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A Welcomed Rebound

I always like to report good news. That’s especially true when we have experienced a few bumps the day before. In every instance of the bumps, we have moved on to the next day as though nothing had happened. That was true yesterday.

Kate slept late, so we went straight to lunch. She was in a good mood, and neither of us acted as though life hadn’t been perfect the night before. Because I went to a Rotary benefit last night, we didn’t have a sitter in the afternoon. That allowed Kate and me to spend the afternoon together. After lunch, we came back home where I turned on some music, and we relaxed in the family room. I picked out a number of things that I thought she would enjoy and was successful. I have been pleased that she not only seems to enjoy music even more than she has in the past, but she also seems to appreciate a somewhat wider range of music. She certainly expresses her pleasure both audibly and visibly. Among the music I played were two pieces from Handel’s Messiah, “Hallelujah” and “Worth is the Lamb, Amen.” I don’t ever recall her responding so passionately before. It is a special pleasure for me to see her so engaged in music that I love as well.

We spent about two hours and then went to Barnes & Noble for another hour and a half before returning home for me to get ready for my dinner. I suggested to Mary that she take Kate to get her usual Friday night pizza. I also set up the Les Miserables DVD in case they wanted to watch some of it. When I got home, I was pleased to see that they were both engrossed in it. This was the first time that Mary had seen it and liked it. For Kate, of course, it was like seeing it for the first time. When Mary left, Kate blew her a kiss and thanked her. She was in great spirits.

Since Kate was enjoying herself so much, we watched the remainder before going to bed. This is a three-hour production. Kate and I usually watch it in three nights. Last night, Kate had watched the entire DVD in a single sitting, and she was literally moved to tears of joy.

Music has always been special to me. Attending live musical performances has been a special part of our married life. It is only recently that she has developed such appreciation for recorded music. That makes me happy. I play it all the time. If I’m at home, the chances are pretty good that music is playing.

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Kate and Her Puzzles

We’ve been at Barnes & Noble about an hour. I’ve been doing my things on my iPad. Kate is working jigsaw puzzles on her iPad. She hadn’t made a sound for almost the entire time we’ve been here. A minute ago, she broke the silence and said, “Fun.” She was expressing her feelings about working her puzzles. I know she must be having fun because she spends at least six hours a day working them – at home, at Panera, and at Barnes & Noble. This was the first time, however, I have heard her express her feelings about it.

I told her I thought she must enjoy it, that she spends a lot of time at it. She said, “Well, I don’t spend much time.” I didn’t argue. Then over a five-minute period she said other things about the puzzles. For example, she just said, “I like the colors,” “They’re not to hard. Well, some of them can be tricky.” Now, she said, “One of the things you know when you want to do something well is not to rush it. That is really true.” Earlier she had said something about liking not having any time pressure. I said, “Or telling you that you are doing it the wrong way.” She added, “Or I told you that yesterday.”

In the meantime, I am noticing that it’s been a while since she asked my name, and, not once, has the subject of my being or not being her husband come up.

We’ll be leaving here shortly. I have a Rotary dinner this evening. It is a benefit for Alzheimer’s research, and I will be making a few remarks. I changed the sitter’s schedule to come at 6:00 this evening. This will be the first time I have left her at night. I am optimistic this will work out well. My plan is for Mary to take Kate to get her Friday night pizza. That should help them pass a little of the time. The rest of the time they can relax at home.

I just asked Kate if she were ready to go. She said, “I’m just piddling. I just want to finish this one. . . Then the next one and the next one . . .” Then she said, “You had better just say when you think we need to leave. I said five minutes would be fine. She said, “Let me finish this one first.” I am really glad she has her puzzles.

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More Ups and Downs

Yesterday was a day of confusion for Kate. Once again, we had two bright spots that balanced the down moments. One of those came after we returned from her monthly massage. We went into the family room where I picked up the “Big Sister” album her brother, Ken, had made for her and asked if she would like to look at it. I was thinking specifically about the trouble she had been having remembering her family and thought this might jog her memory. It worked beautifully. I sat down beside her, and we went through the entire 140 pages. It brought back great memories. When we finished, she started over at the beginning. She must have spent a full hour and a half looking at the pictures and commenting.

