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Reflections on Living with Alzheimer’s: Part 2

In my previous post, I talked about our pre-diagnosis experiences and my belief that they have helped us deal with our post-diagnosis experiences with Alzheimer’s. Many other things we have done since the diagnosis have also been valuable.

One is the way we responded at the beginning and continued throughout our journey. We both accepted the diagnosis. We were helpless to change that. Instead, we directed our attention to “What next?” Planning was a critical first step. We talked a lot during the first few weeks. We didn’t arrive at a detailed plan, but we set a goal that has guided us from the beginning to the present time: to enjoy life and each other as long as we were able. We began binging on the activities we had most enjoyed throughout our courtship and marriage.

That included going to more movies and theatrical productions. We took advantage of our local theaters as well as those in three other cities that were within a 2-hour drive from our home. We attended many musical events locally and out of town. We also traveled domestically and internationally.

We made a change in our dining habits. At first, I tried my hand at fixing simple meals and bringing in meals from some of our favorite restaurants. I quickly discovered that I didn’t like fixing meals or cleaning up afterward, so we started eating out for lunch and dinner. That continued until the beginning of the pandemic in March 2020.  We had eaten out more than 6000 times since her diagnosis. In addition to eating out for our daily meals, we went to a local Panera Bread each morning where Kate got a muffin. After lunch, we went home for a break where she rested. Later in the afternoon, we went to the café at Barnes & Noble where we spent an hour or so before going to dinner.

We did all this for convenience and pleasure, but the most important benefit was totally unanticipated. We were never socially isolated. We often ran into friends and acquaintances. We also became better acquainted with the servers and managers of the various establishments as well as other regular customers. Doing all of these things meant we led very active lives. We were living well, and we were achieving our goal of enjoying life and each other.

It wasn’t until 2018 (7 years after Kate’s diagnosis) that I understood why we had gotten along so well. That’s when I read Dementia Handbook by Judy Cornish. She introduced me to the significance of rational and intuitive thought and its relevance for people living with dementia.

Rational thought deals with the kinds of things we learn from our parents, teachers, and many others we encounter. These include the rules of behavior as well as factual knowledge like language, history, math, spelling, names of people, places, things, etc. Intuitive thought involves experiential learning that occurs directly through our senses – touch, taste, smell, sight, and hearing. We put so much emphasis on rational thought that it’s easy to overlook the significance of what we learn experientially. That is probably why so many people believe that all is lost with dementia. That’s a big mistake. As Cornish points out, intuitive thought provides us the ability to enjoy the world around us like music, art, and the company of other people.

When I learned this, I immediately recognized that Kate and I had done just what Cornish suggests. When we focused our attention on enjoying life that led us directly to the things that Kate could appreciate even as her rational thought declined. Music, theater, dining out, travel, as well as time with family and friends were all things she could enjoy.

That is not to say that we could continue all of these things while “Living with Alzheimer’s.” For example, she reached the point at which she could not follow the plot of movies. Interestingly, the last two movies that she really enjoyed were Won’t You Be My Neighbor which was about Mr. Rogers,and RBG, a documentary about Ruth Bader Ginsburg. Both films were filled with humor and touching emotional moments that she could appreciate.

All of these things have enabled us to live joyfully with Alzheimer’s. Best of all, we continue to do so at this late stage of the disease. I firmly believe the improvement Kate has experienced over the past year relates to the attention she receives from the residents and staff of our retirement community. Of course, our primary caregiver and I make sure she gets the same attention at home. This attention is something else that she can enjoy via her intuitive thought/ability.

You might ask, “How long will this last?” I ask myself the same question. The answer is I have no idea. One thing I do know. We will continue to enjoy life and each other as long as we are able.

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Update on In-Home Care

Sometime during the past year, I mentioned my having to get up with Kate during the night. At that time, I was speculating (as I often do) about the future and whether I would feel my greatest need for in-home care would be at night rather than during the day. Fortunately, she hasn’t gotten up at night since then. I wish I could say the same for myself. At the moment, I plan to continue the same schedule of in-home care that I currently have had since starting a year and nine months ago. That involves two different sitters. One comes on Mondays so that I can go to Rotary, the Y, an occasional meeting, and run errands. The other comes on Wednesdays and Fridays. Those are also days for the Y. In addition, I use them to meet friends, run errands, and occasionally take my laptop and/or iPad to Starbucks or Whole Foods to check email or work on my blog.

