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Alzheimer’s is Making Its Presence Felt

As if I needed further confirmation, yesterday was another time when Alzheimer’s seems to be taking over our lives. It was Monday, my Rotary day and the day our sitter arrives at noon. I turned on some music to gently wake Kate around 10:40. That should have given us plenty of time to be ready, but that was not to be.

She was still asleep when I went to wake her at 11:00. She smiled and was in a good mood, but it was also a morning when she didn’t want to get up and didn’t recognize me. I explained that Cindy was coming to take her to lunch and that I would be glad to help her get ready. She said, “I’ll get up.” This is what she said repeatedly the day before and on the few other occasions when she didn’t want to get up. I tried not to push her because she is then defiant and isn’t going to comply.

I tried some music that she liked. We even sang a couple of songs together, but she wasn’t going to get up. I accepted the fact that she wasn’t and got her a breakfast bar so that she would at least get something in her stomach.

When Cindy arrived, I briefed her on the situation. I also took her to the bedroom to show her the clothes I had laid out for Kate. I told Kate goodbye, and she was quite accepting of my departure.

I had intended to go directly to the Y after Rotary. Instead I put in a call to Cindy to see how things were going. She didn’t answer. I decided to drop by the grocery for a few breakfast items and then go home to check on Kate. When I arrived, I discovered that Cindy had gotten her up and dressed and had given her a breakfast bar and a Dr. Pepper. We chatted briefly, and Kate seemed back to normal. She didn’t express any great enthusiasm to see me.

Cindy still had another hour and a half before she was to leave. I was encouraged by how Kate was doing and decided I would leave. I told Kate I had a few more errands to run and would be back a little later. She very adamantly said, “You are not.” At the time, she was eating a breakfast bar. I remembered that it was the last one and told her I forgotten to buy more (which was true) and needed to go back to the grocery store. She accepted that. I went back to the store. Then I dropped by Starbuck’s for a while before returning home. This was a time that I really appreciated the break and wished there had been time to go to the Y.

After Cindy left, we had about an hour before we would normally go to dinner. I suggested that Kate and I look through one of her family photo books. She liked the idea. We sat on the sofa and started to go through one of them. She was interested, but, within five minutes, she said, “Would you mind if I . . .?” She didn’t finish her sentence. I knew she was tired. She wanted to lie down for a while. I told her that would be fine. She must have been very tired because she actually went to sleep. An hour later, I asked if she was hungry, and we went to dinner.

She was tired when we got home. I put her in her chair in the bedroom and gave her the iPad. Then I turned on the evening news while I put fresh sheets on the bed. I soon noticed that she was just staring at the TV and hadn’t used her iPad at all. I asked if she would like to get ready for bed. Then we went through the routine of getting her teeth brushed and into her bedclothes. She was very cooperative. I put on some YouTube music videos that she likes, and she was asleep very shortly. That is unusual. I was especially surprised after she had gotten up so late and taken a nap just before dinner. She must have been very tired.

It was two weeks ago yesterday that we had our first experience like this. That was the day I thought she was depressed. None of the subsequent experiences made me think she was depressed. One or two times she just seemed tired. Saturday it seemed like a combination of being tired and being dehydrated and, perhaps, experiencing low blood sugar. Yesterday, it seemed to be a simple case of being tired.

I should add that almost simultaneously she has been unsteady on her feet. I say almost because she has experienced mobility problems for a while, but she has been particularly uneasy walking during the past two weeks.

I have reflected more on her symptoms. It seems like her body is in the process of shutting down. That is to be expected with Alzheimer’s and other forms of dementia. Part of the problem for me these past two weeks is my desire to continue living as we were. I plan to adapt to the current changes by accepting the fact that we may not be able to go out for lunch and, perhaps, not dinner on a regular basis. There are a variety of other ways that I can arrange to take care of meals.

