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Dementia caregivers face a lot of challenges as their loved ones lose their rational thought, so it is helpful to learn as much as possible about the disease and how to care for their loved ones with dementia. Fortunately, there is an abundance of available information.

My first step was to go to the Alzheimer’s Association website, Alz.org. It contains a lot of information and resources to help both loved ones and caregivers. They also have a number of online groups you can join. In those groups, you will find people who are asking how to deal with specific problems they face and others who have previously dealt with similar problems and have recommendations you might use.

Facebook also has several dementia groups. One of those is “Memory People”. It was started by Rick Philips who has dementia. The last time I checked, it had over 20,000 members. That means you are likely to find people who have had problems like yours.

There are also many books written by caregivers, professionals in the field of dementia, and a few by people who have been diagnosed with the disease. I read more than thirty such books and benefited greatly from their stories.

An excellent online source of books about dementia is AlzAuthors.com. It’s an association of more than 400 people who write about dementia in books and blogs. They also offer podcasts on specific issues related to dementia. As a blogger, I was invited to join. That opened the door to many other people whose stories helped me.

One of the benefits of being more informed about dementia and caregiving is that it can help caregivers accept the consequences of dementia, so they can focus their energy on supporting the happiness and safety of the loved ones they care for.

That may seem obvious, but it’s common for caregivers to be frustrated when their loved ones don’t remember things or mishandle things they could have easily done in the past. It is helpful if the caregiver does not display frustration or say things like, “I told you that this morning. Your appointment is at 3:30.” That is intuitive thought responding to the frustration. Rational thought can lead to other options. A better response would be to say, “It’s at 3:30.” And be prepared to say it again, and again, and again.

That leads to another tip for next time. See you then.

Alzheimer’s has robbed us of many things, but Kate’s smile, Happy Moments, and the love we share are still with us.

Because we are with her so much, her primary caregiver and I get to experience the Happy Moments more than anyone else. Most of them occur in our apartment, a comfort zone for Kate.

The weekend was filled with Happy Moments. Saturday afternoon was special. That’s when I took these videos at Lowry’s, a Still Hopes café where we come after 3:30 every afternoon to get yogurt for Kate and visit with other residents. Everyone who stopped by saw more of the joy we share at home than they usually see. How fortunate we are, and I am very grateful.

In previous posts, I’ve said that our approach to Alzheimer’s has helped us live well, even joyfully. If that is so, it seems reasonable to ask if it could do the same for others.

I can answer that question, but first, I want to make clear what I mean by our approach. I’m not referring to the specific things that we did – binging on music, eating out, and traveling to exciting places. The approach I mean is to accept Alzheimer’s and the loss of rational thought coupled with a heavy emphasis on intuitive thought. We didn’t realize it at the beginning, but most of the activities we chose to enjoy life were ones Kate could enjoy for a long time. Not only that, but I could enjoy them with her.

So, is it possible that other Alzheimer’s couples facing the disease could live as well as we have? My short answer is “Yes, it is definitely possible. In fact, it’s already happening. One example is that of Tony Copeland-Parker and his wife, Catherine (Cat). Tony wrote the book “Running All Over the World”. Their story follows their lives after Cat was diagnosed with early-onset Alzheimer’s. They took early retirement at UPS, sold their house, and began years of marathoning in all fifty states and seven continents. They did that for years until the late stage of Alzheimer’s brought that to an end.

Another is Helene Berger and her husband, Ady. Helene decided to shift her focus from managing a disease to actively focusing on daily happiness.

The result was constant mental stimulation, absolute kindness, and a conflict-free environment that led to what physicians considered an unprecedented stabilization. In his final years, Ady became known in his community as “the man with the radiant smile,” returning to the piano, drawing, and greeting friends by name. Helene tells their story in her book CHOOSING JOY. There are many similarities between Berger’s care for her husband and my care for Kate. Both of us have placed emphasis on keeping our spouses happy.

Judy Cornish can tell other stories like these. She is the author of THE DEMENTIA HANDBOOK. She has made a career out of helping people live well with dementia. She has numerous examples of others, besides Kate and me, who have followed her advice and have been able to live well with dementia.

Thus, I have no doubts that it is possible for others to live well if they followed our approach. The key word, however, is “possible”. Kate and I have had a number of advantages that have made a difference for us that others might not have. I’ll explain in a later post.

Five years ago this month, Kate had Covid and spent eight days in the hospital. That was the catalyst that pushed her into Stage 7 Alzheimer’s, the last stage. Since then, she has required total care. We feed her, bathe her, dress and change her, and get her in and out of bed and wheelchair with a lift. None of us would like to be in her position. The fantastic thing is that she is happy.

I often comment about the “Happy Moments” she experiences. These are times when she seems to be at ease. She smiles. She laughs. She talks, although we can’t understand most of what she says because of her aphasia.

She has moments like this every day. I refer to them as “moments” because they do not occur throughout the day. Her day is also filled with what I call “Neutral Moments” when she is neither happy nor sad.

Once in a while, her days are filled with “Happy Moments” from morning to night. On days like that, she is cheerful when she begins the day and retains her cheerful spirit as we put her to bed.

Yesterday was one of those days. In fact, I believe it was the best day I have seen since before she had Covid. It was thrilling for me and for many others who hadn’t seen her like this before.

I don’t predict her behavior, so I don’t know if we will have a repeat of yesterday. I do know that she’s been getting better for the past two or three years. That is especially true for the past month. I also know that one day she will take a downward turn. In the meantime, I will treasure every moment or day I have with her.

