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My Experience with Paid Caregivers: Part 2

In my previous post, I outlined some of the unanticipated things that go along with having paid caregivers. I made the point that family caregivers remain managers of their loved one’s care. These things include dealing with insurance companies, selecting an agency that provides in-home care, (many insurance companies only reimburse fees that come through an agency), and handling the finances. As I confessed, they produced a few new sources of stress.

Today’s post looks at managing the caregivers themselves. That’s something else about which I hadn’t given much thought before our first caregiver arrived. I feel sure that I was heavily influenced by our experience with Kate’s mother in 2000 when we arranged 24/7 care for her in our home. That was a very good experience. The agency quickly arranged for 5-7 people to cover all the shifts. Almost every one of them was with us until her mother’s death over five years later. They were a dependable and competent group that could handle the tasks required for someone who needed “total care.”

When I first engaged caregivers for Kate, I didn’t think much about any special skills for her caregivers. I was simply looking for someone who could be with her while I was away for a few hours. I wanted someone who would be a good companion for Kate. After trying several in the first few weeks, we ended up with two who were with us for an extended time, one for more than four years.

The only problem I encountered was finding people who could establish a close relationship with Kate. I wanted someone she would look forward to seeing. The one who was with us for over four years was the best.

Before Kate had COVID, she was still mobile, able to occupy herself and take care of her personal needs. After her hospital experience, she required total care. That not only meant that I needed more hours of help. I needed caregivers with special training in caring for someone with her needs. That was a whole new ballgame. It’s been a year and five months since then and the management of caregivers has become a big part of my life and is often stressful. Here are some of the reasons.

Like other family caregivers, I value the time that I get away for lunch, meet with friends, or take care of routine tasks like grocery shopping. Some, like doctor’s appointments and my weekly Rotary meeting, involve a specific time, and I don’t like to be late. Inevitably, caregivers are sometimes late or have to cancel. That has presented a problem for me from the beginning. It has become a much bigger issue now that Kate needs more care, and there is a staff shortage.

On a number of occasions, our current agency has been unable to replace a caregiver who couldn’t come. Fortunately, our present agency has “floaters” on the grounds. These are caregivers whose job is to move from one client to another during the day to meet immediate, short-term needs like ours – helping me get Kate out of bed and back in bed that night. Between those times, I can care for her myself. Actually, I like that because her needs are minimal once she is up, and we get to spend quality time together. Even with the backup provided by floaters, I often need to change my plans for the day.

One of the biggest challenges (and another source of stress) is finding caregivers that are a good match for our needs. Kate now requires help with all of the “activities of daily living” (ADLs). If I want a caregiver who is trained for this responsibility, I need a CNA (Certified Nurse Assistant). Not all the caregivers at an agency have this certification, and not all CNAs are equally skilled; therefore, it often takes trial periods with different caregivers before settling into one or more who are best suited for our situation. It can be very stressful when I lose a caregiver and have to locate a replacement.

I’ve come to recognize that the qualities I want in Kate’s caregivers fall into two distinct categories that I consider of equal importance. The first, and more obvious, is the technical skills required to perform all of Kate’s ADLs (bathing, dressing, getting her out of bed, and feeding her. The second is to treat her with tender loving care (TLC) although I don’t expect them to treat her as I do. Our relationship as husband and wife is distinctly different. It is much easier for me to deliver TLC than any caregiver.

On the other hand, I have had only one or two caregivers who made any effort to provide the TLC that I would like. Typically, caregivers just sit in the same room with Kate without talking. That has bothered me because everyone, even people in the later stages of dementia, appreciates being treated like a person. I believe the root of the problem lies in the fact that Kate doesn’t talk much at all. This leads the caregivers to believe that she can’t understand and appreciate their effort to be friendly. I also believe that caregivers’ training provides much less attention to TLC than I think is necessary.

Kate’s early caregivers were better with TLC than those with her now. That was a time when Kate could carry on a conversation more easily. The only way a caregiver can do that now is to “get into her world.” That is not an easy thing to do, even for me. We’ve had only two caregivers (and they were filling in for one of our regulars) who could handle this. Each of them sang songs with/for Kate. Kate enjoyed it, and I was surprised when I came home and found them talking together.

I’ve learned that our situation is a bit unusual for most of our caregivers in that I am an active manager of Kate’s care. I am rarely gone for more than three hours of a 7-8 hour shift. The caregivers are accustomed to providing care without another family member’s presence. Usually, family caregivers leave right after they arrive and return at the time they are to leave. As a result, they can be annoyed and resent any involvement or suggestions from the family caregiver who spends more time at home. That has been a particular problem with one of my caregivers, and it has been very stressful.

