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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.

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A Minor Bump in the Road

It has been almost ten months since I engaged the services of an agency to provide a sitter for Kate three afternoons a week. I agonized over this for several months prior to taking action. I was concerned about how Kate would respond. It turned out I didn’t need to worry. She responded quite well. During the first couple of weeks we tried several sitters that didn’t work out, but we quickly settled into the two who are with us now. Anita comes on Mondays. Mary comes on Wednesdays and Fridays.

Although things have gone well, I have never completely adjusted to leaving her with someone else. On several occasions, one of the sitters has been unable to be here. In these cases, the agency was prepared to send a new person. Each time I declined. I didn’t want a new person to come in without our meeting her ahead of time. I know we are going to need more sitters as time goes on, but to me it is important to have them come out to the house for an initial interview before I leave them with Kate. That leads me to what happened yesterday.

Last week, I received a reminder of a meeting of an advisory board on which I agreed to serve several months ago. I called the agency to see if they could arrange for either of our current sitters since my meeting is in the morning and this is not one of our regular days. The person with whom I spoke said that they were both assigned to other clients at that time, but she would see if she could do some switching. I waited until Monday and called back to see if she had been able to make a change. She said she was still working on it.

When I hadn’t heard anything by yesterday, I called again. The person who answered the phone told me they were sending a new person. Of course, I told her I didn’t want a new person and that if that were impossible, I would just miss my meeting. I felt the person giving me the news was not as understanding as she should have been. I did not have a problem with their not being able to provide the regular sitters. I did object to their not calling me to let me know. I felt the person I spoke with yesterday was being too defensive and didn’t show  proper concern for Kate’s or my feelings about the situation. That was especially true since I would have to leave for my meeting before Kate would be up. I didn’t want her to wake up and find a stranger to greet her.

This is not a big issue, but it is the second time in the past few weeks that they have surprised me. The first one was a phone call asking me if I still wanted a sitter on Monday. I told them I did but was curious as to why they should ask. She said, “We noticed that you haven’t had anyone that day in a while.” I told her that one of those days was because the sitter was sick. The other was Memorial Day. They had specifically called to see if I would need them on that day. I told her, as I have for other holidays, that would not be necessary. I felt that should not have been construed as a desire or intention to reduce our in-home care. In fact, when we began the service I had conveyed my desire to keep Kate at home. That would eventually involve 24/7 care. It just seemed like they didn’t understand our situation.

As with so many things, I believe the situation could have been handled better on both ends of the line. I should have been more specific about my desires for sitters. I depended on that’s being conveyed to the staff by the representative with whom I made the original arrangements. I think I need to go into the office and meet with each of the staff personally. Communication is always so difficult, especially when you are dealing with multiple people. There are at least 4 different people I talk with at the agency. I believe each of them has individual responsibilities and skills that are different from the others.

As I say, today’s issue is not a major one. I just want the agency to be more of a partner in Kate’s care. They need a better understanding of situation and our long-term plans. I’m going to see if I can facilitate that.

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Eating out has its challenges.

Occasionally, someone asks how, or if, I am able to maintain a balanced, nutritional diet since we eat out for all our meals (lunch and dinner). The answer is I find it challenging. Kate and I are drawn to slightly different food items. That has led me to repeatedly visit restaurants where I know she and I will both be happy.

She has a much stronger preference for carbs than I do. I don’t mean that I don’t like them. I do, but I attempt to control my diet by eating salads for most lunches and some dinners. Typically, I avoid bread except on Sunday when we eat at Andriana’s. I like their bread more than other places. We also share lots of meals. That helps a lot. For example, at the Bonefish Grill last night, we split an entrée of 4 grilled shrimp and 4 scallops. It came with a small house salad which I ate. For our sides, we got sautéed spinach and mashed sweet potatoes. I ate the spinach and Kate ate the sweet potatoes. This works pretty well for me.

The big problem for us is desserts. We both love them. For a long time, however, we have only eaten dessert infrequently. The major exception is when we eat at Casa Bella. Their Amoretto cheese cake has been a favorite of ours for many years. We always split a piece when we are there. That was fine when we were just going there periodically. When they started their music nights, that meant eating there three times a month. More recently, we’ve started going to another small Italian restaurant that makes its own gelato. We eat there every Wednesday night. We’ve added a single scoop of it to our weekly routine. We’ve gone to Carla’s regularly for about a year. We eat lunch there on Tuesday. A few months ago, we discovered they also make their own gelato, and we love it. We now get one scoop of it each week, and it’s a little larger than the one we get on Wednesday nights.

We’ve eaten at Andriana’s on Sundays the past three years or so. We had never had a dessert there until a few weeks ago. For some reason, our server asked if we would like dessert. She probably hadn’t done that since the first few times we had gone there. As I was about to say no, Kate said, “What do you have?” I knew it was all over then. It turns out they had a special that day, a banana pudding cake. It was a yellow cake with two thick layers of banana pudding and a heavy cream cheese icing. Since then we have had dessert two other times. I’m afraid this could be habit forming.

To make matters worse, we’ve replaced our regular Tuesday night restaurant with the Bonefish Grill. As I noted above, we split a meal there. I failed to mention that it comes with dessert.  <g>

Here’s the real dilemma for me. I could use my will power and skip the desserts; however, one of the pleasures of our marriage involves our sharing desserts. I don’t know how much longer this will last. In the meantime, I have opted to keep it going. I’ll have to figure another way to keep my weight down.

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As Expected, A Strong Finish

I am pleased to say I didn’t have any false expectations about the balance of our day yesterday. The movie, Won’t You Be My Neighbor?, was as good as it was three days ago. I didn’t say a word to Kate about its being the second time we had seen it. I just said I was taking her to a movie. She asked the name, and I told her. She didn’t show any sign that she recognized we had already seen it. She asked what it was about. I told her it was about Mr. Rogers. That appealed to her.

As we entered the lobby, we saw two people we know. One is a member of our church. The other is one of Kate’s favorite PEO sisters. It was no surprise that she didn’t remember either name. I was struck, however, as we walked away. She said, “I know that person (her PEO sister), but I can’t remember her name. I remember that I really like her.” When I told her, she recalled the name but nothing else about her except liking her. This is yet another example of her intuitive thinking in action.

She loved the movie. I am confident that she never remembered seeing it before. She talked about how good it was, but she didn’t know it was about Mr. Rogers. When I told her, she said, “And what did he do?” I told her he had a children’s TV program.

It was time for dinner when we left the theater, so we stopped by Bonefish Grill and had a nice meal. When we got home, we watched the first part of the 25th Anniversary Concert of Les Miserables. We had watched it a couple of weeks ago. She had loved it then and again last night. It is my favorite musical. I don’t know which I enjoyed more, the concert or seeing Kate so engaged. She didn’t even touch her iPad, a rarity. The day ended even better than I had expected.