This schedule has worked out well for me. I still don’t feel the need to add any additional time, but that may be coming. I have just accepted membership on another United Way committee. That makes two. I have also been asked to participate on a panel at a conference sponsored by a chapter of the Alzheimer’s Association in Nashville the last of August. In that case, I will take Kate along with me. The conference sponsors are going to provide someone to help with Kate at lunch and during the panel session. I may explore other such opportunities locally. Unless engagements like that occur during a time I currently have a sitter, I will need to arrange for someone to be with Kate.

I feel good knowing that our long-term care insurance cover 8 hours a day. (I originally thought it was 12.) I am a long way from needing that amount of time, but as Kate declines I realize that could change any time. I feel a sense of security knowing that my commitment to move to a local continuing care retirement community in a year and a half opens other options for me. We are now considered members of the community and can eat there (at our own cost), use the exercise facilities, and attend events. It also includes access to their adult day care program, assisted living, skilled nursing, and memory care should we need them.

So at the moment, I feel I am well-covered with respect for Kate’s care. That’s a good feeling.

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Remembering Texas

Although Kate has always valued her Texas roots, it has never been as significant as it has been in recent years. Part, maybe most, of this feeling for her home state is tied to our reflections of the past as we get to our senior years. I know of lots people who find themselves reconnecting with friends from their childhood and sharing old memories of their time together. I suspect that Kate’s affection for Texas also relates to her Alzheimer’s. Like other people with dementia, she lost her short-term memory quickly. Now she retains only long-term memory, and most of that is gone as well. The fact that she is a Texan has stuck with her though she sometimes forgets her birthplace and has to ask me.

After returning from a trip to Texas several years ago, Kate’s feeling for the state got a significant boost. It wasn’t long after we were home that I discovered she thought we had discussed and decided that we were moving back. At first, I thought I was the only one she said anything to. Soon friends were asking me about our move. At the time, I didn’t want to burst her bubble, but I also didn’t want to reinforce her thinking. I supported her desire and explained that I would enjoy living in Texas as well. I also told her it would be a while before we could make the move because there were a lot of things we had to do to get ready. I was hoping that her memory of a move would drift away like so many other things.

I was wrong, but I was successful in getting her to think the move would be sometime in the future. Gradually she said less and less about a move. During the past couple of years, she has rarely said anything about it. Now it is coming back. This time she is expressing it as a desire to live in Texas, not something we have decided to do.

I have been quite interested in how she has brought it up. It almost seems like a calculated way to spark my interest. For a while, she would say something like, “I know we aren’t planning to move to Texas, but do you think that could happen?” In the past few days, she has also gently brought up the subject. Yesterday afternoon at Barnes & Noble, she asked where we were. When I told her, she said, “So we’re not in Texas?” I told her we were in Tennessee. She paused and then said, “Where do you think we will end up?”

I told her that depended on a lot of things, that we might stay right here in Knoxville. I explained that we were happy here, like our home, and were comfortable getting around the city which offered a lot of the things to do. Then I added that a lot might depend on our needs as we got older. I suggested that if our needs became significantly greater, we might move to Texas. I reminded her that our son Kevin has spent his whole career working with seniors and has access to all the resources that seniors need. She was pleased to hear that.

I must have been bolstered by her response because I mentioned a possible trip to Texas. Our granddaughter graduates from high school in June. I would really like for us to attend, but I have felt it is very unlikely. I considered our trip to Texas for Thanksgiving to have been our last visit. At the moment, I am keeping an open mind though I still think it is doubtful. One of my memories of our last visit was that she didn’t respond to being in Texas the way I expected. It didn’t seem to mean anything. She didn’t recognize anything and never knew where we were. I am torn now and will probably be the same way when I have to make a commitment to go or stay here. I definitely don’t want to deprive her of one more trip home. It’s just too early for me to make that decision.

There is one thing in the back of my mind that might tip the scale. It’s the apocryphal story of a man who pays daily visits to the nursing home to see his wife who doesn’t remember him. Someone asks, “Why do you visit everyday if she can’t remember you?” He answers, “Because I remember her.” As I consider that story, I think that even if she couldn’t full appreciate the trip, I would know that I brought her back home one last time for a special moment with family.

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Predicting the Future: Part 2

Since writing Part 1 the other day, I had a conversation with someone who asked what I planned to do in the long run with respect to Kate’s care. I told him that was a good question and gave him the following answer.

