Op-Ed: Broken body, sharp mind,
no good home

 

THE PLATE of crackers and cheese haunts me.

Every afternoon at four it appeared on the tall countertop surrounding the reception desk in my mother’s nursing home. It was one of those amenities that brochures crow about - “gracious afternoon snack’’ - but in reality it was an empty gesture. No one ever sat in that lobby, except for a couple of tiny women in wheelchairs. The countertop was too high for them to reach, and the platter was covered with plastic wrap which they couldn’t have managed to peel back. So every afternoon the two ladies sat there, the receptionist sat there, and the cheese sat there. I noticed it when I walked by, on my way to visit my mother.

She was in the nursing home because a neurological disease had left her paralyzed from the waist down, and her obesity made it impossible for her to be moved without the help of two aides and a mechanical lift.

Her body had deteriorated, but her mind was still sharp. “This place erodes your expectation that you will be well cared for,’’ she said to me after she’d been there a few weeks - an observation that broke my heart both for its lucidity and its matter-of-fact accuracy.

Her nursing home was relatively fancy, certainly not cheap. Nobody was mistreating her; that’s not what she meant. She was talking about a kind of mediocrity and apathy. The bingo. The crummy food. The fact that she sometimes lay in bed for hours before someone found time to go through the process of cleaning her, dressing her, and lifting her into her wheelchair. The fact that this process was so laborious that she sometimes heard the aides arguing outside her door about whose turn it was to do it.

These arguments, and her overall predicament, made her angry and ashamed: she hated feeling like a burden, hated the loss of autonomy.

I know that there are better nursing homes out there, and worse ones. My mother had her own reasons (a romance with a man in the assisted living place next door) for wanting to stay where she was. And there were some nice people working there - a physical therapist who brought her cups of the Starbucks coffee she craved, an aide whose gentleness moved her to tears. Still, I kept looking to see if I could find someplace better - more interesting, more comfortable - for a person whose body needed a lot of care but who was still intellectually quick and curious. The answers I got were vague and unpromising.

I called a home for people with physical disabilities caused by neurological illness, and was told that my mother was too old to fit in with the other residents.

I saw a geriatric social worker who gave me the names of several nursing homes, which I visited only to find that they weren’t all that different from the one where my mother was living.

The kind of place she needed - a smart nursing home designed for smart people whose bodies had given out in catastrophic ways - wasn’t something I could find for my mother, who lived in the nursing home for two years before her death.

But it’s something we’re going to need more and more of in the next few decades. The demographic handwriting is on the wall. The baby boomers are aging. Sixty may be the new 40, and 80 may be the new 60 - but there are only so many of these bright pithy sayings we can invent before we hit an age at which we are really, undeniably, old. Big things will go wrong with our bodies. We’ll need places to live. We’ll need more assistance than assisted living places can provide. We’ll need handsome nursing homes built to encourage the greatest possible mobility and independence, and run with imagination and sensitivity.

I think about my mother all the time, with love and with guilt. And I think about the ladies who must be sitting in that lobby this afternoon, and the plate of cheese and crackers sitting near them, neatly arranged and just out of reach.

-From: Broken body, sharp mind, no good home, by Joan Wickersham, The Boston Globe, August 24, 2009, http://www.boston.com/bostonglobe/editorial_opinion/oped/articles/2009/08/24/broken_body_sharp_mind_no_good_home/ retrieved 9/8/09 (cited in/linked from: The M & B Weekly- News from Margolis & Bloom, LLP - September 8, 2009).

Editor’s note:  There are some promising models out there to address just such issues. See “The Eden Alternative: Re-Imagining The Nursing Home”, MGH Community News, 12/07).

9/09