Only Anecdotal

No numbers, just stories

Archive for the ‘nursing homes’ Category

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The theme this week is around people who need people. And while this is lovely in an ideal world, I have to say that in this one, these are not the luckiest people in the world.

These are not unfamiliar thoughts on this blog, as I have often discussed the woeful lack of community-based, long-term care services. If we did build a society in which we realized that people needing people is a natural, human instinct, we would not have built communities that value privacy and independence above the community itself. Twisted, wrong interpretations of mottoes we hold in our collective psyche: Live free or die. L’enfer c’est les autres. Our misery comes not from having to tolerate other people, but from our refusal to do so.

So, enter the assisted living. I have visited many an assisted living community, and I must say that they can be lovely. In most, I enter the lobby with the feeling that I have entered a grand hotel, often with happy hour, and brunch–with carving station. Also, mostly, with a homogenous population of a certain age and a certain income bracket… and a certain functionality, too. A little too poor, and it’s the end. A little too incontinent, and it’s time for the nursing home. I struggle with the notion of these restrictions, and also with the notion of yet another sequestering of a population in its own community.

Several years ago, I had the opportunity to participate in a three-weekend advocacy training sponsored by Massachusetts Families Organizing for Change. Tagged onto a fellowship that I had through the Leadership Education in Neurodevelopmental Disabilities (LEND) program, the experience was life-changing, particularly because of the people I met. But also because of the work we did. In one exercise, we sat as friends and family to design the ideal community for people with disabilities, for people we love. The first section involved looking at pictures of various houses. One was a typical colonial, not unlike my own house, with four windows, two up, two down, and a lovely little set of stairs leading to the front door. I saw that my mother would have enormous difficulty visiting, as she has trouble with stairs. So, we went on to discuss this, and so many other issues that come up. For wanderers, it would be such a relief never to have to worry about traffic or strangers, at least within a certain area. And what if we made it easy for service delivery, such as personal care? If people lived close together, it would eliminate transportation time and cost. If there were developmentally appropriate entertainment available, so much for the better. And so on. Before we knew it, we had created… Fernald.

Or something like it. Perhaps nicer, an assisted living sort of community, maybe. McLean Hospital, perhaps. But not the sort of community that has space for all of us, together. We anticipate the dangers of the outside world, and feel an enormous need to protect, to seclude, rather than to figure out ways to include and accept.

And so in our urgency, we reach that certain age–or someone we love does–and the time has come to find a place beyond the world and its children, its chaos and its property taxes, the hectic pace, the long walk to the mailbox in the snow, the laundry, the everyday.

We think of luxury in this way, an escape from the everyday responsibilities, but without this, without meaningful work, existence, can we remain whole and healthy? Or are we simply waiting for death?

In fact, I suppose we could argue that we are always waiting for death, but in reality I doubt that many in this country’s mainstream culture contemplate this notion at all, much less on a regular basis. And so we separate hints of it from ordinary life, this cultural obsession with youth, appearance of health, wealth… I fear that our desire to care, to help the needy, to seek solutions elsewhere, are all ways to separate ourselves, too, from the Other, the near-dead, the sick, the Us in them.

This week, I logged into my database to find an enormous number of consumers still flashing open files at me. I scrolled through the names, trying to remember the stories, and pictured some back porch, a kitchen table, a white dog, the scent of bacon and coffee still lingering from the morning, life, the stories, some waiting still to be told again, and lived, too, all distinct and yet the same in their foothold in this life, the one that we wish to tidy, to sanitize, to hold onto a heartbeat if not a heart.

I sat with three families in two days recently, and listened to the tremendous burdens they face as they attempt to care for their parents who cannot afford the luxury of assisted living. Is a nursing home the only solution? Not cheap, but at least feasible in the twisted funding structure of most state’s Medicaid programs, and their ever-present, post-Olmstead institutional bias. These frail family members no longer fit where they were, as they were, and yes, there are surely ways that they could, that we could fit intergenerational, inter-ability lives together, better. But for most of us, now, in a crisis, building a new world comes not so easily, not so affordably, not so quickly. We wish to include, but it is so much easier to protect.

Written by Only Anecdotal

27 Aug 2012 at 8:58pm

Waiving the Red Flag

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Today was possibly the worst day I have ever experienced in my present job.

In my attempts to keep my ears and eyes open for any sorts of small details that may make life in the real world a possibility for an individual, I usually check my facts before springing forward with the news of a lucky jackpot. I usually research, then check again.. and this time I thought I had. But I obviously had not.

Or more accurately, I was misinformed–by an expert.

I fear–deeply–that the last hopes a man had to keep his wife at home may have dissolved today. In a nursing home, the woman will be able to get funding, but at home? Well, this is what waivers are for, unfortunately. Waivers, because qualifying for Medicaid–the only insurer that pays for long-term care–requires not only a disability, but poverty, as well–hence the waiver. But the waivers vary from state to state, and usually target a specific group of people, often a capped number of them. Rules tend to be stringent: over nine years old with autism? out of luck. Under 60 with need for services to prevent institutionalization? Too bad.

And this is where I really messed up. Even to age restrictions, in certain programs, there are exceptions. If you get SSDI, you have to wait two years for Medicare–unless you have ALS. And in the case of the family I was helping, a diagnosis seemed the best hope for help. But now, we learn that supports will be minimal–and not with the flexibility we had hoped for.

It all makes me think about how much healthcare depends on such studious and constant attention to minute, complex details of not only one bureaucracy, but several of them. It makes me think that when even those of us who are supposed to be knowledgeable of a wide array of programs cannot decipher the possibilities, we are all in trouble.

I am not sure how I am going to break the news to the family tomorrow. I at first thought to head into the conversation with more expert knowledge, with more potential solutions to a very difficult situation. But I think somehow that building this sort of hope right now would be cruel–and only an effort for me to feel better, not an actual, feasible way for a family to stay together with the supports they need at home.

There are days when my stomach knots up in this job: watching a man’s face as he takes in new information from a doctor “No, the dialysis is probably not temporary.” But feeling that there are no loopholes left?

I at first was going to refer to white flags in the title of this piece, but I realized that in spite of this, surrender is not the answer. Letting life happen is one thing: acceptance is often a process that has taken place long before I see people, even in new crisis situations. Flexibility, change, moving on to better things are difficult, but good decisions we can make in the wake of such crises.

But it is more than this. These incidents, ever the more common, I am convinced–especially in middle-aged people with chronic or late-onset disabilities–are warnings to us all. Red flags are up all around us, alerting us to the emergency, the urgent need for Money Follows the Person, and more: to Money Stays With the Person, stays at home. Community First.

Waiver? No. Living at home should not be the waivered condition: skilled nursing facilities should be the exception, the thing that needs a bit of hoop jumping, and maybe a few headaches. I wish that months ago I could have spent my time with this family helping them with living life beyond mere survival. Maybe someday, some coordinator of some sort, somewhere, will have this sort of a job. But until then, the struggle continues.

Written by Only Anecdotal

30 Jul 2012 at 11:37pm