The bigger issue for me is the loss of social contact. That has been very important for both of us; however, that is also something we should be able to manage. It is no surprise to me that we are facing this issue. At the time of Kate’s diagnosis, I never imagined that we would be able to live so “normally”  for so long. Of course, it hasn’t been normal at all, but we have been able to stay active. The suddenness of the recent changes has led me to respond as though this might be something that passes as quickly as it came.

I think it is good for caregivers to know what we can and cannot change. I have already accepted many things that are beyond my control with Kate’s Alzheimer’s. This may be one more change to which I will adapt. If this isn’t the time, it won’t be long until it is. I am ready to accept that.

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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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Nine Years Ago Today

Most people remember specific dates that represent something significant that happened in their lives. I have a number of those, our wedding date, Kate’s birthday along with those of our children, grandchildren, parents, and siblings. We celebrate dates like these, but there are also dates when something happened that we don’t think of celebrating. January 21, 2011, is that kind of date for me. Nine years ago today, Kate’s doctor delivered the news that she has Alzheimer’s.

At the time, the news was devastating, but we made a commitment to make the most of the quality time remaining to us. I had no idea how long that would last. Here we are nine years later and still able to enjoy life and each other. I am very grateful for that. I can honestly say that these years have been among the best of our marriage.

Today, however, I feel other emotions as well. They are more like the way ones I felt when she received the diagnosis. I am just as intent on making the most of our time together, but at this last stage of her disease, I am more than bit apprehensive. I know that we won’t continue to live the way we have the past nine years. We are at the beginning of the stage people imagine when they think of Alzheimer’s. Our quality time is going to be more limited. This doesn’t mean our experience of “Happy Moments” will cease. It is just that they will be different. Even in the past few weeks, I see the challenges increasing. I mentioned a couple of them in my previous post. Another one occurred yesterday.

Kate was just as tired as the previous morning, perhaps even more so. Off and on for an hour and a half, I worked to gently wake her before my efforts met with success. I began with some soft music and gradually changed to more lively music. The first two two or three times I went to check on her, she was sleeping so soundly that she didn’t hear me at all. That has never happened before. My reward was that she smiled when she finally responded the last time I tried.

She was slow to get up and wanted to rest a little longer after she was partially dressed. While she rested, we talked. She repeatedly asked my name and where she was. This was a time when she didn’t remember me as her husband, but she spoke very comfortably with me. She didn’t express any great surprise when I told her we were married, but that didn’t stop her from asking my name.

She was in a good humor and kidded me a good bit. While lying in bed, she wanted us to sing something. I sang Edelweiss, but she didn’t sing along because she couldn’t remember the words. She wanted me to sing it again. I did and then played it on our audio system. That way I could give her the words just before each phrase. She enjoys singing.  It was an unusual and pleasant way to start our day.

It was our day for the sitter. When she arrived, Kate wondered who was at the door. I told her it was “Cindy, your friend who takes you to lunch on Monday.” She didn’t remember her but was very nonchalant in her response. She greeted Cindy warmly and never hesitated about my leaving with her. I didn’t have Rotary yesterday and almost canceled the sitter, but I thought I could use the time. I have also wanted to strengthen the bond between the two of them. I have had the distinct impression that Kate favors the sitter who comes on Wednesday and Friday and has been with since our second week with sitters. I believe that continuity helps and hope we don’t ever lose her.

The rest of our day went well. Kate was especially taken with some YouTube music videos I played for her last night. That took the place of her iPad on which she had started to work puzzles but lost interest. It was nice to see her enjoying herself. She was still awake when I got in bed. We chatted briefly and expressed our love for each other.

I make a point of mentioning the challenges of getting her up, her confusion and failure to remember my name and our relationship along with the good time we had once she was up. This is a good snapshot of what “Living with Alzheimer’s” is like for us. As long as she is happy, we will continue to live well. I hope I am wrong about the changes I believe will occur in the coming year. Despite my expectations, I am very grateful for the good times we have had in the past and feel sure we will have more in the future. We have, indeed, been fortunate.

