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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.

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Starting Slowly, but Hoping for a Strong Finish

In other posts I’ve noted that Kate has never been a morning person. Throughout our marriage, I’ve always been up much earlier than she. The exception was when she was working. Because of that we have never had breakfast together except when we are traveling. These days I let her sleep as long as she cares to. Over the past 2-3 months, she has been quite erratic. Yesterday and today, she has gotten up much earlier than usual. It was before 8:00 Sunday and today. When that happens, she gets sleepy and often wants to rest before lunch. Today she made it until after lunch.

Until we were just about finished with our lunch, she wasn’t ready to engage in conversation. I didn’t push her at all at Panera. I always let her take time to fully wake up before saying much. Sometimes she asks me not to talk during the 4-minute drive from our house to Panera. Before leaving for lunch, she is usually wide awake. That wasn’t so today. By the time we finished dessert, she was ready. As we walked out of the restaurant, she said, “You know, I love you more every day.” As I was saying the same to her, she said, “No, I really mean it.”

She still has retained a sense of humor. Yesterday at Panera, she had a problem with her iPad. The cover folds into a stand, but she can’t ever do it herself. Each day when we arrive, she fills her cup at the drink dispenser while I do it for her and open the jigsaw puzzle app. Periodically, she accidentally unfolds the cover. That is what happened yesterday. I saw her struggling with it and asked if I could help her. She said yes. Once I set it up, she said, “You can be irritating at times, but I really need you.”

This morning when I wondered if her slowness might relate to the kind of confusion that led to her anxiety attack the other night, I decided we needed something to give her a boost in the afternoon. I got online and bought tickets to see Won’t You Be My Neighbor? a second time. She is resting now, but I will get her up in another thirty minutes to leave for the movie. When the movie is over, it will be time for dinner. I would be very surprised if we didn’t end the day on a high note.

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Changes in Conversation

I’ve heard other caregivers express sorrow over the changes in everyday conversation with their spouses. I’ve had the same experience with Kate. During the first two years after her diagnosis, our conversation was pretty much the same as it had always been. Gradually, we talked less and less. I think two things accounted for the change. First, I’ve always been a bigger talker than Kate. My parents were incessant talkers. I think my brother and I were heavily influenced by them. Kate has always been able to handle everyday social situations with ease, but she doesn’t have the same drive to talk that my brother and I have. When Alzheimer’s entered her life, she became quieter. We would go long stretches with silence, something that is a bit of a problem for me. I also found that when I would tell her something I was excited about, she didn’t respond in the way she would have previously. Our conversations became one-sided. Even talkers need a little encouragement to keep talking. She just didn’t provide it.

The second thing that accounts for this change is that a lot of conversation relies on memory. In almost any conversation, we refer to things that happened or that we talked about previously. As Kate’s memory declined, she lost the information she needed to carry on a conversation. Each time I would start a conversation, she would be puzzled because she couldn’t remember what I was referring to.

As a result, we talked very little. I felt especially uneasy when we were in restaurants. She wasn’t bothered at all. She could go through a whole meal without saying anything. Frequently, she would close her eyes as though she was going to sleep. Sometimes I wondered if people thought we were having some kind of marital problem. Over time, I learned to accept this, but I still missed our conversations.

Looking back, I believe I was slower to live in her world than I should have been. When she talked, her conversation related to her family. She has a deep love and admiration for her mother. Her long-term memory was still pretty good. What I have only grasped more recently is that feelings last much longer than specific facts. Gradually, we have both evolved into conversations that involve our feelings about both of our families and about our lives in general. We reflect on our friends, the places we have lived, the things we have done, our travel, and other highlights of our marriage.

This change in focus has had a significant impact on our conversation. It is still quite different than before Alzheimer’s, but it is enjoyable for both of us. It depends on my initiating the conversation. I bring up as many different things about our marriage and our families as I can remember. That provides a wealth of topics. The good news is that we can keep repeating them, and they are always new to her. I try to keep the focus on our feelings for the events of our lives rather than simply the facts. The facts provide a way to bring back the feelings. I admit it doesn’t always work the way I had intended. For example, last night I brought up her visit to the Jeu de Paume in Paris with our daughter in 1973. I told her they saw somebody special. Kate’s eyes lit up. It turned out that she didn’t remember the experience itself or that it was Julie Andrews and her daughter they had seen. On the other hand, she enjoyed the story I told her. That is true for almost all of the things I bring up. It’s not a loss, however. She experiences them in the moment I tell her. It’s the way children enjoy the stories their parents tell them. This is working for both of us.

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Our Sunday

We had a nice day yesterday despite Kate’s appearing to be a bit more confused than usual. A couple of times I was concerned that it might evolve into the kind of anxiety she experienced this past Wednesday evening. Fortunately, that didn’t happen. She got up unusually early, just before 8:00. She was walking slowly down the hall from our bedroom wearing her robe as I went to check on her. I asked if she had just gotten out of the shower. She said she was just going to take one.  Then she asked, “Where should I go?” She was standing right outside the guest bathroom. I told her she could go there are to the one off our bedroom. She said, “I’d like our bathroom. Where is it?” She uses several towels, so I got a couple of extras from the guest bath and walked her to ours.

We surprised some of the regular customers at Panera. They are accustomed to our coming later. Yesterday we got there before a group from a nearby Catholic church. We had gotten there before they did. While we were there, Kate asked me to tell her where we were (both the restaurant and the city). She also asked about her father’s name as well as those of our children and grandchildren. This occurred again at lunch and at dinner. Asking these names is not unusual. It’s just that I sensed a bit of concern on her part about not remembering them. I may be overly sensitive because of her experience the other night.

What she remembers and forgets sometimes surprises me. In the car yesterday, she said, “Nineteen thirty-six” and nothing more. I guessed correctly that she wanted me to tell her the significance of that year. I said, “That was the year my parents moved to West Palm Beach.” She said, “That’s the year my parents got married.” She was absolutely right. She surprised me.

Yesterday afternoon, I asked if she would like to look at some of our old pictures. She said yes, and I picked out pictures from a trip to Spain and France that we took in 1973 when our children were 4 and 2. We were gone six weeks, and our son was still in diapers. I should add that they were cloth and Kate washed them by hand every day. When I mentioned the trip, she immediately said, “People thought we were crazy, but it was great.” That is something she has said many times when we bring up the trip. It is obviously embedded in her memory.

Then I reminded her that she and our daughter had seen Julie Andrews and her daughter at the Jeu de Paume in Paris while I was taking care of our son. She has talked about this experience many times over the years. Kate described how no one else was in the room but the two mothers with their daughters. Kate was careful not to invade their privacy but took great interest in how Andrews was explaining the art to her daughter. Kate wanted to tell Jesse that was “Mary Poppins,” but that was before she had seen the movie. Yesterday, when I re-told the story to Kate, she didn’t remember a thing about it. Three or four years ago, we had seen Andrews and her daughter at Chautauqua talking about a children’s book they had co-written. She enjoyed reliving her original experience with the two of them in Paris. Even that more recent encounter wasn’t enough to overcome the changes that Alzheimer’s brings with it. I was crushed.