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Eating Out: How Long Will It Last?

This journal has been filled with experiences Kate and I have had when we eat out. I believe it has been of major therapeutic value to both of us. Sometimes I wonder how long we will be able to do this. I know there will be a time when it will be more challenging to take Kate out so much. I am hoping that is a long way off.

As I watched Kate eat a hamburger at lunch yesterday, I thought about something else that could be another problem in the long run. Previously, I have mentioned that when she eats a sandwich, she often takes off the top slice of bread or bun, picks through the various items that were between the slices, and eats them with her hands. I have stopped ordering anything with lettuce or bacon on it. She almost never eats them. I don’t understand about the lettuce, but she doesn’t like crisp things. That rules out the bacon. She may or may not eat any slices of tomato.

After taking off the top of her hamburger bun yesterday, she picked up the rest of the burger and took a bite. A couple of minutes later, she picked up the hamburger patty itself and ate it. Then she ate most of the bottom and top of the bun. When she finished, she had eaten almost all of the burger, bun, and contents. That is unusual. When she eats a sandwich at Panera, she picks out bits and pieces and leaves a messy looking plate. She doesn’t like the crust on bread and usually leaves it.

Two of the restaurants where we eat regularly serve hot bread that she likes. It is more like rolls. That means there is a lot of crust. She pulls it apart and eats everything but the crust, leaving a pile of crust on her bread plate.

Thus far, I haven’t found any of these things to be a problem. I think they are not even noticeable except to the servers who pick up our plates. Even they don’t normally watch her while she is eating. I believe she still sensitive about eating this way when we are with friends. At least, I haven’t noticed the same behavior when we are eating with them. Still, I can help wondering what might happen in the future. At the moment, I don’t plan to worry about it. Time will tell.

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Just an Ordinary Day. That’s Good.

Kate got up a little later yesterday morning. We didn’t get to Panera until just after 11:00. By that time most of the morning crowd had gone. There was only one man in the area where we sit. He is someone we see periodically. We chatted with him briefly, and Kate had her muffin while I finished up my earlier post.

From there we made our regular visit to Carla’s for lunch. It was especially crowded and, thus, a little noisy. Several of the regular staff have not been there during the past few visits. That has made a little difference in how I have felt about the place. It’s been a reminder that it is not just the food that is important. We liked our server and would be happy to have him again if one of our regulars is not available. As always, our food was good. We also saw our pastor who was having lunch with another church member. We had a nice conversation with him. Before leaving, the man who owns the building across the parking lot from my office walked in. We talked briefly with him as well. So as it turned out, we had a good meal while enjoying brief conversations with people we know.

When we got home, we had almost an hour before both of us had appointments for haircuts. Since Kate’s hairdresser retired about five years ago, we go to the same person. That’s a nice convenience. During our time at home, I put on my album of Les Miserables. After seeing how much she enjoyed the DVD, I was curious to see how she would respond to the audio version. I can’t say that it had the same impact as the DVD. Visuals really do make a difference. However, she was quite taken by it. She had been working on her iPad, but put it down on several occasions just to listen to the music. I can’t fully express the pleasure I get in seeing her respond this way. I love sharing the music with her.

When we returned from getting our haircuts, we sat in the family room and listened to more music until time for dinner. I selected a number of things that I knew she would like. I have an album of the Susquehanna Chorale singing several songs she especially likes, Danny Boy, Shenandoah, Loch Lomond, and Swing Low Sweet Chariot. I looked over at her and saw that she was softly singing with the music. Once again, I could see the power of music. As a result of my reading Judy Cornish’s The Dementia Handbook, I have a better understanding why.

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Follow-Up on Dependence

Yesterday when I returned home to relieve the sitter, Kate was resting on the sofa in the family room. I walked Anita to her car to find out how things had gone. She said they had had a good day. She had met us at Panera but she said they didn’t stay long after I left. I was pleased to hear her say that they had spent a long time going through the photobook that Kate’s brother had made for her. She said that Kate enjoyed telling her about all the people in the pictures. This made me especially happy because I had been concerned that Kate was not enjoying her time with Anita as much as she does with Mary.

