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Our Relationship at Stage 7 Alzheimer’s

From time to time, people have asked if Kate still knows me. That’s a good question for which there isn’t a simple answer. It depends on what one means by “knowing.” My answer is “Yes, she does,” but I don’t believe she always remembers my name or that I am her husband. I know that one night last week, she looked at the caregiver and said, “Where is Richard?” She often recognizes me as someone familiar and someone she likes.” Every day she shows signs that this is so.

On the other hand, there are frequent times when it appears that she doesn’t recognize me at all and doesn’t have any special feelings for me. That is most common in the morning and began more than five or six years ago. Some mornings, she seems to recognize me immediately and gives me a big smile. That happened yesterday morning. She was very happy to see me. She frequently responds the same way when I return home from lunch.

She is most likely to “know” me in the evening after the caregiver leaves. In those moments she connects with me in a way that suggests a closer relationship than she has with other people. I suspect some of that is brought on by what I say to her. I always recount memories from past events in our relationship. She responds with loving smiles that tell me that those memories and I am special to her.

Most evenings, she is not talkative but conveys her feelings with her facial expressions, by holding my hand and running her fingers across my hand and arm. Some nights and a few mornings, she is talkative. We’ve had a good number of those in the past few weeks. One evening in the past few days we talked more than thirty minutes. These are moments I treasure.

Another time when she conveys that she knows me is when we are getting her up and putting her to bed. We have to roll her on her side in bed to dress and undress her. I always assist the caregiver who stands on Kate’s side of the bed and rolls Kate closer to her. I get in bed on the other side of Kate and put my right arm under her shoulder and my left hand on her thigh to roll her to me. I continue to hold her in my arms while the caregiver does what she needs to do.

Kate doesn’t like being rolled; however, she relaxes when she is in my arms. She affectionately runs her hands across my back. Frequently, she talks to me in a very natural way, and, sometimes she laughs as she speaks. Strange as it seems these are moments involving a physical and emotional connection. They are romantic moments for us. Yes, she knows me, and our love is still alive although it is expressed in ways we could not have imagined before.

It doesn’t matter to me whether she remembers my name or that I am her husband. Our relationship remains strong. For that, I am grateful.

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Living in the Moment

During most of my adult life, I’ve heard people talk about ‘Living in the Moment.” I always felt that Kate and I had done just that throughout our marriage. Then she was diagnosed with Alzheimer’s. Suddenly, living in the moment took on a new meaning. I felt an intense desire to make the most of the time we had left.

One of my first efforts to spend more time with her was to change my lunch routine. That was easy. I was already transitioning into retirement and coming home after lunch. I started leaving the office earlier, and we began eating lunch together every day. Little did I know that it was our first step toward binging on eating out for lunch and dinner every day until the pandemic in March 2020.

Eating out was not the only thing we binged on. We also attended many movies as well as musical and theatrical events. We were together a lot, but I did get out to go to the Y, run errands and meet friends for coffee.

With the progression of her disease, I began to feel uncomfortable leaving her alone. That led me to bring in caregivers four hours daily on Monday, Wednesday, and Friday.

This turned out to be harder for me than for Kate. I didn’t like being away from her that long, and I always came home before the caregiver was supposed to leave. We continued that schedule until she was hospitalized with Covid in 2020. That is when I arranged for care eight hours a day seven days a week.

To a degree, I have adapted to being away from her. Even with help, the stress of caregiving is much greater than before, and I enjoy going out to lunch three days a week; nevertheless, I still want to be with her as much as possible. As a result, I am away no more than three hours of every 8-hour shift. That means I am with her twenty-one hours a day.

I have often talked about our Happy Moments. During the past year, we have begun to have more of those.  That’s because Kate is now waking up earlier in the morning than she has in the past three or four years. That has cut into my time to take care of my daily tasks, but it also gives us more quality time together. I’ve welcomed that and make the most of it. I am with her as much as I can during those mornings.

When I’m doing my daily chores like folding and putting up laundry, I do that in the bedroom so that I can be with her. Other times, I get my laptop and sit up in bed with her while I check email, and work on other things like new blog posts. Every morning I do deep breathing exercises. When she is awake, I do them sitting up in bed beside her or in a chair beside the bed.

