Parents beg their children, and spouses entreat each other, “Promise you’ll never put me in a nursing home!” It’s a promise hard to refuse and harder to keep.
Newcomers to the Alzheimer’s caregiver support groups I lead often will make it clear from the start, “I’ll never put her (or him) in a nursing home!”
Why do the words, “nursing home,” arouse such universal dread?
Many people have visited one where a friend or family member was being cared for and have come away shaken by what they’ve seen: frail, sad, old people sitting, with heads drooped, in wheelchairs lining a hallway near the nurses’ station. Others in bed are calling out, “Help me!”
After these visitors leave, they try to shut out what they’ve seen and find excuses not to go back. Their compassion is stifled by horror at the thought, “That could be me one day.”
From the state of the people housed there, we do, indeed, see a scary image of the last stage of life. But does it have to be that way? Is that listlessness intrinsic to very old age or to nursing homes themselves?
To sort that out, it helps to know how the modern nursing home came into being.
We sometimes view our own culture as the guilty, modern inventor of the nursing home. But throughout history, caring for old people unable to care for themselves has been a need and duty that can’t always be met by families. Shelters for the aged have existed at least since the first millennium, when, as Christianity spread over Europe, monasteries created hospices to take care of the poor, the sick and the helpless elderly.
In the United States by the mid-1800s, impoverished older people who were unable to care for themselves and had no family to step in were consigned to almshouses, while those who were not impoverished were sometimes placed in hospitals.
At the time, medicine had no effective treatments or cures for diseases in general, and hospitals had nothing to offer but custodial care. In the1900s, they developed better ways to address illnesses and sometimes even cure them. To free up their beds for people they could deal with successfully, hospitals began to create adjacent facilities for those with chronic illnesses and the debilities of old age. They called these offshoots “nursing homes.”
The goal of care was purely physical and modeled on what had been given in the hospitals: keep patients safe, warm, clean and fed.
In mid-century, the advent of Social Security, and later, Medicaid, gave people enough income to emerge from almshouses, live on their own and even be cared for in a nursing home if they needed it. That spurred the growth of nursing homes but the medical model of care never changed.
Priorities within these facilities are those of the institution itself, not those of its inhabitants. The priority of safety often involves restricting a resident’s freedom. That of cleanliness often means forcing a resistant person into a shower.
For the institution’s convenience, everyone gets up in the morning when told to and is given the same food at the same time as everyone else.
In many nursing homes, if the residents’ psychosocial needs are thought of at all, they are addressed by large-scale, programmed games of bingo or ball toss, or by crafts from a kit devoid of any creativity.
Imagine having been a portrait painter of renown, as was my aunt, and being given a rough-sawn birdhouse to paint with poster paint. Or think of the professor of computer science sitting at a bingo table.
In short, as Atul Gawande, MD, says in Being Mortal (2014) “…our elderly are left with a controlled and supervised institutional existence, a medically designed answer to unfixable problems, a life designed to be safe but empty of anything they care about.”
Nursing homes are inspected by the respective states under federal guidelines and awarded stars for aspects of medical care. Consequently, a nursing home can get five stars while totally ignoring what would restore vitality to the droopy-headed people in wheelchairs in their hallways.
Bill Thomas, MD, a former emergency department doctor, left that position in 1991 to become the director of a local nursing home. He found the place depressing and tried to improve the lives of its residents by improving the medical care. It made no difference.
In time, he identified loneliness, helplessness and boredom as the toxins in nursing home life, and he got a wonderful, wacky idea.
He called together the leadership team of the nursing home and explained his perception that the nursing home lacked life. He proposed having some pets in the home. At first, his colleagues opposed the idea, citing state regulations, but Thomas won them over and took a proposal to the state. He asked for and got permission for two dogs, four cats and 100 birds! A bird for each resident’s room.
It was pandemonium at first, but everyone pitched in, and the effect on the residents was undeniable. They came to life. They eagerly assumed some responsibility for their new companions.
Thomas had not only cured their loneliness and boredom—the place was now anything but boring—he had given their lives purpose and meaning. He had given them a reason to live.
Studies have shown the positive effect of merely providing nursing home residents with a plant in their room to take care of. If the staff looked after the plants instead, having them had no effect on the residents.
That was a start, but a broader culture change is needed in long term care.
Think again of that hallway lined with people in wheelchairs. It is a portrait of isolation.
Engagement saves people from isolation, but it needs to be genuine connection, not one-size-fits-all.
The buzzword these days is person-centered care. In its true sense, it is the opposite of one-size-fits-all. It is care that is a partnership between the person and their caregiver, based on the caregiver’s deep knowledge of the individual, and is characterized by love, support and respect for the person’s rights and wishes.
Because it can only be established when someone knows the person well, it can’t take root in an establishment with a rotating staff or rapid staff turnover.
Person-centered care is the opposite of the medical model of care, where the priorities are those of the institution. In person-centered-care homes, the priorities of the residents govern when and what residents eat, and whether they shower before breakfast or maybe not until tomorrow.
This kind of care is hard to transition to. Staff need to be chosen carefully and to be trained. And since COVID, many homes are struggling to employ enough staff. But this kind of care is definitely what care homes should be striving for.
Unfortunately, “person-centered care” has become a marketing tool used by many, many nursing or assisted living homes with little understanding of the full concept. Therefore, one needs to ask a facility what they mean by person-centered care.
Places where older and compromised people live don’t always have to be depressing. Good, even cheerful and loving nursing homes are out there. In my next blog I will discuss more fully what to look for when searching for a care home for your loved one.
Maggie Sullivan has come to know Alzheimer’s intimately. She was caregiver and advocate during the eight years her mother lived with the disease. For the past 30 years, she has facilitated caregiver support groups for the Alzheimer’s Association, learning from the experience of more than 300 members of those groups. The opinions she expresses here are her own. Maggie is also a writer whose essays and articles have appeared in the New York Times and elsewhere.
