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More Unusual Things

Kate continues to make changes that I see as signs of the progression of her Alzheimer’s. One of those has been that she has paid less attention to her iPad and more attention to her photo books in the past couple of days. The good thing about that is that it provides her with two different activities instead of just one.

We often think of the memory problems of people with dementia as forgetting the names of people, places, and things. It also involves procedures or steps to accomplish a task. Kate is having more problems with these kinds of things. For example, she has started asking me what to do with her napkin when we go to a restaurant. Last night I told her to put it in her lap. She didn’t understand and asked me to show her. I got up and placed the napkin in her lap. Similarly, she is has trouble knowing where to put the flatware. When she brushes her teeth, she sometimes forgets to put toothpaste on her brush. I have started doing that for her. She is dependent on me for help with a host of other things like that.

We had an unusual experience around 1:30 this morning when she was disturbed by the way her nightgown had crept up. She tried unsuccessfully to straighten it out. Then she wanted me to help her. I had trouble because she couldn’t understand when I asked her to roll over so that I could pull it down. At one point, she said it was all right. The next moment she complained again. We went through the same routine a couple of times. I got out of bed and went around to her side. I suggested she stand up to make sure we had it pulled down all the way. She couldn’t understand what I wanted. I did the best I could and didn’t see any sign there were any annoying wrinkles in the back of her gown. She was finally calm and said, “What now?” I told her we could go back to sleep, and we did.

An hour later, she said, “Where am I?” I told her. Then neither of us said anything else. She was pulling her hair as she does so often when she goes to bed. I don’t know how long she was awake. I do know that she spoke to me an hour after that. I don’t remember what she said.

I wish I knew exactly what she is thinking. My impression is that her brain is trying to process a lot of things that she can’t understand. Everything must seem terribly confusing.

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The Pleasure of Intuitive Thought

I can’t stress enough how much pleasure Kate and I have enjoyed because she has retained her intuitive abilities. They are the ones that depend on her direct experience with the world around her through her senses. She doesn’t have to remember the names of people, places, and things to enjoy beauty, music, and connections with people. I am encouraged by the knowledge that they can continue much longer than we imagine.

When we visited Ellen in her memory care facility the other day, I took notice of the way in which the residents expressed their pleasure with the singing led by Emily, the music lady who visits the facility two Sunday afternoons a month. With the possible exception of Ellen, all of the residents are much further along in their dementia than Kate, but they were delighted by the music. Only one of the ten or so residents took the floor and danced, but one other remained in her seat tapping her feet and her hands with the beat. There were many smiles around the room. It was a moment of pleasure for them and for Kate and me as well. Yes, we sang along with them.

I am glad we don’t have to depend on someone to come in twice a month. We play music all the time. It is a rare moment when music is not playing. We never tire of it. In fact, Kate’s senses seem to be more alive now than ever as her rational abilities fade away. I witnessed a good example of that yesterday afternoon. First, a digression.

Even during the winter when the trees were bare, Kate enjoyed looking at the dense growth of trees in the neighbor’s property behind our house. During spring, she took pleasure in the growth of new leaves. More recently, I put out a variety of potted plants on our patio and two pots of violet colored petunias inside our family room. Every time she walks through the room she stops and looks at all of them. Each time is like the first time she has seen them. She loves to bring my attention to several that are her favorites.

When the sitter left yesterday afternoon, Kate was lying on the sofa facing the sliding glass doors to our patio and the neighbor’s property. Generally, she has wanted to leave the house as soon as the sitter leaves, but she was enjoying looking at the trees. I put on an album by Alfie Boe. It began with “Bring Him Home.” That has always been a favorite of hers. That didn’t stop her enjoyment of the beauty outside. It just added an extra measure of pleasure for her. When the album was over, I played two different renditions of “Send in the Clowns,” another longtime favorite. Thirty minutes passed before I suggested we look at one of her family photo books. She said, “I’d like that, but let’s do that later.” She just wanted to enjoy the beauty of nature and music. I kept looking over to see if she might be falling asleep. What I saw were beautiful expressions of pleasure. Often she was mouthing the words to the songs. Occasionally, she would point out something she wanted me to see.

After dinner last night, I gave her the “Big Sister” album. She spent about an hour looking at it. Even though she doesn’t recognize everyone, she enjoys looking through it and other albums.

I have been increasingly concerned about the difficulty she has working puzzles on her iPad. That has been so important for her for such a long time, but maybe her intuitive abilities will open other doors for pleasure in the days ahead. I hope so.

