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Do We Have Any Moments When We’re Not Happy?

I talk a lot about the Happy Moments that Kate and I have but try to convey that they don’t occur all the time. It would be fair for you to ask what our lives are like the rest of the time. Do we have Bad Moments? Here’s my answer.

Our Bad Moments are rare. They include getting Kate’s Alzheimer’s diagnosis, her hospitalization for Covid, the first few weeks after her return from the hospital, her stroke, and the first few weeks after that. Apart from those, I wouldn’t call any of our time together Bad Moments.

Sad moments are another thing. I can’t tell if Kate has any of them. I know that I do. Sometimes they occur when we are getting her ready in the morning and into bed at night. Although she has adapted very well, they always involve things that she doesn’t like. Nobody would like to live their lives so dependent on others. This will continue for the rest of her life, and I feel sad for her.

At this late stage of Kate’s Alzheimer’s, I also experience sad moments when I think about losing her. Although we can’t do most of the things we used to do, she is happy a good bit of the time. That keeps me happy, and I’m not ready to let her go. I want to keep her as long as I possibly can.

Most of our days are filled with Neutral, Pleasant, and Happy Moments. Here is a short rundown of a typical day for us.

I get up between 4:30 and 5:00 five days a week when I go downstairs to our wellness center where I work out for fifty minutes on the seated elliptical. I go early because I can be pretty sure that she is still asleep and won’t need anything.

When I return, I change clothes and have breakfast before checking email, preparing Kate’s morning medicine and juice, and doing a variety of other daily chores. Sometimes, like today, I work on a new blog post. Periodically, I check Twitter and upload a new message related to Kate. The days vary, but I have other household responsibilities like washing and putting away dishes or laundry, watering plants, or paying bills. Other times, I order supplies like gloves, wipes, and other items used by Kate’s caregivers.

Kate usually sleeps until 10:30 or 11:00. During the past year, she has begun to wake earlier. This is usually a neutral time. She almost never speaks or smiles and normally goes back to sleep after her morning meds.

Sometimes she remains asleep until the caregiver arrives at 11:00. Other times, she vacillates between being asleep and awake. That happened this morning. I was in bed beside her when she opened her eyes, smiled, and spoke a few words. I couldn’t understand them, but just hearing her makes me happy. Shortly after that, she was resting again. This time can last as long as several hours, sometimes until I return from lunch.

Once in a while, Kate is cheerful when she wakes up. When that happens, I take advantage of the opportunity to spend time with her. After getting her meds and something to drink, I often get in bed beside her. These are usually Pleasant Moments. It is rare for us to have any conversation. Kate’s not ready for that, but I enjoy being with her. It’s a pleasant time for us. While she goes in and out of sleep, I work on my laptop. On some mornings, she is cheerful and talkative. Those are Happy Moments.

I leave for lunch while the caregiver feeds Kate. I don’t know for sure what happens while I am gone. I do know that the caregiver who is with her Monday through Friday sits beside her the entire time I’m away. I also know that Kate feels comfortable with her and occasionally talks with her.

When I return, we usually have a period of Neutral Moments. She is almost always resting
in her recliner with her eyes closed. I go directly to her and tell her how glad I am to see her. In the past, she hasn’t shown any emotion at all; however, more recently she has responded with a smile when she hears my voice. As I reported in an earlier post, recently she was quite excited when I returned home. That was obviously a Happy Moment for both of us.

Between then and the time we leave for ice cream, I spend most of my time with her but take breaks to check email, call friends on the phone, and do any other chores that need my attention. This time is usually filled with Pleasant Moments. I enjoy these moments. They are just not as upbeat as our Happy Moments.

Our ice cream and dinner times are always Pleasant Moments. Kate likes her ice cream and usually smiles off and on while we are out. Some of the residents and staff stop by our table to talk briefly. They always greet her warmly. Although she rarely speaks to them, she seems to pay attention to what is said and often smiles at specific things that they say. Sometimes she is especially cheerful and talkative. Those are definitely Happy Moments.

