Posted on

Another Good Experience with the Sitter

I don’t have a good explanation, but Kate has seemed to accept the sitter happily over the past three weeks or so. Yesterday’s experience was the best yet. It reminded me of another experience in that I didn’t leave immediately after Mary arrived. I was trying to take care of some last-minute tax business and continued working at least another thirty minutes. I was in the kitchen and could hear the two of them talking but had no idea what they were talking about.

When I was ready to leave, I walked into the family room where Kate and Mary were seated side by side on the love seat. They were looking at one of Kate’s photo books. I assumed it was one of the family books. When I got closer, I could see that it was a photo book I had made two years ago with photos taken during several of our summer visits to Chautauqua. I stopped a minute and just listened. Kate was telling her about the beauty of the places in the photos. She came to one and said, “I don’t know what this is?” I told her.

Knowing that recently Kate has been unable to remember Chautauqua, I couldn’t help but wonder what she had been telling Mary. It was clear that she was saying something about the various pictures. I was just happy to leave her while she was having such a good time.

When I got home, they were seated in exactly the same place. This time they were looking at photos from an old album that I believe her father had put together. Kate said, “You should have gotten here earlier. We needed you.” I said, “What for?” She said, “To help us identify who all these people are.” I identified her mother and father. Before Mary left, she told me that they had taken a break during the afternoon. Kate took a nap. Then they went back to their photos. I felt good knowing that Kate had been perfectly comfortable while I was away. The way I saw them interacting was just like two friends talking. I consider that a real victory.

After Mary left, I sat down with Kate. We spent the next fifteen minutes looking at photos before she said she was getting tired. It was getting close to dinner time, so I suggested we get ready for our Friday night pizza.

I should add that one thing Kate has lacked the past four years is a close friend. Prior to that she and her friend Ellen ate lunch every Monday while I was at Rotary. They also got together one or two other times during the week. Ellen’s stroke changed everything. The stroke occurred while she was visiting her daughter in Nashville. She was never able to return to home and has been in memory care for almost two years. Kate and I visit her regularly, but that is very different from the kind of relationship the two of them had for so many years. Thus, the development of a closer relationship with the sitters could go a long way in filling the vacuum that Ellen left behind. I don’t expect the relationship to be the same as it was with her, but I feel encouraged by the way things are going.

Posted on

Anxiety Attack Is Over

As in the past, Kate’s anxiety attack didn’t last long. It was over before she went back to sleep. When she awoke, she was just fine. We enjoyed ourselves at lunch. I didn’t ask if he knew my name, but I believe she probably did and that I am her husband.

This is our day for a sitter. When I left, she and Mary were seated on the sofa looking at a photo album of Kate’s father’s family. The only thing Kate said when I said goodbye was “What are we going to do?” I told her she could look at photo albums, work jigsaw puzzles, watch DVDs or YouTube video, or go to Panera. That satisfied her. She was just fine. In fact, she has reacted very positively to her sitters the past two weeks. I love it.

Posted on

A Nice Visit with Longtime Friends

Several of our longtime friends live in Nashville, and we have visited all of them periodically for many years. During the past six to eight months, we haven’t done as well. We have continued to see our friend Ellen who is in memory care there, but I have not been good about arranging visits with the others. I miss seeing them and need to make a serious effort to see them more during the rest of the year.

As a first start, I arranged for us to see Ann and Jeff Davis in connection with our regular visit to see Ellen. Because Kate has often slept so late, we have been getting to Nashville late in the day to see her. That puts us back in Knoxville later than I like. This time I decided to visit the Davises in the afternoon and stay overnight at a hotel. That way Kate can sleep late, and we will be able to see her earlier. So far that is working well.

Even though she can’t remember, I always tell Kate where we are going and who we will see. I did that the day before we left, the morning we left, and even in the car on the way. When we parked at their house, I said, “This is the Ann and Jeff Davis’s new house. She said, “Who are they again?” I explained a little about our history together and told her that she and Ann had been very close when they lived in Knoxville. She surprised me when she said, “She and I used to talk a lot about our daughters.” That was the first time in recent memory that I can remember her recalling something like that. She didn’t say anything more specific, but I remember they talked about their daughters who are the same age and attended the same schools during middle school and high school.

