Dancing with a very scary disease

The well-known author and poet, Alice Walker, says it like this: "We are not over when we think we are." The somewhat less well-known author, Lauren Kessler, begins her newly published book, "Dancing with Rose," this way ...

"I cared for my mother on my own for exactly 18 hours "¦ we drove out to the airport to get her "¦ she spent the night "¦ hours later I dropped [her] off at a care facility "¦ a clean, modern, trying-hard-not-to-be-institutional place with six vacant-eyed women sitting in the living room. I got out of there as fast as I could. When I got home I took the nightgown she had worn, the one I lent her, and put it in the trash. Just in case Alzheimer's was contagious."

Some experts say the best protection against landing in a nursing home is "having a daughter." From my own experiences, I believe that to be true. However, I think having a niece helps, too. But this is not that kind of story. At least, not in its beginning.

This is the story of a daughter who was not equipped, not emotionally able, simply not willing to provide the diaper-changing, bath-giving, spoon-feeding care her mother, who had mid-, then late-stage Alzheimer's disease, required.

It's the story of that same daughter who, after her mother's death, sought peace (perhaps some would call it atonement) in a minimum-wage, hands-on caregiving position in a locked memory-care care facility.

And in the end, something that seemed awful turned out to be quite beautiful.

The story starts like this. It's Lauren's second day on the job and she's feeding a patient who "chews and chews and chews and chews "¦ doesn't swallow "¦ she has forgotten that this is what you do when you have food in your mouth, that this is how you eat."

It is said Alzheimer's patients become like babies who have to be dressed and fed and toileted. There is some truth there —e xcept, as the author quickly reminds us, "They are not babies. Babies love your touch. Babies learn."

It's weeks into her job and Lauren is starting to find her caregiving rhythm. But then, an accident occurs "¦ inevitable, avoidable, unsettling, messy. That particular situation doesn't end well. But then again, perhaps it does.

This book is incredibly direct. It's a gut-honest and unflinching look at Alzheimer's disease. It profiles consummate caring in one paragraph and digs into the raw-rich discussion of caring-barely-at-all in the next.

And it casts tender light on the incredible load that caring families, and paid caregivers, face, not just for months or years, but throughout lifetimes. It talks about Alzheimer's disease and dementia in ways that wrench your heart (and maybe your stomach—sometimes both). It's sadly exquisite reading.

Perhaps you're saying to yourself, 'This doesn't apply to me, I'm not a caregiver." You will be.

In "Dancing with Rose" Lauren Kessler boldly puts forward the not-pretty truth about a disease that scares the hell out of most of us.

But in the end, it's not altogether that scary. Because in the end, there's room for dancing.

Sharon Johnson is an associate professor in health and human services at Oregon State University and on the faculty of the OSU Extension. E-mail her at s.johnson@oregonstate.edu or call 776-7371, Ext. 210.

Share This Story