Our evenings are almost always filled with Happy Moments, but they are somewhat different from those occurring earlier in the day. All of our obligations of the day are over, and both of us are relaxed. We simply focus on being together. The combination of Alzheimer’s and aphasia limits Kate’s speech. Despite that, she communicates a lot with her facial expressions and her hands. It is a romantic time for both of us. I often tell her about our children and grandchildren as well as many experiences we have had during our marriage while she smiles and holds my hand and runs her hand gently across mine.

Before going to sleep, I say, “Thank you for a very nice day. Did you know that every day I spend with you is a nice day?” She sometimes smiles. Then I say, “I love you, Kate. I always have. I always will. Forever, and ever, and ever.” She almost never says, “I love you”, but once last week, she puckered her lips and blew me a kiss. That was another Happy Moment. She doesn’t need words to express her affection for me.

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A Very Special Father’s Day

I would never have guessed that right after my previous post about “Very Happy Special Moments I would be treated to the best Father’s Day present I could want. Kate had a truly fantastic day. It began before 8:00 in the morning and continued until she dosed off to sleep around 8:30 last night.

She was not only cheerful but very talkative. As I often do at times like this, I got in bed with her, and we talked almost constantly over a period of three hours. Of course, her aphasia prevented my understanding what she was saying, but I played the role of facilitator saying things like “Really?” “That’s interesting.” “Tell me more about that.” “I love talking with you.”

Her only downtime was while I was at lunch. The caregiver didn’t give her the same attention, and she was quiet when I arrived. The good news is that she recovered when I knelt down beside her recliner and told her how happy I was to see her.

I should add that she was not agitated. She was simply talkative, and I enjoyed every minute with her. It had been a day filled with Happy Moments. A Father’s Day to remember.

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Very Special Happy Moments

I know it can’t last forever. That’s why I continue to celebrate Happy Moments with Kate. For months, these have occurred at least sometime during every day. Some are more special than others. One of those occurred yesterday when I returned home after lunch.

I can’t predict her behavior, but for quite a while, she has greeted me with a smile at least half of the time. She is always in her recliner with her back to the door. As I open it I say, “Hello, I’m home.” Then I say, “I’m looking for Kate. Where is she?” I approach her recliner, and say, “There she is.” I kneel beside the recliner and tell her how happy I am to see her. If she is smiling, I tell her how much I like her smile and that it makes me happy.

Yesterday, she smiled and laughed just like a child might do when a parent returns. I also responded enthusiastically, and we enjoyed a few moments before I suggested we find some music that we could sing together. I turned on a “Sing Along with Seniors” YouTube video.

For the next 20-30 minutes, we sang old songs like “I’ve Been Working on the Railroad”, “Oh, Susanna”, and “She’ll be Comin’ Round the Mountain”. She was fully engaged, smiling, and mouthing the words. She was doing so well that I suggested to her caregiver that we go for ice cream earlier than usual. That turned out to be a good idea. She continued her cheerful mood, smiling and responding audibly to several people who spoke to her.

Moments like these make my day, and I am grateful to have so many of them. Occasionally, I’m asked what keeps me going. There are many things, but none of them compares to the Happy Moments we share at this stage of her Alzheimer’s. It will be a sad day when they are gone.

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Our Anniversary Celebration

One of the things I’ve learned about “Living with Alzheimer’s” is that people’s experiences can be quite different; however, there is at least one thing that all or most dementia caregivers experience: unpredictability. One minute Kate is smiling cheerfully. The next she is withdrawn.

Because of that, I am never sure how she will react to a situation in which I would love for her to smile or just hear her say a word or two. With that in mind, I prepared something special for our 60th anniversary last week. I decided to take her out to dinner at one of our favorite restaurants, Casa Bella. We hadn’t been there since November 2020. In fact, we hadn’t been out anywhere in more than two and a half years. Kate was beginning to lose her mobility before that, and she was in bed for so long with Covid that she completely lost it. Since then we have only been able to move her with a lift to get her in and out of her bed and into her wheelchair. Thus, going out to eat requires a vehicle that is wheelchair accessible.

