Apr 25, 2012

Translating Alzheimer's for Others

“Does Audrey have her hearing aids in?”

By Pamela R. Kelley
+Alzheimer's Reading Room

Translating Alzheimer's  for Others

If you’ve been a reader of The Alzheimer’s Reading Room for any period of time, you know Bob DeMarco’s Venn diagram depicting the overlap between the ordinary world and Alzheimer’s World.

It’s shaded at the sweet spot where we as caregivers sometimes reside, where we understand our roles as care partners better. We learn to communicate more effectively because we’ve gained some compassionate skills while adapting to the challenges dementia imposes.

When my mother moved to an assisted living facility for those with memory loss, I began to see that it wasn’t enough for just me to inhabit the sweet spot. My mother’s care was being shared now with others.

All these new people would have a very different perspective on my mother, Audrey, since they’d not known her essential nature before Alzheimer’s arrived. I had to hope they’d give her the benefit of the doubt when she was being hostile, insulting, degrading or worse.

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I figured I could serve as the bridge that helped them understand and manage my mother at her most difficult. I could translate Audrey to them, and slowly help them take that little step to the left and into the sweet spot of Alzheimer’s World where Mom and I comfortably reside together.

They needed to know that if my mother was snappish or aggravated in the morning, talking loudly and a bit rudely, then the first question they should answer was whether or not she was wearing her hearing aids. If she was not, then she wasn’t hearing anything they’d said, or even if they’d said anything. And she would be angry that they were doing things in her room without telling her about it and asking permission.

Or approaching her too closely before making clear that they meant her no harm. It surprised me how often I arrived in the morning to hear her assigned caregiver report that my mother was in a terrible mood, that she wouldn’t come down to the sunroom for breakfast, or that she wouldn’t take her pills.

The litany of how my mother was a difficulty to the morning caregiver knocked me off kilter for the first few weeks, until I began to notice the pattern. On those mornings when the report was largely negative, Mom often didn’t have her hearing aids in. Or if she did, the batteries were dead. So I began asking regularly, after the report was delivered, “Does Audrey have her hearing aids in?”

It took me a while longer to understand that simply asking wouldn’t prompt the care staff to incorporate this small step into their routine approach to my mother every day. I needed to make sure that this step was incorporated into her formal plan of care as well – written down in the task book that drove the staff activities from shift to shift.

I needed to make sure that the “behavior log” contained within it my hard-won knowledge of how to assess the likely origins of my mother’s difficult behavior, so that full blown upsets could be avoided or nipped early.

If it wasn’t her profound hearing loss that set her on edge because she’d not remembered the hearing aids, then it was likely her arthritis pain acting up. I always knew when my mother was in pain when she winced a certain way, or reached for her left shoulder, or held her lower arm limply across her lap. I knew to look for these signals. I knew Audrey didn’t complain of pain outright, but that if I saw one of these signs and asked her at that moment whether her shoulders hurt, I would get an accurate answer. And I also knew that was the time I would most likely get her to take her pill for the pain, and that otherwise she would resist the pills.

This too was information that needed to be added into that behavior log and plan of care.

Over the ensuing months, I’ve managed to impart quite a bit of information about the unique language that Audrey uses.

Calling someone “Lady” is a sure sign that she believes the individual is being bossy, pushy or nosy. She’s on the road to an upset if her privacy or personal space isn’t soon restored.

In contrast, “Lady Jane” is a term of jocular affection.

This is part three in a three part series.

Also see--
Translating in Alzheimer's World
Alzheimer's Translation Services

Pamela R. Kelley is the full-time caregiver for her mother, after serving as her long-distance caregiver for more than four years. Before her caregiving role took primacy, Ms. Kelley directed an American Bar Association-approved paralegal education program at the University of Alaska Anchorage from within UAA's Justice Center. As she transitioned to full-time caregiving, she prepared a resource manual and presented lectures on long-distance caregiving to her UAA colleagues. She is a 25-year member of the Alaska Bar Association, and concentrated her years of active practice in the areas of commercial transactions and creditor representation in complex bankruptcy cases. Over the years, she has published many articles on topics as varied as cyber-stalking and antitrust law. Ms. Kelley lives, works and writes in Anchorage, Alaska.

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