My desire has been and still is to keep her at home. There are several things that have influenced me to feel that way. First and foremost is the fact that three of our four parents remained at home. After Kate’s father had a stroke, he required round-the-clock care. Kate’s mother learned of someone who could move into their home and provide that care. Her father only lived four months after the stroke. That arrangement worked well. Her mother had a series of TIAs that led to vascular dementia. That also led to the need for 24/7 care. Through their mother’s friends, Kate and her brother, located someone who moved in with her and supervised three shifts of people who provided the needed care. After a year or two, the friend who had moved in to serve as a supervisor had her own health issues. That is when Kate and I brought her to Knoxville to live with us. She lived with us five years and three months with round-the-clock care provided by shifts of CNAs we engaged through an agency.

During this same period of time, my mother was diagnosed with dementia. My dad did not have the same financial resources as Kate’s parents, nor did he have the inclination to have help in their apartment. My brother and I tried any number of times to engage in-home care or to move them to an assisted living facility. Dad tried in-home care but didn’t like it. He ended up caring for my mother at home the entire time. The only help he did accept was an adult day care center. He dropped Mom off every Wednesday morning so that he could attend his Kiwanis meeting and shop for groceries. I regularly brought in meals the last year or two. Before that Dad shopped and cooked on his own. I have a new-found respect for him now. He said next to nothing about any problems he had taking care of her. I was able, however, to observe the toll it took on him. I was quite relieved to discover that he bounced back after her death. He even had a significant other who developed vascular dementia and cared for her until her death. Dad lived 11 years after my mom died and 4 years after his significant other died. He was quite a man and caregiver.

With that background, I was naturally inclined to keep Kate at home. If Dad could do it, I could as well. Besides we have long-term health insurance that will cover a large portion of the financial costs. Dad didn’t.

Since Kate’s diagnosis, I have learned much more about dementia and caregiving. I’ve read a lot of books written by caregivers. I have also followed several different forums for caregivers of PWD. It has also been almost 7 years and 8 months since the diagnosis. I’ve had vastly more personal experience as a caregiver than I had with our parents. All of that gives me a better grasp of the challenges to be faced than I did before. For quite a few reasons I have mentioned previously, I’ve had the good fortune of having a load that is  lighter than that of many people in my shoes.

That leads me to an important conclusion. I don’t believe there is one approach to caregiving that works for everyone. I believe that each caregiver has to assess the numerous ways to provide care. What are the pros and cons of care at home? Care at a facility of some type? Having a good idea of the options that are available will help the caregiver and family determine what is most desirable.

Then it is time to get practical. Do we have the financial resources available to have most or all of the options? (That rarely happens.) How well-suited am I to play the role of a hands-on caregiver? If I want to bring caregivers into the home, should I go through an agency or try to hire and manage caregivers? In either case, what kind of manager would I make? Am I ready to have people in the home 24 hours every day. What about my own family situation? What other responsibilities do I have? Am I employed now, or will I have to continue working to meet expenses?

Caregivers also need to be honest with themselves concerning their own personalities and those of the person needing care. Some people are natural caregivers. Others are not. Most of us fall somewhere in between. I continually ask myself the questions above. So where does that leave me? My desire has always been to keep Kate at home for the the entire time. Am I beginning to have reservations as she enters the final stages of her illness?

My current answer to those questions is that I am still optimistic about staying the course. Nothing new has happened to change my mind. On the other hand, I continue to keep all my options open. I do that because I don’t know what lies ahead. Kate has been very easy to care for up to now. Based on the experience with my mother and Kate’s mother who were also easy to care for, I believe Kate’s attitudes and behavior will continue to be very much like theirs. I should also add that I have never thought of providing all of her direct care myself. I have always intended to work through an agency who will provide 24/7 care. Thus, I am optimistic, but I believe I will always keep an open mind concerning what is best at the time.

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Looking Ahead and Making Changes

During the course of Kate’s illness, I’ve always tried to anticipate the future and make necessary preparations. With her changes over the past few months, I’ve been doing a few things that I have held off for some time. The biggest one involves the yard. A year or two after Kate began her “extreme pruning” activity, I began to wonder about the long term impact it would have on the shrubbery. At first, I thought it might be beneficial, but it would come at a time when she could no longer appreciate it. It wasn’t long after that when I suspected the shrubs might be permanently damaged. At the time, she had three things that occupied her time – pruning (“pulling leaves”), editing photos for a photo book on her computer, and working jigsaw puzzles on her iPad. Pulling leaves was her major activity when weather permitted. She could spend as long as 6-8 hours a day in the yard. Because she seemed to enjoy it so much, I made a conscious decision to let her pull leaves as much as she wanted even if it meant having to replace the shrubbery.

