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A Very Special Father’s Day

I would never have guessed that right after my previous post about “Very Happy Special Moments I would be treated to the best Father’s Day present I could want. Kate had a truly fantastic day. It began before 8:00 in the morning and continued until she dosed off to sleep around 8:30 last night.

She was not only cheerful but very talkative. As I often do at times like this, I got in bed with her, and we talked almost constantly over a period of three hours. Of course, her aphasia prevented my understanding what she was saying, but I played the role of facilitator saying things like “Really?” “That’s interesting.” “Tell me more about that.” “I love talking with you.”

Her only downtime was while I was at lunch. The caregiver didn’t give her the same attention, and she was quiet when I arrived. The good news is that she recovered when I knelt down beside her recliner and told her how happy I was to see her.

I should add that she was not agitated. She was simply talkative, and I enjoyed every minute with her. It had been a day filled with Happy Moments. A Father’s Day to remember.

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Very Special Happy Moments

I know it can’t last forever. That’s why I continue to celebrate Happy Moments with Kate. For months, these have occurred at least sometime during every day. Some are more special than others. One of those occurred yesterday when I returned home after lunch.

I can’t predict her behavior, but for quite a while, she has greeted me with a smile at least half of the time. She is always in her recliner with her back to the door. As I open it I say, “Hello, I’m home.” Then I say, “I’m looking for Kate. Where is she?” I approach her recliner, and say, “There she is.” I kneel beside the recliner and tell her how happy I am to see her. If she is smiling, I tell her how much I like her smile and that it makes me happy.

Yesterday, she smiled and laughed just like a child might do when a parent returns. I also responded enthusiastically, and we enjoyed a few moments before I suggested we find some music that we could sing together. I turned on a “Sing Along with Seniors” YouTube video.

For the next 20-30 minutes, we sang old songs like “I’ve Been Working on the Railroad”, “Oh, Susanna”, and “She’ll be Comin’ Round the Mountain”. She was fully engaged, smiling, and mouthing the words. She was doing so well that I suggested to her caregiver that we go for ice cream earlier than usual. That turned out to be a good idea. She continued her cheerful mood, smiling and responding audibly to several people who spoke to her.

Moments like these make my day, and I am grateful to have so many of them. Occasionally, I’m asked what keeps me going. There are many things, but none of them compares to the Happy Moments we share at this stage of her Alzheimer’s. It will be a sad day when they are gone.

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Our Anniversary Celebration

One of the things I’ve learned about “Living with Alzheimer’s” is that people’s experiences can be quite different; however, there is at least one thing that all or most dementia caregivers experience: unpredictability. One minute Kate is smiling cheerfully. The next she is withdrawn.

Because of that, I am never sure how she will react to a situation in which I would love for her to smile or just hear her say a word or two. With that in mind, I prepared something special for our 60th anniversary last week. I decided to take her out to dinner at one of our favorite restaurants, Casa Bella. We hadn’t been there since November 2020. In fact, we hadn’t been out anywhere in more than two and a half years. Kate was beginning to lose her mobility before that, and she was in bed for so long with Covid that she completely lost it. Since then we have only been able to move her with a lift to get her in and out of her bed and into her wheelchair. Thus, going out to eat requires a vehicle that is wheelchair accessible.

Getting transportation was easy. I simply called the agency that provides in-home care for our retirement community, but I had other concerns as well. I didn’t want to put her in a crowded restaurant, so I made reservations for Tuesday night after Memorial Day when I thought it was less likely to be busy than later in the week. I called the owner of the restaurant and made reservations for 5:00 pm. That’s when they open for dinner. At the same time, I arranged a table in the room where we had often eaten in the past. I also asked our caregiver to stay an hour or two later than usual.

The only remaining concern I had was Kate’s mood. I wanted the experience to be as joyful as it had been on our previous visits there, but I knew there was no way to predict how she would feel or react. Nor was there any way I could ensure that she was in a cheerful mood. As it turned out, everything worked out beautifully.