That leads me to mention something else that can be a problem – the caregivers’ personality. I have also run into this, and it is with the same caregiver whose other caregiving responsibilities don’t include working in the presence of a family caregiver. I’d rather not go into the details, but this has become the biggest problem I have faced with any caregiver. I am working with the agency to replace her, but so far they have had no luck. Our agency is not alone. Caregivers are in high demand, and people who require total care are often the least preferred cases by the caregivers themselves.

In closing, I should say that I’ve been talking about paid caregivers for in-home care; however, what I have said is also true if one’s loved one is in some form of institutional care (hospital, rehab, memory care, adult daycare, or skilled nursing). Following a stroke, my dad was in skilled nursing for the last three and a half years of his life. I visited with him almost every day. From the first day until the last, I found it necessary to communicate aspects of his care that needed to be addressed. Twice, for example, I arrived to find him in a diabetic shock as a result of their continuing to give him insulin despite the fact that he had missed his lunch. The schedule called for him to get his insulin at 3:00. There was no requirement that he had to eat lunch.

All of this is to say that having paid caregivers is not without its own elements of stress. That often arises from the unanticipated consequences of being the family caregiver, the manager of the loved one who needs care. That said, I wouldn’t be able to handle Kate’s care without our paid caregivers, and I am very grateful to have them.

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An Amazing Day

Twelve weeks ago today, Kate suffered a mild stroke. I’m glad to say that she continues to recover although her speech has not returned to its pre-stroke level. She doesn’t speak much at all. When she does, it is not usually intelligible. Most of her speech is in stock phrases or words like “Fine, how are you?” or “Yes, I am.” Sometimes she speaks words in a whisper. That is especially true when we sing together. She really just mouths the words.

Not every day is alike. That has been true during the past three or four years as she moved to the late stages of Alzheimer’s. Throughout this time, I have written about many of our good days. This past Saturday was one of those. It was exciting for me, our caregiver, and the residents and staff who had contact with her.

Let me put that in perspective. Three years ago, I might have said it was a great day. That would probably have related to how cheerful she had been. She can no longer do many of the things she could do then; however, within the context of our lives now, yesterday was truly amazing. It wasn’t that she was just cheerful. She was more alert. Most importantly, she seemed at ease.

It started out much like other mornings. She was awake early but didn’t say a word and went back to sleep. I took my morning walk in the living room. When I finished, I noticed her eyes were open. I thought she might be “up” for the day, but she was tired and rested until the caregiver came shortly afternoon when I left for lunch.

When I returned home, Kate was in her recliner. I walked over and got on my knees beside her. She was alert and gave me a big smile. For the next thirty minutes, I talked to her. I told her how much I liked her smile and that everyone else does as well. I reminded her of our college days, our first date, and some of the experiences we had had during our marriage. She didn’t say much, but it was more than I have heard in months. She made it clear that she understood what I was saying. The caregiver and I were excited.

We went downstairs for our afternoon ice cream and ran into several residents who spoke to her. Each time, she responded with a smile and a word or two. The residents seemed excited as well. She continued to respond to both staff and residents at dinner. Some of them had never heard her speak.

After the caregiver left that night, we had the best evening we’ve had since before her stroke. We have been watching music videos on YouTube for four or five years now, so I’m always looking for new ones. I don’t know what prompted me, but I did a search for TCU’s school song, our alma mater. I found multiple variations sung at football games, a student jazz group, a chorus of music students, and the university band. We lay in bed singing along with them. We had a good time, and Kate laughed a good bit.

When I felt it was time to move on, I brought up a 2012 BBC PROMS concert that was a two-hour performance of Broadway music. We have watched it a number of times before, but Kate was especially attentive that night. For much of that time, my head was on her shoulder, and we held hands. It was a perfect end to an amazing day.

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My Experience with Paid Caregivers: Part 1

Sometimes being a #caregiver feels like I’m on a merry-go-round that goes faster and faster while I try and keep my balance. Life as mom’s caregiver has changed since she moved into Assisted Living, but the merry-go-round ride continues. https://advocateformomanddad.com/stop-the-merry-go-round/…

The quote above is from a tweet by Debra Hallisey, author of the blog, “Advocate for Mom and Dad.” It caught my attention because I was in the middle of drafting the following blog post that deals with a similar experience.

Typically, people who haven’t been caregivers of a loved one with dementia can’t imagine everything that is involved, but they do know or usually assume that it can be stressful. Thus, very early in our journey with Alzheimer’s, people began to ask me if I had “help” with Kate. For 6 years after her diagnosis, my answer was “no,” but I had thought about it long before then.

I was influenced by the experience with my dad who cared for my mom with dementia. My brother and I repeatedly tried to get him to bring in help, but he was very resistant. As Mom’s dementia progressed, I could see the toll it took on him.

