August, 2018 |

August 14, 2018August 14, 2018

Always Adapting

Every caregiver of a loved one with dementia knows it is helpful to adapt to the changes that confront us. I get that, but I don’t adapt at the first signs of change. In fact, I often work hard not to give in to the changes that are required. Giving in has its benefits though. The big one is that you don’t have to fret over the fact that what you want isn’t going to happen.

That’s my introduction to the change I made yesterday. You may have read one or two posts in the past few weeks that conveyed my desire for Kate to get up early on the days we have a sitter, especially on Monday when the sitter arrives at noon. I started our custom of going to Panera each morning so that Kate could get a muffin. As we became acquainted with the staff and some of the regulars, I felt the social encounters we had were good for her. It has been a time that the two of us could share a pleasant social experience that was easy for Kate.

Earlier this summer when she started sleeping later in the morning, we had less time for Panera and sometimes missed it altogether and went straight to lunch. That didn’t present a problem for Kate. She has never expressed any disappointment about missing her muffin, Panera, or the social experiences we had there. That wasn’t true for me, however. I had grown accustomed to spending one or two hours a morning with her in a social setting. I wasn’t even eating. I just had my coffee. The difficult part was giving up the social experience. Originally, I took Kate to Panerea for her, but, ultimately, I found it was as much or more for me.

Yesterday I decided I would not rush her, but I did make an attempt to wake her in time for me to take her to lunch at Panera. She had no interest in getting up, so I decided to let her sleep. I would just ask the sitter to take her to lunch for me. Having made that decision, I relaxed and went about my business. That is the big benefit of letting go. I’m not going to fret over this. From now on, we’ll go to Panera if she is up in time. Otherwise, I’ll let the sitter take her. By the way, as it turned out, Kate did get up in time for me to take her to lunch. It was almost 11:30 by then, so I called the sitter and asked her to meet us at Panera.

That only takes care of three days a week when the sitter comes. There are still four other days. There have been at least two or three days lately when we didn’t get to lunch until close to 2:00. Since I am usually up between 5:30 and 6:00, I eat an early breakfast. I’m ready for lunch between 11:30 and noon. It would be no problem to wait until 1:00, but 2:00 is stretching it. The most obvious solution to this problem is to keep something in the house to either substitute for my lunch with Kate or tide me over until then. I think I’ll just take this one day at a time. In the meantime, I’ve been snacking on a little granola. That seems to work for a limited time.

August 13, 2018

The Power of Music (Again)

Yesterday, Kate and I went to see our good friend, Ellen, who now lives in Nashville. Although I had to wake her, Kate got up, showered and dressed in an hour. That gave us time to get a quick lunch at Panera before we hit the road. We arrived in time for their Sunday afternoon ice cream. That was a little treat for us. In the past, we have always arrived later. That’s because we have frequently had lunch or a quick visit with our friends the Robinsons or Davises who also live in Nashville. I did not try to get together with them this time since I have been unsure about what time I would be able to get Kate ready. Going directly to Ellen’s avoided any pressure. This may become our regular routine.

Since Ellen was already in the dining area, we stayed there our entire two-hour visit. That has its pluses and minuses. Last time we had spent our visit in Ellen’s room. It is a nice room but a little darker than the common areas. We may split our time between the two next time.

This was our third visit to this particular facility since Ellen moved there in May. She had made the move after having a couple of seizures that, on top of the stroke she had three years ago this month, required greater care than she had needed previously. We were eager to see if there had been any change in her ability to speak. There had been a change, but it was not for the better. We could understand very little of what she said. Of greater concern was that she didn’t try to talk as much. She was always a big talker. After her stroke, she continued to talk a lot. That was a natural part of her personality, but I believe it may also have related to the fact she has been so socially isolated. She had lived in Knoxville for over forty years and has lots of friends here. It is not so easy for them to travel to Nashville. I only know of one other couple who has visited her in the past three years.

The saddest part for me is that mentally Ellen is in much better shape than the most of the other residents. If she could only talk, she might be able to establish a relationship with a couple of them. That appears to be impossible at this point.