On mornings when she is especially alert, we sit up in bed close to each other and just enjoy being together. Since Kate has no memories of the past, I remind her of other special moments in our lives. They include our dating, falling in love, getting married, moving to new places, having children, making new friends, and traveling. We often watch music videos on YouTube. These are very special moments for both of us. We are indeed “Living in the Moment.”

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Mornings with Kate

Kate has never been a morning person and Alzheimer’s, Covid, and a stroke have made mornings the most difficult part of her day. I call this her neutral time. It’s a time when she is neither happy nor sad, but that seems to be changing.

Over the past year or so, she has experienced more “Happy Moments” in the morning. During the past few weeks, they have occurred even more frequently, and now I spend more of my morning time with her. We watch music videos on YouTube, and I often talk to her about the many moments we have shared during our marriage. She rarely speaks, but her facial expressions communicate that she enjoys hearing what I tell her.

These are also times when it is clear that our relationship remains strong. We like being together. Each of us retains the love that began during our senior year in college. Like so many other aspects of our lives, I don’t know how long we will have these moments. I do know that we were in the same position at the time of her diagnosis 13 ½ years ago. We simply decided to enjoy life and each other for as long as possible. That has served us well. I think we’ll stick with it.

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Our Life at Stage 7 Alzheimer’s

It’s been a month since my last post. This break is by far the longest I have had over the course of Kate’s Alzheimer’s. Most of those breaks have been in recent years. I attribute much of that to the fact that our lives have become more routine since Kate has required total care. That began after her hospitalization with Covid in November 2020. Her activities and behavior are more similar from day to day than they were before. That gives me less to talk about.

However, more than our routine life keeps me from writing as much. My life is much busier now than it used to be. Except for 2-3 hours a day when I go to lunch, run errands, meet friends, and attend activities in our retirement community, I am with Kate. Some of that time involves actual care but much of it is simply enjoying my time with her.

The most important thing that has happened since the first of the year is that Kate has steadily shown improvement. She has enjoyed many “Happy Moments” over the past few weeks. I have come to expect at least some of those every day.

Kate’s behavior regularly reminds us that she understands much of what other people say. Sometimes, her smiles and laughter suggest that she is enjoying the conversation around her. She knows far more than most of us are aware.

One of the changes that has occurred is her mood in the morning. Beginning during what I would call the middle stage of her Alzheimer’s, she often awoke confused or frightened. Over the years, the fright seemed to diminish, but she awoke in what I call her “neutral” state or mood. During that time she doesn’t smile, talk, or respond to what is said to her.

During the past five to seven months, Kate has begun to smile and talk far more in the morning. That has changed my schedule and is another reason I don’t write as many new posts. Now, I spend more of my morning time with her. I am writing this post sitting up in bed beside her. She has been in and out of sleep, in a happy mood, and talking a little. I just looked over at her. Her eyes were closed, but she had a big smile on her face. I leaned down and put my head on her shoulder, and she chuckled. That is a typical response when I express any form of affection. I love these moments, and we have many of them.

It has been 13 ½ years since her diagnosis and 18-20 years since we noticed the first signs of her Alzheimer’s. I am mindful that these moments won’t last forever, and I feel a strong desire to spend as much time as I can with her. We still enjoy life and each other. How fortunate we are.

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An Amazing Afternoon

As I have noted previously, Kate was hospitalized with Covid for eight days in November 2020. Prior to that, she was in the early stage of aphasia and also showed signs of losing her mobility. Her hospital experience exacerbated each of these symptoms. Five months later, we moved to a continuing care retirement facility. Although she never cognitively recognized the move, our lives were very different. A year later, she had a stroke.

Since that time, we haven’t had any other “bumps” in the road, and Kate has improved in noticeable ways. That has been especially true during the current year. This past week we experienced another “Happy Moment” for her and everyone she encountered.

It began at a reception following an afternoon concert.  One of the residents of our retirement community came over to talk to us. During the conversation, Kate surprised us by speaking to her. As usual, what she said was unintelligible, but it was great to see and hear her talking.

When that resident moved on, another resident approached Kate and asked her a question. This is the same resident I mentioned several posts ago who a few weeks ago had engaged in an extended conversation with Kate. We were especially pleased because this resident stops to visit with us almost every day when we go for ice cream. She is always seeking a smile or some audible response. Typically, Kate neither smiles nor talks to her. This time she received plenty of both.

