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Creating a Caregiver’s Toolbox

Although Kate and I have experienced “ups and downs” while “Living with Alzheimer’s,” we’ve been able to live joyfully from the time of her diagnosis. There are many reasons for our success, but I believe having a large “caregiver’s toolbox” has been one of them.

We began our journey with 22 years of caregiving experience. That included all four of our parents and my dad’s significant other after my mom’s death. Three of them had dementia. We learned a lot during that time, and it made it easier for us to approach our personal experience with Alzheimer’s. That gave us the first tools for our toolbox.

My professional experience also provided relevant knowledge about caregiving. For ten years I was a social psychology professor. As I transitioned to a career in market research, I directed a master’s degree program for alcohol and drug abuse counselors. That fit well with my social psychology background and greatly expanded my knowledge acquired in academia.

Several years later, I joined the Stephen Ministry program of our church. This program links individuals who are facing personal and/or family problems with church members who serve as understanding companions who meet with them regularly until the service is no longer needed.

Despite that background, I felt the need to know far more. Each of the people for whom we had caregiving responsibilities was unique.  I wanted to know how other people dealt with their situations.

My first step was to visit the Alzheimer’s Association website where I found an abundance of information and sources of help for caregivers as well as their loved ones. I read a fair amount of posts on various message boards but found it a little depressing. It was a comfortable place for people to express their problems and seek help, but I wanted to find a source with a more positive outlook.

That led me to check books on Amazon where I found Alzheimer’s Daughter by Jean Lee. Both of her parents had been diagnosed with Alzheimer’s on the same day. She carried a very heavy load as a caregiver. It was far more challenging than any of the experiences with our parents. Although facing significant struggles, she came away with an uplifting message for others facing similar situations.

I liked that. It led me to write her a letter. I was surprised and pleased when she replied. It turned out that she did much more for me than that.

When I created this blog, I communicated with her. It was she who introduced me to AlzAuthors, a not-for-profit organization of people who write about dementia. Becoming a member expanded my knowledge about dementia and caregiving. It also provided me with a much wider range of support. Most of them were caregivers or former caregivers. Others were people who were medical professionals who studied dementia. Still others had been diagnosed with the disease. As a result, I have been asked to serve on panels of workshops on various aspects of dementia and to be interviewed on several podcasts.

It wasn’t just the authors themselves, but many of them were also active on Twitter (now X). I, too, became active. That brought me in contact with a host of other people whose experiences have influenced me.

In addition to the impact that Alzheimer’s Daughter had on me, I was highly influenced by an article I read. It dealt with the importance of a team for a caregiver. The article’s focus was on a team of medical, legal, and financial professionals. I shared the author’s view and already had those in place, but I took that one step further.

I’ve always enjoyed being around other people. I decided to consider everyone with whom I came in contact to be a member, or potential member, of my team. That began with my family and friends but expanded to social media like Facebook and Twitter and the many strangers I encountered. This didn’t require anyone to do anything special. Even people who checked and bagged my groceries became part of my team. Servers in restaurants were especially important. As I look back, having a large team of supporters has played a big role in helping me as a caregiver.

Thus, I began life as a caregiver for Kate with a toolbox of useful tools. That toolbox has expanded considerably over the years. A carpenter always encounters situations that require new tools. That is certainly true for me as a caregiver, In future posts, I’ll talk about other tools that have been especially valuable to me. Stay tuned.

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Something New, and It’s Good

For the past two and a half years, Kate and I have followed a rigid routine. The caregiver arrives at 11:00 each morning. The first item on the agenda is to get Kate dressed and out of bed. Until recently, we put her in a recliner in a sitting position where the caregiver served her lunch. She remained in the recliner until we went out for ice cream shortly after 3:30.

While I was away, Kate often felt sleepy, and the caregivers got in the habit of setting the recliner in a reclining rather than a sitting position. I began to feel that she was spending too much of her day on her back and decided to move Kate from her bed into her wheelchair instead of the recliner. Originally, I was concerned that being in the wheelchair all day might be uncomfortable for Kate, but she accepted the change without a problem.

After we changed our primary caregiver 3-4 months ago, the new person asked if she could take Kate out of the apartment. I told her that would be fine. It turned out much better than I thought. She has responded well to the additional attention she receives. I meet them for ice cream after returning from lunch. I frequently find them talking with other residents and staff in much the same way as when I am with her. Kate herself doesn’t often say very much, but she often smiles. That lets all of us know that she is happy.