In advance of our visit, Ann and I had several email communications. She had asked advice about engaging in conversation with Kate. I gave her a few suggestions and explained how well she has been able to get along and that I expected it would be the same on this visit. We got off to a good start when Kate noticed the flowers planted around their house. Ann and Jeff had seen us coming up the walk and came out to greet us. Ann and Kate had a few minutes to connect as they talked about the flowers and trees at the back of the house.

As we walked inside, we took a tour of their new home. It wasn’t planned at all, but we divided up so that Ann took Kate and Jeff took me. I think that made for a good beginning. I believe that gave Kate a chance to reconnect with Ann before the four of us sat down to visit. Kate took great interest in their home. For the next two hours we sat on their sun porch and talked.

Some of the conversation was between Ann and Kate and some between Jeff and me. For the most part, however, it was the four of us. Kate was not especially talkative, but she was comfortable and participated without any problem. As in other conversations, Kate said things that are not correct. For example, Ann asked if we used our pool very much. Kate told her that she used it more than I. The truth is that neither of us has used in much in recent years and that I am the one who occasionally takes a swim. In fact, I have recently suggested that we use it more this summer. Each time I’ve mentioned it, she has balked. I don’t mean to suggest that Kate wasn’t telling the truth. She just can’t remember. In conversation, her imagination takes over.

We could have talked much longer, but I felt it was time for us to check into our hotel and have dinner. As soon as we closed the doors to our car, Kate said, “I like them.” Once again, I thought about Kate’s intuitive abilities. Kate and Ann had been very close friends. Kate can’t remember that, at least not very well, but her feelings for Ann were rekindled just by being together. I don’t think it relates to something special that Ann said to her. I think there was something Kate was able to pick up intuitively that made the difference. Once again, I am struck by the power of her intuitive thought. It has carried us a long way.

Posted on

Another Good Day: Two Victories

It’s been a year and a half since I engaged the services of sitters for Kate. From the outset I was concerned about her accepting them. She surprised me by doing so immediately. She was never enthusiastic, however, just accepting. As she has become more dependent on me, she has seemed more reluctant for me to leave without her. Recently, she has enjoyed being with both sitters. That continued yesterday when Mary arrived.

When she came in, I was in the back of the house. I heard Kate greet her. A few minutes later, I walked in the family room. They were chatting. It looked just like Kate was talking with a neighbor who had dropped in to say hello. She did say, “Where are you going?” when I told her I was leaving, but she was perfectly at ease. There was no sign that she was bothered. As on several other occasions, I left feeling at ease myself.

When I walked in the house later, I heard Kate say, “Perfect timing.” It turned out that she and Mary had just returned from Panera. Kate told me they had had a good time.  I considered this another victory. It has been months since she has let the sitter take her to Panera in the afternoon. Prior to that it was a regular event. I hope this continues. Before Mary left, Kate said, “Have you ever seen her drive?” I told her I had only seen her drive in the driveway. Then she told me what a good driver Mary is. This is a consistent pattern for her. She regularly talks about well people do things. It’s one of the things I like about her.

Even after Mary was gone, she repeated they had a good time and how much she likes her. That was quite a victory. I couldn’t have had a better welcome home. I’ll feel much easier the next time I leave her. Even though I hadn’t spent much time with Kate earlier in the day, I was ready to say it was another good day. The rest of the day also went well.

Last night was pizza night. When we got home, she said, “What can I do now?” I suggested we go to the family room and that she could look at one of her family photo books, work jigsaw puzzles, or look at her “Memory Book,” the three-ring binder I had put together with information about our families and memories of our lives together. She started with the memory book while I watched the evening news. In a while, she picked up a history of her family’s church in Fort Worth. It was published in 2001 on the church’s 100th anniversary and had been a gift to her mother. It’s a book of over 200 pages with normal type (small for Kate).