Getting transportation was easy. I simply called the agency that provides in-home care for our retirement community, but I had other concerns as well. I didn’t want to put her in a crowded restaurant, so I made reservations for Tuesday night after Memorial Day when I thought it was less likely to be busy than later in the week. I called the owner of the restaurant and made reservations for 5:00 pm. That’s when they open for dinner. At the same time, I arranged a table in the room where we had often eaten in the past. I also asked our caregiver to stay an hour or two later than usual.

The only remaining concern I had was Kate’s mood. I wanted the experience to be as joyful as it had been on our previous visits there, but I knew there was no way to predict how she would feel or react. Nor was there any way I could ensure that she was in a cheerful mood. As it turned out, everything worked out beautifully.

The day began on a positive note. Kate slept late that morning. She was still asleep when the caregiver arrived at 11:00. I was happy about that because she is sometimes worn out later in the day after waking early.

When I arrived home from lunch, she was resting in her recliner as usual. She smiled when I approached her. I spoke to her for a few minutes letting her know how happy I was to see her. I turned on some “Sing-Along-for-Seniors” music on YouTube. She responded well to that. I sang, but she didn’t. Nonetheless, her smiles and facial expressions showed that she was enjoying herself.

We also had a good experience when we went out for ice cream. She smiled much of that time and responded a little to those who spoke to her – at least more than she usually does. Then we came back to the apartment where we met the driver who would take us to dinner.

We arrived as they opened right at 5:00 pm. The owners were not there, but they had prepared the staff for our arrival. They greeted us warmly and got us settled at our table. Kate and I as well as our caregiver (who had never been there before) enjoyed every minute.

Not long after we were seated, the owner arrived and came directly to our table. We had a nice visit with her. Although I can’t remember what she said, I was pleased that Kate responded audibly to something she said. A little later, her husband also dropped by to say hello. We had a good dinner, but the real enjoyment was being back in a place where we had eaten many meals over a period of fifty years. The bonus was that Kate enjoyed herself the entire time. That made for a very special sixtieth anniversary. I could not have predicted that the day would go so well. I’m already thinking about the possibility of doing this again.

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Our 60th Anniversary

Happy Anniversary to my wife, Kate. Sixty years ago today, we began the greatest adventure of our lives. Well, it actually began with our first date during our senior year of college and a year and a half before the wedding.

We had quite a courtship. Less than a month after that first date, I took a job at a funeral home where I worked 4 nights a week. I was a college student strapped for cash and time to date, so my job played a big role in our romance.

On nights that weren’t too busy, Kate would join me at the funeral home where we cooked hamburgers on a grill in the parking lot. Then we adjourned to one of the empty viewing rooms where we watched TV as we became better acquainted. I also took advantage of the flowers that fell as we moved from the funeral home to the cemetery and passed them along to her whenever I could. One of the things I remember most was taking her with me when I was assigned to pick up a body in another city. I was on the company expense account, and the management let me include Kate. We would enjoy a nice steak dinner without costing me a penny.

Less than six months after our first date, it was even obvious to Kate’s parents that ours was a special relationship. After my dad died, I found a letter Kate’s mother wrote to my parents. Here is a quote from that letter.

“I wish you could be experiencing with us all the fun and excitement of their friendship. Yesterday was the 19th and on Dec. 19th, Richard had his first date with Kate to attend the “Messiah.” So they celebrated a six-month ‘dating anniversary’ with 6 lovely red roses. They have such a wonderful time, and it keeps us young just watching them.”

We married eleven months later, launching a lifetime of joy and adventure. We have two great children, and five grandchildren. We have lived in four different cities, traveled, and enjoyed memorable times with close friends and acquaintances.

Late in life, we have faced a few bumps in the road. The first and biggest was Kate’s diagnosis with Alzheimer’s 12 years ago this past January. Then 2 ½ years ago she spent 8 days in the hospital with Covid, and in February a year ago, she suffered a stroke. But through it all, we have continued to enjoy life and each other.

“Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away . . . And now, these three remain: faith, hope, and love. But the greatest of these is love.”

