Sharon October 6th, 2009
In high school and college, I worked a lot in nursing homes. I thought the work was more interesting than burger flipping, and I liked many of the patients. I liked that I did something that mattered. And I came to realize that if it were at all possible to avoid, I didn’t want to see my parents or grandparents in a nursing home.
It wasn’t that the homes I worked in were awful - they mostly weren’t. Oh, I worked in one bad one, but since all nursing homes always needed more workers, I could pick and choose. It wasn’t that the staff weren’t kind - most of them were low income workers, some illegal, others immigrants. Despite the fact that they often weren’t treated that well, that the job was physically demanding and the pay appalling (it was good by my college student standards, but I didn’t have to support a family on it), with a couple of exceptions, everyone was kind, patient and generally, as responsive as they possibly could be.
But even then there weren’t enough staff to go around. There wasn’t enough light or air or individual attention. Privacy disappeared, those whose minds were intact were often treated as though they weren’t, and the institution ruled all. Often patients were stuck in front of the tv, or otherwise managed to make them need as little as possible. Sometimes they were utterly abandoned by their families, and the staff was unable to begin to help those losses. I remember an elderly Greek woman with alzheimers whose children abandoned her - she spoke no english, had no idea where she was most of the time. I took the time to go get a Greek-English dictionary out of the library and copy out basic terms, so that we could speak to her, but her children never did as much - they didn’t even respond to frantic queries by staff to please help us understand her.
Moreover, even when the staff was the best possible staff, even when the circumstances were the best possible circumstances, the reality of institutions is that there is little particularity of care - that is, one cares for a group of disabled elders, rather than for a particular person, accomodating their particular ways.
Don’t get me wrong - having cared for many people with alzheimers and after strokes, I don’t judge those who can’t care for elderly parents and grandparents at home. We were fortunate in many ways - we committed to keeping Eric’s grandparents out of a nursing home, but Eric’s grandfather was only truly disoriented and failing deeply for a matter of a few months, while Eric’s grandmother, instead of a long decline, had an accident and a comparatively quick death. And we were fortunate enough to have me be able to be at home - two adults with full time jobs caring for an adult who needs constant physical attention is exhausting and frustrating. There is a place for skilled nursing care in the world. There are elders who simply cannot be kept at home.
That said, however, every nursing home I ever worked in also contained patients who could have continued to live with family, had there been anyone to be even reasonably accomodating. One of my favorite patients was a woman who had had a stroke, and was unable to walk - her strong, healthy and retired son and daughter in law visited daily during the 7 years she lived in the nursing home - and enjoyed lively conversation with a woman of deep intellect and humor. All she required for daily care was a little help transferring from bed to chair to bathroom, and I admit, I was completely mystified as to why she was stuck in a shared room with three other women, sitting in her chair, waiting for her children to visit. I enquired, and she told me that when her son had suggested a nursing home, she’d agreed, because she could see he didn’t really want her living with him.
Most of us, if we envision something other than wholly independent old age, probably hope for something like an affluent person’s assisted living community or a senior residence. The reality is that these places are available only to those with substantial savings or income, or high value housing to trade. And it is also the case that when your savings are gone, you are removed from such places - it is not at all uncommon for someone to enter assisted living and outlive their income or housing value, and have to move either back in with family or into a nursing home.
Affluent assisted living, funded by a rising housing market and stock market growth is simply not something most of us will be able to count on. Which leaves one of two choices - the care of loved ones or nursing homes. And the nursing home option is about to get a lot worse:
http://news.yahoo.com/s/ap/20091004/ap_on_re_us/us_meltdown_nursing_home_cuts_3
“The nation’s nursing homes are perilously close to laying off workers, cutting services — possibly even closing — because of a perfect storm wallop from the recession and deep federal and state government spending cuts, industry experts say.
A Medicare rate adjustment that cuts an estimated $16 billion in nursing home funding over the next 10 years was enacted at week’s end by the federal Centers for Medicare and Medicaid Services — on top of state-level cuts or flat-funding that already had the industry reeling.
And Congress is debating slashing billions more in Medicare funding as part of health care reform.
Add it all up, and the nursing home industry is headed for a crisis, industry officials say.
“We can foresee the possibility of nursing homes having to close their doors,” said David Hebert, a senior vice president at the American Health Care Association. “I certainly foresee that we’ll have to let staff go.”
The funding crisis comes as the nation’s baby boomers age ever closer toward needing nursing home care. The nation’s 16,000 nursing homes housed 1.85 million people last year, up from 1.79 million in 2007, U.S. Census Bureau figures show.
Already this year, 24 states have cut funding for nursing home care and other health services needed by low-income people who are elderly or disabled, according to the Center on Budget and Policy Priorities, a nonprofit research firm based in Washington, D.C.”
As our population ages, the choices for caring for them are about to get much narrower - fewer options, fewer people with enough wealth to pay for all the amenities, and much worse public care for the elderly. We were always facing this crisis - the baby boomer’s aging was always going to put a massive strain on our financial resources and ability to do elder care. The situation is rendered more acute, however, by our collective crisis, and we must, quite rapidly, begin making plans for how we will care for aging parents and grandparents. If before it was marginally possible to imagine putting them in a “home” fairly soon, it will not be.
I know many people who will say that they’d rather endure anything than be dependent on their children. But the truth is this - that for most people, times will come in their lives when they are dependent - on spouses, and then, perhaps, on children. It is part of our lives - we have a long stretch of dependency as children, grow up, have a long stretch of being the one to do and care, and a short or long stretch at the end. You can either be dependent upon your children, or upon strangers who are paid to care for you - but either way, many lives will include periods of dependency.
You can view this in one of two ways - as completely normal, part of the structure of family life, or you can view it as becoming an intolerable burden. You can shape the future of this dependency in several ways - we can structure our family life in such a way as to make it as pleasant and easy as possible, or we can do as we do, and make it as hard and unpleasant as possible. We can, as much as possible, come together as extended families to spread the obligation around, or we can throw it back on the nearest child who happens to live the least long distance away from aging parents. And we can keep parents idependently far away from us as long as humanly possible, so that when they do need to rely on their children, they are incapable of reciprocating and offering help in the house or with grandkids and good companionship, or we can combine households early, as people age, so that families can serve one another, and the transition to dependency is simply another part of a long history of inter-dependence.
There are no easy and good choices here - I know many people who beg their parents to consider living with or near them, and the parents won’t consider it. I know families that can’t get along. I know people with plenty of good reasons to be far away from those who need them. None of this is simple. None of the changes we need to make will be easy. But they are necessary, and they might as well begin sooner, rather than later.
Sharon