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Caregiving, Stress, and How I Deal With It (Part 1)

Since Kate’s diagnosis, I have read a lot of things written about caregiver stress. Some of this has come from books written by caregivers. Some comes from a variety of online support groups and blogs as well as reports in the media. It is clear to me that the message is out. I can tell that by how often friends ask me how I am managing.

It is clear that caregiving can take its toll. My father cared for my mother who had an undiagnosed form of dementia. He cared for her without any help except on Wednesday mornings when he went to Kiwanis and then ran a few errands. He left her at a senior daycare center during that 4-hour period. I don’t recall his complaining or saying anything about the stress he was under. I was quite aware, however, that it had an impact on him. During the last year or two of her life, he wasn’t as upbeat as he usually was. After she died, he bounced back. It was then I realized the stress he had been under.

Beyond that, Kate and I were involved with care for all four of our parents over a period of 23 consecutive years. Kate’s mother lived with us the last 5 years and 3 months of her life. During that time, she had round-the-clock care by a team of 6-7 paid caregivers. Kate was diagnosed 2 years before my dad died. That means I have been involved directly or indirectly with caregiving for 28 consecutive years.

Until Kate was diagnosed, I didn’t put much thought into ways that I might minimize stress. My initial focus was a joint one. We wanted to take advantage of our time together. That meant we had to make every moment count. I am satisfied that we have done that and continue to do so although life is different now.

As Kate’s condition progressed, I began to think more about stress. I can’t remember the earliest time that I consciously took it seriously, but very early on I began to initiate several changes in my own life to prevent or minimize stress.

The first thing I did was to increase my exercise time. For over twenty years, I had been a regular at the Y although my professional travel meant that I wasn’t as frequent there as I wanted to be. As I was nearing retirement, I travelled less. That enabled me to be at the Y three mornings a week on a more regular basis. I arrived shortly before 7:00 and got to the office at 9:00. After her diagnosis, I started walking in the neighborhood the other four mornings of the week. I developed three different routes of varying lengths. The one I considered my default was almost exactly three miles, another two miles, and the third about a mile and a half. These days I still have three routes, but each is slightly shorter than the original ones.

As I began to feel uncomfortable leaving Kate alone, I have made some changes I felt were necessary. My major motivation for bringing in a sitter was to enable me to get to the Y. When I considered the most appropriate schedule for our situation, I decided to have the sitter come in the afternoon rather than the morning. That made for a double benefit on Monday because that would allow me to attend Rotary and then go to the Y. We started that schedule in September of this past year, and it has worked well. I have found, however, that sometimes I have other things like occasional United Way meetings that are usually on a Monday. When that happens, I sacrifice my time at the Y. To make up for that, I started walking every morning and going to the Y three days a week except when other things prevent it. Of course, there are always times when the weather is bad. I don’t walk in the rain, and I don’t walk when it is below 25 degrees.

You may wonder why I leave Kate to walk but won’t leave her when I go to the Y. That relates to our long-standing morning routines. Since Kate gave up her position as a librarian/media specialist at a local high school in 1990, I have almost always been gone when she gets up. She is very accustomed to being alone in the morning. She also gets going very slowly. That means she is not going anywhere soon after she wakes up. I only recall one or two times that she was up before I returned from my walk. I am gone anywhere between 30 and 48 minutes.  I do recognize leaving her is taking a calculated risk, but it is one with which I am still comfortable. I don’t know how long this will last. I’ll be ready to make a change when it looks like that would be best.

There are several other ways I tried to keep from being overcome by stress. I’ll address those in subsequent posts.

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What a Nice Day

At the end of my previous post I said that I thought it would be another good day. Of course, I didn’t really know, but all the indications were good. I am glad to report that everything went well. We left Panera for lunch about 11:30, and then returned home for about 45 minutes.

I had scheduled a rare staff meeting at my office at 1:30. Since our sitter is in New York today, I invited Kate along and told her she could work on her iPad in my office during our meeting. Our current staff consists of three people who have been with me over thirty years, and it’s been a good while since Kate had seen them. I was surprised that she didn’t ask me to help her remember their names during our drive to the office. Perhaps she hadn’t remembered where we were going, just that we were going out. I believe that is true most of the time we go places.

