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Our Sunday

Kate surprised me again yesterday when she woke up early. I assumed she wanted to go to the bathroom and then return to bed. The first part was right, but she wanted to get dressed and “get out of here.” I suspect I have mentioned this before in passing. It is not unusual for her to think she is someplace other than home when she wakes up. That much is pretty normal, but her mood about being elsewhere isn’t always the same. Sometimes she is just curious to know where she is and asks. Once in a while, like yesterday, she begins with a negative emotion about where she thinks she is. Nothing she has said or done has given me an idea of how this originates. I suspect it may be from a dream she has had. Another possibility is that she has been awake, looked around and tried to figure out where she is. When she can’t, she is either frightened or angry and wants to get out. As we walked to the bathroom, she said, “Why am I here?” I explained that this was our house, and we were in our bedroom. She gave me a look of mild surprise. She couldn’t quite believe it.

Although she wasn’t in a good mood, she seemed to relate to me quite naturally. I got her to the bathroom and dressed much more quickly than usual. That must have related to her desire to get out of the house. I was happy that I hadn’t had to wake her and that we would have time for a trip to Panera. Leaving our bedroom, I walked her through the hallway and showed her the family pictures we had looked at the day before. I don’t know if she realized she was at home, but she seemed like she did when we left the house. We spent an hour at Panera before leaving for lunch.

She was quite cheerful and sang a little with the music as we drove to the restaurant. Andriana’s opened at 11:30. We arrived at 11:35. There was only one other person there when we walked in the door. That proved to be a good thing since it gave us more time to talk with our server. It made for a nice social encounter. This is the server who has observed more of Kate’s symptoms than other servers. Not surprisingly, the poster of a mugshot of Frank Sinatra leads to some of it. Kate had asked me two or three times who he was. A moment after the last time, our server approached the table, Kate pointed to the poster and said, “Who is he?” When the server told her, Kate said, “That’s what Richard says.” It’s interesting how she remembered that but not Sinatra’s name until the server told her. This is not unusual. She often says, “I know I’ve asked you before, but who is he?” Sometimes she says, “I don’t know why I can’t remember his name. Who is he?”

We attended a local theater production of Matilda in the afternoon. Our last theater experience in the spring had not been the best, but I thought all the children in the cast would draw her interest. I was right. We had seen the show on Broadway four years ago with our daughter and son and three of their children. Everyone liked it, and the children in the show were of the caliber you would expect on Broadway. I wondered how our local talent would compare. I was glad to see that they did very well. That may have made more of a difference to me than to Kate. I think she would have enjoyed it as much even if they hadn’t been that good.

When planning activities like this, I place primary importance on how well I think Kate will enjoy the performance (movie, zoo, museum, social occasions), but there are also other things I need to consider. At this time of the year, the heat is especially important. Kate is sensitive to lots of things. Heat is at the top of the list. She complains a lot when we are outside during the day. I would definitely not think of going to the zoo in summer.

That also raises another issue – how far we have to walk from the car and back again. Walking is becoming more difficult for her, and she is very slow. Her slowness is relevant in other ways. Going up and down steps or in and out of entrances to buildings, I am sure others behind her can get a little impatient although I’ve never seen anyone react that way. Fortunately, there is a back door to the theater. I hadn’t realized it was available for anyone who needs it, but a volunteer at the door could see how slowly Kate was walking and invited us to enter. That saved a lot of steps for her. It turned out our seats were fifteen feet away from the door.

I had selected two seats next to the aisle. Kate needed my help getting into her seat. When she sat, she let out a loud noise. This is something that is becoming more common. It’s hard to describe, but it sounds a little like “Oh” as she releases air from lungs for a couple of seconds. A family of four came in shortly after we were seated. It took a while for me to get Kate out of her seat and explain where she should move so that the family could take their seats. She wanted something to drink, and we went to the lobby at intermission. When we got back to our seats, the family next to us had not returned. I suggested we stand in the aisle and wait for them. Kate kept wanting to take our seats. We sat down. That was just as difficult this time as before. A few minutes later, the family returned, and we had to get up again. This meant another challenge for Kate to get up and the sit down again. Increasingly, I am learning what so many other people already know – that lots of little things are more difficult if one has physical problems to deal with. As I look ahead, I need to pay more attention to accessibility. That is becoming just as important as the event or occasion itself.