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Change and Adaptation

Like most people, I tend to look for explanations for why “things happen.” I think that is part of our natural curiosity. In addition, I have spent a career looking for reasons that people do what they do, why they change, and what they might do in the future. Since Kate’s diagnosis, I have tried to understand everything that is happening as well how to prevent and solve problems. The most important thing I have learned is how difficult it is to know what is coming next and why.

I’m thinking about this while at Panera. It’s 8:37, and we’ve been here about thirty minutes. This is about the third time we have been here in the last few days. In some ways, this doesn’t seem unusual to those who have read my earlier blog posts or those with whom I have talked about our almost daily visits here. Those regular visits declined over a year ago. I related that to changes in her sleeping. In turn, I attributed her sleeping later to the progression of her Alzheimer’s. For months our visits have been infrequent. What has made her get up earlier recently? Is this something that will continue for a while, or are these a few isolated events?

The answer to these questions is “I don’t know,” and that is the answer I have given for most of the changes that have occurred during the past nine years. What I do know is that Kate’s changes mean that I have to change as well. My natural tendency, however, is to continue doing what I have done before. I admit to being a creature of habit. The only thing that saves me is my desire to provide Kate with the best care possible. If that means I need to make a change, I do it. I don’t mean that making a change is necessarily easy. Each one comes with a measure of psychological discomfort. I like routine and predictability.

Early on, I thought that a writer like Neil Simon could have a field day writing about a couple like us, one with Alzheimer’s, the other with OCD. It really could be comical. On the other hand, I am pretty sure that even if a caregiver were not driven by a desire for order and routine, he or she would ultimately find it challenging to deal with the unpredictable changes that take place with this disease. I feel for those who can’t. I have read many posts on Facebook and Twitter and online forums in which caregivers rant and rave over the behavior of their loved ones. I know it can be very hard. My own situation is much easier because the relationship that Kate and I have now is a pretty good extension of what it was before. The major change would be her dependence on me, but she is generally cooperative and loving.

This morning was a good example. I keep a close eye on the video cam so that I can get to her quickly if she calls me or is getting up. I don’t, however, keep my eyes on it every moment. Today, I went outside to check the water level on our pool that has a leak. When I got back inside, Kate walked into the family room. She was looking for me.

It turned out that she had waked up and was ready to get dressed for the day. Of course, she didn’t know where to go or what to do. She was glad to see me, but she hadn’t panicked and was in a good humor. I apologized for not being there as she got up. It hadn’t bothered her. She just wanted her clothes. I told her I could help her. Then I took her to the bathroom to get the process started. When she started to brush her teeth, she asked, “I sure am glad you are here. <pause> Who are you?” When I gave her my name, she wanted to know “Who are you to me?” I told her I was her husband. She was surprised. I said, “Would you rather think of me as a friend?” She said no. During the next twenty minutes, we repeated this exchange several times. She was always surprised, but comfortable, with my answer. When I helped her dress, she said, “You know, you’re a pretty nice guy. I think I could like you.” I think that captures well what her attitude is like.

Now what does this have to do with change and adaptation? I’m about to tell you. This is the third day in a row that Kate has gotten up early. Each time it has been before or during my morning walk. I like that walk. It is not simply a time for a little exercise. I also listen to books. For me it’s a nice way to start the day before my responsibilities with Kate begin. After my walk, I work on my blog. When Kate is up early, it leaves me to find another time to write.

My point is that I like routine, and changes like her getting up much earlier change that routine. I’d rather not change. On the other hand, she was so nice this morning that I want to take advantage of the time we have to enjoy ourselves. That is a higher priority for me, especially at this stage. I may be having a harder time getting other things done, but it is a pleasure to have time like this.

An hour has passed since I started this post. We are still at Panera, and Kate is still working her puzzles. That’s an unusually long period of time without her getting frustrated. I have been helping her throughout, but she is doing better than she has done in a while.