As she went through it, she was thoroughly engaged although she had difficulty reading it. I was still impressed that she continued to work at it for about thirty minutes. She could not have done this before her cataract surgery. I should add that she also needed my help. I was seated on the sofa across from her. Every few minutes she would see a photo but couldn’t read the type indicating the person’s name. Sometimes she could read a heading but couldn’t read the text. She finally reached a section she wanted to read and asked me to read it for her. For another thirty minutes, I read to her. Her interest never waned, but I don’t believe it was because of the content per se. Some of the things I read were about people she didn’t know at all. There were also accounts of committees appointed to conduct a search for a new pastor or construct a new building, but it was her family’s church, the church in which she grew up. I was touched to see the pleasure she enjoyed looking through it.
That has to count as another good day.

Posted on

What makes a day “good”?

Yesterday, I saw a tweet by someone who produces podcasts on dementia. She mentioned that she had interviewed someone with dementia in one of her early programs, and she was still doing “pretty well” a year later. That made me think about the way Kate is doing and my reports of “good” days. It’s hard for someone to understand what that can mean. Was her memory better? Was there less confusion?

If we went from couple to couple, we would probably find differences in what they call a good day. I also think there is some change over time. If yesterday’s experiences had occurred in the early years after Kate’s diagnosis, I would have considered it a bad day. It was another day when she didn’t know who I was when she got up. That never occurred until the past six to eight months. I have come to accept that now. The same thing would have had a dramatic impact on me in the early years.

More than anything else, I consider it a good day when Kate is happy. Yesterday she was very happy. She joked with me a good bit. I regret that I can’t remember all the funny things she said. She was upbeat all day. Nothing seemed to bother her. She wanted to sleep longer when I woke her, but she got up without objecting. We had a little time between lunch and her massage. I showed her the three-ring binder of information about her and her family and about our lives together. She loved looking through it. She wanted to nap about twenty minutes before leaving for her massage. She got right up when I told her it was time to go. After the massage and a hair appointment, we had a short period of time before dinner. She said she was tired and wanted to rest. I asked how she would feel if we went to dinner right then. She said she that would be good, and we were off again. That meant that she didn’t get to rest as much as she would have liked. I thought that was good, especially when she went to bed about forty-five minutes earlier than usual. That should make it easier for her to get up this morning.

I should also say something about her massage since she didn’t have a good experience last time. I think she had forgotten what a massage was like and was surprised and confused by what the therapist was doing to her body. Before yesterday’s massage, I suggested that the therapist approach her as though this were the first one Kate had ever had. I don’t know that that made a difference, but Kate was fine when we left. I suspect that she was in such an upbeat mood that she was able to deal with massage more easily.

You might think by what I have said that she is typically depressed or in a bad mood. That is not so at all. On occasion, she has both experiences, but they are infrequent and short-lived. The difference yesterday was that she was so unflappable and upbeat. I find it uplifting for me when she is that way. So a good day doesn’t mean she doesn’t exhibit the symptoms of Alzheimer’s. Her memory and confusion are not any better, but she goes about her day as though everything is all right. I try to do the same. I think we’re both pretty successful. We focus on what she can do, not what she can’t and feel grateful.

Like other caregivers, my primary goals are (1) to keep her feeling safe and secure and (2) to keep her happy. Yesterday those goals were met. It was another good day.

Posted on

A Pleasant Surprise

It’s been six weeks since Kate’s cataract surgery, and I see signs that she can see much better than she did before surgery. That would be no surprise for someone without Alzheimer’s. It is quite different for Kate who does have that disease. It was difficult to get a good test after the surgery, but it appears that from a physical standpoint her eyesight is about 20/50. That is impressive considering that she was legally blind in her left eye before the surgery.

The most striking indication that her vision is better is that she more frequently picks up something to “read.” What I mean is that she looks through periodicals. We no longer have any magazine subscriptions, but we do receive magazines from TCU. We have two on the table beside the chair she uses most frequently when she is in the family room. Since she can’t remember having looked at them before, she picks them up regularly. She doesn’t just look at the front cover. She goes through a good portion of the whole magazine.

Before going to bed last night, she asked me if we had anything she could read. I had to think a minute before remembering a three-ring binder in the family room. I put this together almost a year ago. I was motivated to do this by two things. First, was her brother Ken’s working on the “Big Sister” album of photos for her. Second, she has talked about doing a family album that contains information of our family and the things we have done. Frequently, she says to me, “That’s going into the album.” Or “You’re going to remember this for me, you know.” I created the contents of the binder with some of the kind of information she might like to have, but she hadn’t shown much interest in it.