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Kate’s Dependence on Me

As Kate has moves from one stage of her Alzheimer’s to another, there is never a clean break in her behavior. It is always a gradual process in which she gradually begins to stop doing things she did before or starts doing things that she didn’t do before. I do, however, have moments when I recognize that the change has become a fundamental shift from the way the was before to a new state. That is the way I feel about her present state of dependence on me.

She continues to assert her independence at times when I help her with daily activities like getting out of bed, helping her dress, holding her hand as she goes up or down stairs, and a host of other little things. The difference now is that they often take me by surprise because they are so much less frequent than in the past. The present norm is that I assist her with almost everything. Yesterday was a good example.

It was Wednesday, another afternoon for the sitter. I always feel under more pressure on those days because I want to let Kate sleep as long as I can but also give her as much time as possible so that we can get to lunch and return home in time to meet the sitter. Generally, she needs about forty-five minutes to an hour to get ready if she doesn’t take a shower. As I reported previously, she didn’t get up at all before I left on Monday. That has occurred only two or three times in the past, but it is hard for me to be sure when to wake her.

Yesterday, I wanted to leave for lunch about 11:30. With that in mind, I started playing some soft music about 10:30. At 10:45, I went in to wake her. I found she was awake but still resting happily. I could tell by the smile on her face that she was in a good mood. I sat down on the bed, and we chatted a few minutes. I told her I would like to take her to lunch and asked if she would like that. She smiled and said she did, but she was still very relaxed though I wouldn’t say groggy or confused. I changed the music to the musical Annie. She likes that, and it’s very upbeat and cheerful. I left to get her clothes.

When I returned, she hadn’t moved. I told her gently it was time to get up and she extended her hand for me to help her sit up. Then she said, “What now?” (She often needs me to tell her step-by-step what to do.) I suggested she go to the bathroom and that I would show her where it was. I helped her out of bed and led her there. She wasn’t sure what to do when she reached the door. I pointed to the toilet and said, “Toilet first.” When she was finished, she said, “What now?” I told her to wash her hands and brush her teeth. She has forgotten that she has a soap dispenser and how to use it. I asked her to put her hand under the nozzle. She didn’t understand. I showed her with my hand. She still didn’t understand. I took her hand and held it, gave her some soap, and told her to put her hands under the faucet and rub them together. She is also forgetting about using her toothbrush. Sometimes she just puts toothpaste on her finger and rubs in on her teeth. I picked up her toothbrush, put toothpaste on it, ran in under the faucet and gave it to her. I won’t go through the routine for dressing, but it is very similar. I guide and help her step by step. The only time she made any effort to assert her independence was while she was dressing, and that was minimal.

Her dependence is also expressed in her feelings about me. She needs me. When I returned home in the afternoon, she was lying awake on the sofa. Mary was seated in a chair across from her. When she saw me, she smiled and started to sit up. She said, “You’re one of my favorite people.” I went over and helped her to her feet. Mary said goodbye and turned to leave. Kate called to her and asked her to wait a minute. Mary turned around, and Kate put her hand on my shoulder and said, “He’s a nice man. A really nice man.” I don’t know if she recognized me as her husband at that moment, but she does sense that I am important to her. This goes along with her other comments about feeling “safe” with me.

As soon as Mary left, she wanted to know what we were going to do. I told her we would go to dinner. Before leaving, she looked at several family photos on top of our entertainment center. I walked over and looked along with her. Then she said, “Will you take me home?” She continues to think we are in someone else’s home. It isn’t constant. We talk about our home and things she likes, but she moves back and forth between knowing it’s our home and thinking it’s not. It is a challenge for me to know exactly what to say at any given moment. Sometimes I play along. Sometimes I don’t. For example, she was disappointed when we got home from dinner. She had wanted to go “home.” In that case, I told it was our home, and I would show her some of the things she likes about it. She didn’t say anything, but she didn’t mention any dissatisfaction once she was inside.

