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Caregivers As Problem Solvers

I often talk about our having “good days,” but what is becoming more common is a mixture of problem-solving and moments of pleasure. That is what it has been like the past few days.

Kate was up early on Monday and in a good mood but confused. She wanted to take a shower. Afterwards, I started to help her get dressed, but she wanted to get back in bed before we finished. We had plenty of time before the sitter was scheduled to arrive at noon. I let her rest until an hour before then; however, she didn’t want to get up. It was not a repeat of Friday when she refused. She seemed tired, not depressed. I even asked if she were depressed. She said she wasn’t, and the way she spoke and smiled suggested she was telling the truth. I was able to encourage her, and she got up.

When Cindy arrived, Kate greeted her warmly with a big smile. I mentioned that Cindy was going to take her lunch. She wanted me to go to lunch with them. When I told her I was going to the Y and to a meeting after that, she frowned. It didn’t look as though she was seriously concerned but preferred that I be with her.

She was resting on the sofa when I returned. That is typical. After Cindy left, Kate and I sat together on the sofa while I read from a photo book of her mother’s family. She really enjoyed it. We went through part of the book for about forty-five minutes and then went to dinner.

After we returned home, she started to work on her iPad. Then she decided to get ready for bed. I turned on the news, and she appeared to watch with me for most of the hour before calling it a night.

Later as I was getting ready to shower, I noticed that she was awake. I walked over to the bed. She looked worried. I asked if she was all right. She said she was, but she wasn’t very convincing. I said, “It looks like you’re worried. Are You?” She hesitated and then said, “I’m all right. You keep going.” I said, “I will always be with you.” She smiled. I said, “We’ll do this together.” I don’t know exactly what was on her mind. I know it was concern about her condition. Neither of us addressed that directly, but I feel that we were communicating our mutual understanding indirectly. This was a sad moment.

Tuesday was a good day, but we did have an unusual experience at dinner. I believe I have mentioned that Kate sometimes sees little spots on the table that she refers to as “Little Things.” She often refers to them with the pronoun “he” and sometimes comments on their moving. This was one of those times. It usually seems like a harmless form of amusement. It was a little different that night. She saw more of them and thought they were harmful in some way. She thought they were in her meal of which she ate very little. She didn’t want to have dessert thinking they might be in it as well. She just wanted to go home. She was fine after we left.

I have been sleeping very well lately, but yesterday morning I awoke at 3:30 and couldn’t go back to sleep. I got up again at 4:15 and took a twenty-minute walk in the house. I got back in bed but still couldn’t sleep. At 5:45, I decided to get up for the day. I hadn’t been in the bathroom more than a couple of minutes before I heard Kate say, “Hey.” I went over to the bed and asked if I could help her. She said, “I don’t know.” She looked frightened, and I said, “You look scared. Are you?” She said she was. I got back in bed with her. She said, “I’m glad you’re here.”

I tried to comfort her for the next ten minutes or so. She seemed to be more relaxed, and I told her I might get up and get dressed. She wanted me to stay and asked if she was supposed to do something today. She said, “Do I need to get the eggs?” I’m not sure whether she really meant eggs or she just used the wrong word as she sometimes does. I told her she wasn’t responsible for anything “today,” that she could just relax and do whatever she and I wanted to do.

I put on some relaxing music and played it very softly as we talked. I spoke to her slowly and softly and comforted her. Off and on she responded to something I said with “I remember you said that last time.” I don’t ever recall her saying that before. At one point, I told her I loved her. She said she loved me too and was glad I was with her. Then she very naturally asked, “Who are you?” Two or three times she began to shake and said, “I’m scared.” Gradually she calmed down and was almost asleep at 7:00 when I again mentioned getting up to dress and have breakfast. She said that was fine.

About 8:45, I heard her call me again. She had gotten out of bed and wanted to go to the bathroom. She asked where she was and said she wanted to “get out of here.” I told her I would help her. It was also a time when she did not remember me. She let me help in the bathroom and dressing, but she was very unsure about me.

As we walked to the kitchen for her morning meds, she said, “I just want to lie down.” I took her over to her recliner. She sat down, and I put it in its fully reclined position. She forgot all about leaving and rested another forty-five minutes before she opened her eyes and looked over at me. She smiled. I’m not sure if she remembered my name or our relationship, but she was quite at ease with me. Then closed her eyes and continued resting.

