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Our Lives Since Kate’s Diagnosis Part 8: The Most Important Thing I Have Learned About Caring for Someone With Dementia

In previous posts since April, I’ve summarized what “Living with Alzheimer’s” has been like for Kate and me over the past fifteen and a half years. At first, we were afraid of the changes we would face in the years ahead.

We did face changes, as well as the challenges that accompany them, but after fifteen years, we still enjoy life and each other. It was seven or eight years after the diagnosis that I read a book that helped me understand why we were able to live so well. That is The Dementia Handbook by Judy Cornish. It not only helped me understand the past but also continues to guide me as Sarah Lee’s caregiver every day.

The book is filled with information about dementia and caring for someone with the disease, but what caught my attention most was the distinction between rational and intuitive thought and its relevance to people with dementia.

Dementia involves the loss of rational thought. People lose their ability to remember the names of people, places, and things. They also lose their ability to follow directions and to remember how to do things that require rational thinking. That includes using a computer, following a recipe, and many of our daily activities.

However, all is not lost with dementia. People retain the ability to experience the world around them via their senses. They can see, hear, taste, smell, and touch. Our senses work with intuitive thought, and it is through them we derive much of our pleasure in life.

That has been critical for Kate and me. When we decided to enjoy life and each other as long as we could, the things we did were mostly ones we could experience and enjoy through our senses. We binged on music and eating out. We remained socially active. We traveled to interesting places and did interesting things like staying in tents and getting close to wild animals on a safari in Tanzania, paragliding off a mountain in Switzerland, taking a helicopter to the top of the Franz Josef Glacier in New Zealand, as well as hiking and swimming with wildlife in the Galapagos Islands.

At the last stage of Alzheimer’s, Kate has lost all of her rational thought. There are many things we can’t do anymore, so we depend on her intuitive thought to find pleasure, and that still works for us.

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Our Lives After Kate’s Diagnosis, Part 7: Living With Alzheimer’s at Stage 7

The most dramatic changes in our lives occurred following Kate’s hospitalization with COVID. Since then, she has required total care with all of her daily activities. We added in-home care eight hours a day, seven days a week. Five months after her  hospitalization, we moved to Still Hopes Episcopal Retirement Community. That was a wise move.

While there are many things we can’t do now, we still enjoy music. Most of that occurs in our apartment where we play YouTube music videos day and night. Our favorites are Andre Rieu’s orchestra and soloists, Andrea Bocelli, Daniel O’Donnell, and the Maestro and the European Pop Orchestra. We watch many others as well. Many are singers and songs that were popular during our teens and early years of our adulthood.

We get out as much as we can. Every afternoon we go to one of the cafés downstairs and follow that with dinner in the main dining room. We also have dinner in another café downstairs on Sunday and Monday nights when the dining room is closed. Still Hopes also has quite a few musical events. We take in as many as we can.

For me, the best parts of every day are “Happy Moments” when Kate is cheerful and talkative. Those are usually in the morning and evening when Kate and I are alone together.  I love talking with her even though I only understand a few words that sneak through her gibberish. I also love it when she has these moments with other residents and staff when we go out in the afternoon for yogurt or ice cream.

So, even at this stage of her Alzheimer’s, we have found ways to enjoy life and each other. In my next post or two, I will explain what has enabled us to do that.

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Our Lives After Kate’s Diagnosis, Part 6: Adapting to Isolation After COVID

In an earlier post, I talked about two ways that COVID changed our lives. One was isolating us after nine years of active lives that kept us enjoying life and each other. The other was Sarah’s hospitalization with COVID. Each of these required us to focus on new ways to enjoy life.

Some of the things we did prior to the pandemic were things that we could do afterward as well. That included our collection of family photobooks that contain a variety of historical family information and photos.

Of course, music played a major role in our lives but in different ways. We couldn’t attend concerts, so we added another way to enjoy music. We started watching music videos on YouTube. That gave us a wide variety of music we could tap into at any time of day.

Before the pandemic, Kate’s only self-initiated activity was working jigsaw puzzles on her iPad 6-8 hours a day. She lost that ability during the first week of the pandemic. That put more pressure on me to entertain her.

One of the ways I did that was to act as a docent in our home. There were stories that went along with many of the pieces of furniture as well as paintings and knick-knacks. At that stage of Alzheimer’s, she would quickly forget what I told her, so that made it easy to tell her the same stories over and over.