The day began on a positive note. Kate slept late that morning. She was still asleep when the caregiver arrived at 11:00. I was happy about that because she is sometimes worn out later in the day after waking early.

When I arrived home from lunch, she was resting in her recliner as usual. She smiled when I approached her. I spoke to her for a few minutes letting her know how happy I was to see her. I turned on some “Sing-Along-for-Seniors” music on YouTube. She responded well to that. I sang, but she didn’t. Nonetheless, her smiles and facial expressions showed that she was enjoying herself.

We also had a good experience when we went out for ice cream. She smiled much of that time and responded a little to those who spoke to her – at least more than she usually does. Then we came back to the apartment where we met the driver who would take us to dinner.

We arrived as they opened right at 5:00 pm. The owners were not there, but they had prepared the staff for our arrival. They greeted us warmly and got us settled at our table. Kate and I as well as our caregiver (who had never been there before) enjoyed every minute.

Not long after we were seated, the owner arrived and came directly to our table. We had a nice visit with her. Although I can’t remember what she said, I was pleased that Kate responded audibly to something she said. A little later, her husband also dropped by to say hello. We had a good dinner, but the real enjoyment was being back in a place where we had eaten many meals over a period of fifty years. The bonus was that Kate enjoyed herself the entire time. That made for a very special sixtieth anniversary. I could not have predicted that the day would go so well. I’m already thinking about the possibility of doing this again.

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A Very Special Day

Kate continues to have many “Happy Moments.” There is a general pattern to her days. She usually sleeps a good bit until 11:00 when the caregiver arrives. For the past six months or so, however, she has been waking up early (before 8:00 or 9:00). She doesn’t often remain awake. She doses off and on and rarely speaks before the afternoon.

Her best part of the day comes after 2:00. Sometimes it doesn’t start until we have ice cream at 3:30 or during dinner. Our evenings after the caregiver leaves are usually good “together times” for us although she is sometimes tired and goes to sleep early.

The one thing I can count on is that she never seems to have what I would call a bad day. She does, however, have days when she doesn’t display much cheerfulness. They are usually days when she is tired, and they typically come after a day when she has been awake a lot and very cheerful. Friday was one of her cheerful days. It started in the morning and continued most of the day and evening before going to sleep.

She was awake around 8:45 that day and was more alert than usual. She greeted me with a big smile and responded audibly to me. A few of her words were understandable. When moments like these occur, I usually drop whatever I am doing and get in bed beside her, and that’s what I did this time.

The night before I had received a text from the facilitator of a support group in which I participate twice a month. He reminded me of yesterday’s meeting at 9:30. I told him I would attend via Zoom. When I saw that Kate was in such a good mood, I sent him a text indicating I wouldn’t be there.

That was a wise decision. It got the day off to a very good start. Except for a short time during which I got her meds, something to drink, and fixed some homemade applesauce for her (my morning routine for her), we just enjoyed being together. She was very talkative for the first hour. Then she began to relax. About 30-40 minutes before the caregiver arrived, she went back to sleep, but we had had a grand morning.

I went downstairs to lunch while the caregiver fed Kate. I returned for a few minutes after lunch and found that her cheerfulness had vanished. I left to have coffee with a longtime friend, a Friday ritual of mine. When I returned, she heard me when I opened the door and began to smile. I discovered that her cheerfulness had returned as well. The caregiver told me that she talked with a number of residents and staff when they went for ice cream.

She continued to be cheerful and talkative during dinner and afterward. As we were leaving the dining room, several residents talked to her, and she smiled and responded audibly as well.

After getting her to bed and the caregiver left, we enjoyed our time together until we called it a night. It had been an exceptional day. Who would have guessed we might experience this kind of day so late in her Alzheimer’s? Not I, but I am enjoying “Happy Moments” like these to the fullest.

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Care for the Caregiver

In my recent posts, I’ve mentioned a number of reasons Kate and I have been able to live well while “Living with Alzheimer’s.” One that I overlooked is how much support I have received as a caregiver. I find that people are especially sensitive to the load carried by dementia caregivers and their need for help.

