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Very Special Moments

I am always happy to report the many good times Kate and I have. Of course, some are more special than others. That was the case last night. It started a few minutes before we were to leave the restaurant after our weekly pizza. A couple I had first met professionally came in and were about to be seated at the booth behind us. They had been clients who really made a significant difference in the success of my business. I had always enjoyed working with them. It had been a while since we had seen them, and we got into a conversation. Instead of our leaving, we ended up sitting with them for quite a while.

I know that Kate did not remember their names or anything about our previous connection, but she handled herself like a pro. She continues to know how to greet people and engage in light conversations. It was much more than this that made our time special. As the four of us talked, Kate and the woman started their own conversation. I didn’t hear a word they were saying, but it was a pleasure for me to see Kate so engaged. This is a rare experience. In most group situations she ends up being left out, but one-on-one she can do well. We’ve had several of those experiences lately. I’ll have to work harder to arrange more in the future.

If the day had ended right there, I would have been happy. There was more to come. The previous three nights we watched the 25th anniversary concert production of Les Miserables. It’s a three-hour concert. We watched about an hour each night. This was the second time to watch this DVD in the past three or four weeks, but Kate loved it every bit as much as the first time. Because of this, I asked if she would like to re-watch the final segment again last night. She did. I was curious to see if the repetition would dampen her enthusiasm. Absolutely not. If anything, it was more intense. As she had done previously, she expressed her feelings audibly, both in comments and in “Oohs” and “Ahs.” She not only praised the quality of the singers voices but also their acting ability. She was talking specifically about their facial expressions as they conveyed the particular emotions appropriate to each song. I took note of her ability to recognize emotions as well as she ever could. It’s also another powerful reminder of the impact that music can have. It was important to us before Alzheimer’s and even more so since.

Now I am thinking of trying something else today. Several times this week, I have mentioned the Mr. Rogers documentary, Won’t You Be My Neighbor? At least once, she has said she wanted to see it. We saw it last Saturday. She enjoyed it so much I took her back to see it on Tuesday. I am seriously considering taking her again this afternoon. That might seem a strange thing to do. It would be unusual for us. I don’t ever recall going to see a movie three times, especially in one week. Two things are motivating me. First, she really enjoyed the movie the first two times. I think she is likely to feel the same a third time. Even if she liked it less, it would still be fun for her. Second, we don’t have any other plans for the day. If we don’t go to the movie, we are likely to spend a little time at home and also Banes & Noble. She would be working on her iPad. Although she rarely seems to tire of that, I think might be a good alternative. Whatever we do, I am optimistic that it will be a good day and grateful for all the good days in the past.

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Making a Good Recovery

I am very happy to report that yesterday Kate didn’t show any of the signs of anxiety that she experienced night before last. She got up a little earlier than usual and acted like nothing had ever happened. Of course, I didn’t expect her to remember. That’s a good thing.

I was especially happy that she got up without my waking her. Two church friends had invited us to meet them for lunch at 11:45. As it turned out, Kate was awake early enough for us to spend an hour at Panera before leaving for lunch. We had a good time. These kind of social encounters are good for Kate as well as for me. As usual, Kate handled herself as though she doesn’t have Alzheimer’s.

After lunch, we came home for about an hour. Kate rested a while before I got her up for her 3:00 appointment for a massage. The massage therapist mentioned that she was very talkative. I was glad to hear that. I started arranging one massage a month about three years ago. At the same time, I arranged one facial a month as well. I space them so that she has one or the other every two weeks. Kate doesn’t say much about them although she often wants me to feel her cheeks after the facial. They are always so smooth.

From there we went to Barnes & Noble for an hour. Then we came home to change clothes and leave for Casa Bella. It was Broadway night. One of the men with whom we sit was celebrating his 94th birthday. His daughter and husband, who now operate the restaurant, arranged for 16 of us to sit at one long table. We were served family style. The music was terrific, and it was another great social occasion. I sat next to a woman who told me she thought Kate does a remarkable job at these musical evenings and that she would not have guessed she has Alzheimer’s if I had not told her. Last night Kate discovered the woman sitting next to her is a former librarian. They had a good conversation about their common background.