I was determined not to let the same thing happen to me. We have long-term care insurance, and I planned to take advantage of it. The big question was when. The answer came in 2017 when I began to feel less comfortable leaving Kate alone. I had a regular Rotary meeting on Monday, and I was going to the YMCA on Monday, Wednesday, and Friday afternoons. I also needed time for a variety of other routine chores. I arranged for help before it was necessary. At that time, the caregivers’ responsibilities were minimal. I didn’t think of them as caregivers but as sitters or companions. All they had to do was be with Kate. 

Looking back, I believe engaging in help was a wise move. That’s been especially important since Kate’s experience with COVID-19 just before Thanksgiving in 2020. That coincided with her continued decline related to her Alzheimer’s. Suddenly, I really needed help. I arranged in-home care for 7-8 hours a day, 7 days a week starting the day she came home from the hospital. The caregivers were, and still are, doing things I wouldn’t be able to manage by myself.

While caregivers have minimized the stress that goes along with Alzheimer’s, in-home care hasn’t eliminated stress altogether. In fact, my stress now is greater than at any other time since Kate’s diagnosis. That is something I didn’t anticipate, and I don’t think I’m alone in that. It turns out that even with paid caregivers, family caregivers continue to play an essential role as managers of their loved one’s care. Quite often, that isn’t easy.  Let me explain.

To begin with, working with my insurance company and a home-care agency required more time than I expected. It was rare for me to get through to the insurance company on one call. After completing the appropriate forms, Kate had to go through an assessment interview to ensure that she was eligible under the terms of our policy. That was repeated twice a year for the first few years and is now an annual requirement.

Simultaneously, I had to select an agency. The social worker with Kate’s primary care physician helped me sort through that. Then, I had to initiate the paperwork to get the agency approved by the insurance company. That didn’t happen immediately.

Finally, it was time to select our caregivers. We went through several before settling on two, one for Monday and the other for Wednesday and Friday. Although I was uneasy about leaving her, I see now that I had a very good situation. That was because Kate didn’t need much care. It was also before the pandemic made it more difficult to find and retain caregivers.

I wanted caregivers who had the skills appropriate to Kate’s needs, someone that Kate liked, and who would stay with us for an extended period of time. During the first four years of in-home care, I was fortunate to have one caregiver who was with us the entire time. She has since taken another job. I hated to lose her because she was the caregiver with whom Kate was most comfortable. I don’t believe that was because she had been with us far longer than anyone else. She just had a personality that Kate and I both found appealing.

During the pandemic and after Kate had gotten COVID, I had to deal with an additional agency because our original one was unable to provide the necessary caregivers. Since then, we must have had more than ten different people who worked for varying lengths of time.

Adding another agency introduced a different problem. When I first met with the owner of the agency, we talked about the process of getting them approved by our insurance company. He said something that made me believe their agency would do all the paperwork. That sounded great to me, but it turned out that each of us misunderstood the other. Thus, they worked for us for several months without getting approved. I only knew because I wasn’t getting reimbursed. When I explained the situation to the agency, they said they would take care of it, but it didn’t happen. To make a long story short, I ultimately terminated the agency. Then I spent a month or more working with our insurance company to get our reimbursement. The good news is that I finally got it, but it took a lot more effort on my part than I think it should have.

The retirement community where we live now has its own home care agency. That has simplified things, especially managing the finances. They send our insurance company a summary of services at the end of each month. Two months later, I receive our reimbursement. Although the financial aspect of caregiving is working smoothly, there is still one other aspect of caregiving that presents a problem. That involves the caregivers themselves.

I’ll save that for another post, but my point remains the same: Family caregivers are always needed to manage and coordinate the services of paid professionals we engage for tasks that we can’t do ourselves. That management responsibility can also be stressful, even when professional services are delivered in facilities like assisted living, memory care, or skilled nursing.

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A Week to Celebrate

As I have recently conveyed, Kate’s stroke has had an impact on our daily lives over the past 8 weeks, but last week was a very good one. In fact, she had a few moments that were every bit as good as those she had before the stroke. That doesn’t mean she has fully recovered. On the other hand, she has experienced moments of cheerfulness and clarity of mind that I hadn’t seen in a while.

The first occurred while we were having ice cream Monday afternoon. A retired Methodist minister, Tom, dropped by our table. During our conversation, he told us a few funny stories of experiences he had during his ministry. One of them involved a baptism. Methodists don’t typically baptize by immersion, but a new member wanted that, so he contacted a local Baptist minister for help. He agreed to let them use their church.

When the day came, the family gathered at the church. I don’t recall the details, but Tom asked where they should change clothes before getting into the baptistry. The minister pointed to an area beside the baptistry with a wire draped by a curtain and said, “Right behind this curtain.” As Tom performed the baptism, the curtain fell and exposed a man standing there stark naked.

The caregiver and I laughed, but what we noticed immediately was Kate. She was laughing as well. I don’t think I’ve seen her laugh so hard in years. Because she doesn’t say much, we often assume that she isn’t following conversations like this. Clearly, we were wrong in this case. As he regaled us with other stories, she continued to laugh as did we. It was a beautiful experience.

