A Room With A Grim View: The ‘Ambient Despair’ That Marks Life In Assisted Living

[Note: I am putting this article in the boomer section of my blog because we are at that stage when we can still do something to instigate change.  But we will only put the time and energy that is required to implement the change if we look at the problem squarely in the face, something our generation does not have the tendency to do.]

I am not a proponent of “retirement” communities although I do understand that certain circumstances do require it.  One might be getting on in years and can no longer do for oneself.  One’s mental or physical self starts to become frail and so one’s needs for assistance might increase.  If one has no family or one’s family lives in another state and one can no longer maintain one’s home, the institutional care is an option.  On a more positive note, “retirement” communities might be a place where one’s recreational and social activities might increase.  And one has the security of knowing that there is 24/hr nursing care.

Our society and the advertisers certainly do everything to encourage us into believing that this is an attractive alternative to staying at home.

One of the more glaring disadvantages of the retirement home is its segregation: the “old” people’s home where n’ery a person under a certain age lives.   Everywhere you turn, you see someone your age or older; except for the bouncy activities coordinator, urging you to participate in musical chairs or something.  Also, as you become more and more frail, the individuals with whom you interact most often are those caring for your daily needs.  These are the individuals within this community who get the least compensation for what they do and so, in turn, are the least constant.  Thus you are continuously being handled by strangers.  And, because of anti-discrimination laws, now there are male CNAs.  Imagine being a frail 90 year old Southern woman (to really make for the extreme case) and having a large African American male CNA enter your room telling you it is time for you to take your shower.  The cultural disconnect that this scenario entails is truly unfortunate and although not necessarily common, has occurred.

Also, for the most part, once one enters a “retirement” community, one’s sense of self starts to become eroded as one confronts choices made for oneself without being involved in the decisions.  This can be children making decisions about their parents and dropping them off at the facility or it can be experienced after arriving at the facility.

I recently read an article by a gentleman, Martin Bayne (mkbayne@alum.mit.edu), who wrote about his own personal experience in such an environment.  He has early onset Parkinson’s disease and so has found himself in a home at slightly a younger age than most.  However, following was one experience he had:

During the first few weeks in my new surroundings, I requested a meeting with the facility’s senior management. I’ve been both a journalist and a Zen monk in my day, making me someone who likes 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 chair of the housing board said, but I challenged it. “That’s not fair,” I told him. “You get to go home every day at five o’clock, 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 realized right then that the residents of “their” assisted living facility, among whom I now numbered, didn’t have a voice. Those of us there, 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.

Besides having one’s ability to make decisions or play an active role in the decision making process of one’s environment removed, you enter into an environment where more than likely you do not know anyone.  More eerily, although no one knows each other, everyone recognizes that this is the last stop, so to speak.  Both of these factors have got to take their toll on one’s psyche.  Mr. Bayne chose to move into a facility, knowing that those surrounding him would be much older than he.  Again, quoting Mr. Bayne:

  1. People my age—I’m now sixty-two—might go to an assisted living facility every now and then to visit an older family member. Facilitated aging is a way of life for a growing number of Americans, more than one million of whom now live in roughly 40,000 such facilities across the country.

But few people in my age group actually live in an assisted living facility. I do.

Eight years ago, while still in my fifties, 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’d be moving into a place where the average resident was thirty-two years older than I was, and the average levels of disability, depression, dementia, and death were dramatically higher than those in the general population.

What I hadn’t calculated, however, was what it’s like to watch a friend—someone you’ve eaten breakfast with every morning for several years—waste away and die. And just as you’re recovering from that friend’s death, another friend begins to waste away. I can say with certainty that the prospect of watching dozens (at my young age, perhaps hundreds), of my friends and neighbors in assisted living die is a sadness beyond words.

Mr. Bayne continues with the saddest part of his evaluation:
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 usually 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.

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.

To read more of Mr. Bayne’s article about his experiences in an assisted living facility, please go to

1Martin Bayne (mkbayne@alum.mit.edu) is an advocate, author, and publisher who lives in an assisted living facility in Center Valley, Pennsylvania.

But Mr. Bayne doesn’t stop at just describing the realities of living in an Assisted Living Facility.  He wants to try and change the realities of assisted living life.  And so he continues:

Living with Parkinson’s disease has led me to realize that the quality of my life depends on the future viability of the long-term care system in the United States. So, too, does the quality of life for the millions who are similarly situated—the chronically ill, disabled, frail, and elderly individuals who are unable to accomplish those defined activities of daily living. We need better, more humane places to live in that allow us to preserve whatever health and happiness we have left. We also need to be surrounded with more compassionate, higher-quality, yet still affordable care.

To create genuine long-term care reform, we as a nation need to perform a series of activities. We must understand the full nature and scope of the problem, including knowing the benefits that are and aren’t available under skilled, custodial, and intermediate long-term care. We have to acknowledge the full range of policy options that exist and create a workable way to finance care using a mix of public- and private-sector support. People will also have to acknowledge their personal responsibility for leading purposeful lives, a part of which means considering the costs of long-term care and planning ahead for how to pay for them. In short, we must all be held accountable for ourselves and for the whole.

Until the totality of that approach is under way, we’re in trouble. I’m tackling the part that I can. Difficult as it sometimes is, I’m actively trying to be accountable for myself, my fellow residents, and everyone who lives in assisted living facilities.

Earlier this year, I became the publisher—Paul Soderberg in Arizona is the editor—of the first literary journal to showcase the work of people in their sixties and older. Published online and without charge, it’s named The Feathered Flounder. You can read a copy at http://thefeatheredflounder.com. As I explained in my first publisher’s note, the literary journal “is born in the imagination of those with the benefit of having accepted the unexpectedness of aging…. It is the nature of creativity.”

I hope others—especially policy makers—also will call on the nature of creativity as they wrestle with the realities of assisted living facilities and of aging in general. I’ll keep doing what I can: being active in my community, publishing, and writing about the view from my wheelchair from inside an assisted living facility. Others need to go about tackling the systemic and looming issues for an aging nation.

I applaud Mr. Bayne’s initiative.  He is still at an age when he can work for change, unlike many of those with whom he shares a space.  The fact that he is trying is commendable.  Hopefully, we will all do our part.

© Yvonne Behrens, M.Ed  2013

 

 

 

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