When this past spring arrived, it became clear that most, if not all, of the shrubs would have to be replaced. I didn’t want to move too quickly. I thought it might bother Kate. I didn’t want her to feel guilty. I realized she might never make the connection between her pruning and the demise of her shrubs. On the other hand, I didn’t want to risk it. Two or three months ago, I hired someone to start the project. I wanted it to be gradual so that Kate wouldn’t notice. He began by cleaning out the weeds. That’s been a big job. He is still working on that. He has another fulltime job, so he only works on Saturday. Along the way he has taken out four or five good sized shrubs. There are probably another twenty that will have to go. I think we should have the clean up done in the fall. Then we will look at planting new shrubs.

I have been surprised that Kate has had no reaction at all. She has seen the man and his wife working in the shrubs and hasn’t expressed either interest or irritation that I’ve initiated this without consulting with her. In addition to the cleaning out the flower beds, I asked them to use Kate’s existing pots for plants on our patio. I told Kate this was an anniversary present. I had hoped that she might take an interest and enjoy tending to potted plants as she has done in the past. This was an idea that flopped. It turns out that I am the one who tends to them. I really hadn’t wanted that, but that may be good therapy for me

For a long time, I have felt the need to do some serious work to the inside and outside of the house itself. I recently had all of the windows replaced. The next job is painting the outside. I’m going to wait until fall for that.

Our housekeeper passed away in April. Her daughter filled in for her until the end of July. Through a friend I found someone else. She started yesterday with a deep cleaning of the entire inside of the house. She brought a helper, and the two of them worked twelve hours. Like most people, we’ve accumulated a lot of “stuff” that we never use. I’ve spoken with her about helping me clean out a lot of these things. Chief among those are clothes that Kate will never wear again. Most of these are too small for her now. I’m going to feel better when we get organized again.

These changes are a direct result of the changes in Kate’s condition. I wanted to allow her to continue to be the one in charge of the house. That has been her role in the past. Of course, I recognize that I have gradually come to be the one to assume that role, but I haven’t wanted to do anything that I thought she might not like. At this point, I don’t think she will even notice much of what is done. A couple of years ago, I took out the tall entertainment center and the 42-inch TV in our bedroom and replaced it with a much lower cabinet with a 65-inch TV on top. I don’t think she ever realized the change. She never commented on it. By now, of course, she would not remember at all.

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Memory is fading away.

As you have probably detected from my recent posts, Kate’s world is changing. Its getting smaller and smaller. As it does, mine changes as well. I am taking charge of things that just a short time ago, she was doing for herself.
This morning I had an example. She walked into the kitchen where I was working on my computer. She was dressed for the day. I got up to greet her. She said, “Don’t get too close. I haven’t brushed my teeth.” I said, “Well, you could do that now while I get your pills ready for you.” She said, “Where can I find the toothpaste?” I told her there should be toothpaste and toothbrushes in each of the bathrooms. Then I said, “Let’s go to our bathroom, and I’ll show you.” This was a first. She has been brushing her teeth in all three of the bathrooms for years. This goes along with her forgetting how to get ice out of the dispenser of the refrigerator or locating the cabinet that keeps her cups that she takes with her when we go to places like Panera.

When we got to the bathroom, she asked me to look at her top to see if it was on backwards. It was, and she started to take it off. I left the room. A moment later, she called for me. When I got there, she was tangled up in her top. She said, “Can you help me?” I took the top and identified the label in the back and then held it up for her to put arms into the sleeves. She took over from there. This was another first. She does have one long night gown that I have had to help her with several times, but this was an ordinary top similar to all the others she wears. Getting into her night clothes is beginning to be a challenge as well. It is not uncommon for her to start to put on her gown and then put on the clothes she was just wearing.

She is also being more careful to ask for my hand when going up or down curbs and stairs. She has tried to retain her independence with respect to that for a long time. She used to be offended when I tried to help her.

Yesterday she asked me more questions than usual. They were almost all the same ones I hear regularly. The difference was that they were repeated so often during the day. They mostly related to the names of her parents, my parents, and our children. Last night she again picked up the photobook her brother Ken had given her in May. She enjoyed it as much as the first time she had looked at it.