She was in a cheerful mood throughout dinner and actually responded to several servers and residents while we were eating.

During the past few years, I have had some success reading to Kate. As with so many other things in my caregivers’ toolbox, it hasn’t been as reliable in the past year or so. She has responded more favorably recently, so after lunch on Tuesday, I picked up The Velveteen Rabbit and sat in a chair beside her. Typically, I sit facing the same direction as Kate, but this time I turned the chair facing her. That enabled me to watch her facial expressions more closely. I am so glad I did.

Before reading to her, she was smiling and seemed more alert than usual. From the very beginning, she was engaged. As I read, I think each of us was attentive to the other and responded similarly. I try to read somewhat dramatically to emphasize the feelings of the rabbit as he encounters the various situations in the story. She loved the story, and I loved watching her.

She has also been awake more during the morning and evening. That has given us a little more time together. I have especially enjoyed that. After finishing my morning walks this past week, there have been a few times that I picked up my laptop, put on some music, and got into bed beside her. She didn’t talk much, but I enjoyed being with her.

She generally goes to sleep soon after we get her to bed, but the last two nights she has been awake until almost 10:00. The fact that I had the TV tuned to basketball may have had something to do with that. Whatever the reason, we enjoyed our time together.

I had intended to post this yesterday morning, but I got tied up in a few other things. That gave me a chance to add a couple of other events from yesterday afternoon. The first one occurred when Kate had finished her ice cream. The caregiver had bought something that looked like an antipasto salad. Kate looked over at it and said, “What do you have there?” That may not seem like much, but it would have been unlikely for her to ask that even before her stroke.

The other event happened after we returned from dinner. I hadn’t turned off the music before we left, and a Charles Lloyd album was playing as we walked in. Almost all the music is very relaxing, and Kate quickly took an interest. I pulled up a chair beside her and faced her. I took her hand in mine, and we sat there for thirty minutes listening to the music. With her eyes closed, she stroked my hand and arm and moved her head with the music. I spoke very little. She said almost nothing, but words weren’t necessary. We were connecting just the way we always have.

So, it’s been a great week. She’s been awake more, talked more, and displayed signs that she not only hears us but can respond appropriately. I realize that the coming week might be quite different, but, as always, I am grateful when Happy Moments like these occur.

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We’re Adapting.

I am mindful that my previous post was not as upbeat as usual, but I do believe it was an accurate portrayal of our situation at the time. Since then, Kate has been pretty much the same except that we’ve had more bright spots. Here are some of the positive signs that have occurred in the past week or so.

Although Kate is still not speaking much, she has surprised us on a number of occasions. Sometimes that has occurred with the caregiver and me, but it has also happened with other residents when we are out for ice cream or dinner. I don’t think I’ve heard her say more than three or four words at a time; however, it’s been exciting to hear her. It clearly communicates that she has understood what has been said to her and that she has responded appropriately.

Two nights ago, I was getting something to drink when a resident who was on the way back to his apartment asked if he could stop by our table and say hello to Kate. I told him that would be fine, but that she might not respond. He later told me she said, “Hello.” Our caregiver also told me that another person had spoken to her and she responded to him as well.

Music continues to play an important role in our lives. One night after dinner, I played an album of The Kingston Trio. She smiled and moved her head in rhythm to the music. I started singing along, and she tried to mouth the words as best she could. The best part came when they sang “M.T.A.” I wasn’t sure she would understand, but I explained the storyline to her. As we sang together, she broke into laughter. She must have understood more than I expected.

We had a touch of spring last week. That gave us an opportunity to sit on the balcony after dinner. I took my phone and a small speaker with us and played an album of The Carpenters’ hits. She was engaged for almost fifty minutes. For a good part of that time, we held hands as her facial expressions communicated how much she was enjoying the music. Moments like this are very special because she hasn’t expressed much emotion since her stroke seven weeks ago.

She has also responded to several things I have read to her. One of those is The Velveteen Rabbit. Another is a letter written by her grandfather to her grandmother on their 40th wedding anniversary. One other is a resolution given to her by our church celebrating her 19 years of service as our volunteer church librarian. These things may not seem so special, but they let me know that the Kate I have known so long is still with me.

She sleeps more in the morning and goes to sleep earlier at night. That leaves us with less quality time together. She experiences longer periods of time when she is awake but doesn’t respond to anything I say or seem to recognize me. Because of that, I was delighted yesterday when the caregiver told me that, “out of the blue,” Kate said, “Where’s my husband?” Life is not the same, but we’re adapting.

