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

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[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

 

 

 

“The Choice to Die or Live Life as a Ghost”

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Michael Wolff of the New York Magazine wrote an article called “A Life Worth Ending.”   His topic?  The approach that our modern society takes towards aging and death.   His focus?  His personal journey dealing with the healthcare system and his mother.

His ability, through his choice of words, to bring the topic front and center is as rich as the questions he poses in the topic he explores.  For example, read how he describes aging in our affluent society, in which death has become the ultimate frontier to tame and subjugate:

Age is one of the great modern adventures, a technological marvel—we’re given several more youthful-ish decades if we take care of ourselves. Almost nobody, at least openly, sees this for its ultimate, dismaying, unintended consequence: [emphasis added] By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state that persists longer and longer, one that is nearly as remote from life as death, but which, unlike death, requires vast service, indentured servitude really, and resources.  ……

This is not anomalous; this is the norm.

Mr. Wolff writes of the irony that:

The longer you live the longer it will take to die. The better you have lived the worse you may die. The healthier you are—through careful diet, diligent exercise, and attentive medical scrutiny—the harder it is to die. Part of the advance in life expectancy is that we have technologically inhibited the ultimate event. We have fought natural causes to almost a draw. If you eliminate smokers, drinkers, other substance abusers, the obese, and the fatally ill, you are left with a rapidly growing demographic segment peculiarly resistant to death’s appointment—though far, far, far from healthy.

Seventy percent of those older than 80 have a chronic disability, according to one study; 53 percent in this group have at least one severe disability; and 36 percent have moderate to severe cognitive impairments; you definitely don’t want to know what’s considered to be a moderate impairment.

Phew!  What have we done?  How did we go from acknowledging that death is a part of life and there is no way around it to believing that if we only do……then we will live longer and, hey, don’t we want to do that?  Sure, we all clutch at the idea of dying.  It is inherent to our nature.   Moving into an unknown is scary and death is the biggest unknown.  But does that warrant doing everything, at any cost to avoid it?  It really does seem that by doing everything to avoid it, we actually have created a nightmarish extension that includes all sorts of physical and mental break downs and more and more frequent visits to the hospital.

In Mr. Wolff’s case, his mother started to decline physically and mentally sometime in her ’80′s.  As Mr. Wolff found out:

There is a precept here, which no doctor quite spells out: Once it has begun, it has begun; decline follows decline; incident precedes incident. Here’s the medical language: “A decrement in capacity occurs.”

The system has been created that encourages families to follow one course of action after another to delay the eventuality that this “decrement in capacity” will ultimately lead.  And so we are creating a citizenry of individuals who have no quality of life but live on because the natural breakdown of body and/or mind is delayed with round the clock attention (at unbelievable costs).  Pharmaceuticals intervene to prevent the stroke or the heart attack or the pneumonia that might otherwise allow a person who has entered into a state of decremental capacity to leave this world with some dignity.

I lived this with my mother-in-law, a brilliant, vivacious human being who at the age of 93 started to develop memory loss.

Focusing back on Mr. Wolff’s reflections:

From a young and healthy perspective, we tend to look at dementia as merely ­Alzheimer’s—a cancerlike bullet, an unfortunate genetic fate, which, with luck, we’ll avoid. In fact, Alzheimer’s is just one form—not, as it happens, my mother’s—of the ­ever-more-encompassing conditions of cognitive collapse that are the partners and the price of longevity.

There are now more than 5 million demented Americans. By 2050, upward of 15 million of us will have lost our minds.
Speaking of price: This year, the costs of dementia care will be $200 billion. By 2050, $1 trillion.

That is the thing that you begin to terrifyingly appreciate: Dementia is not absence; it is not a nonstate; it actually could be a condition of more rather than less feeling, one that, with its lack of clarity and logic, must be a kind of constant nightmare.

