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.