It was during the pandemic that Kate experienced what is common among people with dementia. She wanted to go home. The obvious answer to this is to say, “We are at home”. I knew it made no sense to contradict her; she didn’t realize she was at home. I would say, “Well, let’s do that.” Then we went to the car and drove around for 15-30 minutes and came back home. Some days, we did that as many as three times. It never failed. Each time we arrived home, she was pleased to be there, at least until the next time.

Activities like these kept us going until both of us got COVID in November, 2020. More about that in a later post.

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Our Lives After Kate’s Diagnosis

Part 5: Major Changes

Apart from the changes in our lives that I mentioned in my previous post, there have been two other changes that have had a greater impact on us. They both involved COVID. Before it came onto the scene around March 2020, our lives were already shrinking, but we had no idea how the Pandemic would affect our lives.

Prior to Pandemic, we spent an hour or hour and a half every morning at Panera and about the same amount of time at the café at Barnes and Noble every afternoon. Coupled with eating out for lunch and dinner, we were away from home a large part of every day.

COVID brought that to a halt. Suddenly, we were trapped in our home without the social contact we had enjoyed for so long, but that wasn’t all the damage COVID left for us. The biggest hit occurred when Kate and I had COVID almost eight months later when it seemed safer to get out. My case was mild and ended quickly, but she was hospitalized for eight days. That changed her life forever. It wasn’t COVID alone that hurt us. The whole experience was traumatizing for her.

She was frightened by the ambulance attendants who were naturally strangers to her. As they took her out the front door to the ambulance, she was screaming, “Help me! Help me! Somebody help me!. To her, it must have seemed as though she were being kidnapped. I was the only one she knew, but the hospital did not allow visitors at the time.

She was without me for eight days. She didn’t know anything about COVID or that she was sick. All she knew was that strangers had taken her out of comfort zone, and in the hospital they were doing things she didn’t understand and didn’t like. The impact on her was so great that she didn’t want to be touched when she got home, and we had to do the same kind of things they had done in the hospital to take care of her daily needs.

Before COVID and her hospitalization, Kate was beginning to lose her mobility and was in the early stage of aphasia. COVID made them a permanent part of her life. For five months, we began to adapt to a new world in our home. Then we moved to Still Hopes Episcopal Retirement Community where we live today. We have established a new routine that is significantly more restricted than before, but we are living joyfully despite the combination of Alzheimer’s, COVID, and a stroke Kate experienced a year after our move.

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Another Anniversary

Sarah and I celebrate another anniversary today. No, it’s not our wedding anniversary. That comes up in May. It’s not the anniversary of our first date. We celebrated that in December. The one we celebrate today is the fifteenth anniversary of Sarah’s diagnosis with Alzheimer’s.

We aren’t celebrating the fact that she got the diagnosis. It’s the fact that although our lives have changed dramatically since then, we are still enjoying life and each other. From the start, that was our goal, but we never imagined that we would be able to say that fifteen years later. We were simply doing the best we could as she was losing her memory. Along with that came her inability to do many of the things she had done before.

I am copying below my blog post on the first anniversary of her diagnosis. It deals with the changes that were occurring at that time.

January 21, 2012 by Richard Creighton

One Year Since Diagnosis

One year ago today, we met with Dr. Reasoner to receive the news that Kate’s results showed she has AD. During that year I have noted apparent declines in her memory, sometimes not quite sure whether the changes were real or not because they can be so subtle and similar to what we all do. At this point, there is no doubt that she has declined in a perceptible way.

A week ago last night we got back from our trip to Africa (Tanzania) with OAT. It was a great trip that we both enjoyed far more than anticipated. On the other hand, I felt as though I had to be watching and helping her every step of the way. I am having to assume more and more responsibility for everything.

She continues to get along well in normal interactions with people. I don’t think anyone on the trip would suspect her condition. Neither do I think our children or close friends suspect. I do sometimes wonder about her best friend, because she and Kate have had so many opportunities to talk and socialize together.

The most distressing thing to me is that Kate is so frustrated over her inability to do many things that she would have been able to do before. In the last 2 days she has commented that it’s the little things that bother her the most. From my perspective that would include things like remembering how to charge her cell phone or how to deal with a technician on the help line. She has great difficulty following a set of instructions. They simply overwhelm her. In our personal conversations when she indicates a problem and I automatically try to explain, she stops me because she can’tunderstand.

The whole situation makes me recall times when I hear people say something like, “Well, at least she doesn’t know.” I heard this when my mother was in the early stages. Kate is keenly aware that her memory is declining. She sees how much of her time is spent looking for simple things like car keys, her purse, etc.