Another sign of her dependence is how much she needs my help staying occupied. That is something that has a greater impact on my personal time. Last night is another good example. Our general after dinner routine is for me to watch the evening news while she works on her iPad. As I have noted previously, it is getting harder to her to work her puzzles. She needs my help. Last night and several other nights recently, I have gone back and forth between my chair and hers to help her. That makes it a challenge to watch the news. After doing that several times last night, she put her iPad down and sat there looking somewhat frustrated. I suggested that we look at one of her photo books. We sat on the sofa and went through most of the “Big Sister” album. She was interested, but it was unusually difficult for her to recognize or remember “key players” – her, her brother, her mother, and her father. Even in photos that were side by side, she found it difficult to identify her brother and her father. She did better recognizing herself and her mother, but far from consistently. I tried to explain that the book focused on her and her brother and that if she just guessed who the boy was in a picture, she would be right if she said her brother. She could never have grasped that. As a consequence, I had to identify the people in almost every picture. Before we finished, I went to take my shower while she continued going through the album. She still seems to derive pleasure from looking at the pictures even though she doesn’t know who the people are. I am grateful for that but can’t help wondering how long it will last. I have always made an effort to go through the albums with her. It is something we both enjoy, but it is also nice for her to be able to enjoy them by herself.

My feeling about Kate’s increasing dependence is much the same as it has always been. Some of it makes caring for her easier, but it comes at a price. I would like her to be as independent as she can for as long as she can. She likes to be independent. I think that is true for most of us. It is sad to see her having to depend on me so heavily.

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Something New, A Sign of Things to Come?

Yesterday was my day for Rotary, and that means the Monday sitter, Cindy. As I typically do, I went to wake Kate about an hour before she arrived. I turned on an album of cello adagios a short time before going to the room. When I got to her bedside, she was sound asleep. I said good morning to her softly. She didn’t respond at all until I sat down on the bed beside her. She looked at me and smiled but didn’t say anything. I explained that it was my Rotary day. I also reminded her that Cindy was the person who takes her to lunch. Then I told her I would like to help her get dressed before Cindy arrived. She indicated that she didn’t want to get up. I asked if she wouldn’t prefer that I help her get ready rather than Cindy. She said, “I can dress myself.” She wanted to rest.

I left the room and came back about two or three other times. We went through a similar conversation with the same results. She said she wasn’t getting up. By then it was close to 11:45. I felt that my only choice was to leave her and let Cindy take care of getting her up later. When Cindy arrived, I took her into the room to let Kate know that she was here. Kate greeted her with a smile and said she was glad to see her. While they talked, I left.

When I got home four hours later, I saw that Cindy was sitting in the family room alone. Kate was still in bed. Cindy said that she had gone in several times to see if Kate wanted to get up. She said she wanted to stay in bed. I chatted with Cindy a few minutes and then went to check on Kate.

She was awake. At first, she didn’t appear to recognize me. I said, “Are you glad to see me?” She said, “Yes,” but without a great sound of relief. At that point, I knew she had been in bed for at least nineteen hours without having gone to the bathroom. I’ve heard other caregivers’ reports of a variety of “toileting” or “hygiene” issues. Fortunately, we have had only minimal experiences with bladder control. This time it was bladder and bowels. It could have been worse. She didn’t have diarrhea.

I said, “I bet you would like to go to the bathroom. I’ll take you.” She didn’t hesitate. She sat up and sat on the bed. Before helping her up, I said, “I’ll be glad to help you. Do you know you I am?” Rather firmly, she said, “Yes, you’re part of the family.” I said, “Do you know the relationship?” She said she didn’t, and I told her. She said, “Oh.”

I took her to the bathroom and prepared the shower for her. I didn’t have to coax her. She was ready. She took a long shower. While she was showering, I put the sheets and night gown in the washer.

When she was finished, she wanted me to help her dry off. Because she had been in bed so long, I thought she would not want to get in bed after her shower, but she did. She relaxed in bed for about thirty minutes before I got her to dress for dinner. At that point she seemed quite normal and even referred to me as her husband. We went to dinner at Chalupas. I was surprised that she didn’t eat all of her food after not having eaten since dinner the previous night.

We came back to the house and had a very nice evening with the news, iPad, and music before turning in at our regular time. The day ended as though nothing of significance had happened. I was concerned that she might have trouble going to sleep, but she didn’t. She is still sleeping as I finish this post.

Having reflected on yesterday’s experience, I imagine that she wanted to go to the bathroom but didn’t know where it was and didn’t feel comfortable having Cindy help her getting to the bathroom, showering, and getting dressed. Before she got in the shower, I asked Kate if she had been scared. She indicated she had. It had to have been an uncomfortable experience for her. I’m puzzled by the fact that she didn’t call for me. Cindy went in several times, but she probably couldn’t remember Cindy was there for long after she went back to the family room. She must have felt alone and didn’t know what to do. I suspect she was awake the whole time. I hope this doesn’t happen again. If it does, I hope I am here.