I got her up in time for us to have lunch together before the sitter arrived. After lunch, she rested on the sofa. Mary arrived shortly after that, and I left. Kate was very comfortable about that. The two of them were chatting as I walked out the door.

I was surprised to see Kate sitting on the sofa looking at one of her photo books when I returned. Typically, she would be resting. She said she was glad to see me though she didn’t look at all disturbed that I had been gone. I walked Mary to the door, and she told me that Kate had asked where I was a number of times but didn’t seem unduly concerned.

I sat down to go through the photo book with her. She wanted me to identify the various people in the photos, but she quickly found that overwhelming. I suggested we take a break and go to dinner. She wanted to go to the bathroom, and I took her.

When she was finished, she was very disturbed about people we would see somewhere, apparently in her hometown in Texas. I told her it would be a long time before we made a trip to Texas. That didn’t help. She said she couldn’t help thinking about how her mother was feeling. On the way to the restaurant, she continued to worry about these people and how she should react to them. I assured her I would be with her and would try to see that everything went smoothly. She appreciated that, but it didn’t relieve her pain.

Once we were seated at our table, she continued to talk about these people. I never figured out what it was that she was afraid would happen, only that she was very disturbed. At one point, she started crying at the table. She recovered quickly, but it wasn’t until the food arrived that her attention was diverted, and she never mentioned anything else about it.

Before we left, we had an experience that was similar to the one we had the night before. When our server brought the check, Kate pointed to the table top and asked if the server could see “them.” She didn’t. Kate pressed her finger on the table and held it up to the server and said, “See?” The server played the game well. She pretended to pick “it” up from her finger and said, “Now, I’ve got it.”

The day ended well. We watched a couple of YouTube videos about the story and filming of The Sound of Music. I know she couldn’t follow it, but she was quite interested. As usual, she was awake when I got in bed. That is the most predictable moment of the entire day. She almost always seems at ease and glad that I have joined her. We usually talk briefly, express our love for each other, and say good night. I was glad to end the day on a positive note. We are certainly having more days that call for greater problem solving.

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Caregiving is a Learning Process

I like to think I’m a pretty good caregiver. Like everyone else, however, I make my share of mistakes. Yesterday I encountered two situations that called for “doing the right thing.” I acquitted myself when faced with the first one. I failed miserably with the second one and then made a recovery by doing what I should have done in the first place.

Kate’s brother and his wife left early yesterday afternoon. They wanted to have a short visit with Kate before leaving for the airport. I encountered a problem when I tried to wake her. This was one of several mornings when she didn’t want to get up. Unlike those in the past, however, she seemed unusually tired and just couldn’t make the effort. I thought that when I told her that Ken and Virginia were coming over to say goodbye, she would give in. She wouldn’t. In fact, she started to cry. I decided not to push her. She had gotten to bed later three nights in a row. I believe it just caught up with her.

I visited with Ken and Virginia while she continued to sleep. I checked on her once to see if she was awake. I asked her if she thought she would be able to get up to tell them goodbye. She said she wasn’t. I asked if they could come to the bedroom to see her. I thought she would say no and decided to get dressed. I was wrong. She said that would be fine. I went back to the family room.

As it neared the time they needed to leave for the airport, I went back. She was awake. I went through the same routine. This time she agreed to get up. With her cooperation, I was able to get her dressed in record time, and everyone got to say their goodbyes. Patience had prevailed.

The second situation did not go so well. I washed our sheets during the afternoon and had put on the bottom sheet when she wanted to get ready for bed. She had her night gown on when I told her it was time for her meds. She thought I meant for her to take off the gown. As she started to take it off, I said, “No, you don’t need to take off your gown.” It was too late, and she was irritated with me for not being clear about what I wanted her to do. Then she got into bed. I told her she needed to sit up to take her pills. She wanted me to give them to her while she was lying in bed. I told her that she might spill the water or choke when she swallowed. I decided to let her try it. She immediately spilled water on herself and sat up. Then she took the pills.