Anita told me that Kate had asked about me a couple of times, wondering when I would be home. That is the first time Anita has said anything like this. I took note because Mary has also mentioned Kate’s asking about me. Kate had wanted to be home when I got there. These are little things and may have no significance, but I think they are consistent with her increasing sense of dependence on me. It is more than just the things I do for her. From what she tells me, she just feels better when we are together.

After Anita left, Kate continued to rest a little longer. Then she was ready to go out. We went to Panera. We had been seated for about fifteen minutes, when she said, “I like Panera.” Then she commented on the general atmosphere and the people who were there. She continued working her jigsaw puzzles on her iPad. In a few minutes she stopped. She said, “I like being here with you.” I said, “I’m glad. I like being with you.” As she often does, she moved her lips to say, “I love you.” At the same time, she brings her index finger to her lips and then points to me. Then I said, “We’ve done many special things over the years. Many of them, like being together at Panera, have been ordinary things, but they’ve been special to us. And we’re going to have many more.”

I still see signs of Kate’s desire to be independent. At home after dinner, she brought out clothes for her to wear today. She had a pair of pants, a top, underwear, 3 pair of socks, and 2 pair of shoes. She does this once in a while. I take it as further recognition that it is confusing to get her things together at the last minute. This way it’s done for her when she wake up. Her dependence on me is even reflected in this simple act of preparation. She asked me to check her and make sure she had everything. I assured her that did. Moments like are very touching.

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Lots of Little Signs of Dependence

Last night as she was getting ready for bed, Kate said, “I know one thing; I hope I go before you. I wouldn’t want to live without you.” That led to a discussion of how each of us would not want to live without the other. In that conversation, she repeatedly made statements that underscored her genuine belief that she is very dependent on me. She clearly recognizes there are many things that she either can’t do or finds too challenging.

Her comments come as I am noticing more little things that are different. For a long time, I assumed responsibility for getting my laptop, iPad, her iPad, and my cup to take with us to Panera. She has almost always gotten her own cup. Recently, she has occasionally given me a puzzled look when I’ve asked her to get her cup. She couldn’t remember where we keep them. A few times she has forgotten where to get ice when she fixes herself something to drink.

For a long time she has had trouble closing the garage door. She would almost always hit the button for the doorbell. She has given up closing it. She leaves that to me. Similarly, when we come in at  night, she has locked the door behind her. That has become more difficult for her. She leaves it to me.

She gets confused about the light switches in our kitchen. Now, she frequently asks me to take care of the lights. Something that really can be trickier is turning off the water for the kitchen sink. We have a handle that we push to the right to turn on the water and left to turn it off. We push it back for hot water and pull it forward for cold. Several times lately she has called me into the kitchen to turn it off for her.

There are two other ways in which she is changing. One is relying on me to pick out her clothes. This happens both in the morning and at night when she is getting ready for bed. This is something that is inconsistent. She still normally gets her own clothes, but she seems just as happy when I do it, sometimes happier. It seems like it is just too difficult to decide what to wear. I am thinking about reducing the number of choices she has. That might help.

The other change is wanting me to hold her hand when she goes up or down a curb or stairs. As with her clothes, she is not consistent. She often refuses my hand when I offer it, but she is accepting my hand more than in the past and sometimes asking for my hand before its offered.

All of these things together (and there are a lot more of them) illustrate her growing dependence on me. I’m glad I can help.

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A Quiet but Nice Day

Kate slept a little later this morning, so we didn’t get to Panera until just after 11:00. Then Andriana’s turned out to be busier than usual. That meant it took a little longer for lunch which actually worked in our favor. This has been one of those days when Kate has asked more questions about our family (her father’s name, my father’s name, our children, and where we live). I took advantage of that time to reminisce with her. I was partially motivated by her anxiety attack week before last. That night she didn’t know who she who or where she was. Since then I have been trying to give her a little more information about her and her family.

