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.


  • 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.

An Interesting Support Group for People with Dementia

A few weeks ago, I posted a conversation that I had with Kate’s brother, Ken. In that conversation, we focused on his diagnosis of Alzheimer’s at age 70, the same age at which Kate was diagnosed. Unlike Kate, he has chosen to be more public. For example, he told his children right away. Kate has told only one person, her best friend Ellen.

Another example of being more public is that Ken joined an Early Memory Loss support group rather quickly. That was in 2014, and he is still participating. Originally, Kate didn’t want to be in a support group. A few years later, she changed her mind. I told her I would look for one. I found that there are many groups for caregivers but not for people with dementia/Alzheimer’s. I even contacted the national office of the Alzheimer’s Association. They told me they had experimented with them, but they had never had much success.

Thus, when Ken mentioned his support group, I was eager to learn more. Last week we had a conversation about it. I’d like to share it with you.

RICHARD: Ken, you have previously told me about your early memory loss support group. I’m preparing a new blog post and wanted to learn a little more about it. How did you find out about it? Did you inquire with your local Alzheimer’s Association or some other organization?

KEN: Well, it turned out to be pretty easy. We learned about it from my neurologist. He encouraged us to call them to gather information and to arrange a visit to their different programs.

RICHARD: Is this group part of a state-supported program. Do you know of similar groups in other places?

KEN: No, it is a local non-profit agency program that depends on both professionals and volunteers who are responsible for different parts of our regular agenda. I’m not aware of other groups here, but I have heard there are some in Austin as well as other major cities.

RICHARD: Tell me a little more about your group and how it works.

KEN: The program has two groups. One is for those who are in the early stages of the disease. That’s the one I’m in. The other is for those in the more advanced stages. We meet in a local church every Friday from 9:30 to 2:30. That may seem like a long time, but we have a regular agenda that we follow. Each part is designed to address the various needs of people with dementia.

RICHARD: Who leads the group?

KEN: We have several people who are responsible for different parts of our agenda. Some are volunteers from the community. There is a paid director who is in charge of the program and usually a social worker in charge of the individual group meetings.

RICHARD: I’m curious to learn more about what you do over five hours.

KEN: I’d be glad to fill you in on that. The first two hours we deal with current events. We have a couple of volunteers, one of whom is a radio talk show host, who come in with a collection of news articles they think would be of interest. They cover a variety of topics that have been in the news over the past couple of weeks. They are not intended to be a summary of the current news, but things of personal interest that are intended to generate discussion. They are distributed in print form to everyone in the group. We take turns reading to the rest of the group. We often have a lot of discussion as well. Of course, that varies with the topic. When we are finished with one article, we go to the next one.

I’ve especially enjoyed this part of the program. The topics are interesting and the people in the group have a variety of opinions they are glad to share.

Then we have thirty minutes of exercise. It consists of a series of chair exercises that all of us are able to do. It involves a lot of stretching and bending. It just keeps us limber.

At noon, we have a working lunch that lasts for two hours. This is more like what you might expect in a support group. The leader generally opens the meeting by asking if there is anything in particular that anyone would like to talk about. Sometimes there is. Sometimes there isn’t. In either case, the leader always has a topic for us. We talk about a lot of things that are of general interest to people with dementia.

The last hour of the day we focus on the arts, especially music and art, but we also include special topics of general interest. This portion of the program is led by someone who has skills and knowledge on a particular topic. For example, we had an interesting program by a woman who was knowledgeable about the history of butlers in England. That is something we knew little about and made for an interesting presentation.

RICHARD: I want to thank you for taking time to help me learn a little about your group. I can easily see why you have enjoyed it. I only wish there were more programs like it.

KEN: It’s been a pleasure, Richard. I’ll look forward to talking with you again.

A Timely Reminder of How Fortunate We Are

Helen Keller is reputed to have said, “I cried because I had no shoes until I met a man with no feet.” I feel that way right now. I am writing from Whole Foods where I came after meeting with someone for two hours. I had planned to go straight to the Y, but I really would not have had sufficient time before getting back home to relieve Mary. This gives me a moment to say something about my meeting.

The man with whom I met is a church acquaintance. A friend had mentioned that his daughter was having memory problems that sounded like early onset Alzheimer’s. She suggested that I connect with him. On Monday, I sent him an email telling him that I had heard we might be experiencing similar situations. I asked if he would be interested in getting together sometime. He responded shortly thereafter and arranged for today’s meeting.

I was prepared to hear a very familiar story. Instead, I learned that he and his wife have been struggling for two years to get a diagnosis for their daughter’s memory problems. They have consulted a variety of expert experts in dementia and other neurological problems without success. The initial neurological examinations and tests at a well-known out-of-state hospital found no signs of dementia. Subsequently, they have consulted with other experts who are unable to provide a clear diagnosis. In the meantime, the daughter is on disability, and the insurance will soon stop paying her because they have not been able to find a physical cause. Her policy doesn’t cover psychological problems.