A brought the binder to her and let her look through it. She was quite taken with it and spent about twenty minutes looking through it before going to bed. During that time, she wanted to show me what was in it and kept asking me if I had seen it. Sometimes she asked for help reading it. I was encouraged that she was able to read enough of it to understand it was personal information about her and her family as well as the two of us. That is a real breakthrough that is a direct result of her surgery.

She couldn’t, however, read it as well as I had hoped. The brain is the control center for everything we do. Alzheimer’s damages the brain in a way affects vision as well as just about everything else. The result is that Kate continues to have trouble seeing. It is very spotty, and I don’t have the scientific expertise to explain it. What I know is that she sees (notices) some people in a photo and not others. She does the same thing with a string of words. For example, last night she saw her grandmother’s name, Mary Katherine Franklin. She only saw “Katherine.” The only way I could get her to see “Mary” was to put my finger under the word.

I don’t expect this to change, but I do believe I can make it easier for her to read the information in the binder by enlarging the font. That would be easy. I may experiment with that today. This should give her another option to occupy herself besides her puzzles that continue to be harder for her to work.

So all-in-all her cataract surgery has been a success. I am glad we did it.

Posted on

Kate’s Intuitive Abilities Make for Special Moments

Kate enjoys life. Hardly a day goes by when I am not touched by things that she says or does. They let me know that even without a memory, she is still in touch with life through her intuitive abilities. For example, Sunday morning as we were about to leave for lunch, she saw a coaster on her bedside table. It has a picture of orange flowers on it. We have had this set of coasters for many years. She had put it on her bedside table sometime in the past few days. She had no memory of ever having seen it. She said, “Can I take this with us?” I told her it was hers, and she could take it. She took it with her as we walked through the family room to the kitchen. She stopped to look at it more closely in the light of the family room.

Walking to the car, she held the coaster close to her and said, “I don’t want to lose this.” She continued to admire it on the way to the restaurant. She said, “You’ll have to keep me from losing this.” As we pulled into a parking space, she said she didn’t know where to put it. “If we leave it in the car, you’ll have to help me find a place that nobody will see it.” She didn’t want anyone to take it. Then she decided to take it into the restaurant with her and asked if that would be all right with me. I told her it would, and she walked in with the coaster in her hand.

After we were seated and the server came to our table, Kate showed her the coaster right away. Then she placed it on the table to the left of her plate. When we were ready to leave, she noticed the coaster. She asked me if it was ours or “theirs.” I told her it was hers and that she had brought it from home. She was pleased and enjoyed looking at it all the way home. She even remembered to bring it inside, and we placed it exactly where she found it to start with. By then, she couldn’t remember that, but she was happy.

We have a lot of musical experiences that I find touching as well. Returning from lunch the other day, I turned on an album of songs from a variety of musicals. She likes all of them and started singing along with “Some Enchanted Evening.” I joined in with her. She looked at me and said, “Hey, you can really sing.” (At this point, I need to say that I am not a singer at all. I sang in several choral groups in college, but I don’t have a natural gift for singing and have never had any vocal training at all.) To me this illustrates another of her qualities that I find endearing. She is not a critic. She is impressed with just about everything that other people are able to do. There is a sad side, however. This must arise from her inability to do so many things, but I am touched by her ability to enjoy and respect whatever talent she observes in others. She really enjoyed hearing me sing. (Note: That hasn’t changed her opinion that I am not handsome and have a big nose, but she still thinks I’m a “nice guy.”)

When we got home, “True Love” by Cole Porter in the 50s was playing in the car. I started to turn off the engine when she stopped me. She wanted to hear the rest of he song. We sat there together her hand in mine until the last note when we went inside.

Yesterday she used a cup she has had about a year but never commented on until then. She was delighted by the colors on it.

These are all little things, but it makes me happy to see her enjoying herself. I am hopeful these intuitive abilities will remain with her for some time to come.