When we got there, we must have had 20-30 minutes of social time. After all, I only see them briefly when I stop by on my way to Rotary each week. I was glad to see that Kate very quickly got into a conversation with two of them while I was chatting with another. In a few minutes, we were all in a general conversation and enjoying ourselves. I saw Kate participate comfortably in a way that I don’t often see. I would say she was handling the situation remarkably well. Once again, I thought how fortunate it is that she has retained this gift of sociability even when her memory is gone.

The surprise came when I decided to start the meeting. I told Kate that she was welcome to join us but that she could also go to my office and work on her iPad. She decided to stay. She even spoke a little, especially at the end when she was very complimentary about these three who have been with me for so long. It pleased me no end.

When the meeting was over and we started down the stairs, she said, “Where am I?” At first, I said, “Knoxville.” She said, “No, I know that.” Then I explained that we were at my office. How interesting that she could talk so comfortably with the staff and praise them for their ability to run the show and then immediately wonder where she was. This is just one more mystery. One thing was clear to me. She had enjoyed herself and handled herself beautifully. I left feeling really good.

From the office, we went directly to Barnes & Noble where we stayed two and a half hours before going to dinner. It was unusual, but today we didn’t see a single person we know. Kate didn’t take a break during the entire time we were there. She might have stayed longer if I hadn’t said it was time for dinner.
We had a good dinner and have spent a quiet evening together. She is now in bed, and I will join her in a few minutes. It’s been another good day.

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Our Morning Routine

It’s 10:40, and, naturally, we are at Panera. I am a creature of habit. That is no surprise to anyone who knows me well. That personal quirk coupled with Kate’s Alzheimer’s has made for an interesting few years. The good news for both of us is that I am also flexible when I have to be, and I have had to be. In fact, I look at much of the adapting that we have done in a humorous way. As someone with a few compulsive tendencies married to someone who is pretty much a polar opposite, I would say we have made it work quite well for what will be 55 years at the end of May. I consider that an excellent training as Kate’s caregiver.

After a period during which she has slept later than usual, she seems to be working back to what I hope is a normal pattern. She has been getting up around 9:00 and is ready for Panera around 10:00 or shortly thereafter. That gives me three and a half or four hours to get up, eat breakfast, take a walk, check email, take care of any household responsibilities, check Twitter, and work on this blog.

Kate used to get up earlier, go to the kitchen for juice and yogurt, and return to bed. For some reason, she gave that up recently. Now she sleeps later. When she gets up, she takes her shower and gets dressed. This goes on while I am in the kitchen which serves as my office. When she is ready, she walks into the kitchen. That is often when I first know that she is up. The funny thing is that when I say “she is ready,” I mean right now. The problem is that I am not. I am still dressed in my walking clothes and need to change for the day. It annoys her that I am not ready to leave that minute. There’s always a way to deal with a new issue like this. Now I periodically go back to our bedroom to check on her. At some point, I discover that she is no longer in bed. When that happens, I change clothes, get her medications and put them on the island in the kitchen with a glass of water, get her iPad and her cup along with my own cup to take with us to Panera. Then when she walks into the kitchen, all I have to do is close my computer and put it and her iPad in my computer bag. I can easily do that in less time than it takes for her to take her pills.

On those mornings when I am late in discovering that she is up, I have to rush getting dressed and gathering our things together. While I am doing that, she usually goes to the car and waits for me. Even on cold mornings, she usually forgets to wear a sweater or coat. Fortunately, she has never had to wait long. I pick up a coat for her along with the other items mentioned above, and we’re off.

She hasn’t always been in the position of waiting for me. That’s what adds a dimension of humor to the situation. Like other things, this has not been of great significance in the morning. If I apologize for keeping her waiting, she says, “You didn’t take too long.”

When we arrived at Panera this morning, I noticed a group of women were seated next to the table at which we usually sit. They come to Panera about once a week after their morning run. They are usually pretty loud. When they arrive before us, I try to find a table in a different location as I did today. I stayed near the table while Kate got a drink. I stood so that I could see her, and she would be able to see me. I knew she would not remember where I was. After getting her drink, she walked directly to our regular table. I walked over to get her. She was waiting calmly for me, and I noticed that she had taken my cup instead of hers. Her ability to distinguish things that are different has diminished as well. My cup is smaller and made of stainless steel. Her cup is a larger green plastic cup. They are just the same to her. Similarly, she often picks up my iPad thinking it is her own even though mine is a larger version with a keyboard. Naturally, I am going to be a little sensitive about this since she is usually eating a muffin. Inevitably, that means crumbs and oil on the keyboard and screen. I try not to let on that this bothers me, but sometimes I fail.