After that, she got back in bed with her head at the foot of the bed. I told her to turn around so that I could finish making up the bed. That irritated her, and she and said, “You can do it like this.” I explained that I needed to put on the top sheet, blanket, and spread, and I would cover her head. She was insistent about not moving. That is what led me to do the wrong thing. I decided to take what I thought was a lighthearted approach and pulled the top sheet over her. When I brought the sheet over her head, she was furious. That is when I did what I should have done. I told her I was going to the family room to watch the 49ers/Packers’ game and to call me when I could make up the bed.

Fifteen minutes later I went back to the bedroom. When I walked in the room, I said, “I think I’ll get ready to take my shower, but first, I’d like to make up the bed.” She said, “Could I help you?” I readily accepted her offer. When the bed was made, I thanked her and gave her a big hug. The crisis was over. She was fine after that.

I am reminded of something I heard many years ago. A local child psychologist told me that “No” is the most powerful word a child can utter. He suggested that parents try to avoid getting into situations that lead to a child’s using it. That is because most of the exits lead to other problems. I believe the same is true with people with dementia. Kate was resistant to my asking her to get up and let me make up the bed. My effort to get her off the bed caused her to dig in her heals. She wasn’t moving. She doesn’t like to be pushed. I know that, but I have never seen her respond this way before and don’t want to see it again.

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Increasing Dependence

I have often commented on Kate’s dependence on me with respect to finding the bathroom, the full variety of bathroom activities, dressing, and helping with most other activities of daily living (ADLs). That continues, but I have observed other ways in which she is dependent. I’d sum it up by saying they involve my being a security blanket.

I mentioned one of those in my previous post when she didn’t want to go to lunch with the friend I had asked to take her. She has been to lunch with her on a number of occasions before and after her diagnosis, and, yet, she wouldn’t agree to go with her yesterday.

Yesterday she had a similar experience with the sitter. This one was with the sitter who has been with her more than two years. Kate wanted to rest after lunch, just fifteen minutes before Mary arrived. That’s not unusual. When I returned four hours later, she was still resting in her recliner although awake. I asked Mary if she had been there the whole time. She had. Mary said, she has encouraged her to get up, but Kate didn’t want to.

After Mary left, she asked me to show her to the bathroom. As we walked hand in hand, she expressed her feelings more clearly than she usually does. She conveyed that she liked Mary, but she said, “It’s good to be with somebody you really know.” She was relieved that I was home. When we reached the bathroom, I started to leave. Then she asked me to stay in case she needed help with anything. I frequently sense that she is at ease with me even when she doesn’t know my name or our relationship. This time, however, it seemed like she both knew me and that she was very grateful I was home.

As she finished washing her hands, I started toward the kitchen. When she came out of the bathroom, she didn’t see me and called to me. I went back to her. She was so relieved when she saw me that she was almost in tears.

We went to dinner at a nearby pizza place. Before I stepped away from the table to pay for our meal, I told her I was going to pay and would be back. I know she can’t remember, but there was no one ahead of me. In addition, The check out wasn’t too far from our table, and she has never been uneasy before. As I approached the table after paying, I saw that she had a worried look on her face and was looking all around for me. When I walked up to her, she said, “I am looking for my husband.” When she looked more closely, she recognized me. Again, it was an emotional experience for her.

Here is my own interpretation of what’s happening. She is sinking deeper into a state in which she can’t remember anything. That makes her afraid. I am the one who is most often with her and helps her. Of course, we also have a bond that is very strong after fifty-six years of marriage. When you put these things together, it’s not difficult to see why she might feel dependent. This has an advantage with respect to helping her with so many things. She still likes to retain some independence, and I think that is a good thing. Normally, however, she is usually receptive to me help. That makes caring for her much easier.

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She Needs and Appreciates Me

I had just finished my walk and was getting ready to complete a blog post yesterday morning when I heard Kate’s voice over the video cam. I went to her. She said, “I am glad to see you.” I said, “I’m glad to see you.” Then I asked if there was anything I could do for her. She said, “Yes,” but she didn’t say what. She was pretty groggy. I asked if she would like to go to the bathroom. She said, “Not right now.” I said, “It sounds like you would like to rest some more.” She nodded. I started to say that I would be in the kitchen when she said, “Don’t leave me. I like you to be here.” I said, “How about my going to the kitchen and getting my things and coming back and sitting in the chair right here.” She that would be fine. When I returned, she thanked me for being with her and said, “You don’t have to say anything at all. You can if you want to.” She added, “You take good care of me. I don’t know how you do it?” It’s this kind of appreciation that gives me encouragement to do everything I can for her.

