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Welcome to Living With Alzheimer’s

January 25, 2024

This site consists of a journal I started on January 21, 2011. That was the date on which my wife, Kate, was diagnosed with Alzheimer’s disease. It is an account of our lives since that time and includes the symptoms Kate has displayed as well as how we have adapted. You will also learn about our frustrations and problems.

What may surprise you is how much we have been able to enjoy life and each other even as we experience the toughest challenges of this disease. In that respect, we have been more fortunate than most couples who travel this road. Kate has declined significantly in recent years and has been in the last stage of Alzheimer’s more than three years. We both tested positive for COVID two weeks before Thanksgiving in 2020, and Kate spent eight days in the hospital. She recovered quickly from the physical effects of the virus but it took several months to recover from the trauma of being taken to the hospital by ambulance and the hospital experience itself.

In early February 2022, she had a stroke. That has also had an impact on her. She was an early stage of aphasia, and the stroke made that worse. She doesn’t talk much, and when she does, it is almost impossible to understand what she is saying. Every day, however, she says a few words or sentences that we can understand clearly. The stroke also affected her right leg, She is unable to straighten it.

Although our lives have changed significantly, we continue to enjoy life and each other. We can’t be as active as had been, but we still get out as much as we are able. We live in a continuing care retirement care community.  Every day we go out for ice cream at 3:30 and go from there to dinner at 4:30. That gives us enough time to have a leisurely dinner and get her to bed around 6:30.

I don’t know what lies ahead, but we began our journey with the intent to enjoy life and each other for as long as we could. That seems to have worked in the past, and I am hopeful that it will serve us well in the future.

Thank you for your visit.

Richard Creighton                                                                                                 @LivingWthAlz

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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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Creating a Caregiver’s Toolbox

Although Kate and I have experienced “ups and downs” while “Living with Alzheimer’s,” we’ve been able to live joyfully from the time of her diagnosis. There are many reasons for our success, but I believe having a large “caregiver’s toolbox” has been one of them.

We began our journey with 22 years of caregiving experience. That included all four of our parents and my dad’s significant other after my mom’s death. Three of them had dementia. We learned a lot during that time, and it made it easier for us to approach our personal experience with Alzheimer’s. That gave us the first tools for our toolbox.

My professional experience also provided relevant knowledge about caregiving. For ten years I was a social psychology professor. As I transitioned to a career in market research, I directed a master’s degree program for alcohol and drug abuse counselors. That fit well with my social psychology background and greatly expanded my knowledge acquired in academia.

Several years later, I joined the Stephen Ministry program of our church. This program links individuals who are facing personal and/or family problems with church members who serve as understanding companions who meet with them regularly until the service is no longer needed.

Despite that background, I felt the need to know far more. Each of the people for whom we had caregiving responsibilities was unique.  I wanted to know how other people dealt with their situations.

My first step was to visit the Alzheimer’s Association website where I found an abundance of information and sources of help for caregivers as well as their loved ones. I read a fair amount of posts on various message boards but found it a little depressing. It was a comfortable place for people to express their problems and seek help, but I wanted to find a source with a more positive outlook.

That led me to check books on Amazon where I found Alzheimer’s Daughter by Jean Lee. Both of her parents had been diagnosed with Alzheimer’s on the same day. She carried a very heavy load as a caregiver. It was far more challenging than any of the experiences with our parents. Although facing significant struggles, she came away with an uplifting message for others facing similar situations.

I liked that. It led me to write her a letter. I was surprised and pleased when she replied. It turned out that she did much more for me than that.

When I created this blog, I communicated with her. It was she who introduced me to AlzAuthors, a not-for-profit organization of people who write about dementia. Becoming a member expanded my knowledge about dementia and caregiving. It also provided me with a much wider range of support. Most of them were caregivers or former caregivers. Others were people who were medical professionals who studied dementia. Still others had been diagnosed with the disease. As a result, I have been asked to serve on panels of workshops on various aspects of dementia and to be interviewed on several podcasts.

It wasn’t just the authors themselves, but many of them were also active on Twitter (now X). I, too, became active. That brought me in contact with a host of other people whose experiences have influenced me.

In addition to the impact that Alzheimer’s Daughter had on me, I was highly influenced by an article I read. It dealt with the importance of a team for a caregiver. The article’s focus was on a team of medical, legal, and financial professionals. I shared the author’s view and already had those in place, but I took that one step further.

I’ve always enjoyed being around other people. I decided to consider everyone with whom I came in contact to be a member, or potential member, of my team. That began with my family and friends but expanded to social media like Facebook and Twitter and the many strangers I encountered. This didn’t require anyone to do anything special. Even people who checked and bagged my groceries became part of my team. Servers in restaurants were especially important. As I look back, having a large team of supporters has played a big role in helping me as a caregiver.

Thus, I began life as a caregiver for Kate with a toolbox of useful tools. That toolbox has expanded considerably over the years. A carpenter always encounters situations that require new tools. That is certainly true for me as a caregiver, In future posts, I’ll talk about other tools that have been especially valuable to me. Stay tuned.

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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.

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An Unusually Happy Moment

In my first post of the year, I said we were off to a good start. That was because we had just gotten a replacement for our previous Monday through Friday caregiver who left us for health issues of her own. Three months have passed since our new caregiver has been with us. She has made our lives much better; however, Kate has also gotten along very well during the first three months of the year. My previous posts have been filled with the “Happy Moments” we have shared this year. During the past week, we have had more of those.