It has gotten so bad that I feel I can’t depend on her to do anything. I either have to do it myself, or follow her to see that it is done. While on the trip, she picked out a bag to bring back to Doris. We bought it along with a couple of other things. Then after eating lunch (this was in our lodge) she went back into the gift shop. I saw her looking at the bags again and asked what she was looking for. She told me she was looking for a bag for Doris. She had not remembered buying the first one only 45 minutes to an hour earlier.

She is clearly discouraged. She is not sleeping well. I am not sure, however, how much is a result of jet lag and how much is anxiety over her condition. I think it is some combination of both.

Over the past year, I have cited specific instances of her memory failure. I suspect I may do less of that as so much occurs that I can’t recall the instances without writing things down at the time, and I find that impossible.

We enjoyed the Africa trip so much and are looking at possible trips to New Zealand, the Galapagos, Russia, and China. I fear, however, that our travels may be heavily influenced by her condition. Right now, for example, I am thinking of taking an OAT trip to New Zealand next January (2013), but I wonder whether or not that will be a good idea. I do believe we could do a cruise, but half of the time is spent on the water. I will wait until later in the year to see how things are going. I need to be honest about my own anxieties. This is a very trying time for me. My business is so bad that I had to let Regina go before Christmas. She had been with me for 28 years. Now I am wondering how long I can keep the doors open. Dad requires attention. This week he spent 2 days in the hospital. I am spending less time in the office. I need to spend more time with Kate. It is a difficult time. I am not sleeping as well as I used to.

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Remembering the Diagnosis: January 21, 2011

Today is the 13th anniversary of Kate’s diagnosis with Alzheimer’s. That was a life-changing event. At the time we recognized that, but now we know and understand it far better. We don’t celebrate the day itself. We celebrate the fact that she is still with me and that we have lived joyfully. I say that even though her Alzheimer’s, her 8-day stay in the hospital for Covid in November 2020, and her stroke almost two years ago have had a significant impact on our daily lives. Today, our world is much smaller than it was before.

Until the pandemic, we were very socially active. When Covid entered the scene, we were suddenly left to entertain and feed ourselves at home. In November 2020, we both had Covid. Kate spent eight days in the hospital. She has required total care since she returned home. That means we dress her, bathe her, get her in and out of bed with a lift, and use a wheelchair when we leave the apartment. Our social life is now limited primarily to our getting ice cream at a café downstairs each afternoon followed by dinner in the dining room at night.

So, how can I say that we live joyfully? I have two answers to that question. First, Kate  has not experienced most of the problems that other people face. Second, we have found ways to enjoy life and each other despite the changes demanded by Alzheimer’s. We have binged on things we enjoyed before the diagnosis. That included attending musical and theatrical events as much as possible and eating out for lunch and dinner every day for 8-9 years before the pandemic. As a result, we have never been socially isolated.

Because we get out as much as we can, we have a large network of supporters. That is especially true among the residents and staff of the retirement community in which we live, but it also comes through the readers of this blog and our contact through social media.

There is no way to predict how long the good times will last. As I have reported in other posts, we have experienced some new challenges recently. When we began this journey thirteen years ago, we decided to enjoy life and each other for as long as we could. That has served us well, and we will continue to do that and be grateful for the joyful moments we share daily.

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Thirty-four Years of Caregiving

Thirty-four years ago this past Saturday, November 11, 1989, Kate’s father had a massive stroke. It had been preceded by several TIAs, but his stroke had a major impact on his life and the lives of his family.

Until that time, Kate and I hadn’t given much thought to caregiving for our parents. We were empty nesters focusing on making the most of our time together while completing the remaining years before retirement. We never stopped doing that; however, we took on a new role as caregivers.

It began with her father’s stroke. He died four months later. During and after that, we found that her mother also needed care. Several years later, she experienced a stroke as well and developed vascular dementia. Ultimately, we brought her to live with us for 5 ½ years with 24/7 in-home care before she died in 2005.

In the mid-90s, my parents moved to live near us. I didn’t know at the time, but my mother had an undiagnosed form of dementia. She died in 2002, but my father had a significant other who developed vascular dementia. We helped him take care of her until her death in 2009. That same year, my father had a stroke, and in 2011, Kate was diagnosed with Alzheimers.

My father died in 2013. Since then, I have been able to give my full attention to Kate who is in the last stage of Alzheimer’s.