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Music and More

Not long after Kate and I returned home from dinner Sunday night, Kate started working on her iPad. She quickly found it too difficult and directed her attention to her hair, her toes, face, and legs. I’m not sure exactly how to describe what she does, but it reminds me of a cat that preens itself. She began by pulling her hair. I turned on the TV to one of the NFL games with the sound muted.

I didn’t watch much of the game. She wanted me to watch what she was doing. That is becoming increasingly common. A couple times in the past, she has said she wants me to make sure that she is “doing it right.” I don’t know what that is, but she thinks I do. That’s what matters. After half-heartedly watching as I also tried to catch some of the Steelers/Ravens game, she wanted me to be an active participant. I had the distinct impression she wanted my help this time to keep my attention on her. Several times, she sternly said, “Are you watching me?” One time she caught me when she said, “Tell me what I just said.” I hadn’t really had a chance to get wrapped up in the game, but I admit to giving both the game and Kate my divided attention.

I tried to be obedient when she asked me to do the things she had been doing, but she sensed my lack of enthusiasm. She wasn’t happy. I was ready to take a shower, but she wanted my help. I needed something to redirect her attention and shift her mood. Not surprisingly, I thought about music. I suggested that I look for something on YouTube.

One of the first things I saw was a video entitled “Saint Paul’s at Christmas.” I assumed it was one of their Christmas concerts. I reminded Kate of our celebrating Easter Sunday at Saint Paul’s on a trip to England quite a few years ago. I told her how much we had enjoyed the music that day and suggested this might be fun to watch.

It took only a few minutes to discover that it was actually a documentary that focused on the preparations required to manage all of the different Advent and Christmas events. That led me to tell Kate that it wasn’t a musical performance (though there was some music in the program) and asked if she would like me to find something else. By the time I asked, she was already engaged and didn’t want to change. I watched with her a short time. Before leaving to take my shower, her eyes moved periodically between the TV and me. She made sure that I was watching. When she saw me on my iPad, she told me to watch the TV. It was an interesting documentary that included the beauty of the Cathedral itself and the preparations of the choir, but I finally got up to take my shower. By this time, she had gotten in bed to continue watching. She was sitting up. That was a good sign that she was interested in the program. I know it was far too complicated for her to have understood, but she enjoyed it. Her mood had changed significantly.

It was just ending when I finished showering. The video that followed it was an Andre Rieu Christmas concert, most of which was filmed at his home in Maastricht. It is a magnificent home that was beautifully decorated. The concert was outside with abundant and colorful decorations and lighting. I thought the concert itself was the best I have seen in a while. Kate and I watched the whole program sitting up in our bed. Both of us loved it.

The video ended at 9:40. It was time for me to say good night and past time for Kate; however, the next video was the New York Philharmonic playing Dvorak’s Symphony “From the New World.” It has been a favorite of mine since playing it with my high school orchestra. Kate and I have attended many symphony concerts in the past, but she is not generally as taken with orchestral concerts. I started to turn it off. Then I suggested we just watch a portion of it. To my surprise, Kate was immediately taken with it. We watched to the very end forty minutes later. I suspect the video enhanced her appreciation of the music. Of course, the music was also familiar to her. That surely helped, but knowing why she was so enraptured doesn’t matter. She had just spent almost a full three hours enjoying a documentary, a Christmas concert, and a popular symphony. She was happy. Once again, music played a key role recovering from what started out to be an unpleasant evening.

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Changes Abound

This has been a week when I feel I’ve had more to say than I’ve said. I’ve been busier with Kate, and a few holiday related tasks. In addition, I have been dealing with a few household issues, a leak in our pool, a leak in a pipe under the house, a toilet that needed fixing, and some minor electrical work. Perhaps more than anything else, I haven’t been exactly sure how to express what I want to say. It’s all wrapped up in a single word: change.