Life is full of surprises. I find that is especially true with Kate while “Living with Alzheimer’s”. Even more surprising is that many of the surprises during Stage 7 (the last stage) have been happy ones. One of those occurred yesterday.

I often comment about our “Happy Moments” that occur when she is cheerful. I call them moments because they happen off and on, not all day. Yesterday was special. It began just before 8:00 am when I heard her say something. I went to the bedroom to check on her and found that her eyes were open. As I approached her, she gave me a big smile, clearly recognizing me —something that doesn’t happen most mornings. We chatted briefly before I went to the kitchen to get her morning meds.

After giving her the meds, she was still in a very cheerful mood. I took that opportunity to hop into bed beside her. That began an hour-and-a-half conversation. As always, I understood little of what she said, but it was clear that she was happy. She laughed as she told me whatever was on her mind. It was a great way to begin the day.

She was still happy when I left for my weekly Rotary meeting. Upon returning, she greeted me with a beautiful smile. Later, when we went out for ice cream, she was still cheerful and surprised two residents who come by to see her almost every afternoon. Both of them got to see her smiling and talking. They look for that every day, but it only happens once in a while.

We closed the day with a very special time after the caregiver left at 7:00. She didn’t say much. I did most of the talking. I recounted a number of special times together going back to our dating, marriage, and having children. She continued smiling, and we both drifted off to sleep with music playing in the background.

It was the kind of day we could never have imagined following her diagnosis. We are fortunate and very grateful to enjoy life and each other so late in our journey with Alzheimer’s.

Why have we gotten along so well?

After Kate’s diagnosis on January 21, 2011, we talked a lot about how we wanted to respond. We decided to simply enjoy life and each other as long as we could. At the time, we were uncertain how long that would be. We just began living in the moment, and that has paid great dividends.

Looking back, I believe there are two major reasons for our success. The first is that we accepted the losses we have encountered (and still encounter) and focus on what remains.

The second reason is that when we chose to “enjoy life and each other,” it led to activities that Kate could appreciate. Progressively, she lost many abilities. We let go of the activities that required those abilities and focused on things she could still enjoy. For almost five years, she has been in the last stage of Alzheimer’s (Stage 7), but we are still able to find ways to enjoy life and each other.

That’s because the things we chose to enjoy have been things like music that she can appreciate intuitively via her senses. We have binged on music since her diagnosis. The other is that we have remained as socially active as possible. I should also add that I have smothered her with affection. She knows she is loved.

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Last night, Sarah surprised me with a “Happy Moment” that I won’t soon forget. We were in bed after the caregiver left. We typically spend a while watching YouTube videos, but I decided to try something different. I put on a DVD of ”The Sound of Music.”

I was hesitant about doing this because she hasn’t enjoyed watching TV for several years. Even when I have YouTube videos running, she doesn’t seem to watch. She just listens.

To help her follow along, I told her about the characters and what was happening. I was surprised to see that she seemed to follow and enjoy the movie. Although I couldn’t understand most of what she said, her smiles, laughter, and other audible reactions conveyed her feelings.

As it came time for us to call it a night, I asked if she would like to finish the movie “tomorrow” and listen to some of our audio music until we fell asleep. She rarely gives an answer to such questions, but she moved her head to say “No” and smiled when I said I would leave the movie on.

Ultimately, I did turn off the movie and put on some music. I hadn’t seen her engaged in anything on television in a long time. It was a beautiful way to end what was already another nice day with the love of my life.

I participate in three different support groups for caregivers. In virtually every one of the meetings, people talk about the various things they find stressful.

Most of the conversations in the groups with which I am involved deal with the frustrations caused by their loved one’s behavior. One of the most common is repeating the same questions over and over. Another is the loved ones’ denial of the diagnosis and the refusal to cooperate when the time comes to issues like giving up the keys to the car, needing a walker, or willingness to accept a caregiver. The frequency with which the others are mentioned varies a good bit with the individual situations and the stage of the dementia.

At present, I believe my greatest source of stress relates to Kate’s in-home care. I emphasize “present time” because I depend more heavily on paid help now that Kate requires total care. When caregivers are sick or have other personal issues that prevent them from being on the job, it is stressful for me.

These situations have always occurred periodically since I first engaged paid help six years ago in September 2017. In the beginning, this was a minor issue. For the first three years and two months, the caregivers’ responsibility was simply to be a companion for Kate, and we had help only three days a week for four hours a day. If a caregiver was late or unable to come, it was not a big problem.

Life is very different now. For almost three years, Kate has required Total Care. Without help, I can’t get her dressed, out of bed, and into her wheelchair. I need help more than ever.

That leads me to another problem – getting someone who can come regularly. For the past two-and-a-half years, we have been fortunate to have two different people who were with us for eight hours a day Monday through Friday. One of them was with us for a year and a half. The other left after a year. To cover the weekends, We have had two people who alternate weekends. One of those has been with us two years this month, the other person has been with us for close to a year.

Four weeks ago, our latest Monday through Friday caregiver developed a health issue of her own and had to resign. The agency that provides our caregivers has had trouble finding people who would commit to a full 8-hour shift. As a result, they have divided the day into two shifts of 3-5 hours. Since then, we have had 28 new caregivers. On top of that, one of my regular weekend people called two Saturdays ago to say she couldn’t come. Another new person came to take her place. That makes 29 new people in four weeks.

I am working hard to maintain a cool head, but I have to admit that it has been quite stressful.

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.