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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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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.

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Celebrating Kate’s Birthday

Kate’s birthday was this past Saturday, but the big celebration was the previous weekend when our two children and all five of our grandchildren were here. This was an occasion when the stars were in perfect alignment. That’s saying a lot. They were traveling from three different states.

Our daughter, her husband, and both boys arrived in three cars. Our son and his family all traveled together, but they were flying. With all the issues surrounding air travel lately, you couldn’t help wondering if they might encounter a few problems. Fortunately, they didn’t.

The visit was a good one for all of us. This was the first time since June 2020 that all of us had been together. Only our children had been to our new home. Now, our grandchildren also have a good picture of what our lives are like.

The highlight was a birthday dinner on Saturday. We were in a private dining room off the main dining room. Everyone ordered from the menu. That turned out well since all were able to find something suited to their personal tastes. One of our son’s boys said, “That’s the best meal I’ve ever had.” He had the chicken sandwich.

After ordering our meal, I invited everyone to share special memories with Kate. There were twelve of us, and everyone including our caregiver spoke. Each person had unique memories. It was a very touching time. I don’t think there was a dry eye among the group when we finished. I know that sounds sad, but it was a great moment of connection with family and our love for Kate.

After dinner, our daughter and son gave Kate a gift of cookies, each of which was topped with icing and something of special significance for her. I took a video of our son, Kevin, who sat beside Kate and explained what was on each cookie. The last one was an image of the “Clasped Hands” of Elizabeth and Robert Browning. Kate’s mother had often given copies of the original to friends who were newlyweds. We have one on a table in our living room.

I can’t predict how Kate will respond to situations like this, but all of us were amazed that she rose to the occasion. She listened attentively and responded appropriately to everything Kevin said. When he was almost finished, she even said, “Thank you.” Then after Kevin said, “We love you, Mom,” she smiled and said, “I like you.” Fortunately, I took a video that captured that moment.

I am happy to say that she has continued to display similar moments. They don’t occur every day nor do they last all day. I treasure them and feel grateful.