Even though we had a good day yesterday, I do wonder if or when Kate might have another experience of anxiety. I hope that was an isolated incident, but I’ll be on guard for more.

In closing, I can still say that Kate continues to do very well to be so far into her journey. I am grateful.

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Yesterday

We had another good day yesterday. It was a good example of how little time we spend at home on a typical day. Kate slept a little later, but we made it to Panera for almost an hour before going to lunch. After that, we came back home. That left us about two hours before our hair appointments at 3:00. Knowing that Kate doesn’t like to stay at home for long, I gave her an option to go to Barnes & Noble. She opted to stay at home.

About an hour and fifteen minutes later, she got up and went to the bathroom. When she returned, she was ready to go. It was 2:30, so I asked if she would like to go for our haircuts then or wait another fifteen minutes at home. She wanted to go the hair salon. That’s what we did. As it turned out that worked well. The person who cuts our hair did not have a 2:30 appointment and took her right in. It was a day for color, so I had time to run back home for a while before returning an hour later for my haircut.

By then it was 4:00. That left us time before we were to leave for jazz night at Casa Bella. I asked if she would like to go home or to Panera. She wanted to go to Panera. I have often commented about the importance of Panera and other restaurants to both of us. It puts us in centers of activity. We often see people we know and engage in brief conversations. In addition, we meet new people who also come regularly.

Although Kate obviously enjoys being at Panera, I have never heard her make a comment about it until yesterday. She loves children and had been watching a young child in his mother’s arms as she got herself a drink. Then she said, “Panera’s a nice place to be.” She went on to say something about the surroundings and the people that we see. When she says things like this, I am reminded of how much she takes in. It’s a happy moment for me. It also makes me think. I’m afraid I sometimes underestimate her. I know it is common for other people to underestimate what people with dementia can understand. We are easily drawn in that direction, even caregivers who should know better.

We left Panera in time to change clothes before going to Casa Bella. When Kate was ready, she was carrying a turtleneck sweater and pair of pants that go with an old warm-up suit I used to wear to the Y in the morning. I didn’t say a word. She brought them to the car but didn’t take them into the restaurant. I would have said something if she had started to do that.

It was another beautiful evening of music and socializing. We sat with one couple we sit with every time we go for one of their musical evenings. That’s three times a month. The other couple has joined us several times in the past few months. They are all interesting people, and we get along well. Kate doesn’t talk much but enjoys being with the group, and she loves the music. It was a terrific way to end the day.

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A socially active day, and it’s not over.

I knew this was going to be a full day, but it’s turned out to be more than I expected. That’s good news. We had a very nice lunch with Angela and Marvin Green who are members of our church. It was an unusually good social experience for Kate. Normally, when we are with another couple, almost all of the conversation is among the four of us. We had some of that today, but there were at least two times when Kate and Marvin were engaged in their own conversation while Angela and I did the same. Kate handled herself well and was quite talkative. I couldn’t help wondering how much of what she said was actually true, but it doesn’t matter. She was having a marvelous time. Angela asked what they could do for us. I told her that going out to eat together was the very best thing they could do. It really meant a lot.

After we returned home, I received a phone call from another church friend. She and Kate became friends when Kate served as the volunteer church librarian. Martha wanted to know if she could drop by to visit with Kate. I told her that would be fine. When Martha arrived, I told them I was going to let them visit and went to the kitchen which doubles as my office. I couldn’t hear what they said, but they never skipped a beat in their conversation. I don’t know who was happier, Kate or I.

It is a very rare event for Kate to have the opportunity for the kind of one-on-one conversation she had both at lunch and this afternoon. We are going to opera night at Casa Bella in little over an hour. That is always special, but I feel sure the two social experiences she has already had will be the highlight of this day.

