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Amidst the Joy of Christmas There Are Moments of Sadness.

This has been a special Christmas season for us. My feelings are no doubt influenced by the belief that next Christmas Kate may be less able to enjoy it. Since her diagnosis we have tried to “live in the moment.” That has carried us through the rough spots along the way and continues to do so. At the same time, there are moments when the progression of Kate’s illness is evident in new ways. When this happens, I feel sadness overtaking me for a short time. That happened in the car after lunch today.

It occurred when I told her that we had plenty of time before our haircuts at 3:00. That would give her time to work in the yard. She tried to get the words to tell me she wanted to do something else. They wouldn’t come. At first, I didn’t guess what she was trying to say. Then I asked if she wanted to work on her albums. She did. I told her I would be glad to get out her computer. She paused for a moment and then said, “First, I would like to pull a few leaves.” I told her that was fine. She could do whatever she wanted. I knew the moment she said she wanted to start by pulling leaves that she would forget the albums. That is exactly what happened. She has been doing something like this periodically. Not once has she actually started on her albums.

These family photo albums are very important to her. She frequently tells me to “remember that for the album.” She says that in response to all manner of things that come up in our conversation. When we are with other people and someone asks her what she has been doing, she often tells them she is working on her albums even though it has been at least two years since she has done anything. Long before that, she was only editing photos, not taking any steps that led directly to assembling the photos for her album.

It is not just this episode that makes me pessimistic about next Christmas. It is many other things that I take to be signs of her decline: Her more compliant nature when I make suggestions, especially about her clothes, her growing dependence on me as reflected in her asking for permission to do so many things, or to help her with her clothes, and more.

We have been very fortunate for such a long time, but I see our quality time together diminishing as she moves into another stage. I will continue to be thankful for the many good times we have had, but I already feel sad about the prospects for the future.

 

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Unexpected Gifts

I have often commented on the importance of our social contacts with servers and other customers at the restaurants we frequent. In particular we have made it a point to learn a little about those who serve us, especially those who are our regulars. This is done without any expectation that they should do anything more than provide the service. They have done that well. Thus, it is a pleasant surprise when they respond to us in any special way as two of our servers have done this week and both involve something as simple as a Christmas card with an accompanying note.

The first came in the mail yesterday. It was from our server at a restaurant in Asheville. She has served us the past four times we have visited there. On Sunday, she had asked for our address, but I didn’t think anything about it until her card arrived. I was both surprised and touched by her thoughtfulness. Here is what she said.

Mr. Richard and Mrs. Kate,

 You will never know how the 2 of you have touched my life. Your example of love & devotion to each other is one of the greatest things I’ve had the pleasure of experiencing.

 Thank you for blessing me with this wonderful gift! You will be in my thoughts & prayers.

 Merry Christmas & Happy New Year!

 Melissa  

Today at Panera, one of the young men working there came to our table and gave us a card with another kind note.

As the holiday season is upon us, I think of all the benefits of being where I am. I quickly think of my relationships with great people like you.

 I find myself reflecting on the past year and those who have helped to shape my day-to-day life. It’s been quite a year for us all. I hope that 2018 will be just as memorable for you, your friends, and your loved ones.

 The end of the year brings no greater joy than to express to you season’s greetings and good wishes.

 May your holidays and New Year be filled with joy.

 Your friendly neighborhood barista,

 Dave

Both of the remembrances meant a lot to Kate and me even more so because we would never have expected them. Perhaps that is a good lesson for all of us. I wonder who we can surprise with a word of kindness in the coming year.

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Making Use of Time While the Sitter is With Kate

At the moment and for the next hour, I am at Whole Foods. This isn’t something I planned. It just seemed to be the best option for me right now. I left home shortly after the sitter arrived. Normally, I would have gone to the Y, but I had a meeting at United Way at 2:00. At the last minute, the meeting was changed to 3:00. Then I thought I might get together with Mark Harrington who is helping me with the technical aspects of getting this journal ready to be launched as a blog. He and his wife have recently moved to a new house. It turns out that he has a commitment to meet someone who is doing some work for them.

That has left me in a peculiar situation. I usually have a definite plan for the four hours the sitter is with Kate. Today I didn’t. The good news is that I always have things I can do with my journal. Almost all of them involve reviewing all previous entries and putting them in categories so that readers can sort through them for things of special interest. I don’t foresee that I will finish doing that before my launch date in January.

Having a bit of time that I need to fill is not something that happens very often. I either have plans or I have other commitments that demand my attention. For a while, I was concerned that four hours was not sufficient time for me to do the things I needed or wanted to do. For that reason, it feels funny to leave Kate with a sitter. It is as though I have a sitter but don’t need her today. I wonder if other caregivers ever find themselves in this situation.

That reminds me that yesterday I spoke with the agency that provides the sitters. We were making arrangements for the January schedule. They asked if I would want someone on New Year’s Day. I told them I didn’t.

I just got a call from my contact at United Way. They are now thinking of handling the 3:00 meeting by phone because of the weather. That is fine with me. That may give me a little more time this afternoon.

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Confused, But Very Good-Natured

This has been another very nice day. The moment Kate got up she was in a very good humor. I don’t mean to suggest that she is usually in a bad humor, but sometimes she can be a little grumpy.  That is before she fully wakes up. That was not so this morning. On the other hand, she has displayed confusion throughout the day. For example, she got dressed this morning before I reminded her that a church friend had invited us to lunch. She was dressed more casually than I thought she should be. When I noticed what she was wearing, I told her that I had forgotten to remind her that we were going to lunch with our friend and that she might want to wear something else. She very nicely told me she thought what she was wearing was fine. I quickly decided not to make an issue of this and told her that would be fine. It was only after we had left the house that I noticed that she was wearing shoes that didn’t match in color or style. I let it go, and everything was fine.

On the way to the restaurant, she asked me who we were meeting. She asked at least three times before we got there as well as after we left her. Despite this confusion, she got along beautifully at lunch and following lunch at our friend’s home.

As soon as we got home, she went outside to work in the yard. I let her know it was getting close to dinner time almost three hours later. She had been sitting in the flower beds cleaning out weeds and other debris. For that reason, her clothes were visibly soiled. I thought she might be planning to come inside, take a shower, and put on clean clothes. As it turned out, she just washed her hands and was ready to go. I suggested that she change her clothes. She accepted my suggestion. I brought her a change of pants and a top. I gave them to her and said, “Here are your clothes.” I walked out of the room. When I returned, she was at the back door ready to go to the car. She was still wearing the dirty clothes and carrying the clean ones. I told her I meant for her to wear the clothes in her hands. She didn’t object at all. She was very agreeable and made the change I had suggested.

We went to a Chinese dinner tonight. Soon after we were served, I asked her how she liked the meal. She said it was “good, but not great.” She made a similar comment a little later. Toward the end of the meal, I noticed she was about to finish her whole meal. It was a generous serving. I made a comment, and she responded with, “It’s very good.” This kind of shift in her evaluation of things is quite common. She can easily say that she likes something one minute and dislikes it the next.

When we got home, she walked into our bedroom with her night clothes and asked, “Are we staying here tonight?” This is something else that is not unusual. I have suspected that this occurs because we occasionally we stay in a hotel or the home of our daughter. It must not fully register than we are home.

Given the confusion of the day, one might think it might not have been a good day. But it was. I am glad. I’ll go to bed feeling good.

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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.”