BREAK

Whoops, it is now 10:45. As I was in the middle of the previous sentence, Kate hit a roadblock with her puzzles. We came home where I will now close and upload this post.

Despite her having trouble and wanting to stop, she was still in a good humor and wanted to help me gather our things together to go home. Once here, she hit her recliner where she is resting. That’s a good thing because I have a noon lunch meeting at United Way. That’s an hour earlier than the sitter comes. I arranged for a church friend from to take Kate to lunch and get her back home for the sitter at 1:00. I have done that once before, and it worked well. This is a person who used to be on the staff at church when Kate was the church librarian. They ate lunch together frequently and have always had a good relationship though we don’t see her often these days.

While Kate has rested, I took care of a number of household chores. Those never end, and I am always behind. It’s been a nice morning. I am glad she got up early even if it meant no walk that I didn’t finish this post until now. Until next time, have a nice day.

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Success With a Movie

Movies have always been an important source of entertainment for Kate and me. They were even more important during the early stages of her Alzheimer’s. It became increasingly difficult, however, for her to enjoy them because she couldn’t understand the plot or what was going on in the different scenes. That led me to become more careful in the movies I chose. I discovered that she could enjoy some movies if she liked the characters and they didn’t contain any depressive content. I focused on uplifting films.

Occasionally, I would try something that looked doubtful. Once in a while that worked. The best illustration is Darkest Hour. That would seem to be one she might not like. I knew, however, that she had always taken an interest in books and movies about World War II, especially those that dealt with the Holocaust. Although she couldn’t follow everything that happened, she was taken by it. At that point, she remembered Churchill and WWII. She understood the subject matter was serious, and she appreciated the acting.

After that good experience, I had a series of failures; however, I struck gold with RBG (saw it twice) and Won’t You Be My Neighbor? (saw it four times in four weeks). Two days ago, I received an email from our local arts theater that Linda Ronstadt, another documentary, was opening this weekend. I read a little more about it and learned that it is a “feel-good” movie. That cinched it for me. I really hadn’t followed Ronstadt’s career, but I had two of her CDs, ‘Round Midnight and Canciones de mi Padre and was always impressed with her success across so many musical genres.

I still had some concerns about how Kate would respond. I knew she wouldn’t remember Ronstadt although she has enjoyed Round Midnight for years including the past week, but I thought it might be worth trying. I’m glad I did. Kate enjoyed all of the film but was particularly moved during the last part when it dealt with her Ronstadt’s Parkinson’s. At that point, she put one arm around mine and held my hand with her other hand.

As we walked out, she said something she almost always says when leaving a movie, “you’re gonna have to explain this to me when we get home.” She couldn’t grasp what was happening, but she enjoyed the movie anyway. How do I explain that? I’ll try to do that in my next post.

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We’re Always Learning and Adapting.

LIVING WITH DEMENTIA: Please quit trying to make me remember something that I don’t. You see no matter how you keep trying to twist it to make me remember, I only get more & more frustrated & still don’t remember it.  (Written by a person with dementia)

After breakfast and my walk this morning, I went to my computer. I found the message above when I checked in on Twitter. It was timely for me. With the progression of Kate’s Alzheimer’s, I have to be much more careful how I respond to her. Things that have worked in the past don’t anymore. Being a caregiver requires greater attention to more things than most of us imagine at the point of diagnosis. That brings me to what is really on my mind today – Kate and her iPad.

As I have conveyed for years, working jigsaw puzzles on the iPad has been her primary self-initiated activity since she stopped her yard work and use of her computer. I have also pointed to the increased difficulty she has with her puzzles. With my help, she has been able to continue, but we have reached the point at which she can’t follow my guidance. For a while, the primary problem was getting into the store. Once that happened, she couldn’t do anything. It was easy for me to fix but impossible for her.