Three Hours Later

I was about to finish this post this morning when I received a phone call from my brother. When our conversation ended, it was time for lunch. Kate and I returned home about forty-five minutes ago. That’s when we experienced another special moment. It reminded me of a similar experience this past fall. The difference was that last fall she didn’t recognize our house as our current home. I was never sure, but it appeared that she either thought it was the house in which she had grown up or a previous house in which we had lived. Today she clearly knew it was ours.

It began as we entered the driveway. She commented on the house and said how much she liked it. The spring flowers on trees and shrubs are coming out, and I suggested we take a look at the back yard. We walked around the yard. She was taken with the azaleas and dogwoods.

We came back through the garage where she stopped to look at her collection of Dr. Pepper memorabilia. Once inside she loved looking from our family room through the glass doors to the back hard. As she often does, she commented on what a nice room it is. Then instead of going to the back to brush her teeth, she wanted to go to the living room. That’s when I became something of a tour guide telling her about the various pictures, knick knacks, and furnishings I thought might be of interest to her. I was right. It was really an emotional experience for her. She didn’t recognize her own or our daughter’s wedding portraits or portraits of her mother or grandfather, but she loved hearing about them. She took great pleasure in seeing her mother’s silver service and her grandmother’s china. Of course, there were also things like the fresco over the mantel and our dining room furniture that we had purchased ourselves. She hadn’t remembered any of the things she saw. Seeing things and hearing me tell her the connections to our lives was a special joy for her.

From there we went through the kitchen and back to the family room taking in other things that meant something to her. Then she wanted to lie down on the sofa in the family room while I went to brush my teeth. When I came back, she was getting up and going to the living room again. She wanted to rest on the sofa among the things she had seen earlier in our walk through. Yes, her intuitive abilities are alive and well and providing her much pleasure even though I am sure she doesn’t remember any of the specific connections to our lives I had told her only ten minutes before. That would require her rational abilities, and they are almost gone. I think we could all take a lesson from Kate.  She takes such pleasure in things that we take for granted. It’s a wonderful world.

P.S.

Just as I was about to post this entry, Kate walked in the room and saw the picture of her and her brother Ken on the cover of the “Big Sister” album he made for her. She smiled and said, “I just love this picture.” She is now resting peacefully on the sofa across from me. She’s happy, and I’m happy.

Posted on

Thoughts on Living Normally

A couple of days ago, I read a Facebook post by a friend whose 8-year-old-daughter has Down syndrome. She and her daughter were in Nashville to make a pitch to the legislature not to overlook children with special needs when it comes to the education budget. She talked about the importance of providing special needs children with as many “normal” educational experiences as possible. I am not an expert with respect to those with special needs, but what she suggests makes sense to me. That has been my approach to care for Kate.

Right after her diagnosis, we talked about how we wanted to spend our time. We agreed that we wanted to focus on the kind of things that were important to us before Alzheimer’s. We didn’t think of it this way, but what we wanted was to lead normal lives. We wanted to remain active for as long as we could. That involved travel, attending live performances, dining out, and maintaining contact with friends.

It has been eight years since Kate’s diagnosis, but we continue to be as active as possible. I suspect we spend less time at home than many people our age. We are reasonably active in getting together with other people for meals and outings like our trip to Flatrock Friday night. Just the social engagement we have with our servers at the restaurants we frequent provides a source of social contact and support. I am sure they would never imagine the contribution they make to our lives.

I wish I knew a way to assess the impact our social engagement has had on us. I am sure it has enhanced the quality of our lives and probably helped us maintain a positive outlook on life even at the present stage of her Alzheimer’s. My best guess is that Kate is just past the mid-point of Stage 6 of the seven-stage model. Life is changing, but we are still active and happy.

Over time, we have had to modify our activity. Our last international trip was four years ago in May. We love Chautauqua, NY, in the summer. We’ve spent at least a week there in each of thirteen summers, ten consecutive years until our last one in 2017. The past two years we have rarely gone to any evening events that start later than 6:00. Thus, we no longer attend the Knoxville Symphony. We have been able to continue going to live theater performances because they all have Sunday afternoon matinees. We rarely attend church on Sunday because it is difficult to get Kate ready in time. As I have frequently reported, we no longer make our daily trip to Panera for Kate’s muffin in the morning. We usually go straight to lunch. That has cut down on our social contact. Until ten-to-twelve months ago, we often spent more than six or seven hours a day away from home. That is now four to six at the most.