Haven’t I said that before? Yes. Maybe that’s why it’s hard for me to say it again in a way that distinguishes what is going on now from the past. I’ve devoted a little more time this week to paying attention and thinking about that rather than writing. I haven’t considered this a waste of time at all. I’ve read about authors who have made a point of saying that the “thinking” part of writing for them is the most valuable part. With that in mind, let me tell you about some of the things that are going.

Kate  more frequently expresses insecurity about what to do when she wakes up, when brushing teeth and bathing, when we are in restaurants. She was especially uneasy during our Christmas dinner at Ruth’s Chris. That may have related to the somewhat more formal nature of the room, the service, and the fact that this is not a restaurant we often frequent. It had been several years since our previous visit. That was with the staff at the office and a time when her Alzheimer’s affected her much less than it does today. Whatever the cause, she was never fully at ease.

Her morning confusion seems to be more severe now. On several occasions, she was so frightened that she hasn’t wanted to get out of bed. Each time I have been able to help her recover, but it takes longer than the past. That happened day before yesterday. She didn’t know “anything.” I talked with her very slowly and calmly. She didn’t know who I was, but she trusted me. I was eager to get her up so that we could have lunch together before the sitter arrived, but I knew that rushing her would make things worse.

I put on some soothing music at a very low volume, and we talked for fifteen minutes or so. Though I talked about her parents and our children, nothing rang a bell. She became comfortable talking with me, but she was still confused. Then I decided it was time for something more upbeat. I remembered that several weeks ago she had recognized and liked the song “A Bushel and a Peck.” I played it. The minute she heard it she laughed. We were making progress. I was streaming the song from a playlist of Doris Day music, so we heard a couple of other old songs we both recognized. Then I switched to the soundtrack of My Fair Lady. By the time we got to the third track, I suggested we go to lunch. She didn’t jump right up, but she did let me ease her up, and we got ready. She was fine.

She struggles more with her clothes than in the past. Sometimes she wants to be independent, and I let her do what she can. It isn’t long, however, before she asks for my help.

Her vocabulary is diminishing. She often says, “I don’t know how to say this.” She can’t pull up the words that express what she wants to say. That is more than a vocabulary problem. It is also a problem organizing her thoughts.

Along with that she sometimes fails to recognize common objects. Ironically, that almost always happens with her iPad. When she sees it, she asks, “What’s this?” Last night I handed her toothbrush to her and didn’t know what it was or what it was for. I explained how she should use it. At Panera this morning, she looked at a napkin and asked what it was.

I have no way of measuring this, but it seems like she does not know my name or our relationship for a longer time each day. On the other hand, she almost always feels comfortable with me. She trusts me. It is when she first wakes in the morning that she is least likely to know my name or relationship. She does, however, know to call me in the morning. Most of the time, she just says, “Hey.” Interestingly, there are times during the day when she needs something and calls me by name. This seems to be a example of a simple “stimulus/response” behavior. She occasionally asks my name shortly after using it.

Our Christmas Day conversation when she couldn’t remember anything about her mother was a striking first. She has always retained strong and very positive feelings for her mother. I thought that would be the last memory to weaken. Of course, that didn’t last. I haven’t seen any similar signs since then.

There are more times like this when she seems to be in a fog. These seem to occur most frequently in the morning when she wakes or during the day after resting a while. It is like her brain closes down while resting or sleeping. Then when she opens her eyes and looks around, she doesn’t recognize anything or in some cases, she has hallucinations. After resting in her recliner a while the other day, she opened her eyes and pointed to something across the room and said, ““It’s been a long time, you know.” <pause>. Then she pointed to the ceiling and said, “Hey sit down.  All of you.” (Chuckles)

She talks in her sleep more. Sometimes I talk back to her, and she speaks to me while still appearing to be asleep.

Her vision is worse. I think that accounts for some of her uneasiness when walking from the car to a restaurant and back as well as her difficulty getting seated or going up and down curbs. She frequently fails to eat food on her plate because she hasn’t seen it. Occasionally, I walk to another room after we have been talking. When I walk in moments later, she doesn’t recognize me and asks, “Where did he go?” If I say, “Who,” she usually says, “The other guy. The one I was talking to.”