More recently, the problem has been her ability to locate the pieces she needs and to figure out where to put them. For as long as I can remember, she hasn’t wanted to ask for my help. I would simply notice that she was sitting with her iPad but not doing anything. Then I would help her. My first step was to drop the number of puzzle pieces from sixteen to nine although I go back and forth. My next step was to tell her about the edge pieces. In a nine-piece puzzle there are eight of these including the corners. That leaves only one piece that goes in the center. I discovered that it was hard for her to see the flat sides that identify an edge piece. Sometimes she seemed to get it, but most of the time she seems to have completed puzzles by trial-and-error.

The past couple of days her own approach has failed her. She wanted my help yesterday, and I tried again. This is tough for me because I do know that her lack of rational thought makes it impossible for her to understand, but she wasn’t ready to give up. She still wanted me to help her. I began by trying to get her to identify the four corner pieces. She was unable to recognize them. I put them in place. Then I spread the four edge pieces so that each one was beside the empty spot where it should go. I even put my finger on the piece and then on the space immediately adjacent to it. That was also too much for her. I put them in their places.

Now there was only one empty space directly in the center of the puzzle and one piece left. First, I put my finger on the space where it should go and said, “Can you see that this is an empty space?” She couldn’t. I asked if she could see that it was green. She could. Then I showed her that the whole screen background was green and that it was covered up when she put each piece in place. She was unable to comprehend what I was telling her. Then I asked her to give me her hand. I used her index finger to touch the space. I told her she wouldn’t see the green if she put the piece in that spot. I showed her the piece and asked her to put it in the space. She couldn’t do it.

All the while, I was thinking, “You’ve been doing some variation of this same lesson off and on for weeks. Isn’t it obvious that it’s not working?” That’s why the tweet at the top of this post caught my attention. In addition, I remember and old aphorism. “If you keep doing what you’ve always done, you’ll get what you’ve always gotten.”

I decided to do what I should have done earlier. I redirected her attention, something that is often recommended for caregivers. I reminded her that we had talked earlier about looking at one of her photo books and suggested we do that. She was ready. We looked one of the books for about fifteen minutes before she said she really wanted to look more but was tired. We stopped, and she lay down on the sofa for about thirty minutes before going to dinner. When we got home, she asked what she could do. I said, “How about working on your coloring book?” She liked the idea but had a hard time knowing what to do. She gave up after fifteen minutes and wanted to get ready for bed

So what am I going to do next time? The truth is I’m not sure although I know what approach I will take. Like everything else, losing an ability to do something occurs over a period of time. It comes and goes but gradually fades away. I believe there is still more time for her to enjoy the iPad. I want her to keep trying, but I am not going to be as persistent in trying to teach her what to do. I will look more and more to other options that will be easier for her. I’ll continue to try the coloring book. She has had some minor success with it. Maybe she will catch on to it. I told her there are no rules. She can color any way she wants.

As I have noted before, we are always learning and adapting. There will be more of that in our future.

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Kate’s New Chair

About a month ago, I mentioned Kate’s increasing difficulty getting up from a seated position. I don’t have any control over the seating when we go out, but I did think about what I could do at home. She spends far more time in our family room than any other room in the house except for the bedroom. That led me to think about getting a lift chair.

We went to the La-Z-Boy show room four weeks ago and ordered one. It arrived Saturday afternoon. She tried it out while the delivery men were still here and didn’t get out until time for dinner. That was almost three hours. I demonstrated how it would recline if she wanted to rest, but she preferred to work on her iPad in a seated position. When it came time to leave, I showed her how to raise herself up to a standing position. She was surprised but not overwhelmed by the way it worked. I was the one who was impressed. Much easier than my lifting her.