Three years after Kate’s diagnosis, I acknowledged her Alzheimer’s publicly. Since then, I’ve received an abundance of support from family, friends, and strangers. Everywhere I go people ask how we are doing and listen with interest as I tell them. Sometimes, people do something special to brighten our/my day. On several occasions when Kate was able to get out, a stranger bought our lunch. One couple (who are far from strangers anymore) buys my lunch almost every time they see me. That’s about twice a month. Only recently, have they let me buy their lunch occasionally. This same couple has given us several books. One contains all of Norman Rockwell’s paintings from the Saturday Evening Post. They have also given Kate several nice pieces of jewelry that the husband had given to his wife over their 61-year marriage.

This past week I received two very special gifts from friends. Coincidentally, each was a night out at a symphony concert. The first was from someone Kate and I have known for about fifty years. Our daughters are “Best Friends Forever.” She has a grandson who plays trumpet with the University Symphony Orchestra, and she invited me to join her and her family for dinner and the Symphony’s final concert of the season last Thursday. They performed Carmina Burana which I had not seen before. I hadn’t left Kate at night for more than two years, but I arranged for a caregiver to stay with her.  It was a great night out with friends, and the performance was outstanding. It was the first time I had attended a live performance in four or five years.

The second gift was this past Saturday night. Kate and I have had season tickets for our local symphony since the mid-eighties. As her Alzheimer’s progressed, we stopped attending but started giving our seats to friends. That was about five years ago. Our neighbor in the apartment next door was aware of my love for our local symphony and that I had once served on their board. Although she has a season subscription of her own, she had offered several times to stay with Kate so that I could go. Each time I declined.

Two months before the symphony’s last concert this past weekend, she once again offered to stay with Kate. This time she was a little more assertive and asked me to pick one of the remaining concerts, and she would stay with Kate. As it turned out, I had already been thinking about attending the final concert of the year. The orchestra was performing Mahler’s Symphony No. 1. It is one of my favorite symphonies. In addition, Kate and I were sponsoring the performance. I really wanted to go, but the caregiver I would like most to have stayed with Kate works for us eight hours a day Monday through Friday. I didn’t want to ask her to pull an extra shift on the weekend. It can be difficult to find help these days, so I was in a quandary about what to do. Our neighbor’s offer was timely, and I accepted it quickly. I’m so glad I did.  It was a wonderful night out. The concert was great, and I got to see quite a few people I hadn’t seen in years.

These two nights out were very special, and I am grateful for the kindness of friends like these and so many others that have helped us live well while “Living with Alzheimer’s.”

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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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Reflections on Living with Alzheimer’s: Part 1

Since Kate’s diagnosis twelve years ago, I’ve connected personally with a number of other couples who are traveling this same road. I’ve also become acquainted with the experiences of 25-30 other caregivers who tell their stories in books, blogs, and podcasts as well as many others via Twitter and Facebook. It seems clear to me that Kate and I have had an easier time than most people – at least the ones with whom I am familiar. We have been very fortunate. But why?

There are many reasons. Most importantly, Kate has been easy to care for. She has never experienced the kind of problems that often accompany the disease. She accepted her diagnosis gracefully and hasn’t experienced any anger and aggressiveness that sometimes occurs with dementia. As her Alzheimer’s progressed and I had to assume a larger role in her life, she accepted that as well as she accepted the diagnosis. In late-stage Alzheimer’s she requires total care, but she has adapted well.

Kate’s only signs of anger or aggressiveness occurred after her 8-day stay in the hospital with Covid in November 2020. She was traumatized by the experience and somewhat belligerent when we changed and dressed her. That dissipated over a period of several weeks. Even now she doesn’t like it when we have to turn her in bed and audibly expresses her displeasure. I understand. I wouldn’t like that myself.

There are quite a few other things that have made living with Alzheimer’s easier for us. I divide them into two general categories – Pre-Diagnosis and Post-Diagnosis. In this post, I’ll deal with our pre-diagnosis situation.

