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Everyday Experiences

After we walked out of Applebee’s where we had lunch today, Kate asked, “What is this place?” I told her, and she said, “I knew that. . . . It just wouldn’t come to me.” Then she pointed to the sign on the building. I said, “I have that same experience sometimes. It’s funny how that happens.”

As we turned onto our street, she asked if she could work in the yard. I told her, “That would be fine. I know you will enjoy that.” She gave me a surprised look and asked, “Clippers?” Again, I told her yes. She gave me another look of surprise. I smiled at her and said, “I’m just big-hearted today.” She said, “Well, that is true.”

These are just little incidents, but I mention them because I think they typify the way we relate to each other. I do my best to keep our conversation light-hearted so as not to hurt her or make her feel bad in any way. I can’t really be sure if it works. I do know that this kind of experience is much more common than moments of irritation on the part of either one of us.

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Enjoying The Christmas Season

Kate and I returned from my doctor’s appointment almost two hours before we were to leave for Jazz Night at Casa Bella. She asked (with hand signals) if she could work in the yard. I told her she could. Then she asked (verbally), “Where should I start? In the front or in the back?” She said she hadn’t worked in the back as much; so I said, “Well, why don’t you start there?” As often happens, she came inside to the bathroom and then went to the front yard, forgetting entirely that she was going to the back. This is a regular pattern. She does work more in the front. I suspect that habit leads her to do it each time she goes out.

I called her inside in plenty of time to get ready to go out. I suggested that she change her clothes and told her I would pick out something for her. She accepted that very naturally without a complaint at all. I picked out a red sweater and a pair of black pants and put them on the bed in her room. She liked the selection. I left the room for her to change. A little while later, she came out wearing the same clothes she had been wearing before. I reminded her of the clothes I had picked out for her. She asked where they were. I took her back to her room and pointed them out. This time she got it. What makes this incident worth pointing out is that she was so accepting of my suggestions and help. This makes things easier for me, but as I always say, it signals further decline in her condition.

The evening at Casa Bella was everything I could have hoped for. The food was good, and the musicians excellent. It was a program with a lot of Christmas music. This was our fourth musical program in the past two weeks. We are definitely enjoying the season.

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My Doctor’s Visit

Yesterday I had a routine appointment with my doctor. Since this was a day when I wasn’t covered with a sitter, I took Kate along with me. This was the second time I have done so. As with other things lately, she didn’t ask why I was taking her. I simply told her I didn’t want to leave her at home.

It was an interesting visit. For the first time, I was given a memory test. This was something initiated by Medicare. I can easily understand the need for it, but I was taken aback by being asked to take it. I had taken Kate into the examination room with me and was curious to see how she might respond. She heard the nurse explain the procedure, but she continued working the puzzle on her iPad. This was a much abbreviated test compared to the ones Kate has taken. It involved two simple questions that I have heard quite a few times. First, she gave me three words to remember. After she said them, she asked me to repeat them to her. Then she asked me to draw the face of a clock followed by drawing where the hands would be for 11:10. That was it. Before she left the room, she asked me to tell her the three words again. I am happy to report that I passed with flying colors.

When the doctor came in, I commented on my taking the test. I told him I could understand the reason for it but felt it was a little premature in my case. Then he launched into quite a lengthy response. He pointed out how easy it is for someone to cover so as to keep others from recognizing their memory problems. Once again, I was looking to see how Kate was responding. I saw her smile, but she continued with her iPad.

That led to doctor to talk about words for various things in room, for example, his lab coat, the lapel on his coat, a pin on his lapel, etc. At one point, he said something that involved English grammar. That is when Kate spoke up and was perfectly correct about her observation. It was an interesting example of what the psychologist had told us during Kate’s testing for Alzheimer’s. She said Kate’s greatest weaknesses would be the things she would lose first, and she would retain her greatest strengths the longest. I would say the psychologist was right on target, at least for Kate.

I had told my doctor about Kate’s diagnosis long ago and have mentioned it to him on subsequent occasions; however, I still wondered if he remembered. He spoke very naturally about Alzheimer’s and it symptoms. It was something he dwelt on, but it was directly related to the memory test I had taken as well as my own remarks about it. Kate never said anything to suggest she even heard any of this. She did, however, pick on the grammatical issue. It reminds me of something she says to me occasionally when I am surprised at something she remembers: “Don’t count me out yet.”