This has now become a regular part of our daily routine. I’ve always felt that even the best of our caregivers don’t give her as much attention as I would like. The new routine solves that problem. It works for everyone. Kate and the caregiver like getting out of the apartment and mingling with other residents and staff. I, too, like it because it provides Kate more stimulation than when she and the caregiver are alone in our apartment. It’s a “Win-Win-Win” situation.

This is another reminder of the importance of intuitive thought or abilities. This change did not stop the progression of her Alzheimer’s. Her rational thought or ability hasn’t improved. Her memory of people, places, and things is gone. Her aphasia means that she says very few things that we can understand.

Nevertheless, all is not lost. Her intuitive thought and ability remain. As a result, we continue to enjoy life and each other. What more could I ask at Late Stage Alzheimer’s?

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My Thoughts on Giving Advice

In two recent posts, I discussed some of the many reasons that Kate and I have lived well while “Living with Alzheimer’s.” Many of them were unrelated to anything specific we have intentionally done. Some of them, however, were deliberate choices we made that turned out to be very beneficial. As a result, some people might think I would jump at the chance to give advice to others, but such is not the case. Let me explain.

Long before Kate’s diagnosis, I learned that many caregivers are annoyed by the advice they receive from friends and family. That occurs most often because the person giving the advice doesn’t fully understand the situation of the person receiving it. There’s a saying that is common among the community of dementia caregivers. “If you’ve had one experience with dementia, you’ve had one experience with dementia.” The point is that each case of dementia has its own unique characteristics; therefore, what works in one situation may not work in another.

When people give advice, they usually believe that what worked for them will work for others. They do this without fully understanding that the circumstances of the person receiving the advice may be (and often is) quite different from their own.

My earliest personal encounter with this occurred after we brought Kate’s mother into our home with 24/7 in-home care. Kate was annoyed when an acquaintance periodically encouraged her to put her mother in a skilled nursing facility. That might have been a good suggestion for some people, but not for us. For a variety of reasons, we believed that in-home care was the best option for her mother and for us. I still believe that. Since then, I’ve heard other caregivers talk about their irritation with similar unwanted advice.

As a result, I try to avoid giving advice. There is one notable exception. That is based on what I learned from Judy Cornish, author of Dementia Handbook and Dementia with Dignity. Her approach to dementia caregiving emphasizes an important distinction between rational and intuitive thought. In her view, all is not lost with dementia. Although people with dementia lose their rational thought, they retain their intuitive thought which relies on direct experience with the world via our senses.

That means that even as memory declines, people with dementia can continue to enjoy many aspects of life. For Kate and me, that has involved music, movies, theater, dining out, and social connections. With Kate at late-stage Alzheimer’s, we can’t pursue these interests in the same way that we did during earlier stages. For example, she lost the ability to use her computer which allowed her to connect with family and friends and work on photobooks of family photos. She also lost her ability to use her iPad. She had used it to work jigsaw puzzles for hours a day. We gave up travel. We gave up eating out. As I often say, our world today is much smaller than it used to be, but we can still enjoy life and each other. That’s because we continue to find activities that she can appreciate via her intuitive thought. That includes music which has been an important source of entertainment throughout our marriage.

My primary advice to others who confront the diagnosis of dementia is to accept the fact that rational thinking will become weaker and weaker and focus on what loved ones with dementia can do and appreciate. When you think about it, most of the things we enjoy, whether we have dementia or not, relate to intuitive not rational thought. We don’t derive most of our pleasure from our knowledge of things like the names of current political figures or how to multiply or divide 1,396 by 3. Most of our pleasure comes from eating our favorite foods, listening to music, watching movies or TV, time with good friends, etc. A person with dementia can enjoy all of these things even years after their diagnosis.

I’d like to emphasize one other thing that people with dementia can appreciate via their intuitive thought, and that is LOVE. Love can play a role in lifting anyone’s spirits, but it can be especially helpful with people who have dementia. Their loss of rational thought can easily lead to a lower sense of self-worth. People respond differently to them because they are often unsure of what to do or say. The result is that people with dementia are often ignored, and their sense of self-worth is weakened.

For that reason, I believe caregivers should do everything they can to make sure their loved ones know that they are loved – that they matter. This is easier said than done. Caregivers often find themselves so occupied by routine responsibilities of caregiving (that their own rational thought tells them are important) that they overlook the most important thing they can do – making loved ones feel they are loved.

