When Understanding Leaves - Thin Edge of Dignity

My knowledge of Alzheimer’s began in 1998, when my wife, Ginny was diagnosed with the disease. Learning about Alzheimer’s has been a fifteen year journey for me, beginning as her caregiver in our home, to turning her over to the caregivers at an Alzheimer’s facility, which I visited with regularity until the end of her journey in 2013. She must have suffered silently and painfully as her understanding crept away. She silently grasped at its impalpable nothingness until there was nothing to clutch – and it slipped away.

But it is not Ginny’s mental disarray with which I’m concerned. It is what I see, with what I have observed in the memory center, as I look around at my ALF. Assisted Living Facilities were conceived to assist elders who needed help to execute the activities of daily living, a term honored by an acronym – ADL. An ALF was meant to replace a home. It was to be an aggregate of personal residences, a community of elders who couldn’t quite do it for themselves – but knew what to do.

I’m pained when I see the pain of those residents from whom understanding is fleeing, or worse, has flown. It’s the same pain I felt as Ginny – little-by-little - lost understanding.

However, Ginny was fortunate. She was in facility that specialized in working with Alzheimer’s patients, where the staff were specially trained to help residents with dementia. Most of the staff had longevity, consequently a familiarity with comforting the patients.

In many ALFs, staff life is short and varied – caregivers come and go, and so does the level of care for residents disoriented by dementia.

My most painful – and surely the resident’s – is that compacted moment in time – right before breakfast and dinner – when the resident has to decide which of the many choices spoken by the server, s/he prefers.

There’s not much time; it’s a quick need-to-know: “Do you want juice - orange, pineapple, mango, apple,” (“Just like every day, remember?” No. she can’t.) “Oat meal – yes or no? Eggs” – yes or no? What kind? How many? “Scone? – You know, it’s a kind of pastry. Do you want it or not?” Toast – yes or no? What kind of bread?” . . . . ad infinitem. That’s only one meal out of three.

Confusing to read? Imagine how it sounds to a brain paralyzed by fibers of plaque.

Just like my wife when tested for Alzheimer’s, the resident becomes too confused to answer; becomes frustrated and angry. Then strikes out and yells, or like my wife, swears vulgarly.

But some entrapped by rapid-fire questioning remain silent. They don’t understand the words. They’re docile; murmur “yes,” or nod the head to every option, every question. Choice is sucked into the fog of confusion and the person can’t comprehend their reality.

And that’s why memory centers – a euphemism for society’s distaste for calling unpleasant things what they are – exist. As one of the Long Term Care Facilities industry, they are meant to hold – and hopefully care for – the specific needs of elders with Alzheimer’s and dementia. Yet many ALFs take in residents on the long continuum of loss of cognition; what begins mild eventually becomes severe.

For local resources, go to www.alz.org/ oregon

[Istock:  goa_novi]

Editor's Note: "Recently, the composite of people on whose situations the observations were based, have be transferred to memory care facilities."