The good news is that she liked Matilda. We also had a good evening at home after dinner. We went through Kate’s memory book together. I read everything to her. She can only get snatches of the text if she tries to read for herself. We also went through half of one of her photo books before she was tired. We went to the bedroom where I played a series of opera arias on YouTube to end the day. It is clear that we still enjoy ourselves, but it is equally clear that life is becoming more challenging for both of us.

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Another First

Although Kate has become very dependent on me, I have made a point of holding back as long as possible on a couple of the most personal aspects of her care, toileting and showering. As of yesterday morning, we broke the barrier with respect to her shower. This was not something I had planned. It came about quite naturally. For months I have walked her to the shower, turned it on, gotten her towel for her and pointed out the soap. Then I let her take over. When she got in yesterday, I noticed that she wasn’t using the soap. I opened the shower door and reminded her to use it. She didn’t understand what I meant. I pointed to it and told her to pick it up. She still didn’t understand what I was trying to tell her. That led me to show her. I put it in my hand and rubbed it on her body. To my surprise, she accepted that willingly, and I ended up bathing her. She didn’t protest at all. Then I used the shower wand to rinse her. She seemed to like that and would point to spots I had missed or that she wanted to be sprayed again. When we finished, I turned off the water and gave her a towel to dry off.

Like other changes, I don’t expect that this means that I will start bathing her all the time. It is a sign, however, that it may not be long before showering is another of the ADLs (activities of daily living) for which I play a more active role .

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Confusion and Mood Control

When I woke Kate yesterday, she was confused about me. She was very suspicious of me. This was unlike the day before when she didn’t recognize me as her husband from 5:00 until I went to bed last night. At least she seemed comfortable with me. That wasn’t true yesterday morning. It was somewhat awkward for her because she was completely dependent on me to get her to the bathroom and ready for the day.

I decided not to push her or try to explain anything. I just helped her get ready. When she was dressed, I told her I wanted to show her something. She followed me into the hallway off our bedroom where we have several pictures of her family. We stopped at the first one. I said, “This is your grandmother Franklin.” She smiled, and her eyes lit up.” I told her that was her father’s mother and there was something special about her that she would like to know. I said, “She was the first member of your family to go to TCU.” (a bigger smile) Then I told her we have a grandson who is the 60th member of her family to attend TCU, and his sister will join him in the fall. She was coming around.

The next picture is one of her mother that must have been taken in her late teens. It’s a beautiful photo and one of my favorites. I explained that she was her mother. It was no surprise that Kate was drawn to her smile and commented on how beautiful she was. We continued down the hallway and looked at pictures of her grandfather as well as her father. By that time her mood had changed dramatically. I don’t mean to suggest that she now understood that I was her husband, only that she was happy.

From that point we went into the family room where I showed her several other family pictures. As usual, she also admired the plants on the patio. Then I took her into the kitchen for her morning meds, and we left for lunch. I played music that I know she likes all the way to the restaurant.

When we returned home, I asked if she would like to work puzzles on her iPad or look at some of her family photo books. She noticed an album of her father’s family and picked it up. I asked if she would like me to help her with it. She said no. I went to the kitchen work on my computer. An hour later, she wanted to rest and spent the next two hours lying on the sofa. I brought my laptop into the room so that I could sit with her. I don’t think she ever went to sleep. After a while, I asked if we might look at family pictures together. She said she would but “later.” She said she just wanted to relax. I let her do that another half hour before going to dinner.

After dinner, she picked up a coloring book I bought for her about two weeks ago. She hadn’t shown any interest in it before. This time she opened it and spent at least forty-five minutes going through it. It is a big book – 200 pages. I was surprised she could spend that much time looking at it. She didn’t even take the crayons out of the box. When I suggested that we go back to the bedroom, she said she just wanted to finish the last few pages. I told her that would be fine. I was very curious as to what she was doing. There is nothing to read, only cartoon-like figures and shapes to color. When I looked over her shoulder, I saw that she was meticulously going through each page, touching each drawing or part of a figure on each page. She was pushing them the way she touches the screen of the iPad. Of course, nothing would happen, and she moved to the next one. I am still puzzled that she went through the entire book that way. She never appeared to be frustrated. Looking at her from across the room, it appeared that she was enjoying herself. It’s just one other thing that puzzles me.

She wanted to do something else once we went to the bedroom. She didn’t want to work on her iPad or look at photo books. She said she would like to read something. I gave her the three-ring binder that I call her “Memory Book.” It contains a variety of information about her and her family as well as our courtship and marriage. When I gave it to her, she didn’t know what to do with it. I explained that it was information about her life and that she could just read through it. She still didn’t understand. I read the initial information and then turned it over to her. She started touching selected words on the page just the way she had done with the coloring book earlier. When I explained that the book was different than her iPad, that touching the words would not take her to something else, she closed the book. I decided it was best not to push it.