One of those occurred last Wednesday. As I was returning home from lunch, I caught the tail end of an unusually Happy Moment. Kate and the caregiver were at the café in our retirement community where we go for ice cream each afternoon. When I approached them, I saw Kate and the caregiver with another resident sitting right in front of and facing Kate who was smiling. They were having a conversation.

What made this an especially rare moment is that the resident drops by almost every afternoon when we are having ice cream. Each time, she is looking for a smile or verbal response from Kate. That rarely happens. This time she hit the jackpot.

Of course, the resident could understand almost nothing that Kate was saying. Like me, she was simply enjoying the fact that Kate was so cheerful and talkative.

Later, I was surprised to learn that Kate had spoken several words or short sentences that were understandable. Here is one that our caregiver told me.

Resident: “I think Richard likes you.”

Kate: “Yes. He takes care of me.”

Since then, Kate has had several other days when she was especially cheerful and talkative.

I can’t explain why she is having so many more of these experiences, but they make everyone happy as well. I do know that when she is like this, she receives a lot of reinforcement from the people around her. That is certainly true for her caregivers and me, and we celebrate every Happy Moment.

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Let the Good Times Roll

Two months ago, I wrote a post recognizing the 13th anniversary of Kate’s Alzheimer’s diagnosis. Since that time I have added five new posts. Each one has celebrated “Happy Moments” with Kate. This is another one.

Kate has continued to make significant progress. Not concerning her Alzheimer’s, but she has more “Happy Moments” than when we moved to our retirement community three years ago. I haven’t kept score, but since January I don’t think a day has passed when she hasn’t been very cheerful at least part of each day. Let me remind you that this doesn’t mean she has Happy Moments all day long. Her mornings are still the quietest part of her day. Of course, she sleeps a good bit of the time before the caregiver arrives at 11:00; however, she has been waking earlier and is often smiling.

Her Monday through Friday caregiver and I have also been struck by the fact that she is saying more words that we can clearly understand. I keep a record of them as they occur. Here are a few from last week.

After I returned from lunch

Richard: It’s about time for us to go for ice cream.

Kate: That’s good.

After dinner that night

Richard: We’re going to have a nice night together.

Kate: I love it.

Just before leaving the dining room

Server: Goodbye. See you tomorrow.

Kate: I’m glad you’re here.

In apartment

Richard: I like all the pictures I see of you.

Kate: I thank you.

Getting Kate ready for bed

Kate: Coughing

Caregiver: Are you OK?

Kate: I strangled.

You may think of these as insignificant, but for someone who rarely says a clear word, it is very special.

I attribute much of her recent progress to her recovery from her stroke two years ago. Since then, we haven’t had any bumps in the road. In addition, she continues to receive a good bit of attention from the residents and staff at our retirement community. I, too, give her a lot of attention. I am only away from her about three hours a day. That comes when I am out for lunch, meeting friends for coffee, and/or running errands. In addition, I smother her with love from first thing in the morning until we turn the lights out each night.

Almost two weeks have passed since I began this post. Since then several everyday non-caregiving responsibilities have gotten in my way. During that time, Kate has experienced numerous Happy Moments. It should go without saying that has meant many Happy Moments for me. It has been an amazing time.

I know these moments won’t last forever; however, right now, I’m savoring every one of them.

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Happy Days

It’s been five weeks since the 13th anniversary of Kate’s diagnosis, and I haven’t had anything but good news to report. I’m happy to say that she continues to surprise me with her “Happy Moments.” They have been more frequent in the past two weeks. That is especially true when she and I are alone or with the caregiver, but she has also shared her cheerfulness with residents and staff.

I’ve been taking more videos because she has been talking more. Despite her aphasia, she appears to be communicating appropriately. I also continue to jot down things she says that are clearly understood. Here are a few of those from the past couple of weeks.

While having ice cream on Saturday afternoon, I said, “I didn’t have lunch today.” She said, “Why?” At Dinner that night, the caregiver said, “I had a cough.” Kate said, “What did you say?”

At dinner last Thursday, I said, “You’re entertaining us tonight.” She said, “That’s great!” As we neared the end of dinner, I said to the caregiver, “She really cleaned her plate.” Kate immediately said, “Yes!” A little later, she and the caregiver were waiting for me at the elevator. Kate said to her, “What are we going to do now?” Later in our apartment, I said, “You make me happy.” She said, “Yes, I know.”

Earlier this month, the Seekers were on YouTube singing “I’ll Never Find Another You.” I turned to Kate and said, “I’ll never find another Kate.” She said, “That’s wonderful.” These words may seem trivial to some people, but they don’t occur often; therefore, they are very special to me.

Kate has been saying things like this more often than in the past couple of years. Perhaps, the brain itself is repairing the damage from her stroke on February 7, 2022. Whatever the reason, I enjoy every word she speaks even when I can’t understand them. I just love hearing her voice.

Addendum

2024-03-04

The Happy Moments Continue

For the record, I would like to report that Kate’s “Happy Moments” have continued throughout the week since this post was written. As always, I want to emphasize that this doesn’t mean that they occur all day every day. She is usually in what I call her “neutral mood” in the morning. She tends to perk up in the afternoon, but this past week, she was unusually cheerful several mornings .

I am not naïve. I know that these good times will pass, but I have no idea when. It could be tomorrow or much later. In the meantime, I celebrate every “Happy Moment” she has.