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A Visit With Nashville Friends

We drove to Nashville yesterday afternoon to have dinner with longtime friends Jan and Scott Greeley. Kate and Scott have known each other since infancy. Their mothers were friends and pregnant with the two of them at the same time. We spent the night in a hotel and will have lunch with them before going home this afternoon.

It had been about six months since we last saw them. Kate has changed so much since then that I was eager for us to visit before she declines much more. I am glad we did. This was the first visit with any of our friends in which Kate’s changes have been so obvious. I had already prepared them in terms of conversation with her. What I hadn’t done was to let them know of her physical changes as well. In fact, it is something I have only mentioned in passing in my blog. They discovered this before we even got in the house.

They saw us drive up and came out to greet us. We walked up two or three steps to enter their house. Kate is fearful of falling, and she struggled to get up the steps and into the house. She also expressed audible expressions of anguish. This, too, is something that is common. As we entered the house she wanted to hold my hand. This is something that has become increasing common just in the past few weeks. She is very unsure of herself in unfamiliar places. It’s more than a fear of falling. She doesn’t know where she is going, so she holds my hand to guide her.

Over the past few days, I had been trying to refresh her memory about our relationship with them. Of course, I know that she can’t remember, but I wanted to try anyway. It was of no use. Even after reminders as we got close to their house, she had no idea where we were going and who we would see. For the most part, she handled herself well. I don’t think she said or did anything that suggested she didn’t know them. I believe she felt a general sense of familiarity with them but not as strongly as I had hoped.

The Greeleys are making a trip to New Zealand in December and had asked me to bring pictures from our visit there in 2014. We chatted about hour before looking at our slides. Kate was tired and wanted to lie down. She took a seat in a lounge chair and rested while we continued the slide show. When we were finished, we walked into the den where Kate was resting. Scott said something, and Kate said, “You’re a pretty nice guy, and I don’t even know who you are.”

Going out to eat gave the Greeleys another sign of her physical challenges. There was nothing dramatic, but she walked very slowly. She was unsure of herself as we entered the restaurant. She wanted to hold my hand most of the way to our table. Getting into and out of the booth she seemed like a person much older than she is.

I find moments like this to be sad ones. Because of their history together, Kate has always felt very close to Scott. It was sad that she couldn’t remember him. He and Jan gave her two photos taken when the two of them were in high school. I will put them in the three-ring binder that I call her memory book, although they didn’t prompt the enthusiasm that I would have liked. Kate has clearly reached a new stage.

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Confusion and Frustration

Yesterday was unusual in that the day began without a lot of apparent confusion. I mean that she was happy from the start and didn’t ask my name or hers or where we were the entire day. On the other hand, she experienced a good bit of confusion and frustration late in the day.

As often happens, she asked what she could do when we got home from lunch. I gave her the usual options of working on her iPad or looking at her photo books. She chose the iPad and walked over to the sofa. She asked if she could lie down. I told her that would be fine. Then she wanted to know if she could take off her shoes. Again, I told her that was fine.

This was about 2:00. She spent a little over two hours resting. I believe she was awake most of the time. At least once, it looked like she was asleep. Shortly after 4:00, she looked over at me. I asked if she would like to go out for ice cream. I was sure she would say yes, but she said no. She wanted to continue resting.

After another ten minutes, I asked if she would like for us to look through one of her photo books together. She liked that, and we spent the next forty-five minutes looking at the album of her mother’s family. This time was different. She was really working to remember who each person was as well as all the accompanying information as if she were preparing for a test. Since she was unable to remember any of these things for even a few seconds, she kept asking me to repeat what I had just told her. We spent a good ten minutes just trying to learn the names of the four members of her mother’s family whose picture was on the cover. I think we only got to move forward because I flipped to the opening page, and she focused on it. Despite the trouble she was having, we went through the entire book before I suggested we go to dinner.

After dinner, she usually wants to remain in the family room for an hour or so before going to our bedroom. Not so last night. She wanted to go directly to the bedroom where she began to work on her iPad.

She quickly ran into problems. Usually the most common problem is her getting into the store when she wants to get a new puzzle. She has a hard time remembering that all she has to do is touch one of the puzzles that are pictured. Instead, she touches a button in the top right-hand corner of the screen. That takes her to the store. This happened several times, but the bigger problem was simply figuring out how to put the pieces in their proper places.

