Monday 16 July 2012

How assisted living can take the life out of you

Years of loneliness and isolation can lead to frustration and despair
By Martin Bayne, Published The Straits Times, 14 Jul 2012

PEOPLE my age - I'm now 62 - might go to an assisted living facility every now and then to visit an older family member. But few people in my age group live in an assisted living facility. I do.

Eight years ago, in a wheelchair and after nearly a decade of living at home with young-onset Parkinson's disease, I decided to move into an assisted living facility. I knew what my decision meant. I would be moving into a place where the average resident was 32 years older than I was, and the average levels of disability, depression, dementia and death were dramatically higher than in the population.

What I hadn't calculated was what it's like to watch a friend - someone you have eaten breakfast with every morning for several years - waste away and die. And just as you are recovering from that friend's death, another friend begins to waste away. I can say with certainty that the prospect of watching dozens of my friends and neighbours in assisted living die is a sadness beyond words.

Facilitated ageing is a way of life for a growing number of Americans, more than a million of whom now live in roughly 40,000 such facilities across the country.

During my first few weeks in one such place, I requested a meeting with senior management. I have been both a journalist and a Zen monk in my day, and I like to make sure we all understand one another and communicate well.

The three executives and I met in my room, and the meeting soon turned fractious. I don't remember exactly what the head of the housing board said, but I challenged it.

'That's not fair,' I told him. 'You get to go home every day at 5pm, but this is my home.'

He stood up, pointed his finger at me, and roared: 'This is NOT your home. You just lease an apartment here like everybody else.'

I realised right then that the residents of 'their' assisted living facility, among whom I now numbered, didn't have a voice. We arrive in this, our new society, suddenly disconnected from our past life, possibly ill, often without the comfort and support of a spouse we had 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.

We then can find ourselves silenced by, and subjected to, a top-down management team whose initial goal seems to be to strip us of our autonomy. And it is in this environment that most of us will die.

Something else I soon came to realise was that the administrators who make up the management team play a distinct and dramatically different role from that of the staff members.

Administrators represent the whims of those who own the facility. The staff members - the personal care assistants, the certified nursing assistants and so on - are the heroes for those of us living in a facility. Underpaid, overworked and highly susceptible to work-related injuries, they are the glue that holds together most of the facilities across the US for the ageing. And just as we residents live in 'their' facility, these staff members work in 'their' facility.

I lived in the first facility for eight years before moving to the one I'm in now, and if you didn't know anything about assisted living, you would probably be quite impressed by my current location. It's remarkably clean and attractive; the food is high-quality and abundant; the lawns are manicured. Operationally, it runs smoothly.

But there are a few glaring issues, the foremost being accessibility. Shockingly, many assisted living facilities aren't completely wheelchair-accessible. Sure, there are lots of ramps in these facilities, but at every facility I have ever visited or lived in, the bathroom sink isn't wheelchair-accessible. Just try to shave or brush your teeth when the sink is way up there. You can't.

Where I live now, I'm on the ground floor and fortunate enough to have a beautiful outdoor patio - but my wheelchair is too wide to negotiate the doors, so I can't wheel myself out on to it.

Additionally, spaces that residents would like to have access to don't exist in most facilities. Mine, for instance, has neither an exercise room nor a nondenominational meeting centre for meditation or worship. These might be seemingly small concerns, yet they have an oversize effect on residents' quality of life, especially when you consider that most of us can't leave easily or often.

But the real problem isn't operational or structural. It's emotional.

Most residents show 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 assisted living. It's the result of months or years of loneliness and isolation. It's also the result of burying our feelings and emotions about being surrounded by many demented and disabled neighbours, and by frequent death.

The story I'm telling here isn't just mine. It's one that will resonate with anyone living in an assisted living facility and anyone visiting family or friends there. Were my experience unique, I wouldn't be motivated to write this essay or to pursue the other few, difficult avenues available to those of us working to improve the lives of residents in assisted living facilities.


The writer is the publisher of The Feathered Flounder, a literary journal showcasing the work of people in their 60s and above. This story was excerpted from Narrative Matters in the journal Health Affairs.

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