Kate always enjoys being around children. We sat by a couple with a toddler at the table beside us. She initiated a brief conversation with them just before they left. On the other side of our table sat a mother and  her two girls, one who is 4 and the other 2. Just watching children brightens Kate’s day. I think it’s going to be another good day for us.

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One Other Change That I Notice

Since my post yesterday afternoon, I remembered one other recent change in Kate’s behavior. She has become unusually sensitive to the music played in many restaurants and also sudden noises. I’m not sure if this has anything to do with her Alzheimer’s, but it is a very noticeable change from the past. This is not brand new. She began to be bothered by these things several years ago after her diagnosis. The difference now is the degree of sensitivity. It doesn’t take her long when we are in a restaurant to comment on the type of music being played. Again, it’s not just that she doesn’t like it. It’s that she seems so annoyed by it, almost like the reaction that some people have to the scraping of fingernails on a chalk board. (Is that still a problem in this age of digital technology?) Similarly, when we were at Barnes & Noble yesterday, the woman who was fixing the drinks in the café bumped a ceramic dish with something. The noise wasn’t that loud, but it was audible throughout the café. Kate responded physically and audibly. Almost all the other tables were taken. No one else seemed to notice. A little later, I bumped my stainless steel coffee cup against the table. No one else around us even responded at all. Kate certainly did. On at least one occasion recently, a young woman dropped her keys on the floor. Kate jerked and made a noise. The woman apologized. It was nothing for the rest of us, just Kate.

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A Brief Observation About Our Day

Before it ends, I want to say what a nice day we have had. Kate has been in a very good mood from the moment she got up. Except for her asking me people’s names, I could almost forget that she has Alzheimer’s. I’ll go to bed feeling good.

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Noticing Lots of Things

Since starting this journal in 2011, I have not kept a regular schedule for my entries. I write when something catches my attention. As I have looked back to the early years, I notice that I didn’t write nearly as often. I think that’s because Kate wasn’t experiencing as many changes. Our lives weren’t significantly different than they were before the diagnosis. Now there are so many things occurring that I find it impossible for me to remember them all.

That has been particularly true over the past few months. While I don’t know what life will be like in the next six to twelve months, I do have a distinct impression that Kate is going through a transition period. The most prominent sign of that is her forgetting close family and friends. It also includes a failure to recognize where she is. A year ago, she had difficulty remembering where we were when we traveled to another city like Asheville or Fort Worth. Now she doesn’t remember where she is when we are right here in Knoxville. As we drove to Chalupas for dinner last night, she asked, “Does this city have a name?” When I told her, she said, “I know that. It just slipped my mind.” Unlike the early days, she didn’t sound very frustrated that she hadn’t remembered.

As we left the restaurant, she asked, “Where are we right now.” I told her again that we were in Knoxville. Then I mentioned that we had lived here 47 years and that was much longer than we had lived any other place. She said, “What’s the name again?” Once more I told her. She repeated the name several times. About a mile down the road, she asked me to tell her again.

It’s not just people and places she is having trouble with. On the way to lunch yesterday, I commented on the seeing the first blossoms of Lady Banks roses. She said, “You’re going to have to tell me the names of all of the flowers later when I am more awake.” I felt a touch of sadness hearing her say this. She has always loved these roses and the other flowering trees and plants are be beginning to come out. What a shame to see her lose these memories.

Although I said she doesn’t seem to express a high degree of frustration when these things happen, she often says things like, “I know you get tired of my asking you.” That let’s me know that she recognizes that she keeps asking the same questions. I keep giving her the same answer, “That’s what I am here for. I want you to ask as often as you want to. Remember I am your ‘MM.’” That is the nickname she gave to me some time ago. It stands for “My Memory.”

