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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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Nighttime Conversations

Kate has never been a morning person. That has never been truer than during the middle and late stages of her Alzheimer’s. She rarely speaks in the morning. Sometimes cheerfulness and speech make their first appearance in mid-afternoon, often as we have ice cream shortly after 3:30. Sometimes it doesn’t happen until dinner, or even later.

For me, our evenings together are among the best times of the day. We watch music videos on YouTube and talk. I’ve mentioned this before, but it’s hard for me to adequately express in words. Last night, I took a few videos and attached them to a post on Facebook.

I like to think that Kate would forgive me for letting the public in on private moments like this when she is in bed in her bed clothes and her hair messed up. Despite this, I believe it’s a beautiful example of how happy she is and why this is my favorite part of the day. She still captures my heart as we approach our 62nd anniversary. Not even Alzheimer’s has been able to take this away from us.

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More Happy Moments

Kate continues to experience more “Happy Moments” than she did 3-4 years ago. That has been especially true during the past couple of weeks. I often say that I can never predict how she will feel. She can be happy at one moment and withdrawn the next; however, I have come to expect her to be more at ease after 3:00 in the afternoon and often until she goes to sleep at night. That had not been so predictable since her stroke three years ago.

After the caregiver left last night, she and I experienced a Happy Moment that I would call very romantic. I was beside her in bed with my head on her shoulder. We watched a DVD of the 2025 anniversary concert of Les Miserables, our favorite musical.

Touch is more important to her now than at earlier stages, perhaps because she has aphasia. As we enjoyed the music, I put one hand across her stomach, and she put her hand on my hand. In a few moments, she began to stroke my hand gently. As I often do, I talked with her about some of the special times we had had in the past. She didn’t say much, but she was able to communicate her affection with beautiful smiles as I talked. This lasted for about an hour until the concert was over, and we called it an evening.

Her Alzheimer’s, her hospitalization with Covid, and her stroke made this romantic evening different than it might have been in years past, but there was a connection between us that made this particular moment as romantic as any we have ever experienced. We have lost much since her diagnosis fourteen years ago, but we still enjoy life and each other.

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A Morning Surprise

We’re off to a good start today. Our housekeeper arrived at 8:15, and I was in the bedroom with Kate. She came to the door and said, “Knock Knock” to let us know she was coming in. Kate immediately said, “Hi” and laughed. Until that moment, she hadn’t said a word or shown any signs of being awake. It was great to start the day with a “Happy Moment”. I don’t know exactly when, but I feel sure there will be more such moments. There usually are.

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An Amazing Day

For years, I’ve noted that mornings are Kate’s most difficult part of the day. I call this her neutral time. Typically, she is not cheerful. As she gets more stimulation throughout the day, she becomes happier. Her best time of the day is generally late afternoon and evening; however, a change has taken place over the past year or so. She occasionally wakes up earlier and with a smile, but it doesn’t usually continue all-day.

During the past few weeks, she has become more cheerful at various times of the day. Saturday was one of those days. It began early in the morning when I walked into the bedroom to see if she might be awake. Her eyes were closed, but she had a smile on her face. I walked over to her bedside and ran my hand across the top of her head as I often do. She gave me a bigger smile. She knew who was stroking her hair. Then she began to talk. As usual, I couldn’t understand much of what she said, but it was clear that she was happy and enjoyed talking. I wanted to take advantage of the moment and spent a good part of the morning next to her in bed.

We had a different caregiver that day. She had been with us once before, but it had been more than a year since we had seen her. I thought that might have an effect on Kate’s mood. I quickly discovered I was wrong. Kate’s cheerfulness continued throughout the whole process of getting her up. She even laughed a few times. That is saying a lot because she doesn’t like to be rolled back and forth to take off what she is wearing and replace it with her clothes for the day.

When I left for lunch, she was eating and still happy. Upon my return, I found her listening to the caregiver who was reading to her. She greeted me with a big smile. Then she and I talked for a while. She is often happy when I come home, but her facial expressions on this day conveyed that she was especially happy.

A little later, we went to a café downstairs. While Kate was eating ice cream, she and the caregiver talked as though they were longtime friends. That is very unusual. Normally, Kate is pretty quiet when we go out. Another resident stopped by to say hello and was amazed to see Kate so talkative. From there we went to dinner and then back to the apartment for the night. Kate continued her cheerful mood. She and I talked and listened to music on YouTube until she fell asleep. It was an amazing day.

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Off to Another Good Start

One year ago today, I wrote a blog post entitled “2024: Off to a Good Start.” One year later, I have the same feeling. Of course, I don’t know what lies ahead, but I know that Kate made progress throughout 2024. Not only that, she experienced significantly more “Happy Moments” during the latter part of the year. And yesterday, the first day of 2025, she had a wonderful day. She was cheerful in the morning and continued throughout the day until she fell asleep last night. She smiled and talked all day. We topped it off with a great evening today. Even though I couldn’t understand much of what she said, it was wonderful engaging in the conversation.

This morning got off to a good start when I walked in the bedroom and saw her smiling. Then she said, “Thank you” with an even bigger smile. I don’t know who she was thanking, but she has hallucinations. I suspect she saw someone who did something nice. For me, it’s great just to know that she is happy.

May the New Year bring happiness and joy to you and your families!

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Living Joyfully During the Holiday Season

The Christmas season has always been special for Kate and me. We had our first date on December 19, 1961. Exactly one year later we became engaged. Since then we have celebrated the season in many ways. Like most people, much of that involved time with family, but we have also made December trips to places like New York City, London, Paris, Vienna, London, and several locations in Germany.

Life is very different now. We gave up international travel in 2015 and travel to our children’s homes in 2018. Since then, we have celebrated the season at home. Now that Kate is in the last stage of Alzheimer’s and requires total care for all of her daily activities, we don’t get out except within the halls of our retirement community.

Despite these changes, we are living joyfully this Christmas. Living in our retirement community has provided us with a considerable amount of social contact and special events of the season; however, sharing the season with Kate has made this a Very Merry Christmas for me.

By now, most of you know that music has played a major role in our lives, so it should not surprise you that we have binged on holiday music day and night the past few weeks. More importantly, Kate seems to have risen to the occasion. She has been unusually cheerful and talkative, especially in the past two weeks. For example, almost every day in the past week, she has given me a smile when I greeted her in the morning. That is significant because her mornings are the time of day she is least likely to smile or talk.

Her afternoons, especially after 3:30, are her best time of day, but they have been even better this week. Our regular caregiver was out a few days, and we had several others filling in. I might have thought this would have a negative effect on her, but it hasn’t. She has been just as cheerful with them and other residents.

Our evenings are often special. Three nights ago was a good example. Kate was unusually talkative and spent the better part of an hour talking to me. She was trying to tell me about some experience she had had. As she talked, she laughed at a number of things she said. Of course, none of what she said had actually occurred, and I wasn’t able to understand most of what she said; however, she was happy. I was too.

Yesterday was the sixty-third anniversary of our first date. We didn’t go out for dinner. We ate in the dining room of our retirement community as we do every night, but we were together. Nothing could be better than that. We are, indeed, living joyfully this Christmas season.

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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.