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My Thoughts on Giving Advice

In two recent posts, I discussed some of the many reasons that Kate and I have lived well while “Living with Alzheimer’s.” Many of them were unrelated to anything specific we have intentionally done. Some of them, however, were deliberate choices we made that turned out to be very beneficial. As a result, some people might think I would jump at the chance to give advice to others, but such is not the case. Let me explain.

Long before Kate’s diagnosis, I learned that many caregivers are annoyed by the advice they receive from friends and family. That occurs most often because the person giving the advice doesn’t fully understand the situation of the person receiving it. There’s a saying that is common among the community of dementia caregivers. “If you’ve had one experience with dementia, you’ve had one experience with dementia.” The point is that each case of dementia has its own unique characteristics; therefore, what works in one situation may not work in another.

When people give advice, they usually believe that what worked for them will work for others. They do this without fully understanding that the circumstances of the person receiving the advice may be (and often is) quite different from their own.

My earliest personal encounter with this occurred after we brought Kate’s mother into our home with 24/7 in-home care. Kate was annoyed when an acquaintance periodically encouraged her to put her mother in a skilled nursing facility. That might have been a good suggestion for some people, but not for us. For a variety of reasons, we believed that in-home care was the best option for her mother and for us. I still believe that. Since then, I’ve heard other caregivers talk about their irritation with similar unwanted advice.

As a result, I try to avoid giving advice. There is one notable exception. That is based on what I learned from Judy Cornish, author of Dementia Handbook and Dementia with Dignity. Her approach to dementia caregiving emphasizes an important distinction between rational and intuitive thought. In her view, all is not lost with dementia. Although people with dementia lose their rational thought, they retain their intuitive thought which relies on direct experience with the world via our senses.

That means that even as memory declines, people with dementia can continue to enjoy many aspects of life. For Kate and me, that has involved music, movies, theater, dining out, and social connections. With Kate at late-stage Alzheimer’s, we can’t pursue these interests in the same way that we did during earlier stages. For example, she lost the ability to use her computer which allowed her to connect with family and friends and work on photobooks of family photos. She also lost her ability to use her iPad. She had used it to work jigsaw puzzles for hours a day. We gave up travel. We gave up eating out. As I often say, our world today is much smaller than it used to be, but we can still enjoy life and each other. That’s because we continue to find activities that she can appreciate via her intuitive thought. That includes music which has been an important source of entertainment throughout our marriage.

My primary advice to others who confront the diagnosis of dementia is to accept the fact that rational thinking will become weaker and weaker and focus on what loved ones with dementia can do and appreciate. When you think about it, most of the things we enjoy, whether we have dementia or not, relate to intuitive not rational thought. We don’t derive most of our pleasure from our knowledge of things like the names of current political figures or how to multiply or divide 1,396 by 3. Most of our pleasure comes from eating our favorite foods, listening to music, watching movies or TV, time with good friends, etc. A person with dementia can enjoy all of these things even years after their diagnosis.

I’d like to emphasize one other thing that people with dementia can appreciate via their intuitive thought, and that is LOVE. Love can play a role in lifting anyone’s spirits, but it can be especially helpful with people who have dementia. Their loss of rational thought can easily lead to a lower sense of self-worth. People respond differently to them because they are often unsure of what to do or say. The result is that people with dementia are often ignored, and their sense of self-worth is weakened.

For that reason, I believe caregivers should do everything they can to make sure their loved ones know that they are loved – that they matter. This is easier said than done. Caregivers often find themselves so occupied by routine responsibilities of caregiving (that their own rational thought tells them are important) that they overlook the most important thing they can do – making loved ones feel they are loved.

One reason I feel comfortable giving this advice is that it does not require that other caregivers do the same things that Kate and I have done. When we decided to enjoy life and each other for as long as we were able, we looked to things that had always given us pleasure – music, movies, theater, eating out, travel, and time with friends and family. We were lucky that both of us enjoyed all of these things. That doesn’t happen with every couple, but I do hope that other couples and families might be able to find their own ways to enjoy life and each other. It is certainly worth trying.