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Eating out still works for us.

Last night we ate at Bonefish Grill, a place we have frequented more often recently. During our meal, I didn’t see anyone that we knew which is a little unusual. As we got up to leave, we passed by a couple whom we have known through the Knoxville Symphony. We chatted with them a little bit. Then I noticed a hand waving to me from another table. It turned out to be a former neighbor and her husband. We hadn’t seen them in a while. We must have had a ten-minute conversation. After that we saw a fellow Rotarian and his wife whom we also see at some of the music nights at Casa Bella.

We left having had a good meal and another social occasion. It didn’t require anything special on Kate’s part or mine, but it was the kind of thing that provides a little boost in the day. I am glad to say that we have many of these at meal times. While there are a lot of good things to be said about eating in one’s own home, in terms of our personal needs, eating out is just what the doctor ordered.

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A Special Anniversary Lunch In Asheville

Kate and I have celebrated our anniversary in Asheville many times. It comes around Memorial Day, and there are always interesting things happening while we are here. When we were here last year, I wasn’t sure that Kate would be back this year. As with so many things, she has surprised me, so I made plans just a couple of weeks ago. I’m glad we made it one more time.

If you’re a regular reader of this blog, you know that Kate and I have a daily routine when we are at home in Knoxville. Apart from our morning visit to Panera for Kate’s blueberry muffin, we know the restaurants where will be eating for lunch and dinner each day of the week. That routine has created an interesting and very supportive network of people. We find that we are drawn to the various restaurants more for the social reasons than for the food itself.

That leads me to tell you about a special relationship we have developed with a server here in Asheville. We met her at lunch several years ago, when she was working at one of our favorite places. On a later trip, we went to lunch at a different restaurant. It turned out she had moved to that restaurant, and she remembered us. Since that time, we have made it a point to eat There each time we visit the city and, of course, ask for Melissa.

The last time we were here was in December. I mentioned that we might see her again at the end of May, but I was doubtful. She asked for our home address and sent us a Christmas card with a very nice note attached. I was touched by that and intended to write her a note telling how much her note had meant, but I lost the address. I decided I should call the restaurant to get it but never got around to it. Then as our anniversary date got closer, I thought about making the trip back to Asheville to see her as well as Jenny who works at the front desk at the Haywood Park Hotel where we always stay.

Two weeks ago, I called the restaurant and learned that Melissa had changed to another restaurant in town. It’s another place we have eaten a number of times over the years. I called and left a message for Melissa to text me. She did, and we arranged for this year’s visit.

Our lunch turned out to be the highlight of the day, not because of the food (which was excellent) but because of Melissa. I should add that we have established relationships with servers in a number of restaurants in Knoxville. That is not surprising given that we see them so frequently, most of them once a week. This bonding with Melissa is unique in that we are here only two or three times a year at the most, and I don’t know that we will ever be back. What I do know is that it is possible for people to connect in a special way even in something as fleeting as a “server/guest” relationship. Melissa and other servers who have been so kind to us may never know how much they add to our lives.

Postscript: We discovered that she and her husband’s anniversary was also yesterday. It’s just two years for her, but I hope our 55 years together will be an inspiration for her.

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A Peaceful Sunday

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

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

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

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

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

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

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

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Our Lunch with Longtime Friends

We had lunch with Dorothy and Mitch Hinely at Casa Bella today. Our friendship with Dorothy goes back to the early 1970s when we were members of a local Unitarian Fellowship. Our daughters met at that time and are still best friends. She and Mitch married several years ago and quickly became a valued addition to this longstanding relationship.

Prior to going, I told Kate we would be joining them for lunch. She couldn’t remember them. I told her their names and something about them. That didn’t help. Even when I mentioned the friendship of our daughters, she didn’t seem to know who I was talking about. That changed the moment she saw them. In fact, Dorothy stooped down to Kate’s chair, and Kate said enthusiasm, “No, I’ve got to stand up and give you a hug.” This reminds me of my earlier post that asked, “What does it mean to know someone?” Kate clearly knew her in some way even if recalling her name and other things about our friendship were drifting away.

