Caregiver Experience vs. Caregiver Wisdom

Caregiver experience can be acquired by anyone working with a dementia patient. Caregiver wisdom is something else entirely. People can learn the mechanics of the job without getting any wiser about the disease or the human condition. How can we transform our experience into wisdom?

caregiver experience vs. caregiver wisdom

Can you find the hummingbird in this photo?

Merriam Webster says experience is “something personally encountered, undergone, or lived through.” Caregivers experience the challenge of communicating with those who can’t speak. We feel the exertion of helping people who can’t move. The smelly reality of incontinence is part of daily life. But just witnessing these things doesn’t make us wise. Some get the job done by going through the motions without ever seeing the deeper truths in front of us.

The word wisdom has many meanings. But the definition of wisdom that applies here is the “ability to discern inner qualities and relationships; insight.” In the past eight years, I’ve observed aides in residential care settings, senior programs, and in my home. I’ve also tried to examine my own behavior as my mother’s disease progressed and I logged years of “experience.” The wisest, most effective caregivers are often people with a personal connection to someone with dementia. Their workplace compassion has deep roots.

About a month ago, an aide visited my mom. She was subbing for someone who had a sudden emergency. Before I explained anything about my mom’s routine, she sat at my mother’s side and held her hand. This simple gesture was so calming to my mom. It was like the aide performed a magic trick. I later learned that for years she’d taken care of a grandmother with dementia.

Something happens when you’re close to this disease for a long time. If you really pay attention, you can see behavior patterns occurring below the surface of basic interactions. You start to notice how subtle changes in your behavior can have a deeper impact on the person in your care. My mom, for example, really trusts me and will often cooperate more if I reach her through touch and tone of voice before attempting some task. I was not always so careful with her. But over time I’ve learned that she responds much better when I’m truly attentive.

It’s very hard to give that much focus to an entire unit of patients with extreme needs. I feel sorry for caregivers employed in overcrowded settings. Many of them are too overwhelmed to provide the proper level of care. But I don’t have a lot of sympathy for slackers working in a situation that could make them much wiser if they paid some attention. There are definitely employees in elder care settings who neglect vulnerable people without thinking. Given the rising number of dementia cases across the country, I think we need to start asking public officials and health care policy makers to hold providers to a higher performance standard. As the number of dementia patients increases, our society must develop a system of care driven by wisdom from families and professionals who truly understand the disease. Are there any signs of progress in your neck of the woods?

Learning from Dementia

Every time I think I have it figured out, I learn something new from caring for a mother with dementia. Today, Mom taught me a lesson I should have learned long ago. Although she is impaired in a hundred ways, she still finds ways to control her life, no matter what others are doing.

Learning from Dementia

We had a visit from some family members Mom hadn’t seen in three years. These are people she always liked and I expected her to be really pleased by their familiar voices and efforts to re-connect. All morning I said, “Uncle So-and-So is coming to visit. Remember Uncle So-and-So?”

She laughed, like she always does when something appeals to her. As I dressed her in a bright green shirt and combed her hair, I explained ten times that we were having visitors. Mom seemed happy, even eager, for the visit.

Most research about dementia recommends maintaining social connections with people as a strategy to improve the health of caregivers and dementia patients. Many studies — including the work of Bryan James, an epidemiologist at the Rush Alzheimer’s Disease Center in Chicago — have found that elderly people with higher levels of social interaction exhibit better brain health. Bryan James found that rates of cognitive decline were 70 percent lower “in people with frequent social contact than those with low social activity.” James — quoted in an article by Jill Suttie — says, “Social activity is related to motor function, just like physical exercise is related. We can’t determine which is most important—they each contribute a piece of the puzzle.”

I know for a fact that visits from some people improve my mother’s mood and boost her morale. We have a friend who used to own a coffee shop where my mother once enjoyed ice cream sundaes. When he visits our house, she recognizes his voice and perks up at the sound. Although these simple interactions please Mom, her behavior changes when we have a visit from family members. For some reason, my mother “plays possum” when relatives arrive. A few months back, two of her sisters came to visit, along with their four daughters. My mom pretended to be asleep the entire time.

I’m not sure what provokes this, but my theory is that she doesn’t want them to know the truth about her illness. She pretends to be sleeping so she doesn’t have to reveal that she can’t respond to their questions or remember their names. If she’s just snoozing in the chair, she can experience the comfort of listening to them without feeling the pressure to search for words she lost a long time ago.

Today, she repeated the same kind of performance — then as soon as Uncle So-and-So was in the car, Mom was smiling and laughing just like usual. Thank goodness he’s a man with a sense of humor — and a very big heart. Even if she didn’t talk, his visit meant the world to me.