From there, we went to the café down the hall where we got Kate’s ice cream. It wasn’t long before that same resident dropped by. Once again, Kate responded beautifully. They must have talked at least 20-30 minutes.

While they talked, another resident sitting at a nearby table was astonished. She said, “I’ve never heard her talk before.” She was so fascinated that she dropped what she was doing and just listened.

Three other residents were sitting across the room. They had heard what was going on and were listening as well. When the resident talking with Kate left, I invited them to come over to our table. They gladly accepted my invitation. That continued until it was time for our dinner. Altogether, Kate was involved in conversation almost two hours.

It was not only that everyone was amazed that she was talking. She also appeared to grasp what was being said to her.

During the past few days, Kate has continued to be especially cheerful and talkative. This isn’t true every moment of the day but definitely more often than usual.

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Family: Another Valuable Tool in My Caregiver’s Toolbox

During the early years after Kate’s diagnosis, I honored her desire not to tell anyone right away. That included our family, but I found that getting the diagnosis had made me focus my attention on making the most of our time together. I wanted our daughter and son, then in their 40s, to have the same opportunity, so I arranged a phone call to fill them in. That turned out to be a wise decision. They’ve played a significant role as members of “Our Team” of supporters, and have helped make our lives happy.

Although both of them live out of state, they are regularly in touch with us by phone and visit us several times a year. Our son is a certified care manager who consults families regarding a broad range of decisions often faced by seniors. That has been especially beneficial to me as Kate’s primary caregiver.

They made their most recent visit to dovetail with Father’s Day and my birthday. Two days later, our daughter’s husband, their twin sons, and the girlfriend of one of the twins joined them. At this stage of Kate’s Alzheimer’s, family moments together are very special. This one was no exception. It served as a reminder that family relationships play a valuable role at every stage of life. I am grateful for what that has meant to us.

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Celebrating our Anniversary

Kate and I celebrated our sixty-first anniversary this past Friday. We celebrated twice this year. The first was the previous Sunday when I arranged for a van to take us to the restaurant at which we had eaten almost every Sunday for almost ten years before the pandemic closed the restaurants. We took a van because getting Kate in and out of a car is too difficult. A “wheelchair-accessible van” enables us to roll her in and out of the van while she is in her wheelchair.

I continue to eat there for lunch every Sunday, but I chose to take Kate in the afternoon when the restaurant is much quieter. We had a great meal, and the staff was unusually attentive. This was the first time they had seen Kate since the Fall of 2020 before we both had Covid. Since that time Kate has been wheelchair-bound.

I can’t predict how Kate will respond in situations like this. As always, I hoped that she would be cheerful. That didn’t work out. We had a bumpy ride to the restaurant. That frightened her, and she also slipped down in her wheelchair which made her a bit uncomfortable. Her best moment occurred when one of the servers dropped by to say hello. She had a big smile, and Kate responded with one just as big. That was a great start, but that was the last sign of cheerfulness we saw while we were at the restaurant; nevertheless, we enjoyed our meal. I was glad we had made the effort to be there.

Our second celebration occurred on Friday, the day of our anniversary. We didn’t get off to a good start. Kate awoke with a scream at 3:30 am. Whatever bothered her was over quickly, but she was awake until about 6:30. She was in a talkative mood, so I decided to skip exercise that day. I felt the conversation with her was an anniversary gift. We talked a long time before she fell asleep, and I got up.

Several times during the morning, she had several other episodes of whatever disturbed her earlier that morning. She wasn’t in a good mood when the caregiver arrived; however, her mood changed while we were getting her up. She smiled and even spoke a little while we were dressing her.

When I returned from lunch, she was glad to see me. She was smiling and talkative. We talked for almost an hour. She was doing so well that I suggested that the caregiver and I take Kate out for her ice cream earlier than usual. That gave us a little extra time to enjoy the beautiful day outside before going to dinner.

We finished our day with filet mignon in the dining room and a nice evening at home a great way to celebrate our anniversary.