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A Very Special Day

Kate continues to have many “Happy Moments.” There is a general pattern to her days. She usually sleeps a good bit until 11:00 when the caregiver arrives. For the past six months or so, however, she has been waking up early (before 8:00 or 9:00). She doesn’t often remain awake. She doses off and on and rarely speaks before the afternoon.

Her best part of the day comes after 2:00. Sometimes it doesn’t start until we have ice cream at 3:30 or during dinner. Our evenings after the caregiver leaves are usually good “together times” for us although she is sometimes tired and goes to sleep early.

The one thing I can count on is that she never seems to have what I would call a bad day. She does, however, have days when she doesn’t display much cheerfulness. They are usually days when she is tired, and they typically come after a day when she has been awake a lot and very cheerful. Friday was one of her cheerful days. It started in the morning and continued most of the day and evening before going to sleep.

She was awake around 8:45 that day and was more alert than usual. She greeted me with a big smile and responded audibly to me. A few of her words were understandable. When moments like these occur, I usually drop whatever I am doing and get in bed beside her, and that’s what I did this time.

The night before I had received a text from the facilitator of a support group in which I participate twice a month. He reminded me of yesterday’s meeting at 9:30. I told him I would attend via Zoom. When I saw that Kate was in such a good mood, I sent him a text indicating I wouldn’t be there.

That was a wise decision. It got the day off to a very good start. Except for a short time during which I got her meds, something to drink, and fixed some homemade applesauce for her (my morning routine for her), we just enjoyed being together. She was very talkative for the first hour. Then she began to relax. About 30-40 minutes before the caregiver arrived, she went back to sleep, but we had had a grand morning.

I went downstairs to lunch while the caregiver fed Kate. I returned for a few minutes after lunch and found that her cheerfulness had vanished. I left to have coffee with a longtime friend, a Friday ritual of mine. When I returned, she heard me when I opened the door and began to smile. I discovered that her cheerfulness had returned as well. The caregiver told me that she talked with a number of residents and staff when they went for ice cream.

She continued to be cheerful and talkative during dinner and afterward. As we were leaving the dining room, several residents talked to her, and she smiled and responded audibly as well.

After getting her to bed and the caregiver left, we enjoyed our time together until we called it a night. It had been an exceptional day. Who would have guessed we might experience this kind of day so late in her Alzheimer’s? Not I, but I am enjoying “Happy Moments” like these to the fullest.

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Care for the Caregiver

In my recent posts, I’ve mentioned a number of reasons Kate and I have been able to live well while “Living with Alzheimer’s.” One that I overlooked is how much support I have received as a caregiver. I find that people are especially sensitive to the load carried by dementia caregivers and their need for help.

Three years after Kate’s diagnosis, I acknowledged her Alzheimer’s publicly. Since then, I’ve received an abundance of support from family, friends, and strangers. Everywhere I go people ask how we are doing and listen with interest as I tell them. Sometimes, people do something special to brighten our/my day. On several occasions when Kate was able to get out, a stranger bought our lunch. One couple (who are far from strangers anymore) buys my lunch almost every time they see me. That’s about twice a month. Only recently, have they let me buy their lunch occasionally. This same couple has given us several books. One contains all of Norman Rockwell’s paintings from the Saturday Evening Post. They have also given Kate several nice pieces of jewelry that the husband had given to his wife over their 61-year marriage.

This past week I received two very special gifts from friends. Coincidentally, each was a night out at a symphony concert. The first was from someone Kate and I have known for about fifty years. Our daughters are “Best Friends Forever.” She has a grandson who plays trumpet with the University Symphony Orchestra, and she invited me to join her and her family for dinner and the Symphony’s final concert of the season last Thursday. They performed Carmina Burana which I had not seen before. I hadn’t left Kate at night for more than two years, but I arranged for a caregiver to stay with her.  It was a great night out with friends, and the performance was outstanding. It was the first time I had attended a live performance in four or five years.

The second gift was this past Saturday night. Kate and I have had season tickets for our local symphony since the mid-eighties. As her Alzheimer’s progressed, we stopped attending but started giving our seats to friends. That was about five years ago. Our neighbor in the apartment next door was aware of my love for our local symphony and that I had once served on their board. Although she has a season subscription of her own, she had offered several times to stay with Kate so that I could go. Each time I declined.