We both became frustrated when I couldn’t explain that some pieces have a flat side that goes next to the edge that defines the area where the pieces should be placed. I was never able to get her to understand. When I tried to show her the line that makes a frame around the space where the pieces are to go, she simply couldn’t see it. This is another instance in which her vision is a major part of the problem. It was more than that, however. She couldn’t grasp that the flat side of a puzzle piece must go along the edge of the frame/border. Finally, I suggested she look at one of her photo books.

I went to the family room and brought back the “Big Sister” album. It has always been a winner. Kate’s interest begins with the cover photo. She recognized the two children as her and her brother Ken. I thought we might be off to a good start except that she didn’t comment on their smiles. They are normally the major drawing point for her.

She looked at the picture a moment. Then she asked me what she was supposed to do with it (the photo album). I said, “Just open it and look at the pictures.” She said, “How do you do that?” (She occasionally gets confused about books or magazines. She thinks they work like her iPad. Sometimes she is confused about opening her iPad as well.) I opened the book. She asked, “What do I do now?” I said, “This is a book of family photos. You just look at them and then turn the page to get other pictures.” She said, “Show me how.” I knelt down beside her chair and asked her to look at the pictures on that page. She looked, but she had a blank stare on her face. I couldn’t detect any sign of recognition or interest. It was as though all she could see was a page with a bunch of stuff on it, something I understand is a common experience for someone with dementia.

She wanted my help, and I proceeded to express the comments that she usually make when she has looked at the album on previous occasions. I was careful to talk about the smiles or the photos where there were no smiles. I identified each of the people in the pictures. As we focused on each picture, she kept wanting to touch the picture the way she touches the screen of her iPad. She couldn’t understand that the pleasure she could get from the photos was just looking at them. I tried to help her for about ten minutes before she said she was tired and suggested she might be able to understand better in the morning.

I helped her get ready for bed and put on a Barbra Streisand album that she likes. I left the room for a few minutes. When I returned, she said something about the woman. I would have thought that she was talking about Streisand because she often asks who is singing, but it sounded like she was talking about a woman who was in the house. I asked her what woman she was talking about. It was Streisand after all. She told me she had been talking to her. It is not unusual for her to ask me if I am the one singing when she hears a man’s voice. I guess she thought Streisand was in the room with her. I didn’t try to get her to explain any further.

The experiences of the day were further evidence (as though I needed it) that Kate is on a steeper decline than in the past. I was quite troubled by her difficulty with her puzzles and the photo book. These have been two great sources of entertainment for her. I am sure that working on the iPad will be a thing of the past in the upcoming weeks or months. I hope I am wrong. I am more optimistic about the photo books. As she uses the iPad less, she may experience less confusion about what to do with her photo books. In addition, I expect her interest in family will continue a long time to come.

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Kate’s Last Pedicure

Kate has always enjoyed manicures and pedicures, and I have periodically taken her for both since her diagnosis. Now, however, she no long remembers the procedures and the little things she is supposed to do. The last couple of times I have stayed with her the whole time just in case she needed my help. It has worked out, but her insecurity on the previous visit made me more cautious. I made an appointment yesterday afternoon.

When we entered the salon, a different person was at the reception desk, so I pulled out one of my Alzheimer’s cards and slipped it to her. Although that was in advance of any problems, it turned out to be a good thing. I walked her back to the chair to help her get seated. Existing customers were in the seats on either side of her. It turned out getting in the chair was an ordeal. That was partially due to the fact that she had to go up a high step to get into it. The other part involves her eyesight and difficulty understanding directions. She apparently couldn’t see or didn’t recognize the chair itself. Despite my efforts to direct her by putting my hand on the seat of the chair and trying to get her to face it, she struggled to understand what we were asking. I should add that the woman who was to give her the pedicure and the woman sitting in the chair to her right were also trying to instruct and guide her. Although we were all trying to help, I suspect we added a measure of confusion. During this process, Kate let out a scream that was easily heard throughout the salon. All eyes were on her. That was just the beginning.

As luck would have it, the woman next to her was a retired nurse and very understanding. She introduced herself and explained the procedures Kate experienced. That began with the warm water running into the tub at her feet. She was frightened at first. The nurse had a very soothing voice that put Kate at ease at least as much as she could in what had to be a strange situation for her. I thought that at some point she would have some sense of familiarity with the process, but that never happened.