As Mr. Wolff and his family chose to do, so did my husband and I: We put my mother-in-law in a very homey like assisted living facility just before her 95th birthday.  The first year was actually quite good.  The local owners very much wanted to create a home-like environment.  But then they decided to expand which adversely affected their original home.  And like Mr. Wolff, we also learned:

That assistance in an assisted-living facility, even as you increase it and pay more for it, is really not much more than kind words and attendance, opened doors, a bit of laundry, and your medications delivered to you. If there is a need for real assistance of almost any kind that involves any sort of calibration of concern, of dealing with the real complications and existential issues of aging people, then 911 is invariably called. This is quite a brilliant business model: All responsibility and liability is posthaste shifted to public emergency services and the health-care system.

The rate of hospitalization for all other age groups is declining or holding steady, but for people over 65 it’s skyrocketed. The elderly use 50 percent of all hospital days, according to one study. Emergency rooms, …. the land of the elderly, and their first step into the hospital system—where, as Medscape matter-of-factly explains, the “inability to recognize normal aging changes … raises the chances of iatrogenic illness.” Iatrogenic illnesses being the ones caused by hospitals or doctors.

In Minkie’s case, she developed pneumonia while in the assisted living facility.  In the old days, before immediate intervention and antibiotics, she probably would have died peacefully and the horror of her memory loss would not have plagued us for another six years.  But in our modern society, off to the hospital she went, tubes and catheter inserted (I was told this was done automatically because nurses did not have time to take elderly patients to the bathroom every time they needed to go.  Of course, the consequences of stretching the muscles by inserting a catheter — itself a painful procedure — is never addressed by those who do it and the family is not given a choice).

And so we found that for any real care, this was no longer the place to keep our parent.  We were lucky.  We had a friend who was a CNA.  She had just lost her father and had the extra space in her house.  She asked us if we would feel comfortable having Minkie move in.  We said yes.  She lived right down the street from us and so we became the modern model of an extended family.  She and her housemates and my husband and me.  Five people with our friend and us doing most of the care, but all being able to continue with our daily responsibilities without too much taxation on any one person.   Also, at this stage, Minkie was no longer moving on her own, which made her care much more manageable and less dangerous.

Back to Mr. Wolf’s story.  His mother had been living for years, unaffected by a potentially detrimental heart situation.  At some point, she had expressed shortness of breath at the assisted living facility in which she resided and they sent her off to the hospital.  Her cardiologist decided she should have surgery:

…. now that she was showing symptoms that might suddenly kill her, why not operate and reach for another few good years? What’s to lose? That was the sudden reasoning and scenario.

My siblings and I must take the blame here. It did not once occur to us to say: “You want to do major heart surgery on an 84-year-old woman showing progressive signs of dementia? What are you, nuts?”

This is not quite true: My brother expressed doubts, but since he was off in Maui, and therefore unable to appreciate the reality of, well, the reality of being near, we discounted his view. And my mother protested. Her wishes have always been properly expressed, volubly and in writing: She urgently did not want to end up where she ultimately has ended up. She had enough sense left to resist—sitting in the hospital writing panicky, beseeching, ­Herzog-like notes, to anyone who might listen—but of course who listens to a woman who scribbles such notes?

The truth is you’re so relieved that someone else has a plan, and that the professionals with the plan seem matter-of-fact and unconcerned, that you disregard even obvious fallacies of logic: [in this case] that the choice is between life as it was before the operation and death, instead of between life after the operation and death. (emphasis added).

So often, I find that people, myself included, although much less so than the average, walk into their territory (the healthcare industry’s territory) and listen to them spout something that may make no sense, but they are the experts, right?  We nod our heads, and walk out with the decision made.  When my husband had heart surgery, the cardiologist suggested that he start taking Lipitor.  I objected, citing all the side effects.  My husband pointed out that he did not have a history of high cholesterol.  The doctor replied with, “Yes, but you had heart surgery.”  His nurse practitioner added in helpful tones: “Lipitor prevents death.”  (You can imagine how I responded to that statement!).  My husband ended up taking the Lipitor.

As for Mr. Wolff and his story, when they confronted the medical team about the fact that their parent had deteriorated so badly and asked why they had not been better informed of this possible outcome:

Here’s what the surgeon said, defending himself, in perfect Catch-22-ese, against the recriminations that followed the stark and dramatic postoperative decline in my mother’s “quality-of-life baseline”: “I visited your mom before the procedure and fully informed her of the risks of such a surgery to someone showing signs of dementia.”

