Posted on

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

Posted on

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.

Posted on

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.

Posted on

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.”

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.