Today’s conversation dealt largely with our attendance at so many live performances since our first date to Handel’s Messiah. I reminded her that we began our 50th anniversary celebration with a trip to New York City during the Christmas season where we attended Messiah at St. Thomas Episcopal Church.

Then I gave her a Cliff Notes’ summary of other performances we have enjoyed since we married. Most have involved musical theater. The first Broadway and Off-Broadway musicals we attended were on our first trip together to New York in 1967. We saw the original productions of Man of La Mancha and Cabaret. Since then we have seen as many as 30-40 shows there and many more here in Knoxville. We have also had season tickets to the Knoxville Symphony for 30 years. We haven’t generally attended some of the more popular entertainers, but we have been to concerts by Louis Armstrong, The Mamas and the Papas, Gloria Loring, Eartha Kitt, Jimmy Buffet, Marvin Hamlisch, Bette Midler, Billy Joel and Elton John, Tony Bennett, Paul McCartney, Art Garfunkel, and Willie Nelson. Opera has more recently entered our lives but is a favorite. We’ve enjoyed opera at The Met in NYC, Vienna, Berlin, Amsterdam, Zurich, and Sydney as well as quite a number of the Live in HD at The Met performances broadcast live in local theaters.

I went through these things knowing that she wouldn’t remember many, if any, of the things we had done. She does, however, remember that we have attended lots of events like these. More importantly, she was very attentive and seemed to enjoy my them bringing up. At the end of our reminiscing, she noted how fortunate we have been to have had so many good times together. I agree and will cherish the memories when we are no longer able to share them.

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Success: Three Times in a Row

As I suggested in my previous post, I took Kate back to see Won’t You Be My Neighbor? yesterday. That was the third time in the past eight days. It was, as they say, a “smashing success.” Once again, the theater was packed with an appreciative audience offering its applause when it ended.

Throughout the film, I kept looking over at Kate to see how she was responding. At various moments throughout the film, she expressed audible pleasure. I wasn’t surprised, but particularly struck, when she responded appropriately to things that were both funny and sad. I’ve said before that she generally understands what she hears, but she can’t retain it long enough for the knowledge to help her understand what follows. As the review in the NY Times notes, the producer gives its viewers a “feeling” for Rogers and his connection with children. I know that Kate understood that feeling.

On the way out, we bumped into a friend in the lobby. He commented about being a regular at this theater. When we parted, Kate smiled and said, “Well, I’m glad to know where we are.” We’ve also been regulars at this theater for many years, but I wasn’t surprised that she didn’t remember.

In the car, she said she wanted to read more about the film and Mr. Rogers. I told her we could check the Times review. She liked the idea. I read it to her shortly after we arrived at home. She listened intently. About midway through, she said, “I want to see it.” When I finished, she said, “I may want to see it twice.” I can’t fully express how much pleasure I got out of the fact that she liked both the movie and the review even if she can’t remember either right now.

This brings to mind something I have often read in a variety sources on caregiving. They suggest the importance of living in the world of the person with dementia rather than trying to get the PWD to live in our world. I think that is what Kate and I have been doing. It not only works for her; it works for me as well. Had it not been for her I would not have gone to see the movie even a second time. Even though I liked it as much as she did, I would have thought it silly to go again so soon. By living her way, I got to enjoy the movie another two times. I’m finding the same thing with the DVDs of musicals I have purchased in the past month. We’ve watched the 25th anniversary concert of Les Miserables twice, the last 30-40 minutes three times.

Her world is clearly different, and I am not denying the sadness I feel at her loss of her memory for names, places, and events. On the other hand, we’ve focused on music, theater, movies, and social engagement. Those are things we mutually enjoy. They continue to add to the quality of our lives, and I am grateful.

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Very Special Moments

I am always happy to report the many good times Kate and I have. Of course, some are more special than others. That was the case last night. It started a few minutes before we were to leave the restaurant after our weekly pizza. A couple I had first met professionally came in and were about to be seated at the booth behind us. They had been clients who really made a significant difference in the success of my business. I had always enjoyed working with them. It had been a while since we had seen them, and we got into a conversation. Instead of our leaving, we ended up sitting with them for quite a while.