Remembering that on our last visit, the three of us had enjoyed listening to a little music on my phone, I went thinking that we might try it again. It turned out to be even better than last time. Then I just played a few pieces of music I thought she would like. This time I played a greater variety and played music for a longer time, a full thirty minutes. At a couple of points, I was a little concerned that I might be playing too much, but she said she was enjoying it.

It may seem strange to think of the three of us sitting together in the middle of a common area of a memory care facility listening to music from a phone, but for us it was a special moment. For a short period, one of other residents joined us, but she wanted the volume turned up, and it was already as high as it would go.

We stopped when it was nearing time for dinner. The last time we stayed during dinner we found that another resident dominated the conversation. Ellen was left out. Since Ellen gets so few social encounters with friends, I want to maximize our time with her. I’m already thinking about our next few visits. I may take our DVD of Les Miserables. Even though it is too long for us to play on a single visit, she could enjoy it the way Kate and I do at home, a little bit at a time. I may also take a Bluetooth speaker for either my phone or computer. There is a tremendous amount of music on YouTube I could play for her.

Knowing that both Kate and Ellen are declining, I am unsure how long we will be able to continue our visits. Until then, we’ll do just what we do at home, take it one step at a time.

August 12, 2018August 12, 2018

Kate’s Intuitive Abilities Shine

Yesterday could have been just an ordinary day or, possibly, not as good as an ordinary day. As it turned out, it was a very good day. That wasn’t because Kate’s memory or confusion lessened at all. There were plenty of signs that her “rational” abilities continue on a downward slope.

She began the day slowly. I woke her up shortly after 11:30. She got ready for lunch rather quickly – just over an hour. On the way to lunch I played an album by The Kingston Trio, a popular musical group during our college days. I can’t remember the last time I had played it. I just thought it might appeal to Kate. She really enjoyed it.

When we got back home close to 3:00. Our housekeeper and her helper were in the midst of a major cleaning project. Fortunately, they had completed their work in the family room, so Kate and I hung out there. I played another Kingston Trio album. Kate picked up her “Big Sister” album that her brother Ken had given her in the spring. It’s a photo book that contains a large assortment of family pictures that begin at the time of her birth and goes through January of this year. She has enjoyed it immensely since receiving it.

She looked through it two times in succession. The first time I joined her as she turned from page to page adding her comments about the pictures. When I refer to her comments, I don’t mean the photos call back specific memories, at least not in terms of recalling specific facts. They are exclamatory. For example, “That’s a wonderful picture of Mother,” “Look at the way Daddy is looking at me,” “I love this picture,” or “Oh, there’s Nana.” There are a number of pictures that she singles out as favorites each time she goes through, most notably, the one of her and her brother on the cover.

She spent a good hour going through it the first time. Then she went through it a second time while I started to work on my earlier post. She couldn’t go through without expressing her reactions. This wasn’t like a silent reading of a book. She was enjoying what she saw and expressing it as she went along. That led her into talking about the two of us and how glad she was that I had become a part of the family. She mentioned what a good marriage we have had, the wonderful things we have done together, and how proud we are of our children. Then almost without skipping a beat, she asked, “What is your name?”

While she asks about names frequently, it seems like she is now focusing more specifically on my name and “Where are we?” This is a subtle difference, but I think she is losing her memory of things around her. Those are the things that are upper most in her mind. People and places that are far off simply drift out of her mind until something happens to bring them back like my mentioning our children or other friends. I’m always here, and we’re always in Knoxville. She can’t remember the names that seem most relevant at the moment and wants to know.

After finishing the book a second time, we went to dinner. When we returned home, I put on the Les Miserables DVD. We had seen most of it the two previous nights. This was icing on the cake for a day during which she had already enjoyed herself. I hope that as we go forward, she will continue to derive as much pleasure as she did yesterday. I’m going to be optimistic.

