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I could have stared out the window - The Thin Edge of Dignity

Caregiving.nothing in return



By Dick Weinman

2005 sucked.

In January, I committed my wife, Ginny, to Lydia’s House, an Alzheimer’s facility, some twenty miles from our home. I had been her caregiver in our home for seven years. As is often the case with home caregivers, the experience made me an emotional wreck. I had never been a pill taker; now I was on Xanax, Ativan, Celexa, Citalopram, Motoporal, Lisinopril; I learned new groups of medications, like SSRIs, and all the “pams.” I became a great conversationalist in coffee groups talking about Dementia, High Blood Pressure, and other …heart aches, and natural shocks, the flesh is heir to.

January, 2005 was not only the beginning of the new year, but also - literally - of the wreckage of my life. Seven years after placing Ginny in a “home,” my Odyssey mini-van and I met a cement mixer truck head-on. The truck survived.

My vehicle was squashed into a tangle of steel, the front half a gaping hole. The steering wheel and parts of the dash board hung from the space where the driver’s door once was. The vinyl seats, springs and wires, dangled from the Swiss cheese chassis, like the innards of a body blasted apart by a terrorist bomb.

Thanks to seat belts, I wasn’t strewn in the street like my car. But the “Jaws of Life ” had to cut me out. I didn’t manage to escape the fire, though; I am left with patches of white, where skin was taken for grafts to cover the burns.

I was broken – up, down, and around.

But thanks to the doctors and nurses of the Trauma Team of the Oregon Health Sciences University, my body was fixed. Most everything that could have been broken, fractured, torn   had been - I don’t dare to spell the Latin names. Muscles lost their bindings; tendons and ligaments had been disconnected and strewn about under the skin. Wrecked as I was, I was whole - although the nurses in the ICU referred to me as Humpty Dumpty.

         Fortunately, my head didn’t need fixing. The only injury that can be noticed is a one inch dent in my forehead. (Thanks be to airbags!)

2005 ended with the impossible – a broken body for me. A broken mind for Ginny.

2006 was the year to start the possible.

The first step was to fix my body. Doctors inserted metal plates to connect my broken bones, tied together the body parts, and repaired the fractures.

I improved. I moved upward into the bright light of wholeness. Progress for me meant a continual fix. Progress for Ginny meant continual degradation, movement downward into the darkness of dementia. As I saw the possibility of my wholeness and functionality, I witnessed her inexorable deterioration and destruction. Our nearly sixty years of marriage ended eight years later, on December 13 th, 2013.

After living comatose and supine for several months, I learned to raise my upper body and sit in place at least fifteen seconds without falling over. Then I learned to scoot down on a board from the side of the bed and transfer from bed to wheel chair. As time went on, my body re-learned how to stand. Then the inevitable – to take a few steps, holding on to the sides of a parallel bar. Although most of my travels now are in a wheelchair, I can walk short distances.

There was one more ledge to climb before I could approach independence: I needed a place to live. At seventy-three, one year following my accident, I entered an Assisted Living Facility – or ALF.

But I found dependency.

I didn’t know what it meant to live in an ALF, a congregate, ordered, smoothly oiled, and systematically regimented, life flow. I learned that my free spirit didn’t fit in. My freedom and individuality were constricted. I was room 108.

In the beginning of my new life, like many people in my ALF, I sat in my room and stared out the window. I saw people on their bikes - I used to cycle as my means of transportation and exercise. I saw people running - I had run daily, ran 10Ks and marathons. And had been a triathlete I mourned the reality of never doing that again.

I also pondered my accident: I had been dead, and was brought back to life. I had been broken, and sewn back together. I was repaired – bodily. I faced my choices: I could weep over what I couldn’t do, or I could seize upon what I could do.

I had been a writer and a professor. So I began to write about my life at an ALF. Perhaps my writings could teach others about ALF life, including the professionals who worked with elders and the disabled. It turned out, they did. The essays were used in professional development, in teaching workshops, in college classes.

I transformed incidents that happened to me or I witnessed, into vignettes of living the dependent life; I was honest, and critical, but identifying the absurd and the humorous. As one reader said, “I would have cried, if it wasn’t so funny.”

Eventually, my pieces became a blog, posted twice a month by AARP-Oregon.

While ideas flowed from my observations and imagination, writing – or actually typing - did not easily occur. My hands had been only partially fixed: the left hand was useless; my right could move and grasp, but my fingers were stiff and curled like a partial fist. I couldn’t straighten them; thus I couldn’t type.  So, I adapted my writing to my condition: one stroke at a time. I wrote key-by-key, with a green, rubber T-shaped tool, recommended by my occupational therapist: Chewy Tube (http://chewytubes.com/) It is normally used to assist people to chew, or as an improved baby pacifier.

I held it in my right fist, striking one character after the other: the flurry of ideas that spilled from my imagination slowly and carefully turned into words.

My blogs have become a teaching tool for the Oregon Department of Human Services, and advocacy groups seeking to improve the quality of living of elders in ALFs and Nursing Homes. As a resident, myself, I could present the perspective of my life; to reveal what the public, the adult children who place their parents in such facilities, didn’t see.

Not only did I use the “pen” in my new career, I created a video documentary, The Thin Edge of Dignity, which describes my life in an ALF. It has spread around the country, used by the Ombudsman of each of the fifty states. Each Ombudsman and her/his professional staff and volunteers, are advocates for elder rights. The video is also used in college classes, as continuing education for LTC professionals, and, from the responses on You Tube, a wide swath of the general public.

And, despite being in a wheel chair, I have flown around the country and spoken at regional and national conferences. I was selected to participate in the regional meeting of the White House Conference on Aging (WHCOA), leading up to the meeting in Washington, D.C.W

The active and committed life I lead, as an elder won me placement among a select group of American elders, recognized by the National Association of States United for Aging and Disabilities (NASUAD) and chosen, among the elders from each state, to be the one person from Oregon, to be listed in 50 Fabulous Older People, a publication celebrating the 50 years of the Older Americans Act.

And these achievements were all because of that accident (?) which left me in physical disrepair.

My year-long ordeal in hospitals, nursing facilities, rehabilitation clinics, and living in a Long Term Care facility, I have led me to a new career: I remain a teacher, but the classroom and the students have changed.

More important than traveling a new path, I have developed a new perspective: strangers’ random acts of kindness have opened my eyes to the goodness of people –even if they took only a fraction of a moment to open a door, shove a chair out of the way in a crowded coffee house, remove my coat in a hot room; old friends’ committed acts of kindness have helped me live my former free-spirited life. I see the unseen undefined connective bonds between friends – between people. I am in place to make a difference, help form a new paradigm for the way old persons live in the institutions into which society shelves us.

No window gazing for me!

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