Every time I passed this woman sitting in her wheelchair outside of her room, she gave me a very odd, piercing look that seemed to reek of hatred. It briefly stressed me out just to see her. She was one of many wheelchair-bound residents of a combination nursing/palliative/hospice care facility that I was visiting on a regular basis for personal reasons.
Visiting this facility was an almost daily (sometimes multiple times per day) occurrence for me over a period of two weeks. I came to a point where I tried to avoid looking at and interacting with anyone other than the person I was visiting and the facility’s caregivers. On any typical day, the mostly head-hanging, wheelchair-bound residents were strewn all over the hallways and elsewhere in the building and outside spread out across the fenced-in patio, seemingly waiting to die. Hardly any of them even talked to each other.
Some were terminally ill. Some had all of their mental awareness and intelligence intact. Some were unable to talk. Some had Alzheimer’s or various levels of dementia. In general, this facility was a microcosm of that very unfortunately segment of our aging population who could no longer live independently and had no other options left.
I frequently saw a good number of residents who desperately tried to maneuver their wheel chairs with tiny shuffle steps instead of waiting for some assistance, which often came very late because of a small staff incapable of helping everyone in a timely manner. Most, however, were very much like statues, not talking, not moving. Seeing them always jarred me into an uncomfortable reality.
It could happen to anyone. According to selected long-term care statistics posted on the non-profit Family Caregiver Alliance website:
- In 2012, there were 1.4 million people in nursing homes nationally.
- Sixty-nine percent of people age 65 or older will develop disabilities before they die, and 35% will eventually enter a nursing home.
“I hope I never wind up like this,” I kept saying to myself – in one of these facilities, my body pumped with pain-relieving, stupefying, constipating opioid medication. Seeing this close up and personal has dramatically changed my views about death and dying. I guess it was long overdue to witness this kind of thing. I have been fortunate over the course of my life thus far to be able to selfishly avoid ever having to visit a nursing home or hospice care center.
I say “selfishly” because with this experience came a sense of guilt: Perhaps simply as a human being I should be doing something, anything, to help such poor souls, at least on occasion. All the healthcare workers and volunteers who are deeply involved in this kind of environment on a frequent basis are surely more generous and caring fellow human beings than I.
An elderly woman (they are all elderly) politely asked me a question as I excused myself while being forced to walk directly in front of her wheelchair stationed in the center of the hallway. They are out there in the open so the nurses can keep a close eye on them. These are the residents who have extenuating circumstances that may cause them to do things that could cause harm to themselves and/or others. They are all clearly in view. Everything is pretty much clearly in view. Everyone’s room is open for any passer-by to peer into unobstructed. Privacy takes a back seat to expediency and full openness.
“What’s going on? When does it start? the woman in the hallway asks me.
“I don’t know, ma’am. I don’t work here,” I respond.
“Well what’s that man doing down there at the end of hall?” she points.
“Looks like he is simply looking out the window, ma’am.”
“Well, where is the art show? I saw a sign that said there is an art show today.”
“Sorry, ma’am. I don’t know. I don’t work here, and I wasn’t aware of any art show today.”
She turns to one of her cohorts who just wheeled up and asks her the same question.
“Leave me alone. I’m not interested,” the cohort says.
“I’m sorry, ma’am,” I repeat. She avoids me completely and I go on my way.
For an excellent, first-hand, and detailed depiction of these types of facilities, see “Nasty, Brutish, and Long: Adventures in Eldercare,” by Ira Rosofsky, a psychiatrist who traveled around to nursing homes [mostly in Connecticut) and talked to “sad, confused, and occasionally happy old people.”
“Everyone dies,” Rosofsky writes early on. “When you can’t go home and are permanently in the nursing home, they ironically call it long-term care. Most long-term-care residents last two or three years. Long-term care means you are on the banks of the River Styx waiting for the ferryman, or maybe you’re already on the ferry. At least that’s what’s on the mind of those who still have one.”
River Styx, in case you did not know, is the moving body of water between Earth and Hell, according to Greek mythology.
Another informative read comes from Al-Jen Poo, author of “The Age of Dignity: Preparing for the Elder Boom in a Changing America.” There’s plenty of disturbing details in Poo’s book. For starters, she calls the rapidly growing institutionalization of elder citizens, due primarily to the longevity revolution, “undignified and unhealthy.” She writes that “a fundamental problem with our current health care system is that its measure of success is the delay of death, rather than the quality of life. Living with dignity, feeling comfortable, and having self-determined, steadfast loving care until the end should be our goals for health care for our elders.”
The other very big related problem is that “the need for professional caregivers is skyrocketing.”
Poo calls for “a new society-wide caring infrastructure [that] will enable us to minimize our reliance on the old and often dehumanizing institutional model,” and rely more on home-based health care provided by better-paid and better-trained caregivers. Poo outlines the great amount of work that needs to be initiated and developed in the very near future. But the sad truth is what she calls for seems next to impossible.