Although she doesn’t express any concern or frustration with these changes, the fact that she continues to ask and to look at her photobooks seems like a serious effort to retain some control of her life. I told her the other day that I would be happy to write down the names of our parents, children, and grandchildren as well as a few things like how long we have been married, places we have lived, and a few of the special things we have done during our marriage. She seemed to like the idea, and I have started with a few of the basics.

When I see changes like these, I always wonder about the future. I always have potential plans for things that may or may not come to pass. One of those has been another possible trip to Chautauqua. Last year I was convinced that going this year would be out of the question. More recently, I have thought that we might be able to go for just a few days rather than staying a full week. I have just about decided to stick with my original plan and not go.

This is our year to have Thanksgiving with Kevin and his family in Lubbock and Christmas with Jesse and her family in Memphis. It is too early to make a decision on either one of these. Right now I intend to make both trips, but I will have to see how Kate is doing as we get closer to the holiday season.

I think we should be able to continue day trips to Nashville for the foreseeable future. I might even consider an overnight trip to either Asheville. At the moment, I believe it is best to continue doing what we have done in the past – take it one day at a time.

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Thinking About Long Term Care

Yesterday, one of the people I follow on Twitter posted something that caught my attention. She made the point that the decision about the best place to spend one’s senior years is a matter of personal choice. I share her opinion. What is best involves one’s personal preferences as well as the situation in which one finds herself. The research shows that seniors overwhelmingly prefer to remain in their own homes, but circumstances can make that impossible. As with so many things, “One size does not fit all.”

Kate and I have experienced that with our own parents. After her father’s stroke, Kate’s mother wanted to bring him back home. She discovered a man who had retired and had started providing in-home care. Although he was married, he moved into their home and provided 24/7 care. He was able to get away to run errands and visit with his wife who sometimes came to Kate’s parents’ home to see her husband. It was a unique situation that worked well.

A few years later, Kate’s mother had a stroke. In that case, she had a close church friend who served as a personal assistant for her mother. She knew about a woman that was retired and looking for a place to live. Kate, her brother,  and the assistant arranged for the woman to move into her mother’s house and serve as a manager of several caregivers who provided 24/7 care. That worked well until the manager developed her own health issues. At that point, Kate, her brother, and I decided to bring her mother to Knoxville.

Kate contacted a friend whose husband had recently passed away and asked her about the help she had used. Kate called the agency and arranged for five or six caregivers who provided 24/7 care for her mother in our home for almost 5 ½ years. Periodically, Kate and I were able to get away. When we did, her brother Ken came to Knoxville and stayed until we returned. That turned out to be a terrific arrangement for her mother and for us. Until the very end, she came to the table three meals each day. Although she was mostly non-communicative for most of that time, she was able to live in a normal home environment. We were glad to have her.

My mother had dementia. My father cared for her at home the entire time. My brother and I tried our best to get help for him. At one point, he accepted, but that didn’t last long. It really bothered him that much of the time the caregiver was sitting around watching TV or reading. He did use a day care center where he left my mother every Wednesday for four hours while he attended his Kiwanis meeting and did his grocery shopping. He was still driving, so he and my mother were not restricted to the house. Even in the latest stages of her illness, he took her with him whenever he went out. He was 89 when she died. She was wheelchair bound for the last one or two years. I was amazed that he would and could take her out so much. Her care took its toll on him, but it was what he wanted. He bounced back after her death and lived to celebrate his 100th birthday.

Seven years after my mother died, Dad had a stroke that affected his mobility and, for a while, his swallowing. He spent the balance of his life, almost three and a half years, in a skilled nursing facility. Although there were many things we didn’t like about that option for him, it seemed like the right thing. Even now I believe it was the best option. The major downside was that he was more mentally alert than 95% of the other residents. I tried to compensate for that by visiting him every day. In addition, he was a very outgoing person and had attracted a lot of younger friends who visited him periodically. He had been very active on email. That led me to create a distribution list of more than fifty friends and family with whom he had been communicating a long time. I wrote frequent emails using his email address and his name. Under his name I wrote, “And Scribe.” This brought him lots of responses that I read to him when I visited each day.