August 12, 2018

Looking Ahead and Making Changes

During the course of Kate’s illness, I’ve always tried to anticipate the future and make necessary preparations. With her changes over the past few months, I’ve been doing a few things that I have held off for some time. The biggest one involves the yard. A year or two after Kate began her “extreme pruning” activity, I began to wonder about the long term impact it would have on the shrubbery. At first, I thought it might be beneficial, but it would come at a time when she could no longer appreciate it. It wasn’t long after that when I suspected the shrubs might be permanently damaged. At the time, she had three things that occupied her time – pruning (“pulling leaves”), editing photos for a photo book on her computer, and working jigsaw puzzles on her iPad. Pulling leaves was her major activity when weather permitted. She could spend as long as 6-8 hours a day in the yard. Because she seemed to enjoy it so much, I made a conscious decision to let her pull leaves as much as she wanted even if it meant having to replace the shrubbery.

When this past spring arrived, it became clear that most, if not all, of the shrubs would have to be replaced. I didn’t want to move too quickly. I thought it might bother Kate. I didn’t want her to feel guilty. I realized she might never make the connection between her pruning and the demise of her shrubs. On the other hand, I didn’t want to risk it. Two or three months ago, I hired someone to start the project. I wanted it to be gradual so that Kate wouldn’t notice. He began by cleaning out the weeds. That’s been a big job. He is still working on that. He has another fulltime job, so he only works on Saturday. Along the way he has taken out four or five good sized shrubs. There are probably another twenty that will have to go. I think we should have the clean up done in the fall. Then we will look at planting new shrubs.

I have been surprised that Kate has had no reaction at all. She has seen the man and his wife working in the shrubs and hasn’t expressed either interest or irritation that I’ve initiated this without consulting with her. In addition to the cleaning out the flower beds, I asked them to use Kate’s existing pots for plants on our patio. I told Kate this was an anniversary present. I had hoped that she might take an interest and enjoy tending to potted plants as she has done in the past. This was an idea that flopped. It turns out that I am the one who tends to them. I really hadn’t wanted that, but that may be good therapy for me

For a long time, I have felt the need to do some serious work to the inside and outside of the house itself. I recently had all of the windows replaced. The next job is painting the outside. I’m going to wait until fall for that.

Our housekeeper passed away in April. Her daughter filled in for her until the end of July. Through a friend I found someone else. She started yesterday with a deep cleaning of the entire inside of the house. She brought a helper, and the two of them worked twelve hours. Like most people, we’ve accumulated a lot of “stuff” that we never use. I’ve spoken with her about helping me clean out a lot of these things. Chief among those are clothes that Kate will never wear again. Most of these are too small for her now. I’m going to feel better when we get organized again.

These changes are a direct result of the changes in Kate’s condition. I wanted to allow her to continue to be the one in charge of the house. That has been her role in the past. Of course, I recognize that I have gradually come to be the one to assume that role, but I haven’t wanted to do anything that I thought she might not like. At this point, I don’t think she will even notice much of what is done. A couple of years ago, I took out the tall entertainment center and the 42-inch TV in our bedroom and replaced it with a much lower cabinet with a 65-inch TV on top. I don’t think she ever realized the change. She never commented on it. By now, of course, she would not remember at all.

August 11, 2018

Increasing Dependence and Confusion

After returning from lunch yesterday, Kate and I took a moment for a break at home before the arrival of the sitter. A few minutes before Mary arrived, Kate walked into the kitchen with her iPad tucked under her arm and carrying her cup. She was obviously ready to leave for Panera or Barnes & Noble. I told her that I was going to the Y and run some errands. She quickly, but meekly like a child, said, “Can I come with you?” I told her that Mary would be staying with her. She accepted that without a problem. It wasn’t long before the doorbell rang. Kate said, “Who is that?” I told her it was probably Mary who was coming in at that very moment. We both greeted her, and Kate seemed fine. Then I said I was going to the Y. Once again, Kate asked if she could go with me. I told her that Mary would be with her. She said, “What if I want something to eat?” I reminded her that Mary has a card she can use at Panera to buy whatever she wants. Again, she seemed to accept that without any questions. Then I left.

