mother did not know me. For a long time, she had greeted me as she had all her life. I assumed, incorrectly, that she knew I was her son. In a sense, she did know me. That is, she recognized me, but she no longer knew my name or that I was her son. I have noted in several of my posts that Kate is beginning to forget the names of our children, but she still knows them when she sees them. At this point, it is only the names that are slipping. The same is true for me. Sometimes she forgets my name, but she still knows I am her husband.

What I am learning from The Dementia Handbook makes a lot of sense in terms of my own observation of Kate. In most ways, she usually appears perfectly normal to anyone we meet in short-term interactions like those that occur at Panera, Barnes & Noble, or any of the restaurants we frequent.

She retains the ability to greet people, to express interest in them, or to offer encouragement. For example, at lunch today our server was telling us about her week. Her car died.  She has no transportation. She is a single mother who works full-time as a server while going to school. I told her I couldn’t imagine how she was able to deal with all that. She said she sometimes just goes into the bathroom, breaks down, and cries. Kate immediately spoke words of encouragement and suggested that it was good to “get it all out,” and she did so with a tone of voice that communicated her sincerity.

On numerous occasions, she has approached house cleaning staff in hotels or similar personnel in restaurants and expressed appreciation for keeping the place so clean. A year ago this past Christmas, her cousin, Sharon, took us to lunch at her country club. As we left, Kate thanked a member of the clean up crew. Sharon was amazed at Kate’s sensitivity. I am also mindful of the fact that at the time of her diagnosis, we were told that she would retain her greatest strengths the longest. Her social skills and a caring heart are among those.

I will never know all the things that have made Kate’s experience with Alzheimer’s so much better than that of many others. I do believe, however, Cornish has it right when she suggests that the best way to care for a person with dementia is to recognize that she is unable to do many of the things that depend on memory but that other abilities remain in tact for quite a while. The best treatment is to minimize the situations demanding memory and maximize those that capitalize on the person’s experiential skills. I believe that is what we have done. Rather than remaining at home most of the time which is the easy thing to do, we are out and about a good portion of the day including the dinner hour. I started eating out for all our meals as a way that Kate and I could focus on each other more than we might have done if I prepared meals at home and then cleaned up the dishes afterward. I didn’t realize how critical this would be to both of us from a social standpoint. I plan to keep it up as long as it is feasible.

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Recognizing People with Dementia (PWD) as More than Patients

The first book I read following Kate’s diagnosis was Jan’s Story by Barry Petersen. I remember thinking it should have been entitled Barry’s Story because it didn’t really tell the story of Alzheimer’s from Jan’s point of view but from his. Since that time (7 years and 3 months), I have had a good bit of personal experience and have read about the experiences of other caregivers and a few people with dementia. That has led me to see that caregivers receive a disproportionate share of the attention. As a caregiver myself, I certainly believe we need and deserve attention. I just don’t want us to forget or neglect the people with dementia.

My first personal glimpse of this came when I tried to locate a local support group for people with dementia. I couldn’t find one. I contacted national and local offices of the Alzheimer’s Association as well as my contacts in the field of elder care and social work. I discovered many opportunities for groups for caregivers, but nothing available locally for Kate. This did not present a major problem for us since she preferred to be private about her diagnosis. A couple of years ago, however, I asked if she might be interested in finding a group. She said she would. That is when my search failed to come up with anything.

Since then, I have read books by people with dementia and found that they, too, believe they don’t receive their fair share of attention. I’m currently reading a book entitled The Lewy Body Soldier by Norman McNamara. He is particularly outspoken about the need to include people with dementia in all planning for programs and facilities for people with memory problems. Kate Shaffer and Rick Phelps are two other people with dementia that have been strong advocates for people with dementia.

I believe there are reasonable explanations for this disproportionate attention on caregivers. I think it all begins with an image of a PWD. The tendency is to think of someone who is in the later stages of the disease. Most of us don’t think about the long period of time before that when one can function pretty well. I believe Kate is now in Stage 6 of the 7 Stage model of the progression of Alzheimer’s. Yet, she functions very well in our social interactions. Most people would never guess that she has Alzheimer’s. It makes me think about the large number of people around us that have dementia and who could contribute in many ways to help us better understand this disease.

As I think about it, I believe that even caregivers often misunderstand the abilities of those for whom they are caring. I know that happens to me. It is evidenced in the struggles that Kate and I have over her independence. I want to help her, but I have a tendency to help where help isn’t needed or wanted. She lets me know. As I pointed out in a recent post, this is a challenging situation. It requires keen observation and ability to adapt as the disease progresses.

Beyond this misunderstanding of the abilities of PWD, it is much easier for people to see and understand their own problems. I can easily see my own problems in adapting to Kate’s behavior, but I have little knowledge of her problems. She has never talked much about hers. I can only infer from what I see. I know she must struggle in ways that I do not recognize. I wish I did. Thankfully, she is not shy in letting me know when I say or do the wrong thing, and it is normally done with an element of love and respect.