My background in sociology has made me sensitive to the variety of environmental factors that can affect us. That leads me to believe that my friend whose daughter has Down syndrome is making a good point that the value of living a normal life is good for her daughter and other people with special needs. To the extent possible, Kate and I have tried to live as we did before Alzheimer’s. I believe it has worked.

Posted on

A Big Success with the Sitter

A year and a half ago, I engaged sitters for Kate. On the whole, it has gone quite well. Kate accepted having them from the start; however, she has never been enthusiastic about them. More recently, as she has become more dependent on me, she has sometimes wanted to go with me when I leave or for me to go with her and the sitter if they are going to lunch. Each time I have managed to let her know that I needed to go to Rotary, the Y, or a meeting, and she didn’t protest.

Despite Kate’s acceptance, I’ve never felt fully comfortable leaving her. I’ve done it because I feel that it is important for me to have time away to do other things. It also sets the stage for increasing the sitters’ time in the future. Two experiences in the past five days have made me feel better about leaving her.

The first occurred last Friday. As I walked into the family room where Kate and the sitter were seated, I heard the sitter tell Kate that she would see her “next week.” Kate apparently misunderstood and thought she might not be coming back. Kate looked frightened and said, “You’re not coming back?” Mary repeated that she would be back next week. Kate said, “Good, because I need you.” I was happy to see that she not only felt comfortable with the sitter, but there seemed to be an emotional bond.

On Monday, we had a different sitter, Cindy. When I got home, they were engaged in a conversation, and Kate was playing a very active role in it. Cindy told me that Kate had not taken a nap and that they had been talking all afternoon. That was another victory. We had two good experiences with two different sitters.

I found both of these experiences encouraging, but the biggest victory came yesterday with Mary, our Wednesday/Friday sitter. Normally, I would leave for the Y as soon as s arrives. We had just returned home from lunch, and I wasn’t going to the Y but a dental appointment at 2:00. I didn’t need to rush, so I talked with Kate and Mary about ten minutes. I think that worked better than my leaving as quickly as I usually do. When I told Kate goodbye, she didn’t show any sign of disappointment that I was leaving or that she couldn’t come with me. The big surprise came when I arrived home. I found the two of them were still seated in the same chairs they were in when I left. I asked if they had gone out. Mary said they stayed at home and never left the family room. They talked and listened to the music playing on my audio system when I left. She added that they both rested in their chairs a short time. After Mary left, Kate said, “She is really nice.” It wasn’t just the words. It was the emotion she expressed as she said them. She had a really good time with Mary, and I felt better about having sitters than at any time since we began a year and a half ago. That was a victory.

Posted on

Examples of Kate’s Intuitive Abilities

Kate continues to amaze me with her intuitive abilities. For example, today as we walked from the car to the restaurant for lunch, she said something to which I responded differently than she expected. She was surprised, and I said, “You mean you think I’m predictable?” She laughed and said, “Are you kidding?” I don’t know that predictable is quite the right word, but I do have rather predictable patterns. She regularly makes comments about my personal quirks/behavior, and she is always right even when she can’t remember my name or who I am.

Another incident happened after we returned home. It was preceded by my playing an album of choral music that she likes. Sometimes she likes to sing along with the music though neither of us can remember all the words. One of the songs on the album is “Comin’ through the Rye.” She wanted to sing it, but we couldn’t make out enough of the words. At home, she wanted us to sing it. I told her I would have to look up the lyrics. When I did, I found the original Robert Burns poem on which the song is based. Of course, it had the Scottish expressions. That didn’t work. She asked me to sing something else. Without thinking, I started singing “Amazing Grace.” We sang a few bars before she said, “That doesn’t sound very appropriate.” I felt the same way. It just popped in my head, but it didn’t seem like the most appropriate song for us to sing at that moment. Now, I’m glad I did because it shows how sharp she can be when it comes to her intuitive abilities.