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Sad Moments Accompany Happy Moments During Kate’s Recovery

Kate’s stroke occurred just over a month ago, and we are beginning to get a better idea of its more enduring effects. Her doctor is encouraged and thinks she may regain 80% of the abilities she had before. I think she has accomplished close to that right now. Almost every day, we see signs of improvement, so I’m not ready to say she has peaked.

After the first four days when she slept, we have gotten her out of bed every day except one or two. We only missed one week taking her to dinner in the dining room. We also added the afternoon visit to the café where she gets ice cream.

On the other hand, she is not like she used to be. That is reflected in several ways. Her energy level is much lower now. She has always been slow to get going in the morning, but she is sometimes like that until close to dinner though it is more typical that she perks up around three or four in the afternoon. Along with that, she seems to have more moments that trouble her on and off during the day.

She doesn’t talk as much. Previously, she would talk periodically during the day and even at night while she was sleeping. Since the stroke, she has had only a couple of moments like that. One of those occurred at dinner the other night. The caregiver and I were excited to see that. When she speaks, she often does so in a whisper that makes it hard to hear her. In addition, much of what she says is unintelligible.

In some ways, these changes are relatively minor. We were seeing signs of them before the stroke; however, the changes are more severe now.  It makes me think of our visits with Ellen, Kate’s best friend, whose stroke left her with aphasia. We made monthly visits with her, and it became very difficult to understand her. Aphasia also requires much more of the person speaking. In Ellen’s case, she could acknowledge hearing what you said and partially convey what she wanted to say. Kate remains silent much of the time. I miss hearing her voice.

For a long time, our evenings have been the best part of the day. Now, she is very tired when we put her in bed and frequently sleeps through until the morning. I continue to play music videos on YouTube with the hope that she might wake up and enjoy them with me. Sometimes that happens, but, more often than not, it doesn’t.

Finally, she has more moments when she doesn’t appear to know me or feel comfortable with me. She just looks perplexed. I interpret these moments as times when she doesn’t know where she is, who she is with, or who she is.

I’ve always known this was coming, but it’s been doing so gradually. The stroke has brought about a more abrupt downturn.

Let me close on a positive note. We still experience Happy Moments. They are just fewer in number and shorter in duration. When they occur, they are very special and lift my spirits tremendously.

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Kate is Making Progress, But Life is Not the Same.

As I’ve said before, I’m encouraged by the progress Kate has made since her stroke almost three weeks ago. She is awake more. She’s beginning to use her right arm again. Her eyes no longer appear to be frozen to the left. We have taken her to the dining room seven times, and Wednesday we took her for ice cream, (As it turned out, the freezer was down, so there was no ice cream, but she ate a muffin.) I’m amazed at how well she is doing. I also recognize that recovery is a process. She is likely to improve even more in the days or weeks ahead.

Nevertheless, Kate’s stroke is having a significant impact on us. Like her original Alzheimer’s diagnosis and her hospital experience with COVID, it is another challenge in our journey, “Living with Alzheimer’s.”

Several signs suggest the stroke might push her several steps further along this road. One is that she is less emotionally expressive than before. This is most noticeable when we are getting her dressed and in and out of bed. That makes it easier for the caregiver, but Kate has lost a little spark that we respected. In many ways, it seemed appropriate for her to protest.

She is also more neutral in her verbal and facial expressions. She smiles, but her big smiles occur less often. The good news is that she has another smile with her lips closed that I find endearing.

You’ve heard me say many times that she often awakes in the morning without knowing where she is, what she is supposed to do, and even who she is. That experience still occurs, but it seems that she’s more placid in her response rather than being puzzled or afraid.

Along with these things, there are more times when she doesn’t know who I am although she almost always senses she can trust me or does so within a reasonably short time.

I’m particularly concerned about her speech. Although her aphasia made it hard for her to communicate, we were able to converse. It is much harder now, not because I can’t understand what she says. It’s largely because she speaks so little, even when asked a simple question like “Would you like something to drink.” I have a litany of things I say to her about our dating, marriage, children, grandchildren, and travel. They often bring smiles and comments. That isn’t as true now.

I’m very happy to say that we continue to have our Happy Moments. A couple of mornings ago, she was awake early, and I took advantage of that opportunity to spend more time with her. I put on some music I thought she would like, but she didn’t show much interest. I shifted gears to see if I could perk up her spirits.

I put on an album of 100 children’s songs that I had downloaded several years ago when she was disturbed about something after waking from a nap. It saved us that day, and we sang together for at least thirty minutes. She quickly forgot about whatever had disturbed her. I’ve used that album periodically since then, but it had been a long time. I discovered it still works.

It was different this time because she doesn’t speak much. She tried, however, by mouthing the words. She’s good at following the rhythm. It didn’t take her long before I could see expressions of happiness on her face. She got a special kick out of “If You’re Happy and You Know It.” I stood at her bedside singing, clapping, stomping, and saying “Amen” when called for.