One of the other changes that I have noticed is that she is more sentimental than she used to be. In the last few weeks, I have seen her with tears in her eyes several times. This is a rather dramatic change from the past. She has never been one to cry. Since her diagnosis, two different types of situations have brought her to tears. At first, it was the panic attacks she had when I was trying to get her to hurry to get someplace. I quickly adapted by trying to avoid any time deadlines, when possible. On several occasions, when we might have to rush to get to a concert, I would simply choose not to attend. For quite a while, I have tried not to schedule anything in the morning. Now I have become more rigid. I don’t schedule anything before noon. I even changed the office we go to for her doctor’s appointments. Now we go to one on the other side of town so that she could have afternoon appointments.

Her recent tears have occurred when thinking of good things that have touched her. One of those is music. The other is her family. As her memory of other things began to fade, she talked a lot about her family. That was particularly common when we were with friends. I think that was because her memory made it difficult to remember everyday things like events in the news or other things that were happening with our friends. That interest in family continues but with a different twist. Now she talks with me about her parents and their families as well as our own immediate family.

Yesterday afternoon I mentioned something about a cousin of hers who recently passed away. That prompted her to reflect on her mother and father and then her aunts and uncles. Her father was one of eight children, so she had plenty of aunts and uncles. Six of them lived in Fort Worth where Kate grew up. Another lived a short distance away in Dallas. Only one lived out of state. That meant she had many childhood experiences with her larger family. As she talked, she got more sentimental. She kept saying, “That’s all I’m going to say.” A second later she would continue. Mostly she said the same things again. As she did, I could see the tears welling up in her eyes.

She seems to be working hard to hold on to what remains of her memory and her ability to handle life. One example is her asking me to tell her the names of people and friends. I can also tell that in moments when she has been quiet, she has been thinking of someone’s name. For example, yesterday in the car, she said, “Ken Franklin.” That is her brother. One other time she said her mother’s name. I asked if she had been trying to think of the name. She said, “I knew the name. It just wouldn’t come to me.”

She has always been careful to make up the bed every morning. She once told me that her mother had emphasized that was something she should always do right away. Two or three years ago, she stopped. Recently, she has started again. She doesn’t do it perfectly. The important thing is that she does it. I see it as another effort to take control of some aspects of her life.

She has become so open about not remembering names that I did something I have avoided doing until today. Without her asking, I asked her if she knew what city we were in. She said very calmly without conveying any sense of being troubled, “No.” I told her once again, “We live in Knoxville.”

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The Sitter is Still Working Out.

In several posts in the past 2-3 weeks, I mentioned a concern that Kate was not as taken with having a sitter as she was during the first four months or so. Her reactions to the sitter during the past week have convinced me that something else must have been bothering her and not the sitter. During that rocky period, she didn’t express any of the same enthusiasm when the sitter arrived or respond with appreciation when she left. That seems to be over. The past few times the sitter has arrived she has treated her more like a friend.

Yesterday I was especially concerned about how she might react because she slept late. That presents a problem from me because I like to take her to get a sandwich before the sitter comes at noon, and I leave for my weekly Rotary meeting. I checked on her about 10:15. She was still in bed but was awake. I asked her if she would want to get up so that I could take her to lunch, or if she would prefer to remain in bed and let the sitter take her to lunch. She said she would rather go with me. I told her I would like that but that she would need to get up, and she did.

By the time she was ready to leave, I could see that she would never finish eating before the sitter came. I called the sitter and told her to meet us at Panera. I’ve done that on two other occasions. I feel a little uncomfortable about doing this because we are always together for lunch, and I feel like it is a little abrupt to get up and leave her with the sitter. Of course, this is my problem, not Kate’s. Yesterday, I was particularly sensitive about her response since she had expressed a preference for me to take her to lunch. I needn’t have worried. All three of us handled it very naturally. Kate didn’t seem to mind at all. I was relieved and left for Rotary. More importantly, she thanked the sitter as she left when I returned, the same as she did last week with another sitter. I think we are back to our routine. All is well.

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A Special Moment with a Dear Friend

Sometimes I wish I were a gifted writer. Now is one of those times. Bear with me as I try to explain why.