Two months before the symphony’s last concert this past weekend, she once again offered to stay with Kate. This time she was a little more assertive and asked me to pick one of the remaining concerts, and she would stay with Kate. As it turned out, I had already been thinking about attending the final concert of the year. The orchestra was performing Mahler’s Symphony No. 1. It is one of my favorite symphonies. In addition, Kate and I were sponsoring the performance. I really wanted to go, but the caregiver I would like most to have stayed with Kate works for us eight hours a day Monday through Friday. I didn’t want to ask her to pull an extra shift on the weekend. It can be difficult to find help these days, so I was in a quandary about what to do. Our neighbor’s offer was timely, and I accepted it quickly. I’m so glad I did.  It was a wonderful night out. The concert was great, and I got to see quite a few people I hadn’t seen in years.

These two nights out were very special, and I am grateful for the kindness of friends like these and so many others that have helped us live well while “Living with Alzheimer’s.”

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Reflections on Living with Alzheimer’s: Part 2

In my previous post, I talked about our pre-diagnosis experiences and my belief that they have helped us deal with our post-diagnosis experiences with Alzheimer’s. Many other things we have done since the diagnosis have also been valuable.

One is the way we responded at the beginning and continued throughout our journey. We both accepted the diagnosis. We were helpless to change that. Instead, we directed our attention to “What next?” Planning was a critical first step. We talked a lot during the first few weeks. We didn’t arrive at a detailed plan, but we set a goal that has guided us from the beginning to the present time: to enjoy life and each other as long as we were able. We began binging on the activities we had most enjoyed throughout our courtship and marriage.

That included going to more movies and theatrical productions. We took advantage of our local theaters as well as those in three other cities that were within a 2-hour drive from our home. We attended many musical events locally and out of town. We also traveled domestically and internationally.

We made a change in our dining habits. At first, I tried my hand at fixing simple meals and bringing in meals from some of our favorite restaurants. I quickly discovered that I didn’t like fixing meals or cleaning up afterward, so we started eating out for lunch and dinner. That continued until the beginning of the pandemic in March 2020.  We had eaten out more than 6000 times since her diagnosis. In addition to eating out for our daily meals, we went to a local Panera Bread each morning where Kate got a muffin. After lunch, we went home for a break where she rested. Later in the afternoon, we went to the café at Barnes & Noble where we spent an hour or so before going to dinner.

We did all this for convenience and pleasure, but the most important benefit was totally unanticipated. We were never socially isolated. We often ran into friends and acquaintances. We also became better acquainted with the servers and managers of the various establishments as well as other regular customers. Doing all of these things meant we led very active lives. We were living well, and we were achieving our goal of enjoying life and each other.

It wasn’t until 2018 (7 years after Kate’s diagnosis) that I understood why we had gotten along so well. That’s when I read Dementia Handbook by Judy Cornish. She introduced me to the significance of rational and intuitive thought and its relevance for people living with dementia.

Rational thought deals with the kinds of things we learn from our parents, teachers, and many others we encounter. These include the rules of behavior as well as factual knowledge like language, history, math, spelling, names of people, places, things, etc. Intuitive thought involves experiential learning that occurs directly through our senses – touch, taste, smell, sight, and hearing. We put so much emphasis on rational thought that it’s easy to overlook the significance of what we learn experientially. That is probably why so many people believe that all is lost with dementia. That’s a big mistake. As Cornish points out, intuitive thought provides us the ability to enjoy the world around us like music, art, and the company of other people.

When I learned this, I immediately recognized that Kate and I had done just what Cornish suggests. When we focused our attention on enjoying life that led us directly to the things that Kate could appreciate even as her rational thought declined. Music, theater, dining out, travel, as well as time with family and friends were all things she could enjoy.