She was already in bed. I told her I would put on some YouTube videos and pulled up a mix of videos of The Three Tenors, Pavarotti, Andrea Bocelli, and Andre Rieu. She listened to the music for over an hour while lying in bed. She was very happy, just another example of the power of music.

We experienced only one other hiccup before going to sleep. When I got into the bed, I frightened her. She apparently had forgotten I was there. When I spoke, she realized who it was and was relieved.

As you can tell, there is a lot going on in our lives right now. Apart from these moments, we had a good day. We enjoyed good moments together, and, except for frightening her, the day ended on a high note. What is encouraging is that even with her moments of confusion and feeling down, I still find it possible to find a way to bring her back. I hope that is something that will endure for a while longer.

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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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Thoughts about Anticipatory Grief

Just about everyone has some awareness of grief that occurs after death of a family member or friend. Much has been written about it, but most of us don’t think of anticipatory grief that occurs before death. There seems to be agreement that not everyone experiences this kind of grief, and I imagine that is a difficult issue to measure. It’s something many people have never thought about, and, thus, are not likely to recognize or say they are experiencing or have experienced it.

As you might expect, I am in touch with a lot of caregivers of people with dementia. Anticipatory grief is a topic that comes up periodically. It is easy to see how the concept would be relevant for this group because of the lengthy span of time between diagnosis and death. Many people view the diagnosis as a “death sentence.” Since there is no current cure for the disease, I understand this thinking. My personal preference, however, has been to focus on the positive side and concentrate on the value of the remaining time that Kate and I have to enjoy life and each other. Having said that, I must admit that the diagnosis did serve as a wake-up call that life does not go on forever. We know this anyway, but the diagnosis of dementia is usually a significant signal that death is sooner than we had expected.

Lynne Eldridge, M.D. (https://www.verywellhealth.com/understanding-anticipatory-grief-and-symptoms-2248855) talks about the nature of anticipatory grief, and, like most authorities, is careful to acknowledge that “everyone grieves differently.” She suggests that such grief can be like a roller coaster ride with all its ups and downs. It’s not constant. With that in mind, she identifies the following symptoms one might experience.

  • Sadness and tearfulness
  • Fear of death itself and the changes that will accompany it
  • Irritability and anger
  • Loneliness
  • A desire to talk
  • Anxiety,
  • Guilt
  • Intense concern for the person dying
  • Rehearsal of the death – visualizing what your life will be like
  • Physical problems – sleep and memory, and
  • Fear of loss, compassion, and concern among children facing death of a parent

Recently, I have wondered if I’m experiencing this grief and, if not, if and when will it occur. This has led me to think about the symptoms listed above as well as the degree to which I experience them. Here are my thoughts.

I quickly eliminated the following signs: irritability and anger, loneliness, desire to talk, and guilt. I may a bit more irritable because I often feel more rushed than usual. If so, it is minimal, and I don’t feel lonely or guilty at all. I do like to talk, but that was true long before Kate was diagnosed.

I experience each of the remaining symptoms to a greater or lesser degree. Here is how I would rank them in terms of their intensity.

I often feel sadness and occasionally experience tearfulness, especially at services for friends who have died. There have also been a number of moments when I choked up while talking with someone about Kate. This has been true since her diagnosis. As her Alzheimer’s has progressed, I have felt sadness each time we did something that was or I thought would be the last time. That includes our international travel as well as trips to New York City, Chautauqua, and our children’s homes. In addition, my eyes often fill with tears during my happy/sad moments with Kate. One that comes to mind is when she asked, “Would you consider marrying me?” during a conversation at a local restaurant about a year ago, but there have been many others.

The sadness I am talking about is not lasting. It is momentary, but I have sensed a greater degree of sadness recently that relates directly to Kate’s decline over the past few weeks (months?). I have experienced hospice with three of our parents, and my current feelings are more like those except for the clearer reality of impending death associated with their situations. With Kate, I also continue to have uplifting experiences that prevent the sadness from being a problem. Nonetheless, there is a real difference in the way I feel now. I think that relates to some of the other symptoms listed above.