Yesterday we got a chance to see how it works in the reclined position. She was ready to rest as soon as we returned from lunch. Ordinarily, she would use the sofa. This time I suggested she try the recliner. I adjusted it so that she was practically lying flat. She was comfortable and remained there for three hours. I don’t know that she likes it any more than the sofa, but I believe she is going to enjoy being able to get out of it more easily. Of course, she probably won’t learn how to work the control that has only two buttons – up and down. That shouldn’t be a problem since either the sitter or I will be there to do the job.  I know it will become more useful as her ability to get up becomes more difficult.

It’s easy to look at this as a minor thing, but it represents our moving to a stage when her mobility restricts her more than it does today. I see it as another marker on our journey. In that respect, it is like my discontinuing my morning walk in the neighborhood for one inside the house, bringing in a sitter because I didn’t believe she should be left alone, or getting a handicap placard for the car. It’s another example of the changes we experience. Thankfully, we have adapted to changes in the past. I hope we will do the same as we approach the more challenging ones that lie ahead.

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Caregivers Forget Too

Rick Phelps was diagnosed with Early Onset Alzheimer’s in 2010 at the age of 57. He is a active advocate for dementia awareness and has written at least two books. He started a Facebook group called “Memory People” on which he wrote an interesting post a few days ago. In his message he expressed his frustration with people who can’t remember that he can’t remember. He says this happens even among his own family members.

He makes an interesting point. Caregivers often get frustrated when their loved ones don’t remember what we just told them. Just this morning I read another Facebook post from a caregiver that was pulling her hair out because her mother keeps asking to go somewhere. When she asks where she wants to go, her mother says, “I don’t know.” The caregiver herself didn’t seem recognize the problem is a direct result of her mother’s Alzheimer’s. I heard about another caregiver who wrote down a set of instructions for his wife who had dementia. That can be helpful for someone who can remember there is a written set of instructions and where it is located, but that’s asking a lot of someone with dementia. That is especially true as the disease progresses.

I like to think that I am more sensitive to this issue than many caregivers, but I, too, recognize that I sometimes (often?) say, “But I just told you.” I suspect that most caregivers know it doesn’t make sense to say things like that, but it can be hard to avoid.

It makes me think about my graduate school days in social psychology. During my doctoral program, I was influenced by an advisor who was a vocal exponent of behavioral conditioning. While I have drifted away from that somewhat, I do believe much of our behavior is a function of conditioning. Of course, it is far more complex than what happens in laboratory experiments with pigeons, but I believe we develop many behaviors that are so routine that they can be difficult for us to change. The best illustration I think of is the way we respond when the power goes out. We do silly things like turning on a light switch or the TV only to realize they need power too. We can all think about our own habits that are so hard to change.

So it is when caring for someone with dementia. It calls on us to rethink everything. To make it even more difficult, people with dementia generally appear to be quite normal in most ways until very late in the disease. That fact alone leads us to treat them normally as well.

But all of this is an effort to explain what some would call caregiver “mistakes.” Even though it is hard, caregiving calls on us to change as our loved ones change. One of those changes is how we communicate. Kate is more sensitive now. I have to be very careful what I say and my whole demeanor. The first thing I do when I walk into the bedroom to wake her is to get a sense of her mood. I try to respond in a way that is most helpful. I have found that what I say and the tone of my voice can greatly influence how she responds. She doesn’t want to be pushed. She is not ready for me to be too jovial though she often responds to a gentler expression of humor. She is a little slow to get up. That requires that I try to get in sync with her and not the other way around. When I get it right, it is easier for me to get her up, dressed, and ready for the day and, to top it off, in a good humor.

I feel I have learned a lot since Kate’s diagnosis, but different things are required at every stage of the disease. That means I am always adapting and admit that I have been far from perfect. Kate is good about letting me know when I fail to do the right things. I appreciate that. When I rush her, she frequently says, “Stop. You’re going too fast. Just give me one thing at a time.” I also benefit from her own sensitivity about what she says to me. For example, yesterday morning I started to help her put her slacks on. She stopped me and said, “I can do that myself.” I said, “I’m sorry. I know I shouldn’t have acted so quickly. I wanted to be helpful.” She said, apologetically, “I know you meant well.” Working together like this is a good reason we have been able to get along as well as we have.