I brought Kate’s iPad to her chair; however, I put it down on a step to her side in our effort to get her seated. She didn’t realize it was there. It wasn’t long before she wanted it. The nurse gave her a magazine. I realized she was looking for her iPad and went over and gave it to her. I think the nurse was surprised that she was able to work an iPad. I wasn’t in a position to explain that she has only minimal capability to work her puzzles and that, with some difficulty. It didn’t take long for her to see that for herself. Kate finished one puzzle but didn’t know how to get to the next one. As usual, she made her way into the store. The nurse looked over at me and said she didn’t know how to help her. I intervened and showed her.

We had been there quite a while, when I noticed that Kate and the nurse were talking. The nurse mouthed that she was looking for her “mother.” I am sure she was looking for me and just said mother. She frequently mixes gender and relationships. The nurse showed Kate where I was sitting. She waved to me, and I waved back. A little later, the nurse called me again. This time Kate had taken her feet out of the tub of water. The nurse explained that the water was to soften the skin on the bottom of her feet so that they could smooth it out. Kate didn’t understand. I went to her and explained that she needed to put her feet back in the tub. She did, but it was only a minute or two before the attendant began her work.

That was when the “fun” started. Not knowing what was to come, Kate screamed again and responded audibly while the attendant rubbed the bottom of her heal. I went back to her and helped to calm her and then went back to my seat. In a few minutes, it was time for the other foot. Once again, she was surprised by the experience. I stayed with her for a while. When she was calm again, I took my seat in the waiting area that was about twenty feet across the room and clearly visible to Kate who waved to me periodically.

Finally, it was time to leave. It turned out that getting out of the chair and descending the step was a bigger problem than getting in. Anticipating that she would need my help, I was in place when she was ready. The first problem was standing up from a sitting position. That has become increasingly difficult at home and restaurants. This was a little more frightening for her because the chair was elevated so far off the floor. Kate is very insecure about going down curbs and stairs. To her this must have seemed like jumping off a cliff. All this was accompanied by a variety of audible sounds. As with other moments during the process, all eyes were on Kate.

As we walked out the door, Kate said, “Let’s get out of here.” I think most of the other people in the salon thought of their personal experience as a treat. Far from it for Kate. In the car, I apologized for putting her in this situation and mentioned that we might go back for a manicure sometime. She quickly said, “I don’t ever want to go back there.”

The personnel and the nurse next to Kate were very understanding. I don’t know how the others took it. I only gave my Alzheimer’s cards to the receptionist and the nurse. In my haste to leave, I didn’t think to give one to the woman on the other side of Kate and ask her to pass it around. I wish that I had because I did notice soft laughter among the group. I admit that from their vantage point, it was funny, but it was a sad moment for me. It’s been almost two months since I had to discontinue her bi-weekly massages. Now the mani-pedis. I wonder what is next.

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Creating Happy Moments

As I have mentioned before, I have two primary goals in caring for Kate: To keep her safe and to keep her happy. For the most part neither of those goals has been especially challenging. I am, however, finding it more difficult to keep her happy. I think that is only natural with the progression of Alzheimer’s. In the early stages, Kate could easily entertain herself. Apart from the routine activities in which we were involved together or those with her friends, she had three different things she did on her own. The one that occupied the largest portion of her time was her yard. Weather permitting, she sometimes spent as long as five or six hours in a day tending to her plants and shrubs. As the shrubbery began to die from her excessive pruning (“pulling leaves”), she gave up working in the yard two or three ago.

She also edited photos on her computer for what she intended to be a photo book of our family. Although she wanted to include a good bit of text to provide a fuller account of our lives, she never wrote anything. Instead, she would often say to me when we were talking about our lives together, “Remember that. That goes in the book.” Though less frequent now, she still says that occasionally. Originally, she spent as much or more time on the computer as she did in the yard, but it became increasingly difficult for her to operate. That dropped out of her life about four or five years ago.

That left her with her iPad on which she works jigsaw puzzles. In recent years, she has spent up to seven or eight hours a day on that. Now she is encountering much more difficulty. I fear that ability will soon be gone. That requires me to spend more time entertaining her. Yesterday was a good example.

When she woke up, she was not as warm and friendly as she sometimes is. She joked with me, but it grew out of a feeling I had rushed heer and took on a more serious, than humorous, tone. I often joke with her, but I back off in situations like that. My joking tends to exacerbate the problem. Knowing that we would soon leave for lunch, I didn’t say much. I simply responded to her needs in getting dressed. I knew I could depend on the car ride of about twenty minutes and could play music all the way to lunch.  We didn’t talk much at all in the car. When we did, it involved references to the music. Once we were at the restaurant, she was fine.

