As caregivers, we need to listen …

… which means we need to speak honestly—now

Heather Jose photo.

Heather Jose

EVERYBODY is talking about this. America is aging. Millions of us are either caregivers—or the recipients of care. But are we really sure all of that care is aimed in the right directions?

Anyone who picked up the New York Times on Sunday found two prominent stories asking this very question. Nicholas Kristof wrote A Loyal Soldier Doesn’t Deserve This about a disabled veteran struggling with inadequate long-term health care. Janet Steen wrote My Mother’s Keepers about the painful choices of caring for her mother in the final stages of Alzheimer’s. Janet calls this journey “impossibly hard.” Of course, she’s right.

I found myself talking about this with colleagues at a nursing home in the Alzheimer’s unit.

I was working there that day as an occupational therapist. First thing in the morning, three of us found ourselves helping residents of the home at the breakfast table. I was checking on a resident to see how well he was able to feed himself. Near me, an aide was helping another man eat breakfast and a nursing assistant was helping a lady do the same.

The aide worked for hospice and she had been caring for this gentleman for more than a year. The gentleman’s condition had declined to the point that he no longer spoke, his body was rather rigid and he communicated only with an occasional smile. The aide was great with him: kind, connected, everything you would want from a loved one.

The nursing assistant noticed her care and asked in a light tone: “Will you take of care of me when I am like that?”

The aide from hospice said, “Of course!”

But the conversation had just begun. From that beginning, the nursing assistant said that she didn’t really want to be around if she couldn’t enjoy life. When I asked her what that meant she didn’t hesitate to say that she wanted to be able to feel the sun on her face and interact with her family. Without that, she said, life wouldn’t matter any longer.

We both agreed with her. We all know the reality about such conditions. Neither of us wanted to end up like that.

I have been thinking about that conversation ever since. I keep asking myself: What if we all spoke honestly about what we want—while we can still speak clearly about it? Of course, as caregivers, we need to listen to people as they express their wishes. Even if their wishes aren’t the same as ours, we should respect them by not pushing endless care and treatments and procedures—sometimes far beyond what they really want.

Take a look at the video below, produced by the St. John Providence Health System. An advance care directive is one way to speak honestly—while we can.


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