1.4 million older adults are confined to nursing homes for the crimes of frailty and dementia, serving life sentences without parole. Another 900,000 live in assisted living facilities.
Despair: noun: utter loss of hope; hopelessness. verb: to lose all hope.
Parts of this article are excepts from 3 articles* written by Martin Bayne.
About 20 years ago, Mr. Bayne was diagnosed with young-onset Parkinson’s disease. Before his diagnosis, he was one of the nation’s most trusted sources of information about long-term care. In an ironic twist of fate, he moved into an assisted living facility 11 years ago. Since then, he has dedicated his time to supporting the elderly and advocating retirement home and assisted living reform. He blogs from time to time at The Voice of Aging Boomers.
A persistent fog of ambient despair. The complete lack of a mental health system. Thrown into a dysfunctional group of disabled, sick and demented strangers.
“Ambient despair” is a term I coined to describe the phenomenon in which residents constantly subjected to abnormally high rates of dementia, death, depression and disability, “fail” quicker than their counterparts who receive the majority of their care in the community and at home.
Yet I’ve always felt that something was missing from the equation. And tonight, as I bit into a crab cake at dinner, and M [another resident] finished talking about Cowboy [her dog], she said, “The trouble with being this old is that everyone tells you what to do — as if you were a child.”
Those of us here, and in many other such facilities, arrive in this, our new society, alone, possibly ill, often without the comfort and support of a spouse we’d been married to for decades.
We eat meals in a dining room filled with strangers and, for perhaps the first time in a half-century, sleep alone in an unfamiliar bed.
Here’s the truth. Assisted living — as the name implies — is a series of services provided to those individuals who can no longer provide them for themselves. Dressing, bathing, eating, toileting are examples of the type of services I’m talking about. Sometimes the services are provided because of frail aging, other times it might be ALS, Parkinson’s or a bad car accident.
One day every resident has an epiphany — I’m going to die in this place.
And from that moment forward, your home becomes your hospice.
Most residents in assisted living facilities, by necessity, live secret lives. On the outside, there might be a calm, even peaceful veneer. But beneath the surface, all of us are susceptible to the ambient despair that is a permanent component of life in this type of facility.
This despair is as real as the landscaping or the food — only more deeply and widely prevalent. It’s the result of months or years of loneliness and isolation and of a lack of true social interaction among residents. It’s also the result of burying our feelings and emotions about the exceptionally high numbers of demented and disabled neighbors around us and being surrounded by frequent death.
How can Despair be Widely Prevalent?
At this point, you may be thinking, “Mom’s place definitely isn’t like that. Their building is beautiful, inside and out. The grounds are beautifully maintained. The staff is very nice and very caring. The food is good. The menu changes every week. There are lots of activities. The residents all seem happy. It’s the kind of place I’d like to live in, if I had to, when I get to be Mom’s age. Besides, I’d never put Mom in a place like that!”
I wouldn’t either. But, consider for a moment how YOU would feel if …
- Your husband died five months ago.
- You sometimes get your medications mixed up and can’t remember when to take them, or IF you did.
- You forgot to turn off your stove more than once and burned your fingers on the hot burners.
- You put your dinner, wrapped in foil, in the microwave and turned it on.
- You can’t go where you want to when you want to because you had to give up driving.
- Your children decided that it’s no longer safe or prudent for you to live alone. So they moved you into this assisted living facility or a nursing home.
- It’s embarrassing because you need someone to help you dress and take a shower.
- Today, a young man, a stranger, who said he was a member of the staff, showed up and announced that he was here to change my catheter.
- So many members of the staff, both young women and men, have seen me at least partially undressed that it doesn’t matter anymore.
- You have to get up, dress, shower, and eat when they tell you to, not when you might want to.
- You can eat in your room, if you want to, but they charge you extra for every meal.
- Last year, someone stole your wedding ring while you slept.
- You’re embarrassed because you have to wear a diaper all day and all night. Otherwise, you’ll wet yourself or your bed.
- The facility sometimes loses clothes you give them to wash.
- The only activities they have here are bingo (boring), the same old movies they show every Friday night, “mystery” tours (only three, then they repeat) where you go on a bus to places you’ve already seen with your husband.
- Your kids sold your home two years ago — the home where you, your husband and your family made some of your fondest memories.
- Most of your close friends have passed away, but the few who are left haven’t visited since you moved here.
- You haven’t made any real friends here. Besides, everyone goes back to their own room after every meal.
- Your kids don’t call as often as they used to, and you see them only once or twice a year. Sometimes, they bring your grandchildren with them.
(Note: Each of these examples actually happened to the author’s mother.)
Bottom Line: What we all value most — our home, dignity, independence, family relationships, friends, most of our treasured possessions — everything that meant anything to us — even our life savings — have all disappeared.
The facility, whether it is an assisted living facility or a nursing home, is designed to impress the families of potential residents, and to reassure the families of current residents that they made the right decision. But, in most facilities, what you see is mostly superficial. It matches the pretty pictures in the facility’s brochure and your mental image of what you want for your Mom.
The reality is that nearly all assisted living facilities and nursing homes are designed to provide the minimum required care at the lowest possible cost with the fewest possible aides to help their residents. Unfortunately I’ve personally seen proof of this in two of the highest rated nursing homes in Florida. Day after day, the same residents were lined up in wheelchairs in front of nursing stations so that the nurses (and aides) can “look after them,” and parked in front of TVs as one of their daily “activities.”
In another instance, I witnessed an assisted living facility’s cost reduction program. Their nutritious lunches were replaced by a plain hot dog every day for months on end. Of course, the resident’s could ask for a bun and condiments, but … .
A few years ago I posted some remarks that were critical of the lack of any substantive improvement in nursing homes. I expected some blow-back, but one in particular bothered me. The commenter, a nurse, pointed out that, on average, nursing homes across the country had made substantial improvements in the quality of their care for residents. Her proof? The so-called quality standards measured by the Federal government (and, by the way, self-reported by the nursing homes themselves, without any independent verification).
The sad fact is that improvement was made only in the specific standards that were being measured such as the percentage of residents who:
- have bed sores;
- are in moderate to severe pain;
- have one or more falls with serious injury;
- have flu shots;
- are physically restrained; etc.
But, what about the factors that are true measures of someone’s quality of life?
- A reason to get out of bed in the morning.
- Making each day as fulfilling as it can be, for the time that remains.
Ambient Despair is another way to say Situational Depression, that is, depression brought on by the circumstances/situation you find yourself in. It’s especially prevalent in people who cannot see any means of getting out on their situation. It’s like jail, except that you are serving a life sentence with no hope of parole. (Psychologists also refer to this as Adjustment Disorder.) In public, you may show a calm, even peaceful veneer. But beneath the surface, you’re filled with persistent:
- Chronic melancholy
- Lack of enjoyment
- Feelings of Abandonment
- Low self-esteem
- Crying spells
- Trouble sleeping
- Difficulty concentrating
- Feelings of being overwhelmed or trapped, with no way out
- “Activity indifference” (you spend your entire day in your room or a chair in the main lobby avoiding activities and other residents)
- Feeling like you’re invisible — just a number
Nothing to look forward to — Just waiting to die!
Next — How we can fix this problem
*The 3 articles:
(1) A Lonely Cowboy
(2) A Room With A Grim View: The “Ambient Despair” That Marks Life In Assisted Living
(3) The Dirty Little Secret of Assisted Living