I know that Kate did not remember their names or anything about our previous connection, but she handled herself like a pro. She continues to know how to greet people and engage in light conversations. It was much more than this that made our time special. As the four of us talked, Kate and the woman started their own conversation. I didn’t hear a word they were saying, but it was a pleasure for me to see Kate so engaged. This is a rare experience. In most group situations she ends up being left out, but one-on-one she can do well. We’ve had several of those experiences lately. I’ll have to work harder to arrange more in the future.

If the day had ended right there, I would have been happy. There was more to come. The previous three nights we watched the 25th anniversary concert production of Les Miserables. It’s a three-hour concert. We watched about an hour each night. This was the second time to watch this DVD in the past three or four weeks, but Kate loved it every bit as much as the first time. Because of this, I asked if she would like to re-watch the final segment again last night. She did. I was curious to see if the repetition would dampen her enthusiasm. Absolutely not. If anything, it was more intense. As she had done previously, she expressed her feelings audibly, both in comments and in “Oohs” and “Ahs.” She not only praised the quality of the singers voices but also their acting ability. She was talking specifically about their facial expressions as they conveyed the particular emotions appropriate to each song. I took note of her ability to recognize emotions as well as she ever could. It’s also another powerful reminder of the impact that music can have. It was important to us before Alzheimer’s and even more so since.

Now I am thinking of trying something else today. Several times this week, I have mentioned the Mr. Rogers documentary, Won’t You Be My Neighbor? At least once, she has said she wanted to see it. We saw it last Saturday. She enjoyed it so much I took her back to see it on Tuesday. I am seriously considering taking her again this afternoon. That might seem a strange thing to do. It would be unusual for us. I don’t ever recall going to see a movie three times, especially in one week. Two things are motivating me. First, she really enjoyed the movie the first two times. I think she is likely to feel the same a third time. Even if she liked it less, it would still be fun for her. Second, we don’t have any other plans for the day. If we don’t go to the movie, we are likely to spend a little time at home and also Banes & Noble. She would be working on her iPad. Although she rarely seems to tire of that, I think might be a good alternative. Whatever we do, I am optimistic that it will be a good day and grateful for all the good days in the past.

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I shouldn’t be surprised, but I am.

We were at Panera a little over an hour this morning when Kate wanted to leave. It was a little early for lunch, so we went home. As we left our table, we chatted briefly with a group from a nearby Catholic Church who meet at Panera several mornings a week after morning mass. As we walked out the door, Kate said, “What are our names?” I must have looked puzzled. She added, “You know, what people like the people we were just talking to would call us.” I told her both of our full names.

This is not the first time she has asked our names although she has always done it one at a time before. Nonetheless, I am well aware that she is beginning to lose the connection between us and our names. Why then, should I be surprised? The only thing I can figure is that so much of Kate’s behavior is quite normal that I don’t expect this kind of question. Thus, it continues to be somewhat jarring when I hear her ask our names.

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Predicting What Comes Next

For as long as I can remember I have followed regular routines. I’ve had many friends who kidded me about eating Kellogg’s Raisin Bran every morning from the fourth grade until three or four years ago. There really were exceptions, but not many. I have applied this same routine to caregiving though it doesn’t work as well. Kate is not naturally inclined to following a regular pattern. When you add Alzheimer’s to the mix, my activities are not as predictable as I would like.

Before this sounds like a gripe session, let me quickly say that Kate is the best person to care for that I can imagine. As we have for our entire marriage, we have been able to accommodate our differences with a minimal amount of effort. We owe that to something we have in common. Each of us wants to please the other.

Alzheimer’s is disruptive to routine. In most respects, some might find it surprising just how routinized our lives are. From the time Kate wakes up, our lives are pretty predictable. It’s before she wakes up that leads to this post. Until a few months ago, I knew about when she would get up each morning. It might vary by thirty minutes to an hour, but she got up around 9:00 and would be ready for a trip to Panera around 10:15. More recently, that has varied from as early as 7:00 to as late as noon. Yesterday, for example, I woke her at noon. She would have slept long if I had let her. I don’t know what time she got up this morning, but she was ready for Panera before 9:00.