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Health Update

Kate and I have been fortunate not to have had any significant illnesses since her diagnosis. Almost two weeks ago, we both got colds. They were the first this season and very mild at that. Neither of us felt bad. The primary symptoms were a post-nasal drip and a mild sore throat for me. Kate had no visible signs of her illness except for a periodic cough. As of today, we are almost completely well.

The most troublesome health issue for Kate has been her eyesight. We have been monitoring the growth of her cataracts for the past two to three years. Monday afternoon she had her latest ophthalmologist’s appointment. She is now ready for surgery to remove the cataract in Kate’s left eye. For the first time, she was tested as “legally blind” in that eye. Situations like this require consideration of the value of the surgery versus putting her through the process. For me, it was not a difficult decision. We scheduled her surgery for January 23. For some time I had been concerned about her insecurity when she walks up or down steps. This is especially true at night when she walks much like some who is blind. I have also noticed her having difficulty looking at photos of family and friends. My only question has been how much of this is a function of her AD and how much is her eyes. There is no way to determine the future, but I felt being able to see better would improve her quality of life.

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Enjoying Time With Long-Time Friends

Two days ago I mentioned that I had received a call from Jan and Scott Greeley while we were in Barnes & Noble. They were in town for the memorial service of a friend and were to let us know when they were ready for lunch. We met them and had a great time catching up on things they were doing. They are among our most traveled friends. Recently they returned from trip to Costa Rica. Scott and Kate have been friends their whole lives. Their mothers were friends and were pregnant at the same time. I understand from Kate that the two mothers occasionally tried to encourage a more serious relationship. By the time that might have happened, Scott’s family had moved to Midland, Texas. The two families saw one another from time to time, and they both ended up at TCU where Kate and I met.

I say all this to convey that Scott is someone Kate has known well and liked her entire life. Since they have lived in Nashville as long as we have lived in Knoxville, we have been able to get together several times a year, especially during the past few years. So when I told Kate, that the call was from the Greeleys and that we would be leaving to meet them for lunch, I expected to see her eyes light up. Instead, she said, “Tell me who they are again.” I explained and thought she understood though she still expressed no excitement. I put away my computer in preparation for us to leave. I expected her to close her iPad. Instead, she told me she wanted to finish her puzzle before going. It turned out that she was not just on the last couple of pieces but several. It took her another five minutes or so to finish. Then we left. For me, her nonchalant response to our meeting the Greeleys was a significant sign of how much her memory is deteriorating. It is one more of many little signs that tell me we are moving more quickly to another stage of her disease.

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The Value of Social Contact

Occasionally, I have the impression that there are some people who wonder why we always eat out for lunch and dinner. I suspect there are several things that make them feel this way. It is cheaper to eat at home. It is also easier to eat nutritionally at home. There is just something nice about eating in the comfort of your own home, especially in bad weather. I acknowledge all of these things, and I am sure one could argue for more benefits. On the other hand, the longer we have done this, the stronger my belief is that eating out has been one of the wisest decisions we have made. It has little or nothing to do with the objective of eating a meal. It is for the social contact that it has provided us. Take today’s lunch for example.

We ate at Carla’s Trattoria today as we do almost every Tuesday. We now know the hostess as well as several of the servers. Josh is our regular server. When he is not there, we ask for Morgan, his girl friend. That is what we did today. Since they are familiar with us, we have brief conversations depending on how busy they are. Mike knows that we come in on Tuesday and had told Morgan to take good care of us. Near the end of the meal, she asked us if we had tried their cherry gelato. We told her we had. Then she let us know she was bringing a serving to us “on the house.” Kate and I both love desserts, and this was good gelato.

Then a couple of women we know dropped by our table to say hello. One is a member of our music club. The other is the wife of a retired Lutheran bishop who is a member of my Rotary club. We had a nice chat. Then as we walked outside we bumped into a young couple who have recently joined our church. The husband is a past president of our Rotary club. We talked briefly before getting in the car and returning to the house.