She loses me easily. Sometimes that occurs when we are within a few feet of one another. The other night at a nearby pizza place, I saw that there was just one remaining booth and walked ahead of her to claim it before someone else. When I looked around she was looking for me. We looked at each other, but she didn’t recognize me until I walked closer. She was frightened that she had lost me.

Surprisingly, she seems to be rather good at seeing small spots. It is not unusual for her to eat everything on her plate and then look for tiny specks of remaining food that she picks up with her finger.

Her sleeping pattern is more erratic. She had a long period of time when she slept regularly until 11:00 or after or when I woke her. More recently, she went through a period when she would wake up early and go to the bathroom then go back to bed. I’m not sure there is a pattern anymore.

She has more problems with eating. She is particularly confused when she has both a fork and a spoon. If she has soup, she usually begins to eat it with a fork. Then I show her the spoon. After she uses the spoon, she uses it for everything else.

She also uses soups and condiments as sauces for other parts of her meal. For example, we eat lunch at Bluefin on Saturday. They prepare excellent grilled salmon that she likes. It is not unusual for her to dip her salmon in the ketchup that accompanies her sweet potato fries. I brought some lobster bisque home from lunch on Christmas along with Our sweet potato casserole. She used the bisque as a dip for the casserole.

As she was finishing her meal last night, she poured all of the remaining ice and tea onto her plate with a few pieces of chicken and began to eat the dozen or so flat, square pieces of ice along with her chicken. She didn’t leave a speck of anything on her plate or the two cups with her side dishes of strawberries and applesauce.

She is beginning to forget how to take her pills. Sometimes when I hand her a pill and a glass of water, she asks what to do with it. She occasionally puts the pill in her mouth, drinks the water, and doesn’t swallow the pill. When I hand her the next one, she says, “What do I do with this one?” I have to watch her more carefully than in the past. She can take one pill and forget the others.

Yes, life is changing. There are more things that demand my attention. Having said that, we still have a good time together. I’ll say more about that in another post.

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A Difficult Morning

I have often said that I am able to lead Kate to a recovery whenever she has challenging moments. Most of those involve her confusion in the morning. More recently, she seems more frightened by sudden noises like those we hear at restaurants. She is also more irritable. I attribute that to her not understanding or anticipating my intentions when I help her. Yesterday morning all of these came together.

It began when her overnight underwear (pull-ups) failed. I was in the kitchen and heard her say something. She was upset. When I asked if I could help she said, “Get me out of here.” I got her to the bathroom. As I helped her get cleaned up and brush teeth, she alternated between wanting me to tell her what to do and resisting my help. As she usually does, she got tears in her eyes and apologized to me several times. While we were standing at the sink, I put my hand on her arm. She shrieked as though I were going to harm her. I asked why she was so upset. She cried and said, “I don’t know. I don’t know.” I believe that was a very honest answer. She really doesn’t know why, but she still feels she shouldn’t respond to me this way. I tried especially hard to respond in a gentle, caring way to comfort her.

Several times she said, “Why did you bring me here? I just want to go home.” I told her I would take her home. Then I got her dressed and took her to Panera for a muffin. Once we were in the car, she seemed fine. She even spent more time on her iPad than usual. In fact, we would have stayed longer except that it was almost time for the sitter who comes at noon on Monday. She didn’t mention going home again. The sitter came a few minutes after we got home, and Kate was just as natural with her as she is with me. I felt good as I left.

Looking back, I see the only difference yesterday morning from other challenging mornings was how upset Kate was. I don’t believe it lasted any longer than other mornings when she is confused. It does reinforce my belief that remaining calm with her and easing her into her daily routine brings about her recovery.

I hope this will continue, but I know I can’t be sure. I am reading a memoir written by a doctor who cared for his wife who had Alzheimer’s. I have identified with him in a variety of ways, especially his desire to care for his wife in such a loving way. Last night I read a section in which he relates the severe anger that his wife experienced in the late stage of the disease. Is that ahead for Kate? As they say, “only time will tell.’

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The Therapeutic Value of Music and Reading

Kate and I have always enjoyed music and, especially, live performances. They have been fully integrated into our lives since her diagnosis. To start with I didn’t think of this as therapy. We were simply enjoying ourselves. A year or two later Kate experienced several panic attacks as a result of my rushing her to get to events on time. One time she hadn’t calmed down when we got in the car to leave. I turned on the second movement of Brahms’ violin concerto. We didn’t talk while it played (about ten minutes) When it was over, she was calm. Since that time, I have used music a good bit to put her at ease even if she isn’t having a panic attack. It makes her happy.