When I returned, she and Mary were in the family room with the TV on. Kate was working jigsaw puzzles on her iPad. Mary left. I walked over to Kate’s chair and kneeled so that I could look directly in her eyes. I told her I was glad to see her and that I loved her. She said, “I love you too even if I don’t know who you are.” I said, “I think you really know who I am, but you have trouble remembering my name. Isn’t that right?” She looked very puzzled but didn’t speak. I said, “You do remember that I am your husband, don’t you?” She didn’t answer. Then I said, “Knowing my name is not very important. You do know that you have known me a long time. We’ve been married 55 years, but it’s not important that you remember that. The important thing is that we love each other and that we can enjoy our lives together.” She nodded. The way she had responded or failed to respond to my questions makes me think that the connection with my name is almost gone and that her awareness of the nature of our relationship (that is, that I am her husband) is disappearing as well. I really do take comfort in the fact that we will still be able to enjoy our lives together, but there is no denying that we are in the process of a significant change. I didn’t need anything to convince me of that, but there was still more to come.

We went out for our Friday night pizza. When we got home, she wanted to brush her teeth. She stopped as she entered our family room and said, “I’ll follow you.” This is the second time recently that she has done this. She just didn’t remember how to get there. We went back to the family room after brushing our teeth. I turned on the evening news. She worked on her iPad.

About thirty minutes passed, when she asked for my help with her puzzle. She has been doing this more frequently in the past few weeks, especially the past week. She had completed all but 4 pieces of a 16-piece puzzle. Before I could do anything to help, she said, “Just complete it for me.” I did, and helped her get another puzzle. She was having a problem figuring out how to do it. This is a new problem.

I was seated across from her writing this post when I noticed that she was sitting in her chair with a confused look. I decided it would be good for her to take a break and enjoy something more passively. I suggested we go to our bedroom and watch a little of Les Miserables. She liked the idea.

She was quickly engaged and enjoying herself. It was just as though this were the first time she had seen it, not the fifth time in five weeks. We took a break at the intermission. She asked, “Where are we?” I said, “Knoxville, Tennessee.” In a moment, she asked, “If someone asked me where I live, what should I say?” I said, “I would say that I live in Knoxville, Tennessee. We’ve lived here a long time. I was an English teacher and then a school librarian before retiring and serving nineteen years as our church’s librarian.”

That led her to talk again about our good fortune to find each other and how much we enjoyed the same things. I told her I felt the same way. Then I took my shower, and she put on her night gown. When we were ready for the next half, she was tired and went to bed. It was before 9:00, so I stayed up a while. I offered to turn off the TV, but she said she was enjoying listening to the music. In a few minutes, I got in bed with her. She kept repeating how much she liked the fact that we both liked things like this and could share them together. This is something she has picked up from me. I was glad to see that it must have had an impact. Otherwise, she would never have remembered it. I am especially glad that we have had the good fortune to share a love for this particular musical. I don’t think I would have ever played it five times in five weeks were it not for her, but I have enjoyed it every bit as much as she.

I was glad we were able to end the day on a high note. I still feel sad about her increasing confusion and loss of of memory, but I treasure her moments of pleasure. They are mine as well.

August 10, 2018August 10, 2018

Two Events That Brightened Our Day

Yesterday our pastor had invited Kate and me to lunch at noon. Normally, that would lead me to be concerned about Kate’s waking up in time to get ready. That was no problem since we had two of the work crew who installed our new windows finishing a couple of things. They were here at 9:15. I let her know that one of the workers was in the house and suggested she take her shower and dress in our bedroom and bath. She got up easily which gave us time for almost an hour at Panera before meeting our pastor.

We had a grand time at lunch. Our pastor and his wife had just returned from a trip to Rwanda where their daughter is doing research related to post traumatic stress disorder. We enjoyed hearing about her work as well as their hike through a gorilla preserve. We also shared some of our favorite travel experiences.

After lunch, we went directly to our car dealer’s for a routine service appointment. They have a nice waiting area where we stayed while they worked on our car. I think Kate thought of it as another alternative to Panera or Barnes & Noble. I know at one point she said something about its being a very nice place.

We relaxed at home for an hour before going to Casa Bella for jazz night. The music was unusually good, and we had a guest from Houston at our table. She manages a project that her IT company has with the state of Tennessee. On a previous visit to Knoxville, she had eaten at Casa Bella and learned about their music nights. Normally, she would have flown back to Houston in the afternoon but stayed over a night for jazz night. She is an interesting person, and Kate always enjoys meeting someone with a Texas connection. She sat beside Kate. When she asked her where she was from she couldn’t immediately remember the city. I jumped in and said, Fort Worth. After talking with her a few minutes, Kate asked her where she was from although she had just finished telling us that she was from Houston. No one acted as though they noticed anything inappropriate. I suspect the couple with whom we always sit noticed since they are aware of Kate’s Alzheimer’s.

