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Good Things

Two thousand twenty-four is off to a good start. Our caregiver issue is almost solved. The first month after losing our regular Monday-Friday caregiver, we had 29 different caregivers. After ten weeks, the total is 40. That means we’ve had only 11 different caregivers in the past 6 weeks. Not only that, but the caregiver who had originally said she could work every Monday, Wednesday, and Friday had a change in her schedule that allows her to work every Thursday as well. Now, we only have to find a person to take care of Tuesday. Until then, we have different people filling in. Fortunately, most of them have been here in the past. This improvement reduces most of my stress.

More importantly, Kate has shown more improvement in recent weeks. As I have said in previous posts, this does not mean an improvement in her Alzheimer’s. It does, however, indicate that she is more at ease which is expressed in her smiles and her speech. It is still difficult to understand her, but her speech indicates that she is happy. From my perspective, that is what is most important.

I am especially pleased that our relationship remains strong. That isn’t reflected in every moment of every day. She is still very quiet on most mornings. On some mornings, she doesn’t express any recognition or interest in me. Other mornings, she does.

She expresses her feelings for me most often when I return home after being gone for a while. At other times, it is in the evening after she is in bed, and the caregiver has left. Last night was one of those.

She had already had a talkative afternoon. When we have occasions like that I generally expect that it won’t continue as we move to other activities. That was no problem last night, and we had a conversation that lasted at least an hour, perhaps a little longer. Sometimes she seems a little hyper when she is talking. This time was different. She spoke slowly and responded to what I had said. Sometimes she asked me a question, and I gave an answer that I hoped would be appropriate for the question she had asked.

During our conversation, she smiled a lot and laughed a good bit as well. It is hard for me to put our feelings into words. The best I can do is to say that we were both perfectly at ease and engaged in a conversation that meant a lot to each of us. I might say it was a beautiful bond of love that transcended her inability to say much that I could understand. I could almost imagine that it was one of those early days when we were dating. It was like each of us was enthralled by what the other was saying. She was still in late-stage Alzheimer’s that requires total care for all of her activities of daily living. For those moments, however, neither of us was mindful of that. We were, and still are, a couple in love, and Alzheimer’s has not been able to take that away from us.

Moments like this will not last forever. For now, we will enjoy every Happy Moment that comes our way.

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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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Two More Issues

As I indicated in my previous post, “Not everything goes as well as I would like”. On Tuesday, I was reminded of that again. We got off to a good start when she awoke early and seemed to be in a good mood. Over the course of the morning, however, she experienced what I described as a pain in her right leg around the knee that was affected by her stroke almost two years ago. She has not been able to straighten it since then.

I am used to the fact that she periodically lets out a scream or yell which is an unmistakable sign of pain. Fortunately, the pain appears to go away almost immediately, and she is perfectly fine. That morning was different. The pain seemed to go away after she screamed; however, her screams were repeated more than five times over a period of a couple of hours. She was fine after that.

When I returned home after lunch, she was happy to see me. She got along well until it was about time for us to go out for our daily ice cream and then dinner. She had been happy and more talkative than usual, but she began to talk more rapidly. Her smiles turned to expressions of agitation that conveyed she was bothered by something.

I put on some music that is usually calming for her. It didn’t work quickly, and I suggested to the caregiver that we give her some ice cream. We did, and it worked. A few moments later, we left for our normal trip downstairs for ice cream. I decided if any signs of agitation reappeared, we would come back to the apartment. Fortunately, she was fine after that. One of our residents stopped by to speak to her. She is always looking for a smile or verbal response from Kate. Most of the time, she is disappointed, but not that time. The result was that she stayed and talked with us 20-30 minutes before it was time for us to leave for dinner.

I was relieved that we didn’t have any more surprises, but I do wonder if these recent experiences are just isolated issues or whether we might see more things like this in the days ahead. Like so many other things, time will tell.

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Not Everything Goes As Well As I would Like

My previous posts about our caregiver situation are signs that not everything goes the way I would like it. The fact that we have had 39 different caregivers since our previous Monday through Friday caregiver had to resign for health reasons is an indicator of a serious problem. Fortunately, that continues to get better. We now have someone who is with us each weekday except Tuesday. We are still looking for someone for that day.

Kate continues to have “Happy Moments” despite her having to adapt to the different ways that each new person handles the various aspects of caregiving. One of those occurred recently when I arrived home after lunch. She was glad to see me. I spent quite a while with her talking about her family. Music was playing in the background, and I started singing or humming to her. She was enjoying herself so much that I took a dozen or more videos of her. Each one is a treasure that I have enjoyed sharing with family and friends.