While I have no clinical expertise to hazard a guess as to the source of the problem, I can say that her symptoms sound very much like the ones that Kate has had. Her memory is poor, and she is no longer able to operate her computer that was an essential part of her job.

In addition to the memory issues, she went through a difficult divorce prior to this. To further complicate the situation, she and her daughter, who is between 20 and 25, are not getting along. There are other issues as well.

After hearing him talk for just almost an hour, I didn’t want to tell him anything about Kate and me. He felt bad about talking so much, and I gave him a brief summary. I just didn’t have the heart to tell him a lot. I thought that couldn’t help him and might make him feel worse. I did come away believing once again that Kate and I are very lucky people.

Closing the Day

I just got home from a United Way dinner where they recognize the humanitarian of the year. I was there along with a number of others from the foundation because our previous board chair was this year’s selection.

At any rate when I got home at 10:00, I was surprised when I walked into the bedroom to discover that Kate was awake. When I expressed my surprise, She told me it had been hard to stay awake, that she had gotten up and walked around and also gotten a Dr. Pepper, but she stayed awake because I wanted her to. When I explored this a little, I learned that she thought I had told her to stay awake until I got home. We hadn’t even talked about it though I had joked at dinner and said, “Now don’t get into any trouble while I am gone.” I suspect this led to her incorrectly remembering what I had said and altered it to be that I told her not to go to sleep.

Now she has been wide awake. She has been a little irritated because it is my fault that she is awake. She said she was going to tell my next wife what I am like. As in most situations like this, she doesn’t sound serious. It’s her way of kidding me, but it does have a tone of seriousness as well. This is different from those times when she gets angry with me because she thinks I am rushing her to get ready to go someplace. That is definitely serious.

Jan’s Story and Our Experience

I’m reading Jan’s Story again. I am noticing more things this time. For example, Jan opened and closed the refrigerator door. She also moved items around. This is very much the way Kate is doing with rearranging other things on shelves and rearranging knickknacks in the kitchen.

This morning I opened a drawer to get a spoon for my cereal. I noticed that all of the silverware was covered over by her used paper napkins. I suspect they were napkins left over from visit to a restaurant in the past day or so. She probably didn’t know where to put them and just put them in the drawer with the silverware.

I am now in the part where the author talks about her friends because he has put her in an assisted living facility. What they can’t understand is that she still shows so much normal behavior. This is something that strikes me because most of the people who see Kate have no idea of her condition.

Jan’s Story

I am nearing the end of Jan’s Story, by Barry Petersen. It is an account of their lives during the time of Jan’s Alzheimer’s. As I may have said before, the title is not the most accurate. It really should be Barry’s Story or Our Story. This is my second time through the book. This time I have connected with it a little more. That relates to the progression of Kate’s disease. I can easily relate to many of the details (symptoms) that he describes. Of course, each person’s journey is different; so not everything is identical. Still, I found it comforting to listen to. I think this is especially so because I have told no one other than our pastor, about Kate’s diagnosis. I continue to believe that even the number of people who suspect couldn’t be more than a handful. I recognize, of course, that those who suspect have told others. No one, but our pastor, has given me even a hint of sensing something is wrong. I take that back. Our associate pastor said something that made me think she knows.

One of the things that struck a common core was the dysfunctionality of Jan’s behavior. That was the earliest sign that I had that something was wrong with Kate. I recall that she had her own suspicions very early, before I suspected. Barry talks about learning to bite his tongue when he saw her doing silly things. I am trying to do the same. This book has given me a additional motivation to do better. I have noticed recently how much Kate is bothered by my looking over her shoulder and telling her what to do or that she has done something wrong. This is hard. Intellectually, I already know this is something that she cannot control. That means there is no good to come out of correcting her.

Some things are a particular problem because of my own personality. For example, she is not good about rinsing dirty dishes. Yesterday, she left a used container of yogurt on the counter. When I came in from Dad’s yesterday, I saw it and that it was covered with gnats. I rinsed it and put it in the recycling. I didn’t say anything to her because this is something she won’t be able to change. This means I have to check behind her a good bit. That’s easy for things like the yogurt container because it was in plain sight. The problem comes when she might put something in a place I might not see it.

Interestingly, I don’t see any signs that she tries to hide her deterioration. For example, yesterday after we returned from Gordon Seacrest’s burial, she came to me with her earrings in hand. She said, “Look what I did.” She had worn an unmatched pair of earrings. I just gave her a hug and said that no one would have noticed. Later yesterday as we were walking up to the Seacrest’s house for dinner, she noticed stains on her pants. I am noticing many more examples of her not being as concerned about her appearance as she used to be. She goes out in things that have a few spots. This means I need to pay more attention before we leave so that she is able to change.

Petersen’s book utilizes Alzheimer’s 7 Steps as a marker for some of the chapters as he details where Jan is at any given time. That made me go to the Alzheimer’s Association website last night and take a look at the steps. Based on the descriptions, I would say Kate is somewhere in Steps 3 or 4. These things are not precise, and I am not concerned that they be so. We still have a long way to go.