That night we had another Happy Moment. We’ve always had great evenings, but the stroke has made those different. Sometimes, she goes to sleep right after the caregiver leaves. Often, she doesn’t wake until the next morning. That particular night she woke up after an hour or so, and I turned to YouTube and selected a series of songs that I know she likes. I caught her at a good time. For over an hour, we held hands and enjoyed the music. Off and on, I talked to her about our marriage and children. She didn’t say much, but she said a lot with her facial expressions.

Yesterday afternoon, I didn’t have any special plans except a brief visit to the grocery store. I spent the extra time with Kate even though the caregiver was here. I pulled up a chair beside her recliner and talked with her. At first, she wasn’t in the mood for conversation. As I spoke, she loosened up a bit. We spent almost two hours together. She dozed off and on, and I did most of the talking, but she was very responsive with her smiles and facial expressions. We both had a great time.

The other day when we were out, the woman in the apartment next to us stopped to visit for a few minutes. She spoke to Kate who didn’t respond. Our neighbor commented that she missed her smile. Me, too, but they haven’t disappeared altogether. And moments like those described above give me an emotional boost and hope that we’ll have more of those to come in the days ahead.

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Making Progress and Speculating on the Future

It’s been a little over a week since Kate’s stroke. Although it was a mild one, it has made its presence felt. Clearly, she is making progress. The first four days she was asleep. Her doctor had told us to expect that. On Monday, she was awake almost all day with a few short rests in between. Between Friday and Monday, she was more alert and made a little effort to speak.  Tuesday was more of a day of rest.

She has continued to eat and drink well, and she hasn’t lost her smile. Music also retains its appeal. She often moves her body (feet, hands, or head) to the rhythm. and attempts to mouth the words.

I contacted her doctor on Monday and asked when we might get her out of bed. He said to use our best judgment. He also indicated that getting her out of bed would be good for her. The next day we got her into her recliner for the afternoon. That went very well. She rested most of that time, but it was good to see her dressed and out of bed.

Yesterday was an especially good day. Our regular caregiver had a doctor’s appointment, so we had two different people come in, each for two hours. The first was very experienced, and we were able to get Kate up and dressed and in her recliner. The second one was a person who had been with us two times before. She has a special touch with her clients. She immediately pulled up a chair beside Kate’s recliner and started talking to her. I made a trip to the grocery store. When I returned, I was surprised to see she was still sitting by her, and they were actually having a conversation. Most of what Kate said was unintelligible, but the caregiver was able to converse anyway. It reminded me of the way she and I converse.

When our regular caregiver arrived to take her place, we decided it was time to try taking Kate to dinner in the dining room. We agreed that if we encountered any problem along the way, we would come back to the apartment. It turned out that wasn’t necessary. We had brief conversations with other residents as we entered and left the dining room as well as at our table during the meal. Everyone spoke to Kate, and she responded remarkably well.

Despite how well she is doing, I can’t help wondering about the long-term consequences. The stroke affected her right arm and leg. She also has a slight droop on the right side of her mouth that has an effect on her speech. Initially, her right arm was totally limp. She can now move her arm a little although she strongly favors her left. I am hopeful that she will continue to improve.

I am less optimistic about her speech. She was already experiencing aphasia as a result of her Alzheimer’s. The stroke itself has had its own impact. Although she sometimes says a few words very clearly, her speech is more garbled now. She also speaks far less than she did before the stroke.

What is most important to me is that the Kate I’ve always known shines through it all. On Saturday, I was sitting up in bed beside her while we played music videos on YouTube. She was moving her head to the music of an Irish instrumental group. I leaned over and told her I loved her. Then I said, “You’re the greatest. You’re my Kate.” She smiled and said, “Yes, I am.” After five days with little attempt at speaking, those were three beautiful words to me.

About seven o’clock on Valentine’s morning, I noticed her eyes were open. I walked to her bedside and took her hand. She pulled my hand to her lips and kissed it. Yesterday afternoon, I told her I loved her and said, “I’d like to give you a kiss.” She puckered up, and I did.

Regardless of what happens in the days ahead, I think, “Our Love is Here to Stay.”

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A Bump in the Road

Many people use the word “journey” when talking about Alzheimer’s and other dementias. I sometimes hesitate to use the term because it seems trite. On the other hand, it really captures a relevant aspect of “Living with Alzheimer’s.” It connotes something that is long in duration and involves a variety of experiences. How apt that is in our case.

Like so many other aspects of life, there are things we expect and those that surprise us. This past Monday we got a surprise, one that potentially may have lasting consequences. Kate had a mild stroke.

We almost always have good nights. That was true Sunday night. We spent the evening watching YouTube videos. A lot of them were choral favorites like “Danny Boy” and “Shenandoah.”