One reason I feel comfortable giving this advice is that it does not require that other caregivers do the same things that Kate and I have done. When we decided to enjoy life and each other for as long as we were able, we looked to things that had always given us pleasure – music, movies, theater, eating out, travel, and time with friends and family. We were lucky that both of us enjoyed all of these things. That doesn’t happen with every couple, but I do hope that other couples and families might be able to find their own ways to enjoy life and each other. It is certainly worth trying.

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Reflections on Living with Alzheimer’s: Part 2

In my previous post, I talked about our pre-diagnosis experiences and my belief that they have helped us deal with our post-diagnosis experiences with Alzheimer’s. Many other things we have done since the diagnosis have also been valuable.

One is the way we responded at the beginning and continued throughout our journey. We both accepted the diagnosis. We were helpless to change that. Instead, we directed our attention to “What next?” Planning was a critical first step. We talked a lot during the first few weeks. We didn’t arrive at a detailed plan, but we set a goal that has guided us from the beginning to the present time: to enjoy life and each other as long as we were able. We began binging on the activities we had most enjoyed throughout our courtship and marriage.

That included going to more movies and theatrical productions. We took advantage of our local theaters as well as those in three other cities that were within a 2-hour drive from our home. We attended many musical events locally and out of town. We also traveled domestically and internationally.

We made a change in our dining habits. At first, I tried my hand at fixing simple meals and bringing in meals from some of our favorite restaurants. I quickly discovered that I didn’t like fixing meals or cleaning up afterward, so we started eating out for lunch and dinner. That continued until the beginning of the pandemic in March 2020.  We had eaten out more than 6000 times since her diagnosis. In addition to eating out for our daily meals, we went to a local Panera Bread each morning where Kate got a muffin. After lunch, we went home for a break where she rested. Later in the afternoon, we went to the café at Barnes & Noble where we spent an hour or so before going to dinner.

We did all this for convenience and pleasure, but the most important benefit was totally unanticipated. We were never socially isolated. We often ran into friends and acquaintances. We also became better acquainted with the servers and managers of the various establishments as well as other regular customers. Doing all of these things meant we led very active lives. We were living well, and we were achieving our goal of enjoying life and each other.

It wasn’t until 2018 (7 years after Kate’s diagnosis) that I understood why we had gotten along so well. That’s when I read Dementia Handbook by Judy Cornish. She introduced me to the significance of rational and intuitive thought and its relevance for people living with dementia.

Rational thought deals with the kinds of things we learn from our parents, teachers, and many others we encounter. These include the rules of behavior as well as factual knowledge like language, history, math, spelling, names of people, places, things, etc. Intuitive thought involves experiential learning that occurs directly through our senses – touch, taste, smell, sight, and hearing. We put so much emphasis on rational thought that it’s easy to overlook the significance of what we learn experientially. That is probably why so many people believe that all is lost with dementia. That’s a big mistake. As Cornish points out, intuitive thought provides us the ability to enjoy the world around us like music, art, and the company of other people.

When I learned this, I immediately recognized that Kate and I had done just what Cornish suggests. When we focused our attention on enjoying life that led us directly to the things that Kate could appreciate even as her rational thought declined. Music, theater, dining out, travel, as well as time with family and friends were all things she could enjoy.

That is not to say that we could continue all of these things while “Living with Alzheimer’s.” For example, she reached the point at which she could not follow the plot of movies. Interestingly, the last two movies that she really enjoyed were Won’t You Be My Neighbor which was about Mr. Rogers,and RBG, a documentary about Ruth Bader Ginsburg. Both films were filled with humor and touching emotional moments that she could appreciate.

All of these things have enabled us to live joyfully with Alzheimer’s. Best of all, we continue to do so at this late stage of the disease. I firmly believe the improvement Kate has experienced over the past year relates to the attention she receives from the residents and staff of our retirement community. Of course, our primary caregiver and I make sure she gets the same attention at home. This attention is something else that she can enjoy via her intuitive thought/ability.

You might ask, “How long will this last?” I ask myself the same question. The answer is I have no idea. One thing I do know. We will continue to enjoy life and each other as long as we are able.

