Archive for category: Assisted Living

THINKING THE UNTHINKABLE

16 Aug
August 16, 2014

 

buzz

 

With the tragedy of Robin Williams still fresh in my mind, I want to share something with you.

Suicide saved my life.

I mean no disrespect to the surviving family with this statement, nor do I seek to make light of another’s suffering. I’m simply recounting my experience.

In 1995, at the age of 45, and in the ascendancy of my life professionally, socially and spiritually, I was diagnosed with Idiopathic Parkinson’s Disease.

Today, nearly 20 years later, I look back in astonishment at the last two decades and wonder how I managed to not only survive, but to actually grow emotionally and creatively. Make no mistake: Parkinson’s is as ruthless as it is cunning – always searching for weakened neurological conduits and components; taking every opportunity to enslave me psychologically; making it more difficult to live with dignity and purpose.

How have I survived? I decided to fight. I made a covenant with myself, vowing to never let Parkinson’s get the upper hand.

And what is that upper hand? It’s attitude. It’s a focused resolve to live my life fully and joyfully, in service to my fellow man, regardless of how I might feel at any given moment. Does it always work? No. I fall down, literally and figuratively nearly every day. Yet, I don’t compound the falls with self-punishment. I simply get up and continue the journey.

And what do I  say about Mr. Williams? I say I can’t possibly imagine what life would be like with this disease AND a difficult marriage, a substance abuse struggle, the stress of fame, and the battalion of demons that often follow genius.

Have I ever contemplated suicide?

I never needed to.

Just knowing I could “opt-out” of the dark abyss of depression that is so often a component of Parkinson’s, was enough to prevent the act of suicide itself.  Yet, don’t for a minute think I was able to side-step the abyss – 18 ECT or “shock treatments,” 6 years of cognitive therapy, and 233,000 pills later, I’m still struggling with PD and my loss of the activities of daily living. (I’ve always said the true test of humility is having to ask a perfect stranger to wipe your behind.)

The circle now complete, we find ourselves back where we started: suicide.

My vision of the Creator, as insignificant as it is, does not include a punitive and vindictive father.

I choose to believe that at this very moment, Mr. Williams is enjoying  a ” Peace that passeth all understanding.”

The same Peace I wish for you.    Martin Bayne

“The Ideal and the Actual, Like a Box All With Its Lid”

02 Jun
June 2, 2013

buddha

I received the following letter yesterday:

Martin,

I came across your article in the Washington Post describing what it’s like to live in assisted living when you’re much younger than the average resident. My mother was diagnosed with Parkinson’s just over a year ago, and she has terrible fatigue and weakness. She is 68. Just a few years ago, she was my #1 helper for my newborn daughter, active, driving, taking the bus and train from the suburbs to my home in Chicago. She has recently decided that she probably cannot continue to live on her own. She feels too weak or afraid to venture out of her apartment, and she has some in-home help and meals-on-wheels during the week.

We don’t have the means to afford assisted living over the long term, but I want to commit to paying for a year at a facility to see whether eating good food and working with others toward the goal of being in the best shape possible will enable her to live independently again. Are you aware of any assisted living arrangement for folks with Parkinson’s’ where they actually try to improve your mobility, health, and independence, and not merely try to manage your decline safely? We experienced the ugly side of skilled nursing after a fall last summer, and I am determined to do my best to keep her away from that for as long as possible.

 Thanks so much for reading. And kudos to you for being out there and speaking the truth.

I was particularly struck by the author’s desire “to commit to paying for a year at a facility to see whether eating good food and working with others toward the goal of being in the best shape possible will enable her to live independently again.”

I replied, “Save your money. We’ve not yet evolved to the standards you desire and your mother desperately needs.”

It was then I remembered a line from a Zen Buddhist scripture I would chant each morning when I was in monastic training. “The ideal and the actual, like a box all with its lid.” Loosely translated it states that our innate desire to seek perfection – whether in a monastery or the secular world – is tempered with the reality of our own humanity. But that doesn’t mean we abandon our commitment to excellence.

Eldercare, in its current iteration, is fraught with traumatic challenges. And yet the Japanese Kanji character for “tragedy” also means “opportunity.”

Ball’s in our court.

THE MACHINE THAT ATE MY GREAT-GRANDMOTHER

24 Apr
April 24, 2013

Lorna-Gobey_1589754c

I’m sure most of us have heard at least one grueling story recounting the horrors of an innocent farm hand who accidentally caught a loose piece of clothing in a hay baler or perhaps it was a seed planter built completely of Ginzu knives. The story invariably turns ugly in the second paragraph, and by the end — after thrashing, yanking and terrifying screams — we’re left with a shirt collar and a prequel for a recurring nightmare.

Thank God this is not one of those stories.

In fact, to be completely honest, my great-grandmother was not actually eaten by a machine. She died of complications of pneumonia and heart failure. But that makes for a slow-witted title and a bored reader.(Or a prospective reader who skips over my story entirely! I can assure you, this does not sit well with the Pulitzer Selection Committee.)

Fortunately, I’m a savvy, sophisticated writer, and, thus, am allowed to use bait-and-switch headlines. We call the pick-and-lock sets that give us that extra “literary license”: metaphor, simile, euphemism, and allegory.

Back to G-G. The last time I saw her — the woman who introduced me to incense, Pecan Sandies and comic books — she was in a skilled nursing facility — restrained in a crib-bed, with sunken eyes that reflected her pain and terror.

That experience haunted me for the next half-century. And then there was the diagnosis of Parkisons 19 years ago. This is my eleventh year as a resident in an assisted living community. I live every day surrounded by more death, despair, disability and depression that most see in a lifetime.

But the days of the patient restraints are all but over, and I honestly believe the quality of life in Institutional Aging Communities is improving every day.

Incremental victories. A future with hope.

 

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

12 Jul
July 12, 2012

 

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.  - Martin Bayne

link to full article

 

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