We had a very nice Monday morning as well. She awoke around 8:00, and I spent almost the entire morning beside her in bed. I turned on an assortment of YouTube videos focusing mostly on Broadway favorites. She wasn’t talkative. That’s normal at that time of day, but it was obvious that she was enjoying the music. Several times she commented that it was “wonderful.” I told her how much I enjoyed being with her. She indicated the same to me. Off and on we held hands. The day was off to a good start.

Not long before the caregiver arrived, she went back to sleep, and I went to Rotary. The caregiver let her sleep until 1:00 when she got her up and gave her something to eat. She said that Kate didn’t finish her meal. She kept chewing but didn’t swallow.

After getting back from Rotary but before reaching our apartment, I received a call from an old college friend. When I walked in, I greeted Kate the way I usually do. She gave me a big smile, and I told her I would finish my call and come back to her. About twenty minutes later, I got down on my knees beside her recliner, enabling me to look directly into her eyes, and told her how glad I was to see her.

She didn’t say much, but she looked pleased that I was there. She smiled. As I continued to talk to her, she closed her eyes, and her breathing slowed down. I had a flashback to being with my father and Kate’s mother when they died. Kate looked the same way. I felt she was drifting away from me. I mentioned that to the caregiver. She had the same thought. I told the caregiver that I didn’t want to lose her, but it would be a beautiful way for her to leave me. The precious moments we had the night before and that morning passed through my mind, and I said, “I love you. I always have. I always will.” To me, it seemed like she was trying to respond, but nothing came out.

I called her doctor. His office is in the building next door, one of the advantages of being in this retirement community. He and his nurse came over. By this time, she was in a deep sleep, but her vitals were normal. He checked her eyes. They appeared all right. He lifted each arm and found that her right arm was completely limp while the left was normal. He said he couldn’t be sure but thought she had a stroke. He asked whether I wanted to take her to the hospital. We talked briefly. He and I agreed that it wouldn’t be good to put her through the hospital routine, so we kept her here.

She slept well except for two events, one around 9:30 when her breathing seemed labored. I called the doctor. I described what was going on and let him listen to her breathing. He didn’t think it was serious and suggested that I continue to let her rest. She fell asleep while we were talking. Around 11:30, she screamed and held her right hand against her stomach and then her chest. I felt her left arm. It was warm. I checked the right arm, and it was cold. I pulled the sheet and bedspread over her arm. I didn’t hear a sound after that until the next morning while I was in the bathroom getting ready for the day. She screamed again, but, whatever the cause, it was over before I got to her bedside.

The next morning the doctor returned to check on her. He didn’t notice anything new except that the muscles in her left arm were twitching. He didn’t say that indicated anything special, but I have since learned that this kind of reaction is not unusual for people who have had a stroke. That occurs when the damage to the brain occurs in the part that controls body movement. That might also explain the limpness in her right arm and the fact that her eyes tend to focus to her left.

I told him I felt this was might be a dramatic change in our lives. He acknowledged the likelihood of that though he stopped short of saying she wouldn’t recover. That’s what I expected him to say. He also said that we might observe periods of improvement mixed with more of what we are seeing now.

Since then, she’s been making a little progress each day. Until yesterday morning, she was asleep most of the time, waking periodically for just a few moments, but she has regained some of the strength in her right arm. For a period of time on Thursday, she was more alert although she didn’t speak. She is also eating and drinking much less than normal.

Yesterday (the fourth day since the stroke) was her best day by far. She was awake an hour at one stretch that morning. That’s the longest she had been awake since the stroke. She smiled more and laughed. She responded to several YouTube music videos, mouthing the words to “Battle Hymn of the Republic” with the Mormon Tabernacle Choir. She was especially animated during the chorus, clearly remembering the word “Glory” in “Glory, Glory, Hallelujah.”

She’s coming to life again. I know we may see some permanent damage. My biggest concern is her ability to speak. Aphasia was already a problem, something often experienced by people who have strokes. Still, I am hopeful we may eventually be able to get out for our afternoon ice cream as well as our nightly dinner in the dining room. At any rate, I think that’s a reasonable goal. Time will tell.

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“Focus on the Person, Not the Dementia”

I continue to believe that the most profound information I’ve learned during Kate’s journey with Alzheimer’s came from The Dementia Handbook by Judy Cornish. She emphasizes that “all is not lost with dementia” and points out that while rational thought is lost, people with dementia continue to experience the world through their senses. That enables them to appreciate and enjoy many pleasures of life.

I have made that an essential piece of knowledge in my care for Kate, and it has provided years of joy while living with Alzheimer’s. The quote in the title above comes from one of Cornish’s posts on Twitter. It caught my attention as useful advice, and I’ve discovered numerous ways to apply it. The most typical example is when I return to the apartment after lunch or running errands.

