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Celebrating Anniversaries

Today is a special day for us. Fifty-six years ago, Kate and I had our first date to a performance of Handel’s Messiah at TCU. Fifty-five years ago, we became officially engaged. We have never formally celebrated these events, but I think we have only forgotten them on one or two occasions.

Kate ceased to remember any special dates several years ago. That includes birthdays, our wedding anniversary, all of the important dates of our children and grandchildren, as well as holidays. Even though I have mentioned today’s anniversaries to her a number of times over the past few days including several times today, she doesn’t remember. It is amazing how we have adapted. The first time or two she forgot my birthday or our wedding anniversary it made me sad. Now I find satisfaction knowing that she is happy and that we are still able to do so many things together. Part of the reason I feel the Christmas season is so special is because of these events. I let the moments we are enjoying now and the memories of the past rekindle the feelings we had at that time and feel grateful.

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A Great Day In Asheville

As expected, we had a nice day in Asheville yesterday. I had made reservations for lunch for 12:15 at one of our favorite places. I never quite know how easy or difficult it might to meet a specific time like this and also get in her muffin at Panera, but she had been getting up early enough for us to make it. It turned out that I had to wake her, something I don’t like to do. That meant I did have to “gently rush” her to get ready. She wasn’t entirely happy about it, but we avoided a big problem. I called the restaurant to get a later reservation.

When we arrived at the restaurant, our server came up to the hostess desk to greet us. I had made the reservation on Open Table and requested Melissa. This was the fourth time she has served us. We like her and she seems to like us. She even brought us an order of their warm banana bread on the house, a recent addition to their menu. The last time we were here was in September. At that time  I told her about Kate’s Alzheimer’s. I didn’t get a chance to say very much before Kate came back from the restroom; I’m afraid it was a more abrupt announcement than I had intended. Her eyes were filled with tears as we left. As we walked to our table, I was able to let her know how well Kate has been getting along even though her memory is just about gone.

Near the end of our meal, I got a call from our hotel letting us know that our room was ready. When I picked up the key at the front desk, they let us know it is the “Christmas” room. It is beautifully decorated for Christmas and is the only such room in the hotel. Right now, I am sitting in front of the fireplace in a sitting room adjoining he bedroom. At the end of the sofa to my left is a gorgeous Christmas tree. It’s no wonder we always choose to stay here. They have always been so very nice to us.

A few years ago, I told the front desk about Kate’s diagnosis. I usually do this at the hotels we visit. It may not be necessary, but I like them to know in case she should come out of our room and not be able to find her way back, especially if is during the night. On a few occasions, she has gotten up to go to the bathroom during the night and tried to go outside. On one occasion she had gotten into the hallway before I caught her. I have been confident that I would wake up when she gets out of bed. Recently, however, there have been a couple of occasions that I haven’t waked up.

At 3:00 yesterday afternoon, we went to see the musical Annie. We have seen other productions at this theater and been pleased. I wondered how well they would do with this one since the cast consists of so many children. I got my answer. These were exceptional children, especially the young girl who played Annie. This is a very upbeat musical. I knew Kate would like it, and I was not disappointed. She expressed her enthusiasm throughout the show. In fact, this is one of the things that I am trying to watch carefully. She gets so excited that she expresses her emotion audibly with things like “Wow” or “She is good.” She frequently says these things after many of the songs. So far the volume of her expressions has been low enough that I doubt people around us felt disturbed. It does make me wonder though if the volume might increase as she declines further.

On the way back to dinner after the show, Kate said, “Where in the world are we? New York? San Francisco? Dallas?” I told her we were in Asheville. She said, “I knew that.” She has asked the same question at least one other time on this trip. That is not unusual and is understandable given the limits of her memory.

At dinner, we had a nice conversation with a couple sitting at the table next to us. We learned that they were members of a church whose former pastor is a former student of mine at UT. They were both educators, and we discovered other connections we have in common.

During the night, Kate got up twice to use the bathroom. This hotel has a very good night light for the bathroom. There are two small ceiling lights that are controlled by a switch just inside the door. They provide a soft light that enables you to easily find the bathroom in the dark. That is something about which I would have given a thought before Kate’s diagnosis. Now it’s a very important thing. I wish they were available in all hotels.

Kate is still sleeping. She awoke about fifteen minutes ago and started to get up. She asked, “What can I do?” I told her she could get up and go to breakfast, stay in bed and work on her iPad, or sit on the sofa with me in front of the fireplace. She chose to stay I bed. I told her there is no hurry, that she can stay in bed as long as she likes. I may go back to the lobby where they served a continental breakfast and bring something back to the room for her. That is just in case she gets up after 10:00 when they take up the breakfast.

I am happy to say that our visit here has been a good one.

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Conversations

If you are caregiver for someone with dementia, you may relate to an experience Kate and I had last night. From the time of her diagnosis, we have spoken very little about her Alzheimer’s. Most of that came in the first year. Since that time most of what has been said is Kate’s saying that she thinks she is getting along pretty well and my agreeing.

In addition, conversation itself has been different. In the early years, we took time for conversation over many other things. We started regularly sitting down and talking on the patio or in our family room over a glass of wine. The conversations themselves often gravitated to the many memories of our lives together. Somewhere along the way we talked specifically about how fortunate we have been.

Over time, Kate’s memory has waned. That makes conversation for her more difficult. Most of our time together is spent in silence. I have to say this has been something of a challenge for me. I grew up with a mother and father who talked continuously. I am a big talker myself. It actually feels awkward for me to sit across the table from her at a restaurant in silence. Kate is gifted when it comes to ordinary social conversation but is not as driven to talk as I am. During our marriage, I have learned to appreciate her need for private time. Thus, I haven’t been surprised that with her Alzheimer’s, she often tells me not to talk or to “tell me about it tomorrow.” That is my intro to last night.

After we returned home from dinner, Kate dressed for bed and worked puzzles on her iPad. I turned on the TV to one of the football games. About an hour later, Kate said she was going to call it a night. She closed her iPad and went to the bathroom. In a few minutes, I heard her saying, “Oh . . . oh . . . oh . . .” I have never understood this, but it is something she says periodically. When I ask, as I did again last night, she says that nothing is wrong.

As she left the bathroom, she stopped in front of me and told me she loved me and how much she appreciated everything I do for her. Then she got into bed. As she lay there, I could hear her whimpering. I went to her and sat by her on the edge of the bed. I asked her if she were sure she was all right. Again, she said she was fine. I left her a moment and went to the bathroom where I noticed that she had hung her underwear on a towel to dry. I assumed she had had an accident. I went back to her and tried to comfort her. She couldn’t tell me anything except to say she had been reminiscing. I turned off the TV, turned out the lights, and got into bed with her. For the next 30-45 minutes, we talked about our lives together, our honeymoon, the places we had lived, our children and grandchildren, and our travels. It was a very special moment. I hadn’t heard her talk that much in a very long time. As we talked, she calmed down, and we fell asleep.

I’ll never be sure how to explain what happened to bring this on. I suspect, however, it is one of those times when she realizes how much she is declining and losing control. My own feelings were very mixed. I loved being able to have such an easy flowing conversation with her. On the other hand, I can’t help feeling sad to think of her recognition of her current state.

Today should be another bright spot in our Christmas season. We are driving to Asheville where we are going to see the musical Annie. We’ll have a couple of nice meals and enjoy another stay at the Haywood Park Hotel.

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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.