When we got in the car for home, Kate said, “It’s been a nice trip so far.” She often thinks she is in Fort Worth. I suppose that is what she was thinking.

At home, I stopped in the kitchen for a moment as Kate walked into the family room. She called to me. I went to her, and she said, “I’ll follow you.” She obviously didn’t know how to get to our bedroom. It’s possible that she didn’t even recognize that we were home.

Even with this confusion, we had had a nice day. I am very glad she can still enjoy so many things.

This morning she surprised me when she was ready to leave for Panera shortly after 10:00. She was holding a pair of socks in one hand. I said, “I see you have some extra socks.” She said, “I always need extra socks.” I needed to do a few things before we left and asked if she could work on her iPad while I finished up. After she was seated, she said, “Could you hold these” and handed the socks to me. I said, “Yes” and took them from her. We had time to get to Panera where we saw several of our friends from a nearby Catholic church who are regulars. We hadn’t seen them in a couple weeks and had been wondering about us. I told them that “we” had been sleeping a little later recently.

August 9, 2018

More of the Same

Yesterday was a day for the sitter, so I was eager to see if I needed to wake Kate for lunch. I didn’t. She got up a little earlier than I would have liked, but we didn’t have enough time to go to Panera. We went directly to lunch. She was very unsure of herself when she was getting dressed. I had gone back to check on her. She didn’t want me to leave until she had put everything on. This is another sign of her growing dependence on me. The past two days I have been putting her clothes out for her. She hasn’t complained. That tells me that she finds it helpful. It removes the burden of choosing what to wear, something she has always preferred to do.

As soon as we got home from lunch, she said she wanted to rest a while. She was in bed when Mary arrived and came to the bedroom to say hello. Kate greeted her warmly and expressed no discomfort that I was leaving. I came back an hour early yesterday to meet an electrician to fix an electrical outage in our bedroom. I was surprised to find that Kate was still in bed though awake. Mary said she had been there the entire time she was there. That was three hours. It is very rare for her to rest that long. It makes me think she felt uneasy with Mary. I don’t mean that there is a particular problem with Mary herself but that her comfort level is greater with me. This seems to be occurring with her growing dependence on me.

As soon as Kate knew I was home and that Mary had left, she had her iPad under her arm and was ready to leave the house. I told her we needed to let the electrician finish his work. He did that quickly. He found the problem was a short in our ceiling fan. I’ll need to buy a new one. He disconnected the fan to prevent any further problem. Although it was getting close to dinner time, we dropped by Panera for about thirty minutes.

We finished the day by watching another portion of Les Miserables. That seemed like the best part of her day. At least, it produces the greatest emotional response from her, and it’s all positive. I wonder if or when she will tire of seeing it. Until then, I find this a great way to entertain her for an hour or so. Last night, I actually stopped it because I thought she needed to get to bed to make it easier for her to get up this morning.

She asked my name several times yesterday. One of those came right after telling me she loved me. This is not the first time I have observed this juxtaposition of comments. It always surprises me. It is another good example of the difference in one’s memory of names from her feelings.

August 8, 2018August 9, 2018

Memory Loss

Kate is moving quickly to a complete loss of names. At lunch and on the way home today, she quizzed me about my name, her parents’ names, and our children’s names. It isn’t as thought this is the first time, but she seems to be struggling even more now. I don’t mean that she expressed any outward frustration over her obvious memory loss. She didn’t. It was the whole nature of the conversation that made her efforts seem like a quiet struggle.

She began by asking my name. When I told her, she asked me to repeat it again. Then she tried without success. At one point, I said, “Could I ask your name?” She had to think a minute before answering, but she got it.

Then I asked if there were any other names she would like me to help her with, “like our children’s names.” She said, “We have children?” I told her we did and proceeded to tell her their names and where they live and about their spouses and children. Her eyes began to glaze over. I said, “I think I may be covering too much.” She nodded agreement.