The conversation flowed easily. I am sure we could have taken much longer to catch up on our respective lives and to reminisce together, but it was time to go. I worried about Kate since Dorothy and I tended to dominate the conversation with a little help from Mitch. It’s hard for Kate to keep up, and I am sure she couldn’t follow everything we talked about. The moment we got in the car she told me how much she had enjoyed the lunch and how smoothly the conversation had gone. I was happy about that. It shows that she felt a part of the group even though her speaking time was decidedly less than that of the rest of us.

I took special note of the fact that she then asked me the name of the restaurant where we had eaten. This surprised me since we have been coming to Casa Bella since 1971. When they added their musical evenings, we started coming three or four times a month. We were there just last Thursday evening and will be there this Thursday. It is a place we have eaten to celebrate good times and to console ourselves when things were not so good. I remember a couple of years ago when she forgot our favorite dessert. Now the restaurant’s name is slipping away as well.

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Follow-up to My Earlier Post

I was right. The day is coming to an end on a high note. As we were finishing our dinner tonight, our pastor and his wife came in for dinner. We asked them to join us and then spent the next hour in animated conversation. During that time we saw another church member and her son as well as two people the pastor and his wife knew. As often happens, a routine meal turned out to be a very pleasant social occasion. It reminds me once again why I think the decision to eat out for all our meals has been so beneficial to us.

When we returned home, Kate commented on how much she likes our bedroom. Then she got dressed for bed and sat in her chair in the bedroom working on her iPad. I turned on PBS Newshour that I had recorded earlier. Like almost every evening it was a very peaceful end to what had been a good day. Then a few minutes ago, she asked, “Where are we right now?” I said, “Knoxville.” She responded, “So we’re still at home.” You may find it hard to imagine that she could sit here in her own house that she enjoys so much and then ask where we are. I hear enough things like this that I am no longer surprised. And because she has been so happy and we have been enjoying our time together, I don’t feel sad either. I’ve known for over seven years that we were coming to this, but I didn’t expect that we could find happiness within the context of such a radical change in the way her brain works. I also know that this will not last forever, but we will enjoy it while we can.

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Life can be so confusing.

I often try to imagine what a day like today must be like for Kate. I know she can’t remember what city she is in, and I mean right here at home in Knoxville. She doesn’t know what restaurant we are in or what she eats even though I usually order the same thing for her. When we are headed someplace in the car, she never knows where we are going even though I have told her. I do know that she is often curious about where we are because she asks, “Where are we?” When I tell her something, she sometimes says, “I’ve already forgotten.”

Today was a typical one until 2:00. Kate woke up a little earlier, and we arrived at Panera shortly after 9:30. She was feeling a little tired, so we were back home at 10:45. She went to our bedroom to rest. I don’t think she fell asleep but she was in bed until I got her up for lunch shortly after noon. Then we were off to lunch.

We were back home at 2:00. I told her we were going to a visitation for a friend and would need to change our clothes before leaving. She couldn’t remember who had died even though he was the spouse of someone with whom we have had a relationship since I was on the UT faculty in 1971. I asked if she would like me to pick out something for her to wear. She said that she would appreciate that. I got her a pair of pants and a top with an attractive cardigan sweater to wear over it. I brought them to her and laid them out on our bed. I went to the bathroom to brush my teeth. When I came out, she had thrown the pants and sweater on her chair. I found the top on the floor. I said, “You didn’t put on your clothes.” She said, “Where are we going?” I told her again and showed her the clothes she was to wear. I went to the closet to get something for myself. When I came out, she was about to put on her cardigan sweater (no buttons) without her top. I told her to put on her top before putting on the sweater. She looked confused. Then I told her that first she should take off the top and pants she was wearing. When I said that, she congratulated me by saying, “Now that was clear.” That was all it took. She got dressed, and we left. I think I should say now that I was very cool during this process. I didn’t want to prompt a panic attack. I do everything I can to avoid those.