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More Happy Moments


Two months ago this week, I reported on the progress Kate has made over the past few months. I noted the improvement was not with her Alzheimer’s, but she has more cheerful moments and is talking more than she has since her stroke six months ago. Much of what she says is not intelligible; however, she responds in a way that conveys she knows what we say or ask. Overall, she seems to be more at ease.

Despite my encouraging report, I was guarded about the future. Would this continue? If not, how long would it last? I still don’t have answers to these questions, but she has continued to amaze the caregivers and me as well as the residents and staff we see on a daily basis.

Last week, her caregiver and I were stunned by a conversation she had with Alicia, a member of the food staff. She’s a young woman who took an interest in Kate more than six months ago. She is a person of great warmth who leans over and speaks to Kate in a gentle voice. Kate responded well to her in their first contacts together.

A week ago Saturday afternoon while we were having our ice cream, she stopped to say hello on her way to the dining room. Until then, Kate had been rather quiet. She wasn’t unhappy but not cheerful and not ready for conversation. When Alicia put her hand on Kate’s shoulder and spoke to her, Kate smiled and responded audibly. It was striking how quickly her mood changed. For the next 5-10 minutes they engaged in a conversation in which Kate was almost an equal partner.

Since she had to report to the dining room for the evening shift, Alicia couldn’t stay long. As it turned out, she was our server that evening. That provided additional opportunities for them to talk. I took several short videos of their conversation. Kate and I frequently have conversations like that. Sometimes our children have the same experience. A few weeks ago when my brother and his family paid us a visit, Kate responded similarly to my brother’s wife. There are also periodic occasions when she makes a brief response to a staff member or resident; however, this was the first time I had seen Kate engage in a conversation with someone outside our family. She was perfectly at ease.

It was only three or four years ago that I learned about the distinction between rational and intuitive thought/abilities and their significance with respect to dementia. My thanks to Judy Cornish (The Dementia Handbook and Dementia with Dignity) for introducing me to this distinction. The experience with Kate and Alicia was a dramatic example of how well Kate’s intuitive ability works even though her rational abilities are virtually gone.

It also reinforces my belief that the improvement she has experienced in recent months relates to her intuitive abilities. Kate may not know what day or year it is, people’s names, or where she is, but her ability to sense the world around her enables her to experience pleasure.

Our daily routine has opened the door to other people who relate to her as a person, not a person with dementia. She has the same experience at home with the caregiver and me. Together, these things must be making a difference how she feels and responds, but how long will it last? I don’t know. Stay tuned. I’ll let you know. In the meantime, I’ll continue to take pleasure in each moment we have together.

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Selfcare (With a Lot of Help From Others)

Despite the challenges and low moments while “Living with Alzheimer’s,” I’m upbeat most of the time. That is only because I have lots of help. Most of that involves my contact with other people. I have remained as socially active as I could since Kate’s diagnosis eleven and a half years ago. Since our move to a retirement community a little over a year ago that has increased. The activities of the past ten days are a good example.

I’ve always been a creature of habit and have a routine for each day of the week. Most of those involve engagement with other people. That begins on Monday with my weekly Rotary lunch. I’ve been a member since 1983, and it’s good to connect with people I have known for quite a few years. I also eat out (outside the grounds of our retirement community) for lunch on three other days of the week. Every Tuesday and Sunday, I eat lunch at two different restaurants at which Kate and I ate regularly for eight or nine years before the pandemic in March 2020. Since she has been unable to get out, I go alone; however, I know the managers and staff, and I am usually served by the person who has served us/me for years. Since our move, I have found a new spot for my Saturday lunch. As a regular, I’ve gotten acquainted with the owner, my server, and a few others who work in the kitchen.

The other three days of the week I have lunch in the café downstairs in our building. It’s a very friendly community. We’ve lived here just over a year, and I’ve eaten alone fewer than five times. On the way in, I usually see someone who is already seated and join them for lunch. If I start out alone, someone joins me.

Some days I find myself in more conversation than expected. One of those occurred last Thursday. In advance, I had invited a couple to join me. We were seated only a few minutes when someone else asked to join us. When we finished, I went down to the main dining room to return a cloth napkin that Kate had brought back to the apartment the night before. As I entered, I saw another couple who had just been seated for their lunch. They asked me to join them. When I told them I had just eaten, they said, “Why don’t you have a cup of coffee with us?” I accepted their invitation. We spent the next hour in conversation.

