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.

Kate’s Recovery Continues

Our lives are not back to normal since Kate’s stroke nine weeks ago; however, she continues to improve in significant ways. In addition to the changes noted mentioned in previous posts, she does not always go to sleep right after we put her in bed for the night between 6:30 and 7:00. You might think that’s a small thing, but it’s a big one for me.

In recent years, our evenings have been the best part of our day. It’s the time when the obligations of the day are over, and we spend quality time together. Music, of course, is always a part of that. For several years, our habit has been to listen/watch music videos on the TV. At first, that meant DVDs, but I soon learned about the wealth of music on YouTube. That expanded the variety of our musical entertainment, and I looked forward to this nighttime ritual. We didn’t talk a lot. Our focus was on the music and each other. Kate’s stroke changed that, and I have missed those evenings together.

At first, I thought these moments were gone forever, but there are signs of their return. Four nights during the past week Kate was awake until after 9:30. More importantly, she was very much like she was before the stroke. She was very relaxed and at ease. That is what I had come to expect for several years. It’s as though she feels the pressure of the day has been released. I know I feel that way. The combination makes for a good evening for both of us.

I have grown accustomed to the many changes that accompany Alzheimer’s, but when something new occurs, I always wonder if it will be a new pattern or just an isolated variation from the new norm. I’m far from concluding that Kate’s four nights of being awake longer in the evening is going to be the custom in the future. Like so many other Happy Moments, I’ll just appreciate and savor them when they come.

This morning when I was about to upload this post, I noticed that Kate was awake, alert, and smiling. I had to take advantage of that moment and got in bed beside her. I turned on YouTube and brought up a short series of singalong videos of songs like “I’ve Been Working on the Railroad,” “She’ll Be Comin’ Round the Mountain When She Comes,” and ends with Elvis singing “I Can’t Help Falling in Love.” Kate loved it so much that we went through the series twice. She even tried to sing along with two or three of them. What a great way to begin the day. Her recovery continues.

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.