Caregiving always comes with a variety of challenges, but it can also have its rewards. The most important reward for me has been the opportunity to walk with loved ones through the last chapter of their lives. They did a lot for me, it has been rewarding to be able to do something in return.

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Update on In-Home Care for Kate

Six years ago this coming September, I engaged in-home care for Kate. At that point, all I needed was someone to be with her while I went to the Y and ran errands. It was prior to my feeling a real need for help, but I was becoming uneasy about leaving her alone. At the time, I referred to the caregivers as sitters. All they had to do was spend time with Kate. They didn’t have to dress her, prepare meals for her, or take her places.

Looking back, I view that as the “honeymoon stage” of our in-home care. After a month or so, we settled into a routine with two different people. One came on Mondays for four hours. The other came on Wednesdays and Fridays for four hours. This went well for three years although we made a few changes in the person coming to the house on Mondays. Fortunately, we had the same person for Wednesdays and Fridays for more than three years.

Then came Covid in November 2020. Kate’s Alzheimer’s had been progressing more rapidly in the previous two years. She was in the early stages of aphasia and was developing mobility problems. Her hospitalization for eight days for Covid was traumatic for her. Since then, she has required total care.

The honeymoon with in-home care was over. Finding caregivers was also more challenging because of the pandemic. Apart from the pandemic, fewer caregivers are willing to accept people who require total care. Thus finding and keeping caregivers has been a problem since then.

It is especially difficult to find someone to work eight hours a day five days a week, but we found one person who was with us until May 2022. We were able to replace her with someone who was with us until this week when she decided to leave because of her back problems. That was a low blow to me. She was the most caring and compassionate caregiver we have had. She and Kate got along well, something I consider of paramount importance.

So, we are going through an adjustment. We have a new person who comes for eight hours a day on Monday, Tuesday, and Wednesday and another who comes on Thursday and Friday. We are now in our second week with them, and I am encouraged that they will work out. They are both good but have complementary skills. The MTW person has CNA skills that are among the best of anyone we’ve had previously and she has a caring personality. She does have a minor back problem, so we have elevated the bed another six inches, and I am playing a greater role in the heavy lifting. She also appears to be someone who is easy to work with. She has lots of ideas about how care should be provided, but she is also sensitive to the routine we have established.

Our Thursday/Friday person is very cheerful with a very warm and caring personality. She and Kate connected right away. She even stopped by to chat with Kate while we were having ice cream Saturday afternoon with one of our regular weekend caregivers.

Despite my optimism, having new people for five days a week does mean another adjustment for me. That will mean more work for me to familiarize them with our needs and priorities, but we should soon establish a new routine.

Although I wish I could count on having a regular group of caregivers for a longer period of time, we are fortunate to have had three caregivers who were with us for more than a year. At the moment, only one of them is still with us. She has been coming every other weekend for a year and seven months.

Change always requires adjustments, but it often comes with benefits. That is what I am hoping for with this one. Right now, I am optimistic that Kate’s care will match or exceed what we had before.

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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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A Brief Update

Once again, I find that I am behind on another blog post. On top of my usual excuses is that I’ve had computer problems that were finally solved yesterday. During the past two weeks, my computer wouldn’t connect to our Wi-Fi network or any other one. In the meantime, I’ve been occupied with Kate (many good moments) and other personal issues like an infection in one of my toes and pain on the right side of my other foot. Those involved several doctor’s visits that have solved most of the problems.

The best news is that Kate’s improvement has continued over the past few months. That has given us more quality time together which has boosted my spirits greatly. I’ve been particularly pleased that our evenings are once again very special times. Our love for each other is more consistently evident now than in quite a long time.

I continue to be pleased with our new primary caregiver (8 hours daily from Monday through Friday). I feel less stressed now than I did a few months ago, and my blood pressure is staying at normal levels. Prior to replacing the previous primary caregiver, my blood pressure was bouncing periodically to higher levels than those to which I had been accustomed.

I feel the need to stress again that I don’t mean that her Alzheimer’s is any better than before, only that she is more comfortable and at ease, than she had been since her hospitalization with Covid almost two years ago in November 2020. That, our move a few months later, and then a stroke were all significant events that brought about dramatic changes in our lives. It hasn’t been easy. Some of those changes have been permanent, for example, Kate now requires total care with all her ADLs (activities of daily living). Our world is much smaller now; however, we continued to enjoy life and each other. And I am grateful.