Kate and I have lots of good days, but yesterday was a day I would like to remember exactly as it happened. We got off to a good start. Kate was in a very good mood. She got up early enough that we could make our morning pilgrimage to Panera and then to lunch without having to rush. That worked out perfectly because I had arranged a trip to Nashville to see Ellen Seacrest, her closest long-term friend. She lived in Knoxville until suffering a stroke two and a half years ago. Since then she has spent time in rehab and two different assisted living facilities in Nashville. Following two seizures, she went back to assisted living but in the memory care section.

We have known Ellen and her husband, Gordon, since the early 70s when we lived in the same neighborhood in Knoxville. Our children grew up together and attended the same schools from pre-school through high school. We celebrated many special occasions with them including many New Year’s Eves. After Gordon’s death in 2013, Kate and Ellen spent much more time together. They lunched together. They shopped together. Ellen was unquestionably Kate’s closest friend. To this day, Ellen is the only person one than her brother, Ken, that Kate has told about her diagnosis.

When Ellen had a stroke in August 2015, Kate’s life changed dramatically. That left her with no close friends in Knoxville. I have not only played the role of husband but best friend as well, but it’s never really been the same. For a few months after Ellen’s stroke, we were unable to visit her but kept in touch through her daughter who lives in Nashville. As soon as she gave the word that Ellen was up for a visit, we went to see her. Since that time, I have tried to arrange a visit once a month. I wanted the two of them to maintain their relationship as well as they could.

While in Knoxville, Ellen was well-known in many circles. She is a musician who was employed by ETV as a program director and later TV producer. Her first program was a musical program for children. Many children grew up knowing her as the “Music Lady.” She was also a producer of many other ETV programs that did not involve music at all. Simultaneously, she was a very active member of her church and had directed the choir for almost 40 years before retiring a few years ago. She loved to entertain her friends, co-workers, and those she knew at church.

Try to imagine the impact of her having a stroke in Nashville and never returning home again. She was immediately removed from a host of people who could have been of great support to her during a very difficult time. The distance between Knoxville and Nashville as well as the ages of her best friends made it difficult for people to visit her. Besides us, I know of only one person and a couple who have visited her since she has been there. The visits of the others occurred only once. Ellen made a good recovery; however, her speech never returned to normal. That makes it challenging to carry on a conversation with her. That, too, may have discouraged others from seeing her.

We had the flu in late January. When we had fully recovered, I contacted Ellen’s daughter about our coming to see her. That is when we learned that Ellen had fallen breaking her hip, shoulder and elbow. Yesterday’s visit was our first in about seven weeks. She is still in rehab at a new place that is closer to her daughter who has been a devoted caregiver for her mother. She does this while holding down a challenging job with Bank of America and fulfilling her responsibilities as a single parent of two teenagers.

So we have two very close friends each of whom has experienced life-changing health issues, separated by geographical distance, and who haven’t seen each other since Ellen’s traumatic experience with her fall. Now they see each other for the first time in weeks.

I know Ellen’s daughter must have told her we were coming, but the look on her face suggested that she was floored that we had come to see her. Kate took her hand. They both had a teary moment as each expressed her pleasure in seeing the other. The sight of this reunion and what it meant to each of them caused my eyes to well up with tears as well.

About mid-way into our visit, I mentioned something about our not having attended the music club for a while. Ellen and Gordon had sponsored our membership years earlier. Then I told her about our having recently seen Tosca and La Boheme. That reminded me of Kate’s experience with music I had played for her this past week. I keep all my CDs on my phone and pulled it out of my pocket and played “Danny Boy”. That had been a special favorite of Ellen’s. When her son was about 10, he sang it at a piano recital at which he also played the piano. Once again, Kate’s eyes watered as did Ellen’s. I was teary myself. When it was over, I played “Shenandoah,” and “Swing Low Sweet Chariot.” We listened quietly as the music played. All of these are beautiful arrangements on an album by the Susquehanna Chorale. I knew they would be special for Ellen after her career in choral music. It was equally special for Kate. We will be back for other visits, but I suspect I will remember this particular for along time to come.

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Two Surprises Yesterday. One for Me, and One for Kate

Yesterday was another good one for Kate and me. She was up a little earlier than usual, and we spent almost two hours at Panera before having our customary lunch at Bluefish Grill. After lunch, I asked her if she would like to go directly home or stop by Barnes & Noble. I was pleasantly surprised when she said she wanted to go home. I say that because she hasn’t wanted to spend much time at home recently. It turned out that she was tired and wanted to rest a while.