Pre-Diagnosis

  • Neither of us had any other chronic health issues that demanded our attention. That’s not true for a lot of people our age.
  • Kate’s diagnosis came at the end of our working years. She had already retired, and I was transitioning to retirement. That meant we had time to focus on living well with Alzheimer’s.
  • We both shared the same interests including music, theater, movies, eating out, and travel. They all played a significant role in our marriage prior to the diagnosis and increased significantly afterward.
  • We were not constrained by financial difficulties that would have made it difficult to support the expenses incurred along the way. Our long-term care insurance is a good example. Except for the first 90 days, it has covered every penny of her care for the past 5 ½ years. That amounted to almost $20,000 a year in the first three years. During that time, we had in-home care 4 hours a day, 3 days a week. The past two years that has totaled more than $70,000 a year. That covered 8 hours a day 7 days a week. Fortunately, our policy has no cap on the amount of money or any limit on the number of years it will continue to pay although it does have a daily cap of $330.
  • For two years I directed a master’s degree program for counselors who worked with alcohol and drug abusers. In addition, I was active for almost ten years in our church’s Stephen Ministry, a program that assists church members who face a variety of personal, family, and work-related difficulties. I believe these experiences have made me more sensitive in my role as Kate’s caregiver.
  • There is one other thing that was especially important. Prior to Kate’s diagnosis, we spent 21 consecutive years caring for all four of our parents and my dad’s significant other following my mother’s death. Three of them had dementia. Kate’s mother lived in our home for 5 ½ years with 24/7 in-home care. My dad was the only one living at the time of Kate’s diagnosis. He was in skilled nursing following a stroke.

This experience gave us a good bit of knowledge about health issues, medications, professional in-home care providers as well as long-term care facilities. We were far from knowing it all, but we began with greater familiarity with caregiving and dementia than most people facing our situation. That made a difference in how we approached “Living with Alzheimer’s.” I’ll say more about that in my next post.

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A Week of Happy Moments

It’s been more than a month since my last post. That’s because I’ve been more occupied with things than usual. The most significant was an auto accident in January that resulted in my having to buy another car. I couldn’t locate the title of the old car and needed it to transfer the title to our insurance company. As so often happens, I ran into some complications that extended the amount of time I thought would be required. On top of that, my routine responsibilities have required more of me in recent weeks, as I find myself more involved in activities within our residential community.

The additional stress this has brought has been countered by Kate’s improvement over the past year. I have come to expect and be rewarded with “Happy Moments” every day, and we have had an abundance of those during the past week.

The first came at dinner last Sunday night. She was very responsive to almost everyone who spoke to her. I was particularly pleased when she replied to another resident who speaks to her almost every day. Each time she eagerly awaits a response, but Kate rarely replies. This time she responded beautifully. Not everything Kate said was understandable, but she did respond. Before we left the dining room, Kate spoke to several other residents as well. Everyone was as surprised and delighted as I was.

We enjoyed another Happy Moment Monday night. She was in a very good mood that afternoon. It continued after her shower and as we prepared her for bed. Kate was very talkative after the caregiver left, and I got in bed beside her. It was the happiest moment of the day. We talked for almost an hour before I decided to take my shower. I felt uncomfortable about leaving while we were both having such a good time, but I did it anyway. By the time I got out of the shower, her mood had changed. She was no longer interested in conversation, but we had a wonderful time before it ended.

During the balance of the week, Kate has been quiet in the morning and early afternoon but more lively and cheerful for the remainder of the day. I’m still unable to predict her behavior from one moment to the next; however, I have come to count on Happy Moments at some point in every day. That keeps me upbeat, and I am grateful.

Addendum: March 9, 2023

The day after my previous post was another day punctuated with Happy Moments. Kate was awake early (8:15 am) and very cheerful. That is very unusual for her. She would typically awaken after 10:00 and be in a more neutral mood. I went through my usual routine in which I remind her that we met in college, fell in love, married, have two children and that we’ll have our sixtieth wedding anniversary in May. Normally, she wouldn’t react at all. Sometimes she smiles. This time she laughed.