Of course, caregivers have considerably more opportunities to make their own needs known. There are many support groups in local communities where they can share their experiences and frustrations. There are also many online communities like those sponsored by the Alzheimer’s Association or a number of groups on Facebook. In addition, there are many books addressing the needs of caregivers and tons of advice for making their role manageable.

I believe there are two guiding principles that could be a starting point for those of us who want to enlarge the focus on PWD and make them a greater part in providing better care. One is to recognize that PWD have a broad range of abilities well into the later stages of the disease and to capitalize on this knowledge. There is much that a person can do and contribute long after the diagnosis. Second, is to recognize there is great diversity among PWD. One approach to working with PWD is unlikely. I have tried to keep Kate and me as socially active as possible. We spend the better part of every day away from home. In some ways, I wish that weren’t so. On the other hand, I believe the kind of social interactions we have at Panera, Barnes & Noble, the restaurants we frequent, the live performances we attend, and our various day trips to visit out-of-town friends have gone a long way to maintain Kate’s ability to get along as well as she has. These things appear to have worked for us. Caregivers and loved ones have to make their own decisions concerning what is best for them. And as I have said before, many people have more complicated and challenging situations than Kate and I. Some are working full time jobs while playing the role of caregiver. Many have a variety of other health issues to deal with. In addition, some face more challenging symptoms like anger and aggression. All that any of us can do is give our best under the conditions we face. I wish everyone the very best as you negotiate this path.

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“So, how are things going?”

I am often asked how Kate and I are doing. I appreciate the concern, but I always ask myself, “What is the best way to answer that question?” For example, as I reflect on the past week, I would say it’s been a good one. I think that’s true despite my having lost Kate for 20-30 minutes yesterday afternoon. In a previous post I commented on our having had several musical experiences that were special highlights for us. On top of that, Kate has been in a very good mood for the past few days. She’s even been in a good humor at the beginning of the day, something that is more challenging for her since it takes her a while to wake up. Virtually every day ends well. That was certainly true this week. I might say that “things are going very well.”

My typical response, however,  is to say “remarkably well.” I believe that has been a good summary response the entire time we’ve been on this journey. On the other hand, it doesn’t really capture the whole story. For most of the past seven years, Kate has experienced frustration over not remembering things she had wanted to remember or having difficulty with tasks that she used to do with ease. The past couple of years she has been moving beyond that. I don’t believe she connects any of her behavior with her diagnosis the way she did initially.

Over time she has become increasingly bored when she is in the same place for very long. That has been a special problem since she hasn’t been working in the yard as much during the past few months. Almost every day, we move from home to Panera, to lunch, to Barnes & Noble and/or Panera, to dinner, and home for the night.

30-minute break.

I am writing this at Barnes & Noble right now. Thirty minutes ago, a man whom we met here last week dropped by our table to say hello. That led to a good conversation in which we shared a little information about each of us. I am sure that for Kate the highlight of our conversation was her discovery of his Texas roots in Grand Prairie. As she has aged, she has developed a more typical pride in her native state. We discovered several other people with whom we have friendships including a former pastor of ours when we were at TCU. We have many experiences like these at just about every place we go. It makes me wonder if this is part of why Kate likes to get out of the house as much as she does. I know these kind of social interactions boost my spirits. They remind me that even with change, we still enjoy ourselves.

Ultimately, everyone’s life is a mixture of good things and bad, not just those of us who are caregivers. I recognize that some people seem to enjoy a disproportionate amount of good things. Kate and I believe we are among them, and we both feel for those whose struggles have been much greater than our own. That said, I am deeply saddened as Kate continues her decline. Our lives have changed significantly in many ways since her diagnosis. They will change even more in the months ahead. That’s the bad news. The good news is that we continue to have enriching experiences together and with others.

My final observation about answering the “how are things” question is this. The precise answer depends on a number of different things like who is asking the question, how much does the person really want to know, and how much time do you and they have. As I said earlier, I think we are getting along “remarkably well.” That is probably a pretty good response for most people who inquire. For a few others, I may go into greater detail.

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Reflecting on Kate’s Social Isolation

Much is written about the social isolation faced by people with dementia and their caregivers. Isolation has had a significant impact on Kate. Until her diagnosis, she was a very active volunteer librarian at our church. She took this position after working  as a librarian/media specialist with the Knoxville schools. She derived much satisfaction working at the church. Even though she was a volunteer, she spent a lot of time there and developed a good relationship with the staff. She was included in their staff meetings and social activities. She often went to lunch with several of the staff on a regular basis.