Every afternoon at 3:30, the caregiver and I take Kate to another café on the grounds for ice cream. The seating is beside the main hallway that links all the buildings, eating venues, meeting rooms, a gift shop, and a hair salon. We spend an hour there and have conversations with residents and staff as they go from one place to another. I think this is good for Kate and know it’s good for me.

At 4:30, we go directly from having ice cream to dinner. That’s yet another time for social contact. That begins with the staff since there aren’t that many other residents who eat as early as we do. Everyone on the staff knows all of the residents. They treat us very well. During any given meal, we may have as many as 5-10 different staff drop by our table to say hello and often chat for a few minutes. As other residents arrive, some of them stop by our table. As we leave, we stop at several tables to do the same for others who arrived after we did.

That’s the daily routine, but there are also many other impromptu encounters. This past Sunday, the server had just brought my coffee when a couple I know was seated at a nearby table. They asked me to join them as they have done on a couple of other occasions. It had been a while since I had seen them, so I accepted. All three of us are big talkers, and we spent the next hour and a half talking and eating.

There are always other unanticipated events that keep me going. Two of those occurred during the past two weeks. One of those involved a new caregiver. She replaced one who was quite good with the basic CNA (Certified Nurse Assistant) skills but not so good with “Tender Loving Care.” Our new caregiver is adequate with the basic skills and very good with TLC. The second day she was with us I walked into the living room where Kate was looking at the caregiver and smiling. They were holding hands. That never happened with the previous caregiver. I was elated.

As you would expect, how Kate is feeling has the greatest impact on how I feel. Her Alzheimer’s, Covid, and stroke have left her less upbeat than she was before. She rarely says a word until mid-afternoon; however, some days she is more cheerful than others. She’s had a number of days like that during the past two weeks.

I shouldn’t close without mentioning the support I get from those who read this blog as well as my followers on Twitter. You have often given me words of encouragement at moments when I needed them most.

It is true that I am not as active in the local community as I used to be, and I don’t participate in many of the events on the grounds of our retirement community. Nevertheless, the things I outlined above boost my spirits considerably. I’m living well and grateful for that. I know of many caregivers who are not so fortunate.

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A Great Day for the Caregiver

Last week, I spoke to a group at our church about living with Alzheimer’s. During the Q&A, someone mentioned the stress experienced by caregivers and asked how I was dealing with that. As I said to him, “That’s a good question and one that I’ve tried to address since Kate’s diagnosis.” My thoughts about care for the caregiver is rooted in watching my father as he cared for my mother who had dementia. Except for the things I did to support him, the only help he sought out was a daycare center for my mother 4 hours every Wednesday so that he could go to Kiwanis and the grocery store. He was always in good spirits, but the stress took its toll on him. I vowed not to let that happen to me. I can’t say that I have found a way to eliminate stress, but I have been able to minimize it.

Since our move in April, life has become much easier for me. Supervising only three caregivers is much better than the 6-9 we had before the move. That has meant more routine in our lives. As expected, the convenience of meals on the premises has been a major benefit. Little things like being able to stroll down the hallway to a café where Kate can get an ice cream or a milk shake adds pleasant moments of relaxation. On top of that, I am enjoying the social interaction with other residents and staff that occurs throughout the day.

I also get away from the grounds several times a week. I attend Rotary every Monday and have lunch at two of my favorite restaurants on Wednesday and Sunday. Of course, there are also trips to the grocery store and pharmacy.

This past Wednesday was an especially nice day. I had lunch at Carla’s where I had an arugula and goat cheese salad with cherry tomatoes and pecans accompanied by a side of smoked brisket (the best I have had outside of Texas). The meals in our retirement community are quite good, but they don’t compare to the ones I get at Carla’s or Andriana’s.

Apart from the meal, I had conversations with two of the staff I have known for quite a while. One is a server who is moving to Nashville. Her boyfriend just graduated and is moving there to look for a job. She is going with him to further her education to become a physical therapist. She was excited about the move, and I was excited for her. It reminded me of the early days of our own marriage.

The conversation was with the shift manager. He is from Romania and has been in the US about five years. He is married to a Puerto Rican who is in the Air Force. Earlier this year, he became a US citizen, and was very excited about that. Now, he is excited by the news that his wife’s next assignment is in Naples, Italy. That will put them within an hour by plane to his family’s home. That will make it much easier and less expensive for his parents to visit him and his wife and daughter. When his wife finishes this assignment, she will have only three years until she can retire. Upon retirement, they plan to return to the US. I found both of these conversations to be uplifting and was happy for them.