That is not to say that we could continue all of these things while “Living with Alzheimer’s.” For example, she reached the point at which she could not follow the plot of movies. Interestingly, the last two movies that she really enjoyed were Won’t You Be My Neighbor which was about Mr. Rogers,and RBG, a documentary about Ruth Bader Ginsburg. Both films were filled with humor and touching emotional moments that she could appreciate.

All of these things have enabled us to live joyfully with Alzheimer’s. Best of all, we continue to do so at this late stage of the disease. I firmly believe the improvement Kate has experienced over the past year relates to the attention she receives from the residents and staff of our retirement community. Of course, our primary caregiver and I make sure she gets the same attention at home. This attention is something else that she can enjoy via her intuitive thought/ability.

You might ask, “How long will this last?” I ask myself the same question. The answer is I have no idea. One thing I do know. We will continue to enjoy life and each other as long as we are able.

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Reflections on Living with Alzheimer’s: Part 1

Since Kate’s diagnosis twelve years ago, I’ve connected personally with a number of other couples who are traveling this same road. I’ve also become acquainted with the experiences of 25-30 other caregivers who tell their stories in books, blogs, and podcasts as well as many others via Twitter and Facebook. It seems clear to me that Kate and I have had an easier time than most people – at least the ones with whom I am familiar. We have been very fortunate. But why?

There are many reasons. Most importantly, Kate has been easy to care for. She has never experienced the kind of problems that often accompany the disease. She accepted her diagnosis gracefully and hasn’t experienced any anger and aggressiveness that sometimes occurs with dementia. As her Alzheimer’s progressed and I had to assume a larger role in her life, she accepted that as well as she accepted the diagnosis. In late-stage Alzheimer’s she requires total care, but she has adapted well.

Kate’s only signs of anger or aggressiveness occurred after her 8-day stay in the hospital with Covid in November 2020. She was traumatized by the experience and somewhat belligerent when we changed and dressed her. That dissipated over a period of several weeks. Even now she doesn’t like it when we have to turn her in bed and audibly expresses her displeasure. I understand. I wouldn’t like that myself.

There are quite a few other things that have made living with Alzheimer’s easier for us. I divide them into two general categories – Pre-Diagnosis and Post-Diagnosis. In this post, I’ll deal with our pre-diagnosis situation.

Pre-Diagnosis

  • Neither of us had any other chronic health issues that demanded our attention. That’s not true for a lot of people our age.
  • Kate’s diagnosis came at the end of our working years. She had already retired, and I was transitioning to retirement. That meant we had time to focus on living well with Alzheimer’s.
  • We both shared the same interests including music, theater, movies, eating out, and travel. They all played a significant role in our marriage prior to the diagnosis and increased significantly afterward.
  • We were not constrained by financial difficulties that would have made it difficult to support the expenses incurred along the way. Our long-term care insurance is a good example. Except for the first 90 days, it has covered every penny of her care for the past 5 ½ years. That amounted to almost $20,000 a year in the first three years. During that time, we had in-home care 4 hours a day, 3 days a week. The past two years that has totaled more than $70,000 a year. That covered 8 hours a day 7 days a week. Fortunately, our policy has no cap on the amount of money or any limit on the number of years it will continue to pay although it does have a daily cap of $330.
  • For two years I directed a master’s degree program for counselors who worked with alcohol and drug abusers. In addition, I was active for almost ten years in our church’s Stephen Ministry, a program that assists church members who face a variety of personal, family, and work-related difficulties. I believe these experiences have made me more sensitive in my role as Kate’s caregiver.
  • There is one other thing that was especially important. Prior to Kate’s diagnosis, we spent 21 consecutive years caring for all four of our parents and my dad’s significant other following my mother’s death. Three of them had dementia. Kate’s mother lived in our home for 5 ½ years with 24/7 in-home care. My dad was the only one living at the time of Kate’s diagnosis. He was in skilled nursing following a stroke.

This experience gave us a good bit of knowledge about health issues, medications, professional in-home care providers as well as long-term care facilities. We were far from knowing it all, but we began with greater familiarity with caregiving and dementia than most people facing our situation. That made a difference in how we approached “Living with Alzheimer’s.” I’ll say more about that in my next post.