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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.”

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Another Mood Change

I have mentioned before that Kate is particularly sensitive to lots of things like temperature, noise, music, etc. It seems to me that this sensitivity is even more noticeable now than in the past. It doesn’t take much to startle her. She often responds audibly to someone’s sneezing or coughing. I have to believe the people around us sometimes hear her reaction. She is frequently hot in the house and likes to have the overhead fans turned on regardless of the temperature. I compensate by wearing a sweater.

This morning she wasn’t in a particularly good mood when we went to Panera. It wasn’t long before she complained about a particular rendition of a favorite Christmas carol that was playing. After forty-five minutes, she asked when we could go home. She said it was too hot there. We left to come home. Since it was a little before 10:00 and too cold to work in the yard, I told her I would build a fire and put on some Christmas music. She seemed to like the idea but didn’t express great enthusiasm.

When we got home, and I had the fire going, I turned on the music, Handel’s Messiah. I had the volume too loud for her. It startled her. I turned it down to a more acceptable level. She came into the room and has been working on her iPad for almost an hour. She has enjoyed both the fire and the music. We are back on track now. I think we have averted any further problems, at least for a while. We will go to lunch in another thirty minutes or so. This afternoon we are going to the Bijou where they are putting on a production of Miracle on 34th Street. I expect that will provide another good experience.

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Christmas Music And A Fire

This is a cold, rainy day with the prospect of some snow. We made our usual visit to Panera and Kate seemed to be having a good day. While we were at lunch, I checked something on my phone. Kate asked what I was doing. I told her. Then she said, “Why don’t I have one.” I hesitated a moment trying to think of just the right thing to say. I said, “You used to have one. We may have an old one at the house.” She gave me a disgusted look and said something about having to depend on me to drive her where she wanted to go. I realized she was talking about a car and not a phone. Then she said something that indicated she didn’t want to talk about it any further. She looked very depressed.

She was very quiet for the balance of the meal. I began to think of the afternoon and her not being able to work outside. That led me to check the Live in HD at The Met performance. We have frequently attended those in the past but have not gone this season. I saw that Hansel and Gretel was scheduled. I asked if she wanted to try it. She said she did. We continued with our meal. At one point she asked, “What am I going to do this afternoon?” I reminded her about the opera, and she accepted that.

The theater that usually has the operas was diagonally across the street from the restaurant. We walked over after lunch to discover that they were not showing the one today. I hope that doesn’t mean they have discontinued them. That left us with another option, to go home and sit by the fire. Both of us thought that sounded like a good idea.

On the way home I played a recording of Fiddler on the Roof. When Kate heard “If I Were a Rich Man,” she chuckled. That completely changed her mood. She continued to chuckle throughout the song. Once we were home, I got the fire going and turned on some Christmas music. She had her iPad in her lap, but she was so taken by the music and the fire that she put it down. At one point, I looked over at her and saw that she had her eyes closed and a smile on her face. She was happy. I must admit that brought a tear to my eyes. I love seeing her enjoy herself.

After a while, she got up and left the room. She’s been gone about 45 minutes. I walked back to the bedroom. She was in bed with the cover over her.

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Needing Help With Clothes

For the second day in a row, Kate came into the kitchen and asked, “What can I wear?” I asked if she would like me to pick out something for her. She said yes. It is obvious we are going through a transition. It doesn’t seem that long ago that she didn’t want me to help with the selection of clothes at all. She actually resented it. Over the years, she has accepted more involvement from me. I have attempted to respect her desire for independence in this area. I have tended to get involved only when we were going somewhere that would call for something a little nicer than her everyday clothes. I have also asked her to change clothes when they had gotten too dirty from working outside. That is something about which I have become much more accepting than in the past.

I feel her struggle for independence has been a good thing. It saddens me to see her turn over her clothes to me. That is one of the last things she has been able to do almost completely on her own. The primary way in which I try to help her is by picking up clothes that have been left in various places around the house and putting them in the laundry or back in the closet if they are clean. I also try to keep her clothes somewhat organized. I have never taken all her clothes out of the closet and started over. What I have done is to move her clothes so that the ones she wears regularly are all at the front of the closet, pants on the right side and tops on the left. I also arrange the clothes by color. I am not sure that it helps her, but it helps me when putting her clothes up or getting clothes out for her.

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More Signs of Confusion

Before we went to Casa Bella last night, Kate started to put on an outfit that I thought was less appropriate than she should wear. She told me to pick out something. I did and put the pants and top on the bed in her room while she was standing there. I left the room to get myself dressed. Shortly she came into our bedroom wearing the same thing she had been wearing. I told her she didn’t put on the things I picked out. She gave me a puzzled look and asked where they were. I told her I had put them on the bed. We walked back to her room. I found the top on a hanger in her closet. She had thrown the pants across a chair. It was obvious she had no recollection of my having picked these out for her. I stayed with her while she took off the top she was wearing. I told her she didn’t need to change her pants although they were more casual than the ones I had picked out. Again, I went back to get ready. She came into the bedroom where I was getting ready. Once again, she was wearing the top she had been wearing to start with. I went with her to her bedroom and helped her into the top I had picked out.

This morning she was a little disoriented. Shortly after 8:30, I went to the bedroom to see if she was up. She was walking back to our bedroom. She asked, “What can I wear?” I asked her if she would like me to find something for her. She said, “Oh, yes.” There was no effort to express her independence. I walked to her room and picked out something from her closet where there were many options she could have chosen. When I returned to our bedroom with her clothes, she thanked me and put them on.

On a related note, I have noticed that she is having increasing trouble putting on her clothes. For quite a long time she has frequently put on her tops and pants backwards or inside out. This tendency is increasing. Last night as we got ready to leave for Casa Bella, she had great difficulty getting her top on correctly.

She has had similar problems today with two different coats. Late this afternoon, we went to Panera. The sitter had taken her there earlier, but she was eager to get out of the house. We had another hour before going to dinner; so back to Panera we went. Since it has been cold and rainy today, I gave her a coat to wear. I watched as she struggled to get it on. She wanted to do it without my help. She ended up getting in the car with her right arm in the right sleeve but couldn’t find the sleeve for the left arm. Before we left Panera, she started to try to put on her coat and then asked me to help her.

Because it has been such a nasty day I was concerned about Kate’s being occupied while the sitter was with her. Working outside was impossible. That only left the iPad to keep her busy. As far as I could tell, that did not turn out to be a problem. Neither Kate nor the sitter said anything.

As she has been doing, Kate warmly greeted the sitter. She also thanked her when she left. After she was gone, Kate said something about how sharp she is. I said, “It must be nice to have somebody here with you.” She nodded agreement and then said, “It really is. More than I thought at first.” I still don’t know if she realizes she has two different sitters, but she has never mentioned anything that suggests she does. She seems equally happy with each of them.

We reached a significant milestone with the sitters this week. It marks the end of the first ninety days since they started coming. The importance of this is that our long-term care insurance doesn’t start reimbursing us until after that period. If everything goes according to plan, I will need to submit records of all the payments made through Tuesday of this week. After they have accepted them, they will reimburse us for all future expenses up to a daily maximum set by our policy (12.5 hours). At the moment, I can’t begin to estimate how long it will be before we hit that maximum. I hope it is a long time.