In the past year, I have ceased making any commitments before noon. That is sometimes a challenge as it was earlier this week when I scheduled an appointment with her ophthalmologist. We had to work to find a time that was suitable for us and for the doctor. On the whole, avoiding any morning obligations has worked well. That’s something I plan to continue.
The only minor problem for me is on the days we have a sitter. I like to have lunch with Kate before the sitter arrives. About a third of the time, that requires my waking her. I don’t like to do that because she is always slow to wake up. I work hard not to rush her. On quite a few occasions, I have called the sitter and asked her to meet us at Panera. That works, but I would have enjoyed spending more time with Kate before having to leave.

The most important issue for me is wondering if the change in her sleeping pattern signals something else. I may be overly sensitive, but we have a mutual friend whose husband died earlier this year. We had been with them a few months earlier. His wife told me that shortly after we had been together, he started sleeping more. Then he started a decline that ended in his passing.

I recognize that Kate’s change is different from his. Hers is from a pattern that was fairly stable to one that is now erratic. His was from a stable pattern to a steady decline. Rationally, I know that this may not portend anything that should be of concern. As a caregiver, however, I am always sensitive to any signs of change. Most of them have been markers in her overall decline. This sensitivity is very unlike me. I think caregiving has led me to notice little things that I wouldn’t if Kate did not have Alzheimer’s. I have often thought that caregivers spend a good bit of their time either solving problems or trying to prevent them. I believe wondering if small changes in behavior mean something of greater importance is a natural consequence of that perspective on caring for someone you love.

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Remembering Mom

Today is my mother’s birthday. She died in 2002, four years after her doctor told us she had dementia. I remember how carefully she presented the news. There was no problem for my dad and me. We had recognized it for some time. I wish I could remember how long we had known. Looking back, I suspect Dad was aware of it when they moved to Knoxville in 1994. He had been having his own health problems. I suspect he may have been concerned about what might happen to her if he were incapacitated. I’ve had similar thoughts about myself although I’ve been fortunate not to have had signs of health problems.

Two things I do remember. One is that Mom used to comment on her poor memory. She frequently said, “I don’t know what’s wrong with me. I can’t remember anything.” In the early stages, I just thought it was a natural part of her aging. That’s what I thought about Kate as well. Of course, that really is the most likely diagnosis. It takes a while to recognize that it is much more than aging.

The second thing I recall is that Dad kept her busy. I thought he was just getting acquainted with a new city. It was that, but now I think it was more. They were active in a local senior center and worked as volunteers helping with the center’s mailings. I remember Mom’s opening an envelope from the center and showing it to me. She was so excited to receive it. She hadn’t remembered that she had helped with the mailing a day or two earlier. They also delivered Meals on Wheels. Dad may have been doing what I do with Kate, trying to keep her brain stimulated as much as possible.

My mom and dad were also fortunate that she had no special complications along the way. She just gradually lost all her memory. Many with dementia die of other causes. I would say she died from the effects of dementia itself. She finally reached the point at which she could no longer eat or drink.

Dad was a devoted husband and care partner. He cared for her with minimal help. The only regular help he had was from an adult day center where he left Mom on Wednesday mornings while he went to Kiwanis and then to the grocery. My brother, Larry, and I tried many times to bring in help or to move them to assisted living. He was very resistant to say the least. In the end, he did it his way. Mom slept in the same bed with him until a few days before she died. I recall Dad’s telling me that he tied a string from her wrist to his so that he could tell if she got up at night. That has much more significance to me now.

Two or three days before Mom died, Dad was turning her every two hours. His last time was about 2:00 a.m. He woke up at 5:00, and she was gone. She died peacefully without any pain and without the help of pain medication.

Mom always loved her boys. She thought Larry and I could do no wrong. Even  after she forgot who I was, she often said, “You’re a nice boy. You always were.” That’s something else for which I am grateful.