In the car, she asked me where we were going. It was then that I told her that we were going to a memorial service for someone I know from the Y and then we would go to the visitation for our mutual friend. I knew when I said it that was too much for her to grasp though I don’t think I could have prevented it. As it turned out, I didn’t see anyone that I know at the service. Of course, Kate didn’t either. She was incredibly patient throughout.

After the service, we headed to the visitation. Several times on the way over, she asked questions about who had died and the person’s connection to us. When I mentioned our mutual friend who had also been a professional friend with the school district, Kate couldn’t remember her. When we arrived at the funeral home, she asked if it were a church. She asked the same thing inside and as we got to the car afterward. She also asked who had died. The whole afternoon must have been a very confusing one for her. I really felt sorry for her, but she handled herself beautifully. I was the only one who knew just how confused she was.

Once inside, she told me she remembered being there before. She pointed to specific parts of the hallway that she recalled. As you might have guessed, we had never been to this funeral home. It is a fairly new one.

We waited in line for about twenty minutes before seeing our friend whose husband had died. Kate asked if she could walk around a room on the other side of the hall where we were in line. I told her she could and pointed to the chapel that was adjacent to the room she wanted to see. I noticed that she stepped into the chapel and looked around before returning to the line. As we were preparing to leave, we walked by the room, and I pointed to the chapel again. She was completely surprised and wanted to look at it again.

We spoke with our friend in the receiving line and then moved to the end of the room where they had set up a television with a slide show of pictures of our friend’s husband. While I was chatting with a woman that had been standing in line with us, Kate went to an adjoining room where they had some light refreshments and a display of various pictures and mementos of the deceased. When I got to the room, she said she wanted to show me a picture of someone who looked like her mother. She couldn’t remember where she had seen it, but I saw a picture that included someone I thought had to the one she was talking about. I showed it to her, and she confirmed it. Shortly afterward as we were nearing the exit of the funeral home, we got engaged in a conversation with the owner. Kate said she wanted to see the picture of “her mother.” She couldn’t remember how to get there. I pointed in the direction of the end of the hallway and said, “Turn right and it’s the first door on your left.” I knew she would not be able to find it, but I also knew she couldn’t go much further and get lost. Then a friend who was there offered to take her. I accepted. In a few minutes, I met her in the room with the picture. I took her over to the picture. It became obvious that she thought it was her mother. She looked very teary. In situations like this, I always have to decide whether to let it go or to tell the truth. In this particular case, I told the truth. I said, “It looks a lot like your mother, but she’s not. She accepted that without a problem. I am glad. I would have felt very guilty if she had been hurt by the truth.

Then we walked toward the exit. As we did, I saw one of our friends’ son and pointed him out to Kate. When I mentioned our friend, she had forgotten that our friend, as the wife of the deceased, had been the first one in the receiving line. We had already seen and spoken with her, but she said, “I want to speak to her.” In this case, I didn’t tell her the truth. I just said, “Let’s go back to the room where she was before and see if you can speak to her.” By this time, most of the crowd had dispersed. We found her talking with a member of the music faculty. Our friend’s husband had served as department chair for almost 30 years. It turns out that the faculty member with whom she was talking was also our son’s piano teacher during his junior and senior years in high school. We had just seen him at dinner the night before. We walked over to join them. Kate greeted our friend as though it had been years since she had last seen her. Our friend is aware of Kate’s diagnosis, so I don’t think she thought much about it.

It has really been a good day. I am glad that we went to both the memorial service and the visitation. I wish that it had not been so confusing for Kate, but she seemed to get along pretty well even in her confusion. In addition, the pain in her knee has been worse today. She has walked even more slowly than usual and took a good bit of time getting into and out of the car as well as her chair in a restaurant. She hasn’t complained, only acknowledged the pain. She is remarkable.