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.

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.

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.

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.

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.