Given this experience, you might ask what Kate and I have planned for our future. The short answer is that we are like most seniors in that our preference is to remain at home if that is possible. We have long term health insurance that will take care of a substantial portion of the expenses associated with in-home care. Note that I said, “if that is possible.” I don’t know what lies ahead. We are familiar with the options available to us in the Knoxville area. There are at least two or three continuing care communities that I would consider if that seemed appropriate. There are also assisted living facilities, but I doubt that I would consider them, especially knowing that Kate is likely to need more personal care than they typically provide.

Kate and I were glad to have played a significant role in the care for all four of our parents, but we both agreed long ago that we would do what we can to minimize our children’s responsibilities. That could even involve a move from Knoxville to Texas or Virginia to make things easier for them. At the moment, I don’t see a move on the horizon, but I am not closing any of the possible options. As our situation changes, the most desirable options will likely change as well.

When I read the tweet that prompted this essay, I responded with my own tweet that said, “The matter of where to live for seniors is a big issue. Wouldn’t it be nice if seniors and their children worked together to make the appropriate choice?” I believe that’s a good idea. That is especially true in our case since our son is in the elder care business.

I’ve tried to keep both children abreast of our situation. This journal alone should do that. I have also made sure they are fully informed of our financial situation, something that most parents don’t think about in advance. In addition, several years ago, I put together a list of our doctors, attorney, accountant, insurance agent, banking information and medications. I am in the process of revising that information right now. We also have arranged the appropriate powers of attorney for them should I become incapacitated. I know our children are bound to discover some things that I have overlooked, but I believe our openness will make our children’s lives easier than they would have been if we hadn’t taken the proper steps to prepare for the future.

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Good Visit with the Greeleys

Yesterday we went to Nashville for a visit with Greeleys. We arrived around 11:30. Jan prepared lunch for us followed a little later by Ben and Jerry’s ice cream. We had a great afternoon of conversation on many topics. It was refreshing that no mention was made of our current president who dominates the news these days.

As I probably have mentioned, Kate’s relationship with Scott extends back to the cradle. In fact, their mothers were good friends and pregnant at the same time. Although they didn’t live in the same town while growing up, their families maintained periodic contact during that time. As I understand it, the parents always thought it would be nice if the two of them became a couple. It just never happened.

Scott has, however, remained a very special friend to her. We have always had good visits with Greeleys. With this background in mind, I was eager for another visit. I was not disappointed. As it turned out, this was not just a good visit with them but another in a succession of good visits with friends in the past two weeks. Each of the couples with whom we visited are among our regular friends with whom we had had visits over a long period of time. It is a bit unusual, however, for us to visit so many of them in such a concentrated period of time. This was deliberate on my part. As I have noticed Kate’s transition to a time when her memory is even weaker than now, I have wanted to maximize her contact with our closest friends.

We went to dinner at Olive Garden before coming home. The Greeleys got to be a part of our lives at the end of the meal. Kate went to the restroom before we hit the road. I got up and went far enough with her that she could see the restroom door. Then I stood up beside our booth which enabled me to see Kate when she came out. Jan and Scott both got up and stood with me. As we chatted, we were facing the door to the restroom. It took a while for Kate to come out. Jan asked if she should go and check on her. I told her that Kate often takes a while and even mentioned waiting as long as twenty minutes for her to come out of the restroom on another occasion. We waited a little longer, and I conceded to Jan’s interest in checking on her. Jan came back and indicated that Kate wasn’t there. When she said that, I assumed she would be at the front of the restaurant waiting for us. The three of us headed there where we saw her seated at the bar drinking a glass of water. When she saw me, she calmly said, “I’m glad to see you.” I said, “I’m sorry. I let you slip by me.” That was all that was said. She got up from her chair. We walked over to the Greeleys and walked to the car. It was a good illustration of just how easily I can lose her. In this instance, we were in a place where we were not likely to experience any serious consequences; however, it reinforces my concern about traveling with her. On our previous trip to Lubbock, I got the locations of all of their family restrooms in the Atlanta airport so that we could use them on a future trip.

One week from today, we fly to Buffalo for our annual visit to Chautauqua, and no doubt our last. I will be especially attentive to how things go on the trip, both the travel portion and the time at Chautauqua. This will be especially influential in my plans for a trip to Fort Worth in mid-October. At the moment, I am doubtful that we will make it. I will make a concerted effort to do so as this would be Kate’s last trip home. In addition, it will be special because or grandson, Brian, will be a freshman at TCU this year. His family plans to come over from Lubbock. Kate’s brother and his wife also plan to come from San Angelo. It will be a special family time.