She soon went back to sleep but was beginning to wake up at 11:00 when the caregiver arrived. She regained her cheerful mood and said a few words to the caregiver while helping Kate get dressed. At one point, she said, “I love you” to the caregiver.

She was quiet once we got her into her chair for breakfast. That lasted the entire time while I attended my weekly Rotary meeting. When I returned, she displayed little or no interest in me. That is unusual but does happen once in a while.

It wasn’t until we were having ice cream that she began to regain her cheerfulness. That increased at dinner. She smiled a lot and talked to our caregiver and to a couple of the food staff. Her best moments of the day occurred during and after her shower that evening. She was talkative and laughed about a number of things. That mood continued after the caregiver left and until she fell asleep around 8:30.

Yesterday and again this morning, she was awake early and happy. I can’t predict what the day will be like, but the experience of the past few weeks makes me optimistic that she will have another good day.

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A Perfect Day

I admit that I am a “glass-is-half-full” kind of person, and at least one other member of our family is the same way. That would be one of our grandsons who following our birthday dinner for Kate said, “That’s the best meal I’ve ever had.” He had a chicken sandwich. I can’t say that about any chicken sandwich I’ve ever eaten, but yesterday I enjoyed what I consider a perfect day.

I was the luncheon speaker at our Rotary club. My subject was what our lives are like in the last stage of Alzheimer’s. I’ve spoken to a lot of groups over the years, but I take each one seriously in my preparations. Over the past few weeks, I’ve thought about what I wanted to say and coupled that with notes as well as a final draft of my remarks. I set aside time yesterday morning to rehearse as well as relax before my presentation. I figured that wouldn’t be a problem because Kate generally sleeps until the time (or near the time) that our caregiver arrives.

Yesterday morning was different. Kate was awake before 8:00. Not only that, but she was in a cheerful mood. When that happens, I take advantage of it.  Instead of working on my presentation, I got in bed beside her and turned on some YouTube music. As I have done on a number of other occasions, I selected a variety of sing-along music for Seniors. We sang with the music until the caregiver arrived at 11:00.  We ended the morning on a high note that was far more important than any last-minute rehearsing.

As it turned out, the presentation was well-received. I didn’t include everything I intended, but my remarks came across as a very open and personal account of our lives. That is what I wanted most, and the audience response suggested that it was the right thing.

When I returned home, I wondered if Kate’s mood would have remained the same. I was pleased to discover that she had. In fact, we had an especially good time at the café where we got ice cream as well as during dinner. It continued for at least an hour after the caregiver left at 7 when Kate was tired and fell asleep.

It had been a remarkable day. We’ve had very few days that good in more than two years. For me, it was a perfect day, and I think Kate would agree.

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A Day to Remember

Twelve years ago today shortly before noon, Kate’s doctor delivered the news we had expected but did not want to hear. The results of her PET scan showed signs of plaques and tangles associated with Alzheimer’s. Our lives have never been the same.

We went to lunch right after leaving the doctor’s office. We talked about the results and the implications as well as we could understand them. We decided to make the most of whatever lay ahead, but we never knew that we would be able to live so joyfully. That was true from the beginning and remains so to this day.

Looking back, I see that we lived in a big world filled with activity and social engagement. Our world today is much smaller. The highlights of every day are our afternoon trip downstairs for ice cream and our dinner in the dining room of our retirement community. You might think that is sad, but we have found that both activities involve a good bit of social connection with residents and staff that is invaluable to us. Our move to a life plan community came at the right time. We may engage in fewer activities now than in the past, but the support we receive is powerful enough to keep us happy.

So, I am grateful on this day. I’m grateful that she is still with me, and I mean that in several ways. First, she is still alive which beats the average life expectancy from diagnosis. In addition, she still lives with me, sleeping right beside me. Finally, although I don’t think she ever remembers that I am her husband and rarely remembers my name, our relationship remains strong. That means the world to me.