I continue to believe Kate and I have been fortunate, and I am cautious about passing along advice to other caregivers except at a general level. What I have done is tailored very specifically to Kate’s personality, her symptoms, and the nature of our relationship. I believe other caregivers should examine their own situations and respond in ways that address their particular, and often, unique situations.

In some ways, I think this last stage that Kate is entering is most critical because she is so sensitive. I try to retain my focus on keeping her happy and safe. I find that when I do that, everything else seems to fall in place. So far, that seems to be working.

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Thinking About Stress: Part 2

In yesterday’s post on stress, I discussed two aspects of caregiving that I believe influence the degree of stress that I and other caregivers experience. My intention was to convey why I believe my stress is less than that of other caregivers. In my earlier post, I suggested that my caregiving load has been comparatively light and that my prior caregiving experience as well as my personal characteristics have enabled me to cope with the challenges I have faced. Today I focus on the ways in which I have been able to minimize stress. I am fortunate to have a variety of ways to address the problem, and I depend on all of them.

Binging on music and eating out are unquestionably my best ways to manage stress. I have written extensively about both of these and won’t say more about them here, but they have been great therapy for Kate as well as for me. They have provided us with pleasure and kept us socially engaged. We are fortunate to share these interests. That is not true for every couple.

Exercise has been a part of my life for a long time. Although caregiving has changed that somewhat, it still is an important part of my life. As I became less comfortable leaving Kate alone, I engaged a sitter three afternoons a week so that I could continue going to the Y as well as doing other things cited below. I reduced the amount of time spent at the Y but added a 40-minute walk every morning.

Reading is another of my pleasures. Before my retirement, I focused on my career. Much of my reading then was influenced by my professional interests Since then I have broadened my reading substantially. After Kate’s diagnosis, I opened an account with Audible and get two books a month. I listen to books while I am at the Y and when I walk in the morning. I like being able to accomplish two tasks at one time. I also read some on my iPad. I wanted to learn more about the experiences of other caregivers and began to read books they as well as people with dementia have written. I have read over thirty of these.

I have participated in voluntary organizations for most of my life. As a caregiver, I have had to reduce that, but I fit some in my schedule. I’ve been a Rotarian for 36 years. I currently co-chair our CART Committee that collects weekly contributions from our membership for Alzheimer’s research. I have been active with United Way for 35 years and serve on two of their committees. Although I no longer serve on the board, I maintain contact with a local hospital foundation that raises funds for the area’s largest hospital system. Until three years ago, I was still active in our church. Now my only involvement is serving on a committee that calls church members on their birthdays. The pastoral staff has remained in contact with me. Kate and I have lunched with three of the pastors, most frequently with our senior pastor with whom we had such a good experience this past week. He was the first person to approach me with a concern about Kate. That was July 2011, six months after her diagnosis. They have definitely stayed in touch.

I also meet with friends for coffee. Mark Harrington and I get together each Friday afternoon for over an hour at Starbucks. I also have a church friend I meet at Panera about once a month.

Email contacts have also been important. In particular, I am in daily contact with two college friends. In the past, we could easily have over twenty messages a day. Our correspondence not as frequent now, but rarely does a day go by without several messages.

For many years, we have had good friends in Nashville. We have a long history of daytrips to visit friends. We have continued those visits since Kate’s diagnosis. One of those is Kate’s closest friend who is now in memory care following a stroke four years ago. We try to visit with her every four or five weeks. In connection with that visit, we often get together with another of our Nashville friends.

I launched this blog and opened a Twitter account in January 2018. These have opened up an entirely new avenue for minimizing stress. They have helped in two ways. First, they provide new activities that I can do right from home. Second, they have enabled me to make new online friends that have been very supportive. I have learned much from them.