Wednesday is also “Spa Day” for Kate. The caregiver bathes her, shampoos her hair, applies lotion to her body, and does her nails. When I got back to the apartment, I was pleased to see Kate with eyes closed relaxing in her recliner while the caregiver filed her nails. Until two years ago, I had been taking her to have her nails done once or twice a month. As her Alzheimer’s progressed, she became somewhat frightened, and I stopped. This particular caregiver has been doing her nails since she came to us in December or January. It does my heart good to see Kate enjoy herself so much.

To top it off, we made our trip down the hall for ice cream. I didn’t need anything more to keep my spirits up.

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With a Little Bit of Help from Our Friends

Yesterday I received a private message from one of my Twitter friends who asked how I was getting along. He is a well-recognized speaker and advocate for caregivers. His primary message is the need for caregivers to get help. His book tells about his own experience of trying to do it all and the toll it had taken on him. I replied that I am still doing well and let him know a little about my support system. His question was timely since my experiences the past two days illustrate the kind of support that keeps both Kate and me going.

The first person to express concern about Kate was our pastor who, at that time, did not know about her diagnosis. He called to ask if he could take me to lunch. That was five or six months after we received the news of her Alzheimer’s. Toward the end of our meal, he took a more serious tone as he asked me how Kate was getting along. He caught me off guard. She had resigned her volunteer position as church librarian two years before, but I didn’t think anyone had suspected a problem. After all, Kate was still getting along quite well.

We have gotten together periodically since then. On two or three occasions, I met with him briefly at church. In recent years, Kate and I have joined him for lunch. One of those was Tuesday. These lunches have always gone well. Kate has been an active participant in our conversations. This week was no exception.

That same day I received a phone call from Dorothy Hinely, a longtime friend who lived in Knoxville many years prior to moving to Virginia. (We first met her in church about forty-five years ago. Our lives have been intertwined in a variety of ways since then. Our daughters are best friends.) She was in town and wanted to arrange a time for us get together. We settled on dinner Tuesday evening. We had much to talk about, and Kate handled herself well even though she couldn’t remember our history with Dorothy.

I serve on two different United Way committees, and one of those met yesterday at noon. Ordinarily, that would work fine because I have a sitter for Kate; however, the sitter doesn’t come until 1:00. On a previous occasion, I asked a church friend to take Kate to lunch at 11:30 and take her back home for the sitter. This time I asked my colleagues at the office if they could stop by Panera and join Kate for lunch. They were happy to do so. I was eager to know how things had gone, so I dropped by the office later that afternoon. I was pleased to hear them say that Kate had gotten along well. That makes me happy. It’s something I would not have expected when she was diagnosed.

Apart from special social occasions like these, many other people have played a role in supporting us. On Tuesday, we received a beautiful hydrangea from the young woman who usually serves us at the Sunset Café where we have lunch on Thursday. It’s the kind of thing one doesn’t expect at all.

Last week I got a call from a man who was a stranger until we met him at Panera three or four years ago. Several months ago, he and his wife moved into an assisted living facility on the far side of Knoxville. He invited us to be his guests for lunch.

Last night at dinner, we saw Kate’s doctor who stopped at our table to say hello. We have seen her at this restaurant and one other several times before. On the way out, we saw a man and his son whom we have seen many times. These were brief social encounters but ones that make both of us feel good.

We also keep up with several long term friends in Nashville. There is nothing like being with close friends with whom you have shared many experiences and changes in our lives since college days and shortly thereafter.

These are just a few examples of the kind of support we get. I find that it occurs everywhere we go.  We are not socially isolated. I suspect few, if any, of the people who play a role in supporting us realize how important they have been to us. Many of them don’t even know about Kate’s Alzheimer’s, but I consider all of them to be a part of our team.

I don’t mean to deny the difficult aspects of “Living with Alzheimer’s,” but we find acts of kindness all around us. That keeps us focused on how fortunate we are. Yes, Kate and I are getting along “remarkably well.” It’s clear, however, that we are not doing this alone. We get a lot of help from our friends, acquaintances, and even strangers. I am grateful.