When we got up to leave the restaurant, she said, “What is his name?” I didn’t know who she was talking about and asked her. She said, “The one you were talking to.” It had been about ten minutes since I had introduced her to someone I knew from UT and the symphony. She was frustrated and said, “You could help me if you just gave a straight answer instead of going off on these other things.” I backed off, and nothing more was said. This is not the first time I have asked her to explain something she has said. I don’t think she has ever explained. She just drops it. I think it is too hard for her to remember what she was trying to say.

On the way home, she told me that she wanted to take a nap when we got home. Sometimes she says this but forgets. Today she got in bed after brushing her teeth. She was in bed when the sitter arrived.

She continues to pick up things, mostly clothes, and take them in the car with us. Today she brought a wool turtle neck sweater and a pair of brown shoes. Getting out of the car a the restaurant, she asked about taking the sweater inside. I told her I didn’t think she would need it. She left it. When we got home, she asked if she should take the sweater inside. I told her that would be a good idea and suggested taking in her brown shoes as well. I brought in two decorative pillows from our bed that she had brought with her the other day.

This morning she had rummaged through one of the drawers in my bedside table. I didn’t see anything he had taken out, but I have recently found several things she has taken out of these drawers. My suspicion is thatn she is confusing my table with the one she has on her side of the bed. That reminds me that the other night she got in bed on my side without any awareness she had done so.

August 7, 2018August 7, 2018

More Confusion

Kate got up without my having to wake her yesterday. We made it to Panera and also got her lunch there without any rush to get back home for the sitter. On the way there, she said, “What would you like me to call you?” I said, “Do you mean my name or my relationship to you?” She wanted to know my name. That occurred several other times during the day. I might not even mention it, but she was also experiencing more confusion yesterday. That and the changes in her sleeping tell me we are headed for the part of this journey I would like to avoid.

A few minutes before Anita arrived, I told Kate that I would soon be leaving for Rotary and the Y. She gave me a look of displeasure. I told her I didn’t like leaving her, but I appreciated her understanding. She seemed to accept that and asked what she could do. I told her that she and Anita could go to Panera or they could spend some time with her family photobooks. Her eyes lit up at the mention of Panera. She said she wanted to brush her teeth and asked me which bathroom she should use. I chose the one she uses most often.

She was still brushing her teeth when Anita arrived. I went back to tell her and to say good bye. Then she asked me if he could use the toilet. I may not mention it much, but one of the changes over the past few months is asking if she can do one thing or another. At first, I thought she was asking for permission. Now I am reasonably sure that she doesn’t trust her own judgment and just wants to know what she should do. Later in the day, she asked if she should take her nightgown with her to dinner. Most of the time she doesn’t ask. For example, on Sunday she brought two bed pillows with her when we went to lunch.

When I was about to leave for Rotary, I said goodbye and walked toward the door. She called my name. That’s a good example of the fact that she doesn’t always forget my name. I turned around to see what she wanted. She whispered, “Aren’t I going with you?” I reminded her that I was going to Rotary and that Anita would take her to Panera. She asked, “Can’t we follow you?” As usual, Kate was very cordial to Anita. I didn’t detect any sign of a problem with her. It’s just that she feels better when I am around.W hen I returned home, I found Kate and Anita trying to locate photos on Kate’s iPad. They had apparently found them while I was gone but couldn’t figure out how to get back to them.

Kate looked more confused during the evening. She didn’t display any indication of anxiety or concern about her memory, but she just looked like she didn’t know what to do next and wanted my guidance. She usually works on her iPad right after dinner. She started but quit in a few minutes. I think she is having more trouble operating her iPad and felt like taking a break. I picked up one of her photobooks. She enjoyed that. When it was time for me to take my shower. She returned to the iPad. I suggested it was time for her to get ready for bed. She readily accepted that. I am now staying with her as she puts on her gown. She gets confused as to what to do. She frequently takes off the pants she has worn that day. Then she puts her night gown on. This was followed by putting her pants back on under the gown. Everything is getting more challenging for her. I am glad to help, but it is sad to watch her growing dependence.