All of these activities have kept me active and provided different ways for me to be socially engaged. I expect my stress is likely to increase in the future. That’s because Kate is requiring more personal care than in the past. Up until now, I have had sufficient time for the personal things I like to do. In addition, most of our time together is spent doing things we both enjoy.

The major part of my stress doesn’t arise from my direct caregiving responsibilities. It comes from the sadness I feel as I watch Kate’s decline. Although I can’t predict the timing or all the specific things we are likely to encounter, I know all too well where we are headed. As we move forward, I intend to do what I have done in the past. I’ll take great pleasure in our Happy Moments and enjoy the satisfaction of keeping her as happy and secure as I can. I feel it’s a privilege to walk with her through this last chapter of her life.

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Kate’s Mood and Happy Moments

As Kate continues to exhibit more of the symptoms associated with dementia, I find myself entering a new phase myself. I’m not sure what to call it. I could say it is just adapting, but that isn’t precise enough. It involves accepting her decline for what it is – the loss of all her rational abilities. I can’t change that. I can feel sad as I often do, but I want to do something more constructive. That leaves me to focus on making her happy. I’m not always able to do that, at least in a very short span of time, but she is content and happy most of the time. That is particularly true after we get by the “waking up period.” That remains the most challenging time. In most cases, by lunch she is in a better mood. Afternoons and evenings almost always go well.

Yesterday was a perfect example. She was up before 8:30. She appeared to recognize me as her husband, but she was a bit confused about where we were. I had gone to her room when the video cam alerted me that she was beginning to get up. When I got to her, I said good morning and asked if I could help her. The first thing she said was, “Yes, get me out of here.” Then she said, “Where are we?” I told here we were in our house and that she would recognize it when she was a little more awake. She didn’t show any excitement or interest about being at home. She was still too confused for that and wasn’t in a happy mood.

After her trip to the bathroom, we went back to the bedroom to dress. She was very cooperative in getting dressed. She still shows some signs of independence, but she likes some kinds of help. She prefers that I put her socks on for her. I suspect that is motivated by convenience. She doesn’t have to lean down. She just sticks her feet out like a child, and I slip them on. When she has taken a shower she likes it when I help drying her back and legs and blow drying her hair. Sometimes she wants me to brush her hair as well.

When we were about to finish, she asked, “Who are you?” I gave her my name and said told her I was her husband. She didn’t believe that. I said, “Just think of me as a friend.” She liked that better. I brushed her hair. She thanked me. Then he said, “Of course, you get paid for this.” I said, “I do?” She said, “You should.” In a few minutes she made another reference to my being paid for helping her. Could she be thinking of me as a paid caregiver?

At lunch, she said something I thought was funny. Without making any reference to what we had said earlier, I asked if she knew how long we had been married, She immediately said, “Too long.” I said, “Good reply. You’re funny.” She said, “I learned it from you.” Her mood had changed. She was happy.

After lunch, she wanted to rest. That was no surprise since she had gotten up at 8:30. The sitter arrived while she was resting but not asleep. I didn’t say I was leaving until after Mary arrived. When I mentioned I was leaving for the Y, Kate didn’t act alarmed nor did she say anything like “Why don’t you stay with us?” She stood up and greeted Mary warmly.

When I returned, Kate was still on the sofa. She smiled when she saw me and was very happy. She told me she was glad to see me. I said I was glad to see her as well. After Mary was gone, she repeated multiple times how glad she was to see me. We got ready to leave for dinner. In the car, she again said she was glad to see me. By this time, she was in a very good mood. That continued for the balance of the evening. I didn’t have to work at keeping her happy. It’s just that rough edge that we sometimes have at the beginning of some days.

Her mood when she wakes is something I can’t control, but I can focus on what happens after that. So far, her mood has always improved in a relatively short period of time, and the afternoons and evenings are the most predictable Happy Moments. Maybe I should think of this as a “Mood Management Phase.” That’s what it’s all about now.