Six weeks and something like $250,000 in hospital bills later (paid by Medicare—or, that is, by you), she was returned, a shadow being, to 86th Street and her assisted-living apartment.

At the publication of his article, his mother was still alive, still living her shadow existence with occasional moments of clarity.  I doubt that this will ever change.  It certainly did not with my mother-in-law.

Would we have done things differently?  Maybe.  I don’t know.  Would Minkie have chosen to stay alive in a half state?  I don’t think so.  But by the time she ended up in her half state, she was no longer the same person.  We have made advancements in our medical care.  But hand in hand with the advancements has developed this  fallacy that lives should be saved no matter the cost.  And so, I end with Mr. Wolff’s conclusions:

I do not know how death panels ever got such a bad name. Perhaps they should have been called deliverance panels. What I would not do for a fair-minded body to whom I might plead for my mother’s end.

The alternative is nuts: to look forward to paying trillions and to bankrupting the nation as well as our souls as we endure the suffering of our parents and our inability to help them get where they’re going. The single greatest pressure on health care is the disproportionate resources devoted to the elderly, to not just the old, but to the old old, and yet no one says what all old children of old parents know: This is not just wrongheaded but steals the life from everyone involved.

…. My bet is that, even in America, even as screwed up as our health care is, we baby-boomers watching our parents’ long and agonizing deaths won’t do this to ourselves. We will surely, we must surely, find a better, cheaper, quicker, kinder way out.

© Yvonne Behrens 2012

 

 

 

 

 

 

Death in the Family

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My husband died two months ago.  This is the first entry I have undertaken to write since just before his death.

My husband was a warrior.  I would tease him that in a previous life, he had to have been a general in the Roman army who had so many successful campaigns that he was given a governorship of one of the states conquered by Rome where he spent the rest of his days being fed peeled grapes by beautiful slave girls.

In fact, his battle against pancreatic cancer which had metastasized to his liver, was fought heroically and as only a warrior would.

I had a wonderful support system and have not had to face his death alone.  Although Hilary Clinton popularized the African saying, “It takes a village to raise a child” I think it takes a village or community to do everything in life from raising a child to burying a member.

I wonder how people who do not have this support system are able to deal with the death of a spouse.  It is quite overwhelming.  Not the least being that all of a sudden you are facing life alone.  In spite of the fact that I married late in life and so had lived life “alone” for quite a few years before meeting Eric, it still feels alone when a spouse dies.

Grief is funny.  It comes out of unexpected corners and strikes without concern of time, place or circumstances.  For example, I was at the circuit court to register the will and, of course, they asked me for money in order to take the will.  I pulled out the checkbook and found that I would be writing the last check with both our names on it.  That just did me in and for the rest of the week, I was terribly weepy.

As I said, Eric and I married late in life.  I decided early on that I would not marry young.  I feared that I was not mature enough and hated the thought that I would be involved in a divorce with children.  Or maybe I was just waiting for Eric to come into my life.  I have had enough experience to know that there is never just one angle/answer to any situation and often our limited perspectives overshadow what really may be going on.

We were together for 21 years, which is astounding to me.  It does not seem as though it was that long.

I do not see his death as a loss.  I mean, yes I miss his every day presence in my life, but I also continue to feel his presence.  I think about him all the time and really enjoy thinking about him all the time.  Maybe the pain and suffering he went through towards the end allowed both of us the ability to let go.  But I also believe that there is more to life than the one we accept as reality.  For some, it would be referred to as an after life, or heaven (no doubt that is where he ended up), or going from the third dimension to the fourth dimension.  I take comfort in the belief that this was not our first time together and will not be our last time together.

I really enjoyed our life together.  He was a unique personality and very, very smart.  He was kind, sensitive and generous. and, oh yes, one of the most courageous individuals I had ever met.  We both held strong spiritual values, wanted to serve humanity, had a love of travel, and intellectually stimulated each other.  Yes, sometimes we did get on each other’s nerves.  Not often, though.

Since there is nothing permanent in life, since, as a friend of ours is fond of saying, “None of us is gettin’ outta here alive!” what is left is a feeling of gratefulness, a feeling of having been blessed to have spent the time that I did with my extra-ordinary husband.