In addition to the staff, she also got to know a lot of the church members and their children. Sunday school teachers often came to her for resources for their classes. If she didn’t have anything in the church library, she would find the appropriate material elsewhere and get it to the teacher. She developed a strong collection of books and media for children. As our church has a lot of young married couples, we added lots of children. Parents brought their children to the library. Kate loves children and cultivated relationships with them. She offered story time for children in Sunday school and in our weekly day school. Kate’s volunteer work at church became a central focus of her life. She only gave it up when she recognized the symptoms of Alzheimer’s made it difficult to manage her responsibilities the way she wanted.

After her resignation, I invited her to join the Sunday school class that I was teaching. She tried it periodically but never fully engaged. We had a lot of class discussion. I think she found it too difficult to follow.

Beside the church, she had two other important social connections. One of those was her very close friend, Ellen Seacrest. Gordon and Ellen had been good friends since the early 1970s. Our children grew up together, and we spent a lot of time together socially. They were the couple with whom we celebrated New Year’s Eve many years. After leaving her volunteer position at church, the relationship between Kate and Ellen grew stronger. Then after Gordon died in 2013, they became even closer friends. Except for Kate’s brother and his wife, Ellen is still the only person she has told about her Alzheimer’s. Two and a half years ago, Ellen had a stroke while visiting her daughter in Nashville. She was in the hospital followed by rehab. Several months passed before she moved into assisted living in Nashville. Although we visit her almost monthly, it is not the same as having her in town. In addition, Ellen’s speech was affected by the stroke, and it is very difficult to understand what she is saying.

I should add that Kate has had three other close relationships since we have lived in Knoxville. One of those died quite a few years ago. Another, Ann Davis, moved out of state for a number of years. She and her husband now live in Nashville. We often stop to see them when we are there to visit Ellen. The third close friend moved to Arkansas following her marriage after the death of her previous husband with whom we were also close friends.

There is one other social connection that was important to Kate but is now broken. That’s PEO. She had been involved with them for more years than I remember, At one time she was their chapter’s President. She frequently hosted meetings in our home and was occasionally in charge of the program. She was never close friends with any individual members, but she enjoyed and respected the members and valued PEO’s mission. She was especially supportive of PEO’s grants and scholarship program for women to attend college. Over time Kate’s memory of the members began to fade. That was especially true since they only meet once a month. The result was that she no longer felt comfortable going to meetings. For a while, I encouraged her to go, and she agreed to do so. Eventually, I sensed that when she was with other members, the conversation didn’t involve her as much. She didn’t know who was talking or grasp what they were saying. She simply couldn’t keep up. One time when I reminded her of her next meeting, she told me she had resigned and wasn’t going anymore. I never pushed her after that. I spoke with one of the past president’s who had been sending me all communications since Kate did not read her email. I informed her that I thought it best if Kate resigned. She suggested that she simply go on inactive status. I agreed to that. We still pay her annual dues as well as making a contribution to their annual fund drive, but Kate is no longer involved.

This is a sad story. Kate, who had had several very strong social connections, now found herself without a close friend in Knoxville. I know that she is not the only person with Alzheimer’s who has faced this problem. It can be hard to avoid and requires some initiative and creativity. The good news is I have found ways to address her isolation. I’ll say more about that later.

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

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

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

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

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

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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.

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Reflections on Having a Sitter

It is hard for me to believe, but it has been four months since  introducing a sitter into our lives. I thought about it a long time before making the decision. Then I agonized over the best way to present this to Kate. As it turned out, my worries were unwarranted. Kate accepted the sitter from the first day. She has always been very welcoming and has made comments about how sharp they are, something she says about most people she meets. It has been a relief to see how she responds each time the sitter arrives. Today, for example, I was in the kitchen when the sitter drove into the garage. We chatted briefly. Then I took her back to our bedroom where Kate was working on her iPad. As we entered, I said, “Mary is here, and I am off to the Y. You can do whatever you like. If you wanted you could go to Panera.” At that, Kate’s eyes brightened. She had a big smile on her face as she looked at Mary and said, “We could go to Panera.” So once again, I left without any worries about how she would get along.

There is another aspect to having a sitter that I hadn’t fully anticipated. (I should make it clear that we have two different sitters. One comes every Monday. The other comes Wednesdays and Fridays.)  It still bothers me to leave her. As I suggested in a post two or three weeks ago, I was motivated to engage a sitter to enable me to continue going to the Y, Rotary, attend any meetings that I might have, and take care of any routine errands. I find that sometimes four hours seems very short. That is especially true when I go to the Y and Rotary on Monday. That leaves me only about thirty to forty-five minutes for other things. On Wednesdays, I meet my friend, Mark, for coffee and conversation. He is helping me transfer this journal to a blog. If we meet for an hour, I usually have forty-five minutes before I have to be home. On Friday, however, I don’t have any other standing obligations except the Y. That leaves me with almost two hours. I put that time to good use. I make new entries like this one for my journal and also review older entries to upload to my blog. (I’ll say more about that in a separate post.) While I make good use of the time, I feel the slightest tinge of guilt that I have left Kate in the hands of a sitter when I could be doing this with her at home, Panera, or Barnes & Noble.