I don’t think the word “fear” best describes my feelings, but I don’t want to face what lies ahead for us. When the time comes, I am sure I will handle the situation as I have done in the past. I think the word “anxiety” is a better word than “fear” to describe my feelings. This seems like a very natural response for a spouse whose loved one is entering this stage.

I often think about life after Kate’s passing. I don’t know how someone in my position could avoid that. This will be the most dramatic change of my life since we married, and it’s a permanent one. At the same time, I know many people, including my father, who adapted well after the loss of a spouse. I believe that I, too, will adapt.

I wake up more often at night and have difficulty getting back to sleep. I also sense that my memory has been affected by the demands of caregiving. To date, neither of these has been a serious problem. I’m not sure what to expect in the future.

When I think of each one of these symptoms, I would say none comes close to the feeling of sadness in terms of intensity. There is no denying, however, that I experience anticipatory grief. The question is “How will I handle it?” I am optimistic, but I also believe it won’t be easy.

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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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Something New

About 7:30 yesterday morning, I noticed on the video cam that Kate was sitting up in bed. She had stern look on her face. I asked if she wanted to go to the bathroom. She said no. I said, “What would you like to do? I would be glad to help.” She motioned me to sit in the chair beside the bed and said, “You start.” I said, “Start what?” She said quite firmly, “You know.” I told her I really didn’t and that maybe she had just had a dream about something. She was emphatic that she wasn’t dreaming. Again, she told me “to start.” I told her I wasn’t sure what she wanted me to say. She said, “Then why are you here?” That led me to take another approach. I told her my name and her name. Then I proceeded to tell her about our meeting and our courtship at TCU. I gave her a synopsis of our getting married, going to graduate school, jobs, having children, and the places we had lived right to the present. As I talked, she started smiling. Her mood began to change. When I got to the end of my story, I said, “We’ve been happily married for fifty-six years, and I love you very much.” She smiled and said, “I love you too.”

I gave her a hug and asked what she would like to do now. She said, “I don’t know.” I told her it was just 8:00 and that she usually liked to sleep a little longer. She told me that is what she wanted to do. I pulled back the cover, and she got back in bed. She slept until 10:00 when she got up for good. She was in a good mood and expressed no confusion at all. She was ready to go early enough that we were able to spend some time at Panera before going to lunch. I will never know what caused her to be irritated with me when she first woke up. I just hope it doesn’t happen again. If it does, I will probably take the same approach, that is, just talk about things that get her to think about the good times we have had.

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How I’m Feeling

Considering Kate’s recent changes, it’s fair to ask how I’m doing. Let me try to answer that. By now, you know that I am bound to say, “remarkably well,” but it’s more complicated than that. Like Kate’s spirits, mine go up and down in about the same proportion as hers. As I have said before, “When she’s happy, I’m happy.” That implies there are times when she is not happy. That is true for both of us.

After Kate’s unusually happy day a couple of days ago, yesterday and the day before have been a little different. It’s not that she was sad or depressed. She wasn’t. It was that the symptoms of her Alzheimer’s seemed to be more evident. There wasn’t anything new. She just seemed more like she was drifting away, somewhat distant. That was particularly true last night.

At dinner, she asked my name several times and asked what I like people to call me. I said, “Richard.” She asked if that is what she should call me. I told her that would be fine. When she asked, she did so in the very natural way she usually does. What was different was that my name didn’t seem to register with her at all. It didn’t seem any more familiar than the name of the restaurant at which we were eating.

Our evening after dinner was also a little different. She was very tired and wanted to rest about 7:30. I suggested she could get ready for bed. At first, she just wanted to rest on the sofa. I told her it was getting close to bedtime, and it might be better to get ready. After getting into bed, she asked my name in much the same way she had done at dinner. After two or three times, I asked if she knew how we were related. She didn’t. When I told her we were married, she couldn’t believe it. I gave her a little information about our courtship and our wedding. That seemed to ring a bell, but she soon asked my name again. I told her and didn’t say anything more.

She has been gradually drifting way over the past few weeks. That means more moments of sadness for me. Like all things, I knew this would happen eventually, but it is the reality that has the greatest impact. I know that Kate’s condition will only get worse.

The good news is that I have a lot of things to keep me occupied. This blog is one of them. I am editing a book of emails I wrote under my dad’s name the last few years of his life. I am also writing an article for someone else’s blog. I am active on Twitter and with the United Way, Rotary, and the health foundation on whose board I served for nine years. In addition, I donate platelets every 3-4 weeks.