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Sleep and Rest

Until a year ago this past April, Kate’s sleeping pattern had been pretty steady. I’m not at all sure that she sleeps any less today than she did, but the time she gets up often varies. More than half the time I get her up between 10:30 and 11:30 depending on whether we have any special obligations. Sometimes, as she has done in the past couple of weeks, she gets up as early as 8:30 or 9:00. It is not uncommon for her to be awake when I go to wake her. She usually goes to bed between 8:30 and 9:30. I don’t think she is usually asleep until 10:00 or later. She must get about 12-13 hours sleep a night. Eighteen months when she was on Trazadone, she slept about 13-15 hours.

The major difference now is the amount of time she rests without going to sleep. Yesterday, for example, I got her up around 11:00. It took an hour and a half for her to shower and dress before leaving for lunch. We got to lunch just before 1:00 and arrived home at 2:30. I suggested that she and I look through one of her family photo albums, but she wanted to rest which is typical when we get back from lunch. She immediately went to rest on the sofa in the family room. She rested until 5:30 when I suggested we go to dinner. There was a short period, no more than 15-20 minutes, when she appeared to be asleep. Otherwise, she was just relaxing.

I am guessing that the strain of social interaction, looking through photo albums, and working on her iPad wear on her in a way that is hard for me to understand. She doesn’t usually show any special signs of fatigue until after we head home from the restaurant. During lunch, she sometimes tells me she wants to rest as soon as she gets home.

As I have mentioned before, the amount of battery life left on her iPad is a good indicator of the amount of time she uses it. Though it remains her primary self-initiated activity, she clearly doesn’t use it as much as she did. That is a result of her resting more because she hasn’t replaced the iPad with another diversion.

The most significant change brought about by her current pattern of sleep and rest is our getting out to Panera in the morning and to Barnes & Noble in the afternoon. That had played a major role in our social engagement. That makes our lunches and dinners our primary means of social contact. That continues to work well for us.

The mornings are times for me to take care of all the routine household chores and other personal obligations I have. I now wash as often as four times a week. A year ago, washing was just once a week on Saturday morning. I also find that the afternoons are pleasant times for us. When she is resting in the family room, I always take my laptop or iPad and stay in the room with her, and, of course, music is always playing. Since Kate is not asleep, we also engage in intermittent conversation. It makes for a very relaxing afternoon for both of us.

Life is different now, but we still get along “remarkably well.” I certainly expect more challenges like the ones we have faced recently, but I am also optimistic that we will handle them well and be grateful for Happy Moments past, present, and future.

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The Value of Social Connections

Maintaining social connections has been a major part of our therapy since Kate’s diagnosis. I have found it especially important in recent months as Kate has declined more significantly. Although she enjoys being with others as much I do, her pleasure is strictly in the moment. On the other hand, I enjoy the anticipation, the moment, and the memories. As a caregiver, being with other people lifts my spirits. I never heard my dad express it, but I know he must have felt the same way as he cared for my mother who had dementia.

Yesterday we drove to Asheville for what turned out to be a better than expected variety of social experiences. As I mentioned in my previous post, I thought it could be our last one and wanted to see a couple of people who had meant a lot to us on our previous visits. A few days before leaving, I learned that one of my Twitter friends and her husband were in Asheville and would be driving back home Sunday afternoon. I asked if we might meet before they left. We decided to get together at our hotel as soon as we arrived.

Our meeting went off without a hitch. I was eager to meet my friend and was eager to introduce her to Kate. This could have easily been a conversation between my friend and me, but she immediately looked straight at Kate and engaged in conversation with her. I was pleased to see that. It illustrated her sensitivity and comfort level with people with dementia. More importantly, she quickly established rapport with Kate. That set the stage for an hour-long conversation before they had to leave. As we were saying our goodbyes, my friend said something nice to Kate who was unable to respond verbally. The tears in her eyes said it all. She was touched by someone who entered her life as a stranger but left her feeling as though she were a longtime friend.

Our experience at dinner turned out to be another touching experience. We had another anniversary celebration. This time at a new restaurant but with a server who has taken care of us at three different places over the past few years. It was good to see her again. Just as I am telling you about her, she had told her associates, including the manager, about us. We met several of them and were very well-cared for. The meal itself was outstanding. At the end of the meal, we had quite a surprise. Our server said the evening was “on her.” She didn’t even accept a tip.

Experiences like these are bright spots in our lives. They sustain us through difficult times, and we have enough of them to keep us going. I feel grateful.