When we returned home, she wanted to work on her iPad. I joined her in the family room and put on some music she would enjoy. After an hour or so, she asked for my help. As soon as I started to help, it was clear that she was more confused than usual. It wasn’t that she had pressed the wrong button. Somehow she thought she was supposed to spell someone’s name and couldn’t do it because there were only scattered puzzle pieces on the screen. She didn’t see any letters. I tried to explain, but she didn’t understand. She kept talking as though there was another person in the house (a woman). She thought her name was Carol. When I couldn’t help, I suggested that she take a break from her puzzles and look at one of her photo albums. It wasn’t long before she was engaged with the photos in the Big Sister album.

We did that for a little while, but I was on my knees beside her chair and got tired. I suggested we move to the sofa where I could sit next to her. She enjoys looking at her albums by herself, but she seems to appreciate them more when I do it with her. That is because I am able to identify all the people and situations. I fill in lots of information she couldn’t remember on her own. It was a happy moment for both of us, and we went through the entire 140 pages.

We had a similar experience after dinner. On several occasions lately, I have played the soundtrack from the movie Annie. It’s an album that we both enjoy. That prompted me to look for the movie on YouTube. I found it, and we watched a portion of it a couple of nights ago. Last night, I turned it on again. Kate was interested but started working puzzles on her iPad. It wasn’t long before she needed my help. She was having a similar problem to the one she had earlier in the afternoon. She didn’t now what to do with the scattered puzzle pieces. When I pulled up a new puzzle, she was worried that she might “mess things up.” I felt sad for her since she obviously recognized that she does mess things up. I assured her she wouldn’t create a problem but decided once again to take a break from the iPad and look at another photo album.

The one I chose was a book focusing on her father’s family. It is a book that we have looked at many times and contains information starting with her grandparents. Because she was already confused, I decided not to read everything. I simply gave her an abbreviated version of the text. I told her about her grandparents moving to Texas with their families, getting married, having children and ultimately moving to Fort Worth where Kate was born. She hadn’t remembered a thing about this album. She thanked me profusely for telling her and said she had never known these things before. As we went through the album, she told me she wanted me to remember that “for the book.” She looked at me very seriously and said, “I want you to help me with this. I want it to be very good. Don’t let me mess it up.” I told her I would, but, of course, I know that she will never be able to create the book she has wanted to make for so long. My heart went out to her when she expressed her fear that she might mess up the book if she did it on her own. Even at this late stage in her Alzheimer’s, she knows she has a problem.

The video had been playing all the time we were looking at the pictures. Although she was excited about looking at more photos, she was beginning to tire. Then one of the songs in Annie caught her attention. We both started watching, and I began to give her a commentary on what we were seeing. That seemed to help her understand what was going on, and she enjoyed the rest of the movie.

Thus, we ended the day on a happy note. It was a day that was punctuated by ups and downs in Kate’s mood, but each time I was able to lift her up with the aid of music, photos, and a video. It reminds me again of how fortunate Kate and I are. I think about the people living with Alzheimer’s who aren’t entertained all day, who have caregivers that have other responsibilities that prevent the kind of continuous care that Kate receives. I also think about the people with dementia who don’t respond to such entertainment in the same way that Kate does. It has to be so hard for their caregivers.

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Signs of Greater Dependence

When I went in to wake Kate yesterday, I saw that her eyes were open. I spoke to her. At first, she didn’t express any emotion. I walked closer and told her good morning. She smiled. I was glad to see that. We were off to a good start. Her smile soon turned to a look of puzzlement. It was the look that meant she was confused. I sat down on the bed. I said, “You look like you’re wondering where you are.” She didn’t say anything. I proceeded to give her my name and hers. She said, “Where are we?” I told her we were in our bedroom and told her to look around the room, that she might see something familiar. She glanced but didn’t give me any sign that she saw anything she recognized.

I talked with her a few minutes and then suggested that she get up so that I could take her to lunch. Getting up from the bed or a chair is beginning to be more difficult. As I helped her up, she screamed. She felt a pain in her right knee. That is the one with the arthritis. This was the first time she has felt any pain in a year; however, this was different than before. This time it was short-lived. Once she was on her feet, the pain subsided, and she didn’t complain of any pain after that. I took her to the bathroom to use the toilet and brush her teeth.