This past Sunday we attended a Christmas show that achieved the same effect. I think she must have been tired because she had gotten up early and did not rest after lunch as she usually does. I know she was a little grumpy when we walked into the theater from the parking lot. We didn’t walk far, but it was too far for her and also chilly. We sat in our seats for ten to fifteen minutes before the show began. She doesn’t like waiting and complained most of the time. I assured her she would like the show, but she was not convinced.

Her mood shifted immediately when the show started. The cast was large and included a number of young children and teens along with the adults. The music, of course, was the key factor. She audibly expressed her enthusiasm after each song. That set the stage for a very nice dinner experience.

It may well be that reading will be another tool in my arsenal to lift her spirits. I looked at my reading to her as a way to occupy her time when her use of the iPad dropped to a few hours a week after years of six to eight hours a day. That night I was looking for something more than amusement. She was grumpy again after dinner. As she began to get ready for bed, she pointed to the ceiling fan and asked me to “turn that thing off.” I told her it wasn’t on. She said, “Well turn it on.” I did, but she didn’t like it and told me to turn it off again. I started to help her with her nightgown, and she said, “I can do it myself.” As she does so often, she apologized for the things she had said, but she continued to be grumpy.

After she got in bed, I asked if she would like me to read The Velveteen Rabbit. She said she would. She didn’t say a word while I read. That was unusual. I wasn’t sure that she was listening and wondered if she might have fallen asleep. When I finished, I said, “Did you enjoy that?” She told me she did, but it was the tone of her voice that was the clearest indication she was all right. She also said that she remembered some parts from the “other time” I had read it to her. I felt good about that because she didn’t recall the book at all previously. I suggested that it made a good bedtime story and that we might do that again sometime. She liked the idea. I was glad. I found it to be a nice way to end our day together. Reading, like music, is a “Win/Win” for both of us.

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This Morning

Last night I picked up an email from my friend Tom Robinson. He asked how I managed to remember the different experiences Kate and I have and especially the times they occur. In my reply, I confessed that I forget a lot. So much is happening now that it is impossible for me to remember everything. I really wish I could do a better job capturing our conversations. They would be much more effective in telling our story than my personal descriptions, but it is becoming increasingly difficult for me to remember such details. There are some occasions when I am able to write shortly after a particular incident. Such is the case right now.

It is now 8:19 Friday morning. I was up at 6:25 and had finished breakfast. It looked like this would be a morning when I would be able to walk and listen to my book. As I was preparing to do that at 7:50, I set the video cam on the island in the kitchen. When I did, I saw that Kate was about to sit up. When I reached her, she was sitting on the edge of the bed. She looked up at me and smiled. I told her it was good to see her and, especially, to see “that smile.”

As we walked to the bathroom, she said, “I sure am glad to see you.” Her tone of voice conveyed a sense of relief. It was clear that she was quite confused although she seemed to recognize me. As we returned to the bed, she repeated how glad she was to see me. She said, “What do I do now?” I told her it was still early, that I thought she should try to rest a little longer. As I pulled the covers over her, she said, “Where are we?” I told her we were in our house in Knoxville, Tennessee. We went through these same questions two or three times. Then I asked if she would like me to bring my things into the room and sit with her. She said, “Oh, yes.” That’s where I am and plan to stay until it she is asleep. Then I will slip back to the kitchen. In the meantime, I put on a Jason Tonioli album entitled Finding Peace. Most of the pieces are just piano and violin, and, as the title suggests, they are very peaceful. It is playing softly in the background. If it doesn’t help Kate get back to sleep, it may do it for me right here in my chair.

There is nothing special or particularly unusual about this experience. In that respect, it is a good one in that it captures a rather ordinary part of our lives. It’s not always like this. Sometimes she is much more disturbed by her confusion. Other times less so. It is unusual, however, for her to want me to stay with her. That is a sign of greater insecurity than most days.