This is a rather typical mealtime experience. It wasn’t the meals we had or the gelato that made this a happy time for us. It was the engagement with other people. I can’t say that we always see people we know when we eat out although it does occur frequently. In a city the size of Knoxville, it is hard to go many places without seeing at least one person you know. Even when we don’t know other customers, we do know the servers and often the managers or owners of the restaurants.

I don’t mean to suggest that eating out is something I would necessarily recommend to other people who are living with Alzheimer’s. It isn’t practical for everyone. Kate and I both enjoy being socially active. We are both energized by being with other people. That is especially true for me. My own experience and what I have heard from others leads me to think that it is very easy for a couple in our shoes to become socially isolated. I think that when people are aware that a couple is going through a disease like this one, they tend to be unsure how to respond. This can lead toward fewer invitations out. In addition, a couple like us may accept fewer invitations to events that involve large crowds that can be intimidating to the person with dementia. I certainly see that with Kate.

Kate has faced a special problem. Since we moved to Knoxville forty-six years ago, she has had four very close friends. One of them died in an accident in the mid-1980s. Two others moved out of state. The fourth, Ellen, had a stroke two years ago this past August. Since then she has lived in an assisted living facility in Nashville where she was visiting her daughter when she had the stroke. We try to get there about once a month except for the two to three months after her stroke and another four months after she suffered a couple of seizures earlier this year. She is now in memory care in the early stages of vascular dementia. Ellen is still the only person with whom Kate has shared the news of her diagnosis. They were very close. Losing her last close friend here in Knoxville has had quite an impact on Kate.

For these reasons, the social contact we have by eating out has been very supportive for both of us. As I suggested above, the value of it has far exceeded anything I could have imagined when we began this practice. It has really enhanced the quality of our lives.

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Working So Hard To Remember

Kate and I finished a very nice lunch and had just gotten in the car when she asked, “Where are we?” I asked if she meant the city. She said yes. I told her we were in Knoxville. She said, “So we are still at home.” This is not the first such experience. I know I have reported on occurrences like this when we are traveling. I can’t recall if she has ever asked that when we are here at home. This was the first of several things she said on the way home.

Not long after we left the restaurant and out of the blue, she said, “Katherine Rose,” her mother’s first and middle names. I said, “That’s right.” Then she said, “Katherine Rose Benson,” her mother’s maiden name. A few minutes later, she said, “Fort Benning.” Then she said, “That’s where my daddy was based.” Once again, I told her she was right. She went on to say, “Sometimes the names won’t come to me, but if I think a minute, they do.”

I am not sure what was prompting this, but I am confident that she recognizes her difficulty remembering things that she used to know so well. I also know that she checks the names of people and places with me quite a bit, not just when we are about to see someone. I suspect that she spends some time rehearsing, trying to cement the names in her brain. She does not appear to sense that her AD is causing her memory problems. I am certain that is true for other things that are not directly related to her memory. This represents a distinctly different stage of her illness. She knows that she has AD, but she seems not to know what that means or the symptoms associated with it. At times, I feel like telling her, but I always come back to what I think is best for her. She is happy. It serves no purpose to call attention to her illness at this point. I don’t anticipate changing my mind on this decision.

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An Experience With Ladies’ Intimate Apparel

Kate and I are now at Barnes & Noble where we are awaiting a call from Jan and Scott Greeley, our long-time friends who live in Nashville. They are in town for the memorial service for a friend. We are going to meet them for lunch after the service. Since my last post, we dropped by the bank to get some cash and came over to Belk’s to buy Kate a new bra. For almost the entire time since her diagnosis, we have faced a number of issues involving clothing. Some of those have been partially resolved, but there are always new ones. Here is one that occurred about 45 minutes ago.

I should start by saying that my knowledge of women’s apparel has never been good. That is especially true when it comes to bras. Today was not my first experience shopping for them, but it was the most challenging one. A writer for a situation comedy could have a field day describing what transpired. It could make for quite a funny episode. I, on the other hand, didn’t take it that way at all. For me, it represents one more sign of how far Kate is on this journey. Thus, I see more sadness than humor.