I showed her the toilet, but as often happens, she didn’t recognize it. I asked her to take a seat. Then she said, “That’s it.” She washed her hands and then started to brush her teeth. I went to the kitchen to take care of a few things. It wasn’t long before I heard our housekeeper tell her that I was in the kitchen. I walked into the family room where the two of them were standing. When she saw me, her eyes brightened, and she had the biggest smile you can imagine. She said, “There he is.” I walked toward her, and she almost ran to me. She reached her arms out to me and we embraced. Then she gave a great sigh of relief. I said, “So Linda told you where I was?” She said, “She did?” Then she looked at Linda, tears filled her eyes. She thanked her and gave her a big hug. To me, this is one more striking example of her increasing dependence on me. There have been times in the past few years when I lost her for a period of time, once for three hours in Niagara-on-the-Lake, Ontario. She wasn’t bothered at all. I was the one who was panicked. This time we were not more than fifty feet apart (though she couldn’t understand that) in our own house, and our separation was only minutes.

It also seems to me that she is more responsive to my suggestions. For example, she hasn’t been as slow to respond when I tell here it is getting to be bedtime. She is also decidedly more accepting of my help in dressing and holding her hand when we are walking to and from the car.

I can’t help wondering what comes next?

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Fading Away

These days I see unexpected changes in Kate’s behavior and mood. In some cases, they are new things. More typically, they are things I have observed before. The difference is that they are becoming more frequent. At dinner last night, we had a conversation about our children and the good times we had had during our marriage. Moments later, she didn’t know my name or that I am her husband. Again, this is not something entirely new. It’s the abruptness with she moves from clarity to confusion.

Last night, I saw a message from a man who felt his wife was fading away. I can relate to that. I have had this sense for years. Now it feels like the end is so much closer, and it is.

The other day before leaving the house for the hair salon, she went to the bathroom. When she came out, she said, “I’ll never do that again.” I don’t know what she was talking about, but she was wiping her hands. Fifteen minutes later at the salon, she asked me if they had a restroom. I told her they did, and she wanted me to take her. She looked a little frightened as we walked through the salon. When I opened the door for her, she said, “You better come with me.” Once inside, she spent her time washing her hands and her arms, taking much longer than I would have thought necessary. I didn’t see why she wanted me with her. I know she has had other experiences when she didn’t know what to do in a restroom. One time she tried to exit through a locked door to a supply room. In that case, our server helped her get to the correct door. Another time she locked herself in and couldn’t unlock the door. The experience at the salon made me suspect she was feeling particularly insecure. It also appears there was some connection with her statement at home that she would “never do that again” and her washing her hands and arms at the salon. Did she accidentally put something on her hands at home that she still needed to get off? I have no idea. I don’t know of anything (like a household cleanser) in the bathroom at home. It’s another mystery.

I see signs of change at home and everywhere we go. She sometimes forgets where her toothpaste and toothbrush are even though I now keep them on the counter in the bathroom where they are quite visible.

At lunch yesterday, I mentioned that we would have pizza last night. She didn’t recognize “pizza.” I gave her a description, and she still had no idea what I was talking about. She picked up a slice of a black olive that was with her meal. She said, “I like this.” I told her it was an olive. That didn’t mean anything to her.

Her dependence on me continues to increase. At lunch, I said something about someone who had died. In a moment, and with a look of concern, she said, “What would happen to me if something happened to you?” I reminded her that my dad had lived to 100 and suggested I might do the same. Her question, however, had a tone of greater concern that deserved a more serious reply. I reminded her that our son is in the elder care business and was quite familiar with all the resources and issues related to seniors. I told her he would step in and care for her and that would mean she would probably move to Texas to be near him. She gave a sigh of relief and said she felt better knowing that. That is just another sign of her awareness of her dependency.

She has always been appreciative of the things I do for her, but she has moments when her expressions are more excessive than before. When we left the hair salon the other day, she said, “You’re a nice guy, a really nice guy, and I mean that.” In the car she said, “You are the best man I know.” Near the house, she said, “Do you know who is most important?” I said, “Who?” She said, “You are.” This was one of those happy/sad moments. I am happy that she feels more secure with me, but I am sad for her to experience the insecurity that makes her need me.

At home we looked through a portion of the “Big Sister” album. She got tired and wanted to rest. While resting on the sofa, she asked, “Where are we right now?” I told her we were in our very own house. She said, “The inside?” She really is fading away now. I don’t know what she will be like in the next few months.