There is something else about this morning that is typical. It is the way we relate to each other. She depends heavily on me and looks to me for guidance. This is true most of the time, and that makes caring for her much easier for me. It’s not always like that. There are times like two days ago when she wanted to be independent and resisted my help. That was a rough moment and only subsided when I let her take charge. That helped to re-balance the relationship. When she is on her own to dress, it isn’t long before she asks for my help. That works because I am following her rather than directing. In moments like this morning, she is ready to turn everything over to me. Making a decision about what to do can be a challenge when your mind is completely blank.

The last song on Tonioli’s album, Brahm’s Lullaby, is playing. Kate is now sound asleep. I think I’ll take my morning walk around the house (inside, of course) and listen to my book.

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What Can the Horse Whisperer and Mr. Rogers Tell Us About Caregiving?

In 2011, Robert Redford produced and directed the film The Horse Whisperer. It was based on a real story about Burt Brannaman whose unconventional approach to breaking horses captured the attention of many people like me who know little or nothing about them. My crude interpretation of his method is that he establishes a relationship of trust with horses. He does this gradually in small steps by connecting with them in a non-threatening way. The result is that he achieves success without forcing them into submission but gaining their trust. He thinks this is a gentler and better way to achieve the same end.

In the past year, Mr. Rogers has also been the subject of two films. Each in different ways captures Rogers’ approach to relating to children (as well as adults if we take It’s a Beautiful Day in the Neighborhood literally). It strikes me that his approach with children was very similar to that of Brannaman’s with horses. In both cases, the men are keenly sensitive to the little things that can frighten or comfort horses or children. That includes what one says, how it is said, tone of voice, facial expressions and body language.

As I think about it, both Brannaman and Mr. Rogers have something to tell us about caregiving. As people with dementia decline, the world around them must seem strange. I know that Kate is quite insecure and looks to me for security. Even situations that have been routine for years can be a bit frightening. Yesterday, I took Kate to a hair appointment. Recently she has had trouble getting into the chair for her shampoo and expressed her feelings in a loud audible way. I helped her into the chair the last two appointments. That has worked well. This time she wanted me to stay with her and to hold my hand. During the past year, I dropped her bi-weekly massages and her pedicures because she was frightened by them.

I say this to suggest that Kate’s failure to understand the situations she faces is similar to the way horses and children react when they are confronted by something new. I have learned the hard way that I need to interact with Kate the way Brannaman relates to horses and Roger interacted with children. That doesn’t mean I don’t make mistakes. I did yesterday and was fortunate to make a comeback when I returned to a more sensitive approach.

Yesterday she wanted to be more independent, and I have grown accustomed to doing more things for her. That didn’t mix well. She seemed especially slow in getting ready for the day. She spent almost twenty-five minutes brushing her teeth and washing her arms and face. The washing of her arms and face is normal, but she took longer to do it this time. Several times when she was brushing her teeth and showering, she told me to stop helping her and said, “I am not stupid.” I apologized and backed off. It wasn’t just that I changed what I said. I also changed the tone of my voice and facial expressions. She is very good at reading those. I remained with her but didn’t offer any suggestions. I did help dry her. She appreciated that.

As she often does, she wanted to rest a little. I left her in bed for about thirty minutes before returning to see if she wanted to get up. I was careful not to suggest that she should get up or that I was pushing her. Fortunately, she said she was ready for her clothes. I only helped her when she wanted help.

After she was dressed, she wanted to lie down again. I told her that would be fine. I put on the album from the musical Annie and went to the kitchen. I returned fifteen minutes later to see if she was ready for lunch. She was in a good humor and ready to get up. From that point on everything went smoothly. One would never have guessed that she had been upset with me at all. It took almost two hours from the time I went in to get her up until we left, but it paid off. Rushing her only makes things worse. I know that well but didn’t approach her that way from the beginning.

It was clear from the time she got up that she was moving slowly. I believe if I had begun with a gentler approach, we wouldn’t have had a problem at all. I was impatient at her slowness and the fact that she spent so much time washing her face and arms when she was about to get in the shower. That didn’t make sense to me, but that was not what mattered. It probably made sense to her because she couldn’t remember that she was going to take a shower. At any rate, I have learned that it pays to be in sync with her mood and desires and move from there. I think Brannaman and Mr. Rogers would agree.