Today, perhaps all week, Belk is having a sale on all their bras. They are fully stocked for the occasion. In some ways that might make it a good opportunity to make a purchase. Instead, I found it overwhelming. Despite the store’s best efforts to have things in order, I could not identify a consistent pattern to the way they were arranged. I know it must have been overwhelming for Kate. She didn’t even make an effort to look for anything. She trusted and depended on me for that.

Finally, I picked out what I thought was the correct size. I have done this at least twice before, once at Belk’s and once through Amazon. It turns out that the size I bought last time must not be the right one now. Kate tried on at least five different ones without finding the right fit. It took her quite a while to try them on. When she came out after trying the first two, she couldn’t tell me much except “they didn’t fit.” Then I went back for a couple more with the same result. Finally, I suggested that I go into the fitting room with her. She thought that was a good thing. After looking at the way this fit, I felt it was still too tight. I suggested we try to get something through Amazon. It would be easier than picking through all the items hanging on the racks.

I should also mention that each time Kate came out of the fitting room she had put on the two tops she was wearing. The problem was that she kept putting them on backwards. One time she left one of them in the fitting room. She is getting so very confused, and it is very sad to see. These are the kinds of things that make me pessimistic about the upcoming year.

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Looking Ahead

It is often said that “it’s good to live in the moment.” I believe that. I believe that Kate and I have tried pretty successfully to do that since her diagnosis; however, I tend to be a planner. I am always thinking into the future and about possibilities that might require consideration right now. I wish I could accurately predict the future, but I’ve never been very good at that. That hasn’t prevented my continuing efforts to plan ahead. With respect to Kate and our time together, I have tried to focus on the moment and found that very rewarding. I have also tried to anticipate the future with respect to a number of things that I believe are especially important. These include our annual trip to Chautauqua as well as visits with our children and grandchildren and special friends.

Long before the end of this year, I had been thinking that this Christmas might be our last one with our son and his family in Lubbock. I was never sure that we would make the trip this year, but my optimism increased as we approached the Christmas season. Our travel arrangements are made, and I have no doubts about our making the trip and that it will go well.

On the other hand, I am also more confident now that this will be our last holiday in Lubbock with our son and his family. I am not ruling out the possibility that we might make a late-spring visit, but it is hard to imagine that Kate’s situation will make it possible to go back next Thanksgiving. That would be our typical pattern, Christmas one year and Thanksgiving the next. We always rotate the holidays with our daughter’s family and our son’s family.

My reasoning about the future involves her continued decline. She is simply losing even more of her memories, and she experiences more confusion than in the past. On top of this, travel itself is troubling for her. She can’t remember where she is. I have concerns about her walking out of the hotel room at night. There are also issues of her needing to use the restrooms in airports. These issues have existed before. I have worked around them in a variety of ways, but at some point, I will need to say it is best that we not make the trip. I believe that time will occur in the coming year.

With that in mind, I am grateful that we are having such a good time during this Christmas season. There are still more things to come before we leave for Texas, and I expect our visit there will be special as well.

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Expressing Gratitude

One of the ways in which I, as a caregiver, have been fortunate throughout my care for Kate is her own expressions of gratitude. I know that many others who care for a person with dementia are not on the receiving of these acts of appreciation. I feel for them. It is enough to have one’s life organized around the care for another person. To do so without any sign gratitude would be unbearable. When you love someone and that person acknowledges her gratitude, caregiving is much easier.

It is true that Kate is more irritable than she was before AD. Those moments are usually rather fleeting. On the other hand, her expression of appreciation has punctuated the entire journey. It doesn’t occur all the time but often enough that it tells me she knows how dependent on me she has become. These expressions come in very small packages. Here are two recent examples.

The other day in a restaurant without anything to prompt her, she said, “Thank you for everything you do for me.” I don’t know why she said it at that time, but I interpreted it as her recognition that I do a lot for her. Another occurred last night. As we walked to the car after dinner, I walked ahead of her and opened the car door for her. She said, “You didn’t have to do that.” I said, “I know I didn’t. I just wanted to. I want to take care of you.” She responded, “You do. You take very good care of me.”