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We and Them - The Thin Edge of Dignity

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By Dick Weinman, AARP Volunteer and Assisted Living Guru

“1, 2, 3, 4, 5, 6 . . . .”

Enough already! I counted forty-six tile squares of my bathroom floor and stopped. They all looked alike, and I kept confusing the number. Why was I counting? I was passing the time while I sat on the hard, plastic toilet seat my caregiver placed me on. I may not have been able to count the tiles, but I could see the minutes I was left sitting, waiting for help. Too many had elapsed.   

In despair, and with a sore gluteus maximus, I struggled to get up unaided. Where I would go, I didn’t know, but I thought it would be embarrassing to officialdom if I made my way into the hallway, a towel covering my you-know-what, and called for assistance. Before I managed to fully rise - as if on cue - I heard the knock on the door: “May I come in?” Of course you can – where have you been? The caregiver entered to clean me and get me off the toilet.

******

Needing help peeing, getting wiped, and other peri-care activities is new to me. They’re some of the Activities of Daily Living I can no longer do myself. Of course, in our hurry-up, spit-it-out society, there’s an acronym for them – ADLs. A dependent person, as I’ve become, needs only to require assistance in two ADLs to be eligible to reside in an ALF – another acronym in the Long Term Care alphabet soup.

Until I was 72, I had been independent. I made my own choices. I thought for myself. I had been engaged in the dynamics of a physical, intellectual, and creative life.

It took only a moment to change me into a disabled, dependent person: a veer to the left while driving my mini-van into the path of a cement mixer truck.   After that it took the accumulated experiences of my past years - my being - to carry me through the collision: coma, pain, broken and fractured parts, burned skin, successive operations. Then the awakening: the body “humpty-dumptyed together again” - only in a wheelchair with partially functioning hands. But the brain remained intact, the fierce independent spirit was still alive and unimpaired.

A bad combination: free choice of mind, but not of body.

It meant an institution of sorts, various forms of congregate living: Assisted Living Facilities (ALFs) like mine, Continuing Care Retirement Facilities (CCRFs), Nursing Homes (acronym free), Adult Foster Homes (AFHs).   While meeting the basic, physical needs, and, perhaps the social needs of the Long Term Care (LTC) recipient, these institutions do just that – they institutionalize. They squeeze independence.

As residents of an ALF, we live a dependent life. Regardless of the extremes of assistance we require, we depend on the concern and care of others; their attention to our needs. Most of all, we put ourselves in the hands of those who assist us: the caregivers.

If we were living in our home, our caregivers would be our children and grandchildren. We would have their love; their remembrance of us caring for them, assisting their lives as they flowered. Now, as our strength recedes and our abilities fade, it’s their turn. We need their help.

But in our culture, the acceleration, fracturization, and tension of modern American life, transforms the role of family to an ALF, where children, grandchildren, nieces and nephews, aunts and uncles turn the responsibility over to care givers.

And who are the new family, the villagers?

That’s the subject of the next blog. Editor's Note: This is the first in a series on the relationship between residents and caregivers in an assisted living facility.

[Istock illustration:  wildpixel]

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