It wasn’t long before it was time to get ready for another musical night at Casa Bella. The musicians, especially the male singer, have been longtime favorites for many years. They are a little younger than Kate and I, but they know the music of our generation. I don’t think there was a single number we didn’t know. It was another great evening.

After we were in bed and ready to go to sleep, Kate said, “What’s your name?” I said, “I’m Richard Creighton, and I am your husband. We’ve been married 55 years.” She said, “Are you sure? I don’t know you.” I assured her I was right, but she still wasn’t sure. She decided to test me. She asked where we got married. I told her. She was surprised when I mentioned the church. It was the one in which she grew up. She still wasn’t absolutely convinced, however, and looked a little suspicious. I told her I loved her. She almost always says she loves me. She didn’t this time. I asked if she loved me. She said, “I don’t know.” I reached my hand to touch her, and she moved it away. She was tired and wanted to go to sleep. She said, “We’ll talk about it tomorrow.” In a few minutes, I moved next to her and put my arm around her. She didn’t push me away. Neither one of us said another word.

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A Re-run of Last Night and More

On the way to lunch, Kate asked me my name. Nothing unusual about that. Then she asked her name. I said, “Kate Creighton.” She said, “Creighton? Where did that come from?” I told her she got that name when we married. She was surprised and said, “We’re married?” I told her we were and told her her full name in which I included her maiden name. She didn’t recognize it. I started telling her that was her family’s name as we arrived at the restaurant. When we got inside, I started explaining. Then she mentioned the name of one of her aunt’s. There was clearly a spark of recognition. At least one other time while we were eating, she asked my name again.

I mentioned something about our being married, and she said, “Do we have children?” I gave her their names and told her about them and their families including our grandchildren. It was like the first time she had ever heard about any of them.

When we got home, she asked, “Are you a cousin?” I said, “No.” She said, “A friend.” I said, “Yes, I like to think I am your best friend.” She said, “My husband?”

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Another Marker

Last night before turning on another segment of Fiddler on the Roof, Kate went to our bathroom to brush her teeth. As she passed me in my chair, she said, “Are you my cousin? . . .My brother? I said, “Closer than that.” She couldn’t guess. I said, “I’m your husband.” She said humorously, “My husband? Oh, I am in trouble.”

Over the past few days, she has appeared to be forgetting that I am her husband. It is obvious now. She is clearly forgetting we are married. At the rate things are going, that will soon be forgotten; however, I don’t expect this to change her feeling for me.

One reason I feel this way is that she still retains a strong attachment to me. I am a major source of her security at the moment. I have observed this in her growing dependence on me. More specifically, she verbally expresses this dependence. For example, when I returned home to relieve the sitter yesterday afternoon, she told me she was glad to see me. Two separate times she added, “I feel good when I am with you. I feel safe.” I don’t fully understand what makes her say she feels safe, but she doesn’t know where she is or who are the people around her but me. She knows that I provide the answers to her questions and control where and when we go places. I have become her lifeline. I don’t think I need it, but that provides an additional reason for me to do the very best I can to care for her.

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A Surprise in Our Name Game

Since we started living with Alzheimer’s, we (I) have experienced many ups and downs. Kate and I fortunate to have had far more of the former than the latter. I hope that comes through in my posts. Sometimes the downs surprise me because they are so unexpected. That was the case at lunch today.

Shortly after we were seated, Kate asked, “What is your name?” She had asked that several times while we were at Panera before leaving for lunch. Then she asked, “What is my name?” I told her, and she asked, “Where are we?” I told her we were in Knoxville. I said that because that is usually what she wants to know. She frowned. I had obviously misread her. Then I said, “We’re at Tupelo Grill .” She frowned again. I decided she must mean “Where is our house.” At first, I just told her the general area in which our house is located. That was closer to what she wanted. Then I gave her the address. That worked.

Except for the part about our address, this part of our game was pretty normal. Then it took a sharp turn. She said, “What do I do?” I said, “Well, you were a school librarian.” Her eyes lit up. She didn’t seem to have remembered that. Then I said, “What you enjoyed the most and did the longest was to serve as our church librarian. You served as a volunteer for 19 years, and you were very good at it.”