After resting for almost two hours, she told me she was going outside to “pull leaves.” Again, I was surprised and very pleased. It has been weeks since she has worked outside. That is something that used to occupy most of her time during the day. More recently, the winter weather, our having the flu, and the fact that there are barely any remaining leaves on our shrubs has kept her inside. That hasn’t last long before she was ready to get out to Panera or Barnes & Noble. I had begun to wonder if, not when, she would pick up her yard work again. She was outside for a full hour before coming in. She was happy. As I have said before, working in the yard is her therapy.

The second surprise, this one for Kate, came next. She received a phone call from Meg Wright, a very close personal friend from Texas. She and I had exchanged emails a couple of days before to work out a good time for a call. When I mentioned to Kate that Meg was calling, she immediately recognized the name but asked, “Where do I know her from?” I told her they were old friends from Fort Worth and that she had been one of her bridesmaids in our wedding. She remembered that. I also conveyed to Meg that Kate would be weak on remembering any details of their past as she is with our children and grandchildren. I suggested that Meg might mention some of the old memories and that would help her remember.

As I expected, the phone call went very well. It wasn’t a long call, perhaps twenty minutes, but the impact was as great as if it had been an hour. By last night, I am sure she had forgotten all about the call, but it had been a moment of pleasure with a very dear friend from her past. Once again, she had had a very good day, and so had I.

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Why I Say We are Fortunate

I have frequently said that compared to many couples living with Alzheimer’s, Kate and I have been very fortunate. My Friday with Kate reminds me why I feel that way. As we left for lunch, I said something she didn’t like. She snapped back at me. Then she quickly said, “I’m sorry. I shouldn’t have said that.” While this doesn’t happen every time she is irritated with me, it does occur with some frequency. That makes it much easier for me to deal with such moments than if she never apologized or recognized what she had done.

Then at Applebee’s, she asked me to tell her my name. I said, “Why don’t you tell me my name?” Then she said, “I’m serious.” She obviously was, and I said, “Richard.” Then she said, “Creighton.” I asked what city she lived in. She hesitated a moment and said, “Fort Worth?” I reminded her we live in Knoxville and had lived here almost 47 years.

When we have these little exchanges, I interpret them as a sign of trust that she can be open with me about her failing memory. I suspect that is something that may gradually include other people. I got a hint of that when Larry was with us this week. I don’t recall exactly what she said, but it was an indication of having trouble remembering things.

After ordering, Kate asked me the server’s name as she does every time we eat there. I told her. She said, “Oh, I know that. I’ve asked you that before.” In this case, she had asked me only a few minutes earlier. Then she said, “You are so patient with me.”

She is right, but I was struck by her saying so. That shows she remembers certain kinds of things when there are so many other she can’t remember. This is a kind of memory that is much deeper than remembering my name. It’s a connection that requires a recognition of one’s personal qualities or characteristics. Like her earlier apology, it makes it easier for me to accept other things that she does.

These experiences also illustrate something about our relationship that has made life easier than it is for some other couples. We are both conflict avoiders. Like other couples, we have had conflicts. They have never led to anything but a cooling off period and a later conversation about whatever brought about the conflict. Since her diagnosis, Kate has definitely been more irritable. This has often happened when I felt the need to rush her to get ready to go out. It has also occurred when I have tried to help her when she has wanted to be more independent.

As she has become more accepting of my help, conflicts have lessened. The exceptions usually occur in the morning right after she has gotten ready for our morning visit to Panera. It takes her a while to be ready for conversation, and I am prone to rush that.

Some mornings when she meets me in the kitchen, I can tell quickly that she’s not in a good mood. My initial approach was humor. To some extent it seemed to work. She is not a natural kidder, but it prompted her to joke with me. She liked kidding me about my compulsiveness. Over time, she seemed to be more serious than before. That caused me to change my approach. I began to avoid saying anything that smacked of kidding her and to adopt a more loving response. I have found that I can re-direct her when she is not in a good mood by responding lovingly. This works. Sometimes she brushes it off, but most of the time she comes around rather quickly. We are fortunate to be able to work so well together. I hope it continues.