At first, I thought I would get over this feeling rather quickly. Now that four months have passed, it hasn’t gone away. In time, I know that it will. In the meantime, I am following the guidance of my less emotional side and taking advantage of some private time that I would not ordinarily have.

I know that many people caring for a loved one with dementia would love to get a break. I would as well if it were not for the fact that Kate has been relatively easy to care for. In that respect, she is very much like my mother who had an undiagnosed form of dementia. As her illness progressed, she never became agitated or aggressive or displayed any of the kinds of behaviors that try the patience of many caregivers. The same was true for Kate’s mother who had vascular dementia. I am not ready to say that Kate will never express any of these problems, but she hasn’t so far.

As Kate declines, I am prepared to increase the amount of time the sitter is here. It is comforting to know that our long term care insurance provides up to 13 hours a day should we need it. That is well below the 12 hours a week that a sitter is with her now. I don’t anticipate increasing that anytime soon. I realize, however, that circumstances can change quickly. When the need arises, I will certainly take advantage of it.

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Kate’s Obviously Having Some Imaginary Conversations

In my earlier post I noted that it appeared that Kate thought she and I had had a prior conversation about the Wisconsin professor for whom she worked while I was a grad student. That was not a unique occurrence; she had another such experience as we drove to dinner tonight. She said, “I’ve always felt comfortable being with you.” It was her tone of voice, not the words themselves, that made believe she was responding to something I had said although I hadn’t said a word. I looked at her but didn’t say anything. I was just puzzled by her comment. Then she said, “I always know that when I am with you that you won’t let anything happen to me.” I agreed.

Both her afternoon and evening comments made me rethink some earlier comments she had made at home. It is as though she is doing a lot of reflecting and/or reminiscing. I often wonder if and what she is thinking during her long moments of silence. Today’s experiences may provide a brief glimpse. I wish I could know and understand more.

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Both of Us Are Adapting

As the year ends, we are experiencing some things that are just like they were a year ago. That is, most of Kate’s symptoms are very similar to a year ago. There are, however, two differences. The first is not surprising, but it bothers me. Her memory is clearly worse. Second, she and I are both adapting pretty well to the changes that we have experienced not only this year but the preceding seven years since her diagnosis. Let me give a quick example that occurred this afternoon.

Apart from our routine daily events, Panera, lunch, and dinner, the only thing on our agenda was a birthday drop-in for a woman with whom we sit at Casa Bella for their musical events. She was 93 yesterday. The drop-in was between 2:00 and 5:00. We returned home from lunch shortly before 2:00. My intention was to be at the party around 3:00 but with no firm time. As we got out of the car, Kate asked, “What can I do?” I told her we would be leaving for the party in about forty minutes and that she could work on her iPad for a while or go outside for a short time before getting dressed for the party. She had forgotten about the party. I had told her multiple times including just before we got home. She chose to go outside. It is like a magnet for her.

I let her stay outside for about thirty minutes. Then I called her in to get dressed. She came in right away, something that is new over the past year or so. I walked to her room with her and showed her some clothes that I had picked out for the party. She liked what I had chosen and started to get ready as I left the room. In a few minutes, I went back to our bedroom where I found her dressed in the same clothes she had been wearing. I mentioned the party and told her she hadn’t put on the clothes I picked out. She had forgotten the party again. She didn’t remember any clothes I had picked out. She followed me back to her room where she had thrown her top on a chair and the pants on the floor. She had put her sweater back in the closet.

This time she put on the clothes I had picked out. More significantly, from the standpoint of a change in her is that she very happily accepted my suggested clothes and put them on. In the distant past, she would have asserted her independence. As the year closes, I find that she commonly accepts my suggested changes in her clothes when I think it appropriate, now. This surely makes things easier for me. As I have noted before, though, this comes at a cost because I know that her increasing dependence is associated with the progression of her Alzheimer’s. I don’t like to see that.

I, too, have adapted over the course of Kate’s illness. I now do a better job of not fretting about her wearing good clothes to work in the yard, or to wear clothes that are somewhat soiled, or to avoid any rigid time constraints. All of these things have helped us handle our situation with a minimum of frustration. I emphasize “minimum.” It would be next to impossible to avoid all frustration. I am glad to say that my sense of frustration is a very minor aspect of my feelings. I find that sadness for Kate and for our relationship is a much bigger emotional issue.

The year has been marked by highs and lows. I haven’t gone back to read my posts from the past few months, but I believe I was in a more upbeat mood several months ago. I sense that as the year closes, I am less upbeat as I consider that the latter stages of her illness appear closer and closer.