Of course, my primary role is that of Kate’s care partner. While that involves stress, it also incorporates a considerable amount of pleasure. I am thinking specifically of all the social contacts we have in connection with our meals and the many ways in which music plays a role in our lives. Beyond that, I derive satisfaction from helping Kate get through each day. She can’t do it on her own. I am glad to be here for her.

On balance, I believe that I am doing “remarkably well,” but there is no question that there is more sadness in my life as I watch her decline. I can work to minimize it, but I can’t escape it.

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The Most Predictable Time of the Day

I’m never quite sure what Kate will be like when she wakes up. Confusion is common. A number of times she has been very disturbed. Sometimes she appears perfectly normal. That is, she doesn’t appear confused until she asks, “Where are we?” Sometimes she seems wide awake and happy. Other times, she acts like I am about to interfere with her rest. She is usually right about that.

Mornings represent a striking contrast with our evenings. She almost always feels completely at ease. I can’t identify a precise time this happens. I know it starts much earlier in the day when we leave the house. That is true whether we leave at 9:30 or 10:00 for Panera or closer to noon for lunch.

In her second book, Dementia with Dignity, Judy Cornish devotes the major portion of her book to “mood” and its relevance for those who care for people with dementia. She talks about the ability of PWD to read their caregivers moods. Having learned the importance the senses of PWD, I don’t find that surprising. This ability has significant implications for relating to PWD. Caregivers face many things they cannot control. It’s frustrating. Controlling mood, however, is something that caregivers can, at least to some extent, control. Whatever the caregiver’s mood, the PWD can read that and is more likely mimic it. If the caregiver is uneasy, the PWD is likely to become uneasy as well.

In earlier posts, I have suggested that Kate becomes more relaxed throughout the day. I have attributed that to the accumulation of information that makes her feel comfortable. She may not be any better at remembering the names of people and places, but she senses a lot of things with which she is familiar from the past. Cornish’s views on mood are making me think more carefully about my role as a “manager” of them. I am more sensitive to the fact that I can play a role in making her more or less at ease.

When I think about it, I believe our everyday experiences tell us one person’s mood can affect someone else. I have often said in this blog that “When Kate is happy, I am happy.” That isn’t unique to the relationship of caregivers and PWD. That is true for spouses, for parents and their children, or even for one stranger encountering another.

There are at least two important differences, however, in the relationship of a caregiver and the PWD. First, the PWD has lost her rational ability to control her emotions or to work with someone else to do so. Second, the caregiver is the one who is “officially” in charge. If any changes are to be made, it is the caregiver’s responsibility to make them.

In relationships between spouses, we generally expect  both people to have sufficient rational ability to play a role in maintaining the appropriate moods (though we know that isn’t always the case). The same is true for strangers. It’s a bit different with parents and children. In this case, parents are in charge, and part of their responsibility is teaching their children learn rational ways to behave in social relationships. Children can learn. PWD can’t.

With these things in mind, I believe I have unconsciously assumed that management of Kate’s mood is part of my caregiving role. I wasn’t aware that my own mood might be making a difference in hers. Well, to be honest, I have felt that coming in to wake her in the morning has sometimes made her grumpy. That seems legitimate. If were sleeping soundly and didn’t see any reason to get up, I might be grumpy too. That is why I started waking her up so gently. I usually play music that I know she enjoys for 15-30 minutes before making an effort to rouse her. Even then, I wake her gently and allow plenty of time to avoid my rushing her.

Following this procedure seems to work, but not always. That is when I have to work harder not to push. I try to be very careful in the way I speak to her. I am as calm and relaxed as I can be. There are times when I say, “You don’t have to rush. You have plenty of time.” She sometimes doubts me and says somewhat gruffly, “Are you sure?” I continue to be calm, and her mood begins to change. It isn’t unusual for her to apologize for the way she spoke to me.

This isn’t always easy for a caregiver. For many, it’s very hard. That’s because our emotions often play such a key role in how we respond to things that irritate us. The role of a caregiver demands a greater emphasis on our rational skills than our roles in other relationships. We have to double our efforts. Our loved ones cannot do it. They have lost those skills.

Let’s go back to the fact that Kate’s mood is at its best in the evening. I believe creating that mood starts in the morning when she gets up. It’s no challenge at all if she wakes up in a good mood. There is little work to be done except to reinforce it throughout the day. If she is grumpy, however, it’s going to require a rational control of my responses in order to shift her mood. I am grateful she responds so easily. I love the reward of a good mood that peaks in the evening. It’s a great way to end the day.