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Jodi C.
Jodi C.
Survivor

Tracey E.
Tracey E.
Survivor

Lauren C.
Lauren C.
Survivor

Lori K.
Lori K.
Survivor

Liane W.
Liane W.
Survivor

Michael H.


Family & Caregiver

No Caregiver Should Be Alone

The sad truth is that for most caregivers all your friends will be seen no longer.

Not all "Faces of Stroke" are happy ones. My own story, as well as some stories that I have heard in Caregiver Support Groups are stories of despair, fear, and isolation. There are moments in our lives when we realize that everything from this point on will never be the same again. The moment that I realized that my wife had a stroke is one of these moments. Our lives became separated into two parts; before the stroke and after the stroke. My name is Michael and this is my story.

My wife, Diane, and I are both retired engineers. Diane was an industrial engineer and I was electrical. Diane had been ill for many years from an unrelated illness. Our savings had dwindled away and we were forced to depend solely on our Social Security. Nevertheless, we got by well enough and without complaint, at least until one morning in December of 2010. Diane was unresponsive when I attempted to wake her that morning and off to the hospital we went. A right hemisphere ischemic stroke was the cause and it was too late to minimize the damage.

Then began the long days spent in the Intensive Care Unit at the hospital. Weeks went by with little sleep and even less food. Afterwards there were the weeks spent at the Rehab Hospital where a small glimmer of hope arose that maybe there might be some success and some recovery from such a debilitating brain injury. Hope was short lived, however, as I prepared for the homecoming. I needed a hospital bed, oxygen compressor, wheelchair, toilet seat, grab bars, showering equipment, bed tables, canes, and an endless list of medical and personal supplies that are too long to list here. The cost absorbed all our remaining savings.

I applied for Medicaid, of course, but that takes many months to get approved. And when we were approved, there was no reimbursement for all the expenses so far and dubious hope for expenses in the future. A health care advocate had to be hired at our expense just to take care of the endless paperwork, forms, and bureaucratic errors. However, expenses are the least of the problems that I had yet to confront. All of my friends, my family, the church that we attended for over 20 years, and my neighbors all vanished from sight like a wisp of smoke in the wind. I was left completely alone. I am alone still and the pain of isolation is unbearable.

The wisdom of the medical profession is to place her in a nursing home. The truth here is that State funded nursing homes allow up to sixteen patients per Certified Nursing Assistant and twenty patients per nurse. An impossible situation that can only guarantee neglect, certain injury, and eventual death at the hands of careless, underpaid, and overworked attendants. Private pay is out of the question as more reliable nursing home care will cost upwards of $10,000 per month and there is still no guarantee of safety.

I could write a book on the hardships, heartaches, bureaucratic nightmares, and pain of being a caregiver under such adverse circumstances, but experience has proven so far that no one wants to listen.

 

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Display of the Faces of Stroke stories does not imply National Stroke Association's endorsement of any product, treatment, service or entity. National Stroke Association strongly recommends that people ask a healthcare professional about diagnosis and treatment questions before using any product, treatment or service. The views expressed through the stories reflect those of the authors and do not reflect the opinion of National Stroke Association.

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Faces of Stroke

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