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Event planning

As a caregiver, I sometimes feel that I am an event planner. As we begin this new year, I have been reflecting on ways to address Kate’s boredom. That has led me to take several steps this week. One of our church friends who has been in a memory care unit for the past 2-3 years had a birthday earlier this week. We have not been to see her in quite a while because I was concerned about how Kate would react knowing that she (Kate) is traveling the same journey as our friend. The visit went very well. Kate made no mention of any reaction to her condition. She had done so on the previous visit, but she hadn’t given any sign of being disturbed by how she was doing. This time she didn’t say anything except in response to my comment about being glad that we made the visit.

The next day we visited two of my Sunday school class members who have not been able to attend for as long as three years. Since our class disbanded in December, I wanted to deliver a couple of remembrances for each of them. One was a list of those who were members of the class when we ended (both those who were active and inactive) along with an acrylic square with the person’s name, the class name, and the name of our church on it. The other was a list of all the deceased members of the class that I a aware of. It totals 95. I am sure there are some that I have missed. I thought it might be a good outing for Kate to go with me. When I asked, she gladly accepted. We had an hour-long visit with one of the members. She is 93 and in far better shape than I realized. The other visit was much shorter. This person is also in a memory unit. She knew us the last time we visited six months or so ago. She did not this time. She was quite confused. We left as they were preparing for dinner. Once again, Kate made no comment that would indicate this was a problem for her. I was relieved. It makes me think that we may be able to do it again though I am going to wait a while.

There are still three other class members I need to visit. I’ll try to do that soon
I have also made plans for us to attend the last performance of Ringling Brothers circus when it is here next week. We are taking a church secretary and her daughter who have often looked after Kate’s plants while we are traveling. In addition, I have booked a hotel room in Asheville for Memorial Day weekend. This coincides with our 54th anniversary and is the time we usually attend Asheville. Our church choir is having a fundraiser on February 10. It will be a Italian dinner with music and a silent auction. I’ve put that on our calendar. The next evening Renee Fleming will give a concert  in Nashville. I am planning to get tickets to that event today or tomorrow. I have already contacted our friends, the Greeleys, in Nashville to see if they would like to join us or a least get together earlier in the day for lunch.

Yesterday I also called someone at the Alzheimer’s Association. I have spoken with her before about locating a support group for people with dementia (PWD). She still doesn’t know of anything but expressed a willingness to help me put one together. After speaking with her, I called a local senior center where caregivers can get a break and/or support. I thought maybe they might have something for PWD as well. It turns out that they do. They have some activities for PWD while the caregivers are in a support group. I spoke with the director who sent me a calendar with their activities. She invited me to drop by at any time just to look around. They have a café where caregivers and their loved ones can relax. I noticed on their calendar that they have a support group for caregivers and care receivers with early onset dementia. It meets the first and third Tuesday of each month. This may be our best bet yet. I am eager to check it out.

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Couldn’t Sleep

Kate and I got to bed early last night (8:45). I knew I would wake up early. I just didn’t know it would be 3:30. I tried to get back to sleep but my mind kept thinking about Kate’s condition and the problem of her clothes and getting ready to go places. It makes me think that next summer life will be different for us. Since her diagnosis January 21, 2011, I have wondered how much time we have left when we can live a reasonably normal life. I am now seeing signs of the beginning of the end. I must admit that it frightens me.

We went in the pool around 6:30 last night. As we talked, she mentioned wanting to go to Ireland. We discussed doing that in early June 2015. Reflecting on that now, I am not at all sure that will work. If we go with a group, we will face the problem of needing to meet daily schedules that are likely to cause more panic attacks for her. If we go on our own, we face the challenges of travel from one location to another as I don’t think we can find a single location that will let us take day trips to all the places we would want to see. Being realistic, of course, it would be another trip like New Zealand in that we would go without any intention of seeing or doing everything. We could just find a place and stay there. I will do my research and come up with something.

We have often talked about staying at Chautauqua for two weeks rather than just one. Next summer could be the time. I had better look into that soon in order to get the accommodations.

I finally got up at 4:30. I figured that I could accomplish something rather than just lying in bed. It is now 5:05; so it is not far different from a rather normal waking time for me. I will probably shave and eat breakfast and then go for a walk around 6:00. That will still give me time to read the paper before we go to church.