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Another Valuable Tool in My Caregiver’s Toolbox

The first seven years after Kate’s diagnosis went very well. We enjoyed life just as we had decided to do, but I never stopped to think about why we were doing so well. It was just good fortune. Of course, that was, and still is true, but it wasn’t until 2018 that I read a book that gave me a deeper understanding. That was The Dementia Handbook by Judy Cornish.

The critical piece of information for me was her distinction between rational and intuitive thought and abilities. She makes the point that “All is not lost with dementia.” People with dementia lose their rational thought that deals with facts and reasoning. They lose their memory and ability to do many things they have done before; however, they retain their intuitive thought and abilities that deal with feeling and emotion experienced through our senses. People with dementia can still see, hear, taste, touch, and smell. That means they can still enjoy many of the pleasures in life. This knowledge became one of the most important tools in my “Caregiver’s Toolbox.”

When I looked back at the things Kate and I had done, it was clear to me that we had devoted ourselves to activities that tapped into our intuitive thought and abilities. We didn’t focus on the things she couldn’t do. We devoted our attention to what she was still able to do. Our decision to enjoy life and each other for as long as we could led to our binging on the activities we had enjoyed before her diagnosis. All of them were things that Kate could still appreciate. I’ll say more on that in my next post.

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A Touching Moment

My intention has always been to provide an honest account of our experience while “Living with Alzheimer’s.” I hope that my recent posts about our “Happy Moments” don’t give you the impression that is all that we have. There are two reasons that I comment on them.

First of all, during almost any day, these moments stand out as especially happy ones. Second, most other accounts of life with Alzheimer’s that I have read have a heavy focus on more troublesome moments. Kate and I have been fortunate to have far fewer of those and a greater number of happy ones.

This past Thursday was a good example of our Happy Moments. The day began slowly. Kate awoke a little earlier than usual but slept off and on until the caregiver arrived at 11:00. She didn’t speak or smile much until I returned to the apartment after lunch. She became more cheerful when she was having her afternoon ice cream at Lowry’s, a café in our retirement community

It was the day before our community was having a social gathering celebrating the Kentucky Derby. Several residents were in the art room making hats for the women to wear. One of them made a decoration for Kate, and she got a little attention at the café and later in the dining room. That brightened her day.

She was still cheerful when we got back to the apartment, but I wasn’t prepared for what happened after we put her to bed. I stood beside her and ran my hand across her hair. She looked up at me and said, “I love you so much.” You might think this is a normal routine, but Kate rarely says she loves me. She usually expresses her affection with her facial expressions, so moments like this stand out. I was touched.

Every day since then, we’ve had other “Happy Moments.” Yesterday, we experienced one of those when I read The Velveteen Rabbit to her. She was engaged more than usual and responded audibly and with her facial expressions. One of those involved her laughter at something she thought was funny. I should add that all of her responses were appropriate to the passages I was reading at the time. I don’t know how much she actually followed, probably more than I imagine. I do know that I enjoy all of these moments.

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More Happy Moments

I feel I’m becoming a broken record, but I also want to record as many “Happy Moments” as I can before they come to an end. As I have said before, Kate isn’t cheerful all the time. She is typically in a neutral state. During that time, she doesn’t appear happy or sad. In fact, she doesn’t ever feel sad, but she is frequently happy. Her happy moments occur most often in the afternoon and least common in the morning. That fits with the fact that she has never been a morning person.

Over the last year or so, and especially in recent months, she has been waking earlier, feeling at ease, and sometimes talking. On those days, I often get in bed beside her. Wednesday of this past week was one of those days. As usual, I understood only a few words she said, but it was a very special conversation during which I talked about our first date and how that led to many others leading up to our marriage. At one point, I said, “I love moments like this with you.” She said, “I do too.” Her words were as clear as though she didn’t have aphasia at all.  

That afternoon was also special. She was in a cheerful mood when I returned from lunch. We talked for a short time, and I read The Velveteen Rabbit to her. I used to read it frequently; but after a while, she seemed to lose interest. I thought the Alzheimer’s had made it too difficult for her to appreciate it. In recent months, I have read it to her with much better success. She used to respond audibly to much of what I read. It’s not the same now, but she listens quietly and appears to concentrate on what I am reading. It is clear that she enjoys listening, and I enjoy reading to her. I treasure these moments.