In almost every case, I find Kate sitting quietly in her recliner with her eyes closed while the caregiver sits across from her looking at something on her phone. When I come through the door, I say, “Hello, I’m home!” She often responds with a greeting of her own and gives me a smile as I rest on my knees beside her. I tell her how glad I am to see her. She generally beams. Her whole mood changes in those few moments. It just took focusing on her and conveying how important she is to me.

Here are other examples of how it worked with Kate over the past few days.

Kate’s mornings have always been the most troublesome part of the day. Not all of them are that way, but she usually gets a slow start. That means she doesn’t talk much, and, frequently, she doesn’t want me to talk either. Sunday morning was one of those. She appeared to be bothered by something.

I went through my normal routine. I tell her how glad I am to see her and how special she is to me. On good days, that’s a real ice breaker. On other days, like Sunday, it falls flat.

I didn’t push her. I know from experience that doesn’t work. I got her morning meds and gave her something to drink. That went well. Then I played her Love Changes Everything album and got in bed beside her. I didn’t say anything for a good while and then commented on how much I liked the music. Then I told her I also liked being with her. She smiled, the first affirmation I had received that morning. She was coming around.

That led to a very nice conversation before she drifted off to sleep. She was half asleep when the caregiver arrived at noon. Sometimes that makes it easier to get her dressed and up for the day. This was not one of those times. She protested more than she has in several months.

I can’t be sure, but this may have been related to the fact that the caregiver is new. She began in January, and Kate hasn’t reached a comfort level with her. There are two problems as I see it. First, she doesn’t have as much experience as our other caregivers. Second, she is very quiet. She’s been here fewer than ten times, but she hasn’t said much to me or to Kate except when I have asked direct questions. In addition, she speaks softly and wears a mask, so Kate and I usually have to ask her to repeat herself before we know what she has said.

Given Kate’s mood, I felt that it was better that I stay home instead of going out for lunch. In fact, I remained at home the entire time the caregiver was here. That led to some good things because Kate wasn’t getting any attention from the caregiver and looked bored. I took a seat beside her while she was in her recliner and read The Velveteen Rabbit to her. She perked up right away. I followed that by reading about one of her grandfathers from one of her photobooks.

Things were going well, and I suggested we go for ice cream. While we were out, she had a delusion and hallucinations that disturbed her. Her mood shifted. We went back to the apartment. I spent some time with her while holding her hand and talking to her in a comforting way. I assured her that I would take care of several specific things that troubled her. She became less worried, but she wasn’t as cheerful as she often is at this time of day. I wondered how things would go at dinner. That is usually a good time for her, and it went well except that she wasn’t as talkative as usual.

The day picked up after the caregiver left, and Kate was in bed. She was very relaxed and happy. We talked a little about how comfortable we felt when it was just the two of us. I treasure times like that. She was tired and slept for an hour while I watched one of the NFL playoff games.

Our daughter called as she was waking, and we talked for almost forty-five minutes. Kate often has trouble with phone calls but did very well with this one. It was a beautiful end to a day of ups and downs.

It was a day that reinforced how the personal touch makes a difference in the way Kate feels. It doesn’t prevent delusions, hallucinations, or any of the other typical signs of Alzheimer’s, but it goes a long way toward relieving her anxiety or elevating her mood. That’s exactly what happened that day. Now, let’s look at another example that involves a caregiver.

One of my problems with our in-home care is that Kate doesn’t get this same kind of attention from any of her caregivers. I have accepted the fact that their training focuses heavily on things like bathing patients, dressing them, and using a lift to transfer them from bed to chair and back again along with a host of related things. Everything they do is important, and I don’t have the skill to do the things they do. On the other hand, they tend to focus on their basic skills and neglect treating Kate as a person.

That is why I feel that focusing on her as a person is my primary responsibility. As her husband, I’m in the best position to do this. I love her, and I do my best to express that love in every way that I can.

Having said that, we had an experience with a new caregiver on Monday that offers another example of the importance of having a personal connection with Kate. It also encouraged me to discover a caregiver who has the personality and skill to give Kate the attention she needs.

The new caregiver came to us for the first time one day last week. The agency had alerted me that she had not had much experience. I found that to be true, but she was more personable than most of the others, and I felt comfortable leaving for lunch. Before leaving, I put on a playlist of music I thought Kate would enjoy. I also explained to the caregiver that music had been very important to us. She told me it was important to her as well. She is active in a church choir and has written and recorded a few songs.

When I returned to the apartment, she was sitting in a chair beside Kate and the two of them had been singing along with a Peter, Paul, and Mary album. I can’t tell you how much it meant to me to see Kate singing with her. To the best of my knowledge, that has never happened with another caregiver. It made a big impression on me, and I was delighted when she was back on Monday.

That experience was a good one as well. This time they were in a conversation when I returned from lunch. I spent a little time checking email, and they continued to talk. It was truly remarkable and another great example of the difference it makes when someone is able to “Focus on the person, not the dementia.”