Later in the day and the next morning, I was reminded that more unpleasant things can also happen. Shortly after we ordered our dinner that evening, she became very agitated. At first, I thought she was responding to a pain in her right knee or leg. That is the one that was affected by the stroke she had almost two years ago. She hasn’t been able to straighten that leg since then. The caregivers and I are most sensitive to that. It makes it hard to dress and undress her as well as getting her into and out of her bed and into a chair. The problem for Kate is that she experiences moments of pain. We always know about it because she lets out a loud scream or yell. It is usually over as quickly as it comes, but this time she remained agitated, so we asked the server to prepare our meals for carryout and went back to our apartment. It wasn’t long before she was calm again, but this was unusual. It was the first time I felt the need to leave any public place because of a problem like this.

The next morning she had a panic attack. This is not the first in recent months and followed the pattern of at least two others. She seemed to be frightened. That fright was expressed in her facial expressions as well as a vocal response I couldn’t understand. She was hot, and her skin was clammy. I did what I had done before. I turned on some music that I know she likes. In this case, it was “Edelweiss. I got in bed beside her and sang along with the music. I played it several times in succession and then drifted to “True Love.” In a short time, she was calm again.

Considering everything, we have lived joyfully since her diagnosis in 2011, but we do have our “ups and downs”.

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Making a Good Recovery

Most of my posts reflect a positive attitude about “Living with Alzheimer’s.” My self-perception is that I am an even-tempered person who is upbeat and calm even during life’s ups and downs; however, I have recently focused on the unusually high degree of stress I’ve experienced since the loss of Kate’s primary caregiver on November 9. Four weeks later, we had 29 different caregivers. It’s now been eight weeks, and the total number of different caregivers is 36. That is an average of almost five new caregivers a week. In addition, there have only been 11 out of 49 days when we had just one caregiver for eight hours. One weekend, we had 4 caregivers on Saturday and another 3 on Sunday. As a result, I have not been as upbeat as I usually am.

The good news is that I am making a good recovery. Part of the reason is that the number of new caregivers in a given week has declined significantly. Even more important is what I reported in my last post. One of the new caregivers has chosen to help me by volunteering to come three days a week (Monday, Wednesday, and Friday) during January and February. As I indicated in that post, that removed a major source of frustration, but there is more.

Her first day was January 1. Several weeks had passed since she had been with us, and I had forgotten how much I liked her. Yesterday was her second day, and I feel even better. She seems to be better than other caregivers we have had over the past three years. She has the basic CNA (certified nursing assistant) skills and a caring and compassionate personality that I value. She is also pleasant to have around.

To top it off, Tuesday we had another new caregiver (number 36 since November 9) who was excellent, and she will be back tomorrow. I don’t know about her long-term schedule, but it would be wonderful if she could come on Tuesday and Thursday when our Monday, Wednesday, Friday person is not available. It may not be quite as good as having one person five days a week, but it comes very close. Everything may turn out to be even better than it was before the loss of our previous person. I am hopeful.

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2024: Off to a Good Start

As my regular readers know, the last part of 2023 was the most stressful time I have experienced since Kate’s diagnosis on January 21, 2011. On November 9, the caregiver who had been with us since the first of August left us because of health problems of her own. Over the next four weeks, I had 29 different caregivers. That was the only time I had experienced that during the six years I have had in-home care for Kate.

The last two weeks of December were better. At year’s end, we had had 35 different caregivers since November 9. We began 2024 with a significant improvement. We have a person who has agreed to be here every Monday, Wednesday, and Friday through the entire months of January and February and, hopefully, for the rest of the year.

She is someone I liked the first time she came a few weeks ago. I was excited when I saw that she was on the schedule. When she arrived, I thanked her for her commitment. I was stunned and touched when she told me that she made her decision because she felt bad about my having so many different people and knew that was difficult for me.

The day went very well. I was especially impressed by the fact that she remembered several things that I had told her were important to me. Not everything had gone as well as either of us had wanted on her first visit almost two months ago, but she arrived determined that everything would go smoothly. It did.

It is still too early for me to get overly excited but it looks like we may have found someone who will be even better than the previous ones who have been with us for more than a few months.

I should add that I recognized long ago that my active involvement with Kate’s care is not something that not all caregivers appreciate. It means they are under my watchful eye, and I often have suggestions regarding her care. I have learned that most husbands in my position leave quickly when the caregiver arrives and return just in time for her to leave. In my case, I assist each caregiver with the process of getting Kate dressed, out of bed with a lift, and getting her something to eat before I leave for lunch. I am rarely gone for more than three hours of an 8-hour shift.


as we begin the new year, I feel optimistic that we will find someone else to fill in on Tuesday and Thursday. That means I will have four caregivers to cover all seven days of the week instead of the three I had before; however, that should be a piece of cake after the events of the past two months with almost forty different caregivers. Things are looking up.