This failure to remember having been a librarian took me by surprise, and I felt one of those moments of sadness that come along more often now than I would like. It was one thing when she started having trouble with our children’s names. Then it was my name. She is now having trouble remembering her own name. Not remembering that she was a librarian is not just forgetting a label. This is forgetting a major part of her self-identity.

It is not surprising that this would happen at some point, but I hadn’t anticipated its coming this soon. Like the other things that she is forgetting, I know this was just a single moment. This might not happen again for a while. On the other hand, that is exactly how everything else has started, little slips that occur once in a while. Once this process begins, it doesn’t let up.

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At least she’s not aware. (NOT)

Twenty years ago when my mother was living with dementia, I recall someone’s saying, “Well, at least she doesn’t know.” That was meant as a word of comfort suggesting that she would not have to experience the mental anguish that can accompany the disease. At the time, I felt that wasn’t right. I remember how frustrated she was when she couldn’t remember things or do things that she was once able to do.

I’ve  had much more opportunity to observe Kate, and I have confirmation that I was correct. During the last stage of the disease, people may not be aware of their impairment. For most of the way, however, they are quite aware of many things including their own failings.

Next Tuesday, it will be 7 years and 8 months since Kate’s diagnosis. She is still aware that she is unable to do all the things that she used to do. I don’t have to look far for examples. I checked on her a little before 9:30 and discovered that she was just getting out of bed. I was pleased since she has been sleeping much later. I went back to the kitchen without disturbing her. She likes to wake up slowly, and I thought it best not to rush her.

At 10:00, I went to our bathroom to brush my teeth. I noticed that she had picked up the clothes that I had laid out for her last night but left the top on her chair. At the time, she was in her room. I took the top to her. She was concentrating on her clothes, trying to make sure that she had everything she needed to wear before she got in the shower. I asked if I could help. She said, “I need something to wear.” I told her she had just about everything but a top and that I had it. She had laid the clothes out on her bed. She had the pants I had put out for her and an additional pair. Beside them she had one sock. She realized she didn’t have everything and was trying to figure out what else she needed. After I walked in, she decided to lay out her clothes on a chair next to the bed. She was confused by the fact that she had two tops. I told her I would take one of them and let her wear the other. She took one and put it on the chair. I started to leave the room, and she asked me to wait. She wanted to do this herself, but she wanted me there in case I she needed me. It took her a long time to do this. When she was finished, I said, “You’ve got it.” She gave me a doubtful look and said, “We’ll see.” She, too, knows there are times when she thought she had everything together only to discover she was wrong.

It is painful to watch her work so hard on what we would think to be a simple task, but I still like to give her a chance to do as much for herself as she can. She seems to appreciate this. One thing I do know. She does recognize she can’t do what she used to do, and it bothers her. There will no doubt be a time when she doesn’t.

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In a Cheerful Light-Hearted Mood Yesterday

Kate got up on her own around 10:00 yesterday. We were too late for Panera but right on time for lunch. One of the first things she asked when we got in the car was, “What is your name – whoever you are?” I told her. She must have asked the same question another two or three times before we arrived at the restaurant. Although she had originally asked in a light-hearted way, she was clearly serious about not being able to remember it. I said, “I guess you remember that we are married.” She looked shocked, and said, “We are?” In a few minutes, she said, “I guess we have children.” I told her we did and then expected her to ask about them. Surprisingly, she didn’t.

We came back home after lunch, and Kate went right to our bedroom and napped for over an hour. When she got up, she was ready to go. We left for Barnes & Noble. We had been in the car only a minute or two when she asked my name and then where I was from. A few minutes after that, she said, “Do you know my name?” I told her. Before we arrived a Barnes & Noble, she asked my name again. She asked again at least two more times while we were seated. At one point, I was pretty sure that she was just playing games with me and that she really remembered my name. I am equally sure that most of the time she didn’t.

I received a phone call from a friend we see at Panera. She is in a Bible study group that meets on Tuesday mornings. We often chat briefly with her as well as the man who leads the group. She said that several people had asked about us. She specifically mentioned a man with whom I have had quite a few conversations over the past few years. I have his phone number and called him. I reassured him that we were all right but that Kate’s sleep pattern has been changing. I hope this won’t be the end of this friendship. It is not the same as longtime friends that you have gotten together with over the years, but it has been a meaningful relationship. I don’t want it to end.

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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.

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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.