We build on what we learn, and on what we know and observe based upon our individual knowledge of a beloved one afflicted with Alzheimer's disease.
By Pamela R. Kelley
Alzheimer's Reading Room
I hung up the phone and thought: If only I could clone myself – Audrey’s life would be immeasurably easier.
The agency called to report that an “incident” occurred at Mom’s today, and as a result their employee left early and would not return. It seems that the employee, let’s call her “Bertha”, attempted to engage my mother in some coloring books.
Not only wasn’t Audrey interested, but she slapped Bertha on the arm – twice – when Bertha tried to get her to back into her room where the proposed coloring would occur.
Worse yet, Aud threatened her with the cane when Bertha didn’t back off quickly enough. That did it for Bertha – she called the agency and then left.
Another day, another paid caregiver doesn’t pan out.
I didn’t have a uniformly good feeling about that caregiver when I first met her. So it didn’t surprise me when the agency called to report that “Brenda” was not going to return to assist my mother after today.
Disappointed? Not really.
If somebody isn’t able to find a way to comfort my mother with their companionship, then I don’t need to employ them. There was a time, however, when such a call would have felt like catastrophe.
I don’t know how anyone else manages her responsibilities to a loved one with Alzheimer’s Disease. Not really. I read as much as I can. I look for good mentors and models, as Bob provided us with Dotty – especially during the years that Audrey lived with my husband and me. But I’m keenly aware that each and every one of us finds our own way, responding as we must to the unique conditions of our particular paths.
We build on what we learn, and on what we know and observe based upon our individual knowledge of a beloved afflicted with a terrible disease.
When it was clear that my marriage could become a casualty to Alzheimer’s in the house, I found the best nearby residential care facility available for my mother. I resolved that I would remain my mother’s primary caregiver, even if I would not be on the job 24/7 any longer. I recognized that the care staff would not be able to spend long periods of one-on-one time with Audrey. I knew that she needed that presence to feel most secure.
I committed to being there every day.
I also continued to employ the agency that provided me with respite caregivers when my mother lived with me. Four afternoons every week, a woman came to spend three hours with my mother – as a paid companion to organize and set up activities that my mother found pleasing: watching cooking shows on TV, coloring, taking a walk, washing dishes, vacuuming the carpets, looking at photos or picture books.
The most recent companion, Queenie, is a former nurse. At 78 herself, Queenie’s pace matches Audrey’s in a way that feels natural. They’re not GREAT friends. Audrey doesn’t warm up to many. But they’ve found a way of being together that is more than satisfactory.
Audrey tells me sometimes about that “old man” who comes to see her.
From the context of her comments, I know that Mom is talking about Queenie. Queenie helps Audrey participate in activities, brings her snacks, helps stage activities that Audrey can do. My mother seems to like bossing her around. I’m a fan of Queenie’s.
Her four afternoons are added to my five mornings and five evenings, plus the weekly visits from a dear friend. In this way, we manage to fill roughly fifty hours of Audrey’s time. Each of those moments is a moment when there’s someone with a ready answer to my mother’s persistent question, “What am I supposed to do now?”
Recently, Queenie fell ill. The agency proposed Bertha as her fill-in, a back-up until Queenie was back to work. I always insist on meeting these back-up caregivers, and I’ve developed a fairly quick eye for whether someone will fit neatly into our community of caregivers – or not. Let’s just say I was skeptical when it came to Brenda.
She was roughly my age. She expressed confidence that she knew how to be with someone with advanced Alzheimer’s Disease. She professed extensive experience. She also conveyed a disinterest in my suggestions or advice – she knew what she was doing, she said. I took note.
I liked Bertha’s confidence, but was wary of the lack of humility. Dealing with AD has taught me quite a bit of humility. My native intelligence doesn’t always help in a moment of distress. My natural empathy and kindness, however, normally carries me through the rough spots. It’s in this way that we’ve gotten through some very difficult days.
That there will be difficult days is a given.
And so, I wasn’t surprised to learn today that Brenda was off the job. I’d spent four hours with my mother in the morning. I knew that she was feeling lots of pain in her arthritic joints, and I knew that when she was in pain she was more likely to evidence difficult behaviors than when she was not. This was a day for pampering and fussing:
“Mom, let me put that heating pad on your sore shoulder.” “Mom, here’s a cup of tea and a cookie.” “Mom, let’s watch that cooking show to see what she’s making for supper.” “Here Mom, I’ll scratch your back.”Not every one of my suggestions is gratefully received. Sometimes, Audrey just needs to express her frustration or irritation or despair. Just as often, though, she’ll grab my hand and raise it to her lips. She’s quick to tell me, “You’re the best one I ever had.” At that moment, I am. I would be thrilled to know that there are times when, to Audrey, one of the paid caregivers was the best one too.
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After I hung up the phone with the private duty agency, another call came in. This one was the director of the assisted living facility. She wanted to make sure I was aware of what transpired. She reassured me that my mother was fine – calm and relaxing in her room, watching somebody cook on television.
She remarked that the private-duty caregiver was “excitable” as she stormed out. She was going to use it as a training example, illustrating the need to constantly assess the resident’s comfort level while interacting. Especially when interrupting a tranquil scene. This seemed like a very good lesson to me.
When I hung up the phone after these calls today, I thought about how much better I’ve become at rolling with what comes my way.
So the fill-in caregiver couldn’t cut it with Audrey? No worries – there’ll be another, and then Queenie will be back. Or not. We’ll deal with what unfolds.
Meanwhile, the facility staff is fully onboard, learning Audrey’s mannerisms and tolerances every day. And then there’s me.
It sure would be nice if I could be cloned.
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