Right To Dignified Life

Carol Carr, 63, wife and mother of 3 son's with Huntington's disease, was a frequent visitor to SunBridge Care and Rehabilitation Center in Griffin, GA where sons Michael Randy Scott, 42, and Andy Byron Scott, 41, lived for the past four months, lying side-by-side, beset by painful bedsores, brains so wracked by disease that they were reduced to mumbling incoherently. She was no stranger to nursing homes, having visited the older son in one for about 10 years, the younger for four years.

Their father, Hoyt Scott, deteriorated from the same thing, initially sick in 1976, he spent from 1983 to 1995 in a nursing home suffering "…a long, agonizing death, years and years of just sitting in the bed dying, and they were doing it, too," said their younger brother, James Scott, whose own Huntington's disease had not advanced as far as his brothers.

Huntington's robs physical and mental ability as it progresses, ultimately leaving those with the disease unable to care for themselves. Symptoms typically begin to appear between ages 30 and 45. The disease has no effective treatment. An estimated 250,000 Americans have Huntington's or are at risk of inheriting it from a parent.

Carol Carr was mentally exhausted from years of dealing with the disease in her family. Family members expressed concern, knowing it was just a matter of time before she cracked from pressure and seeing no way out, fed up, and in desperate measure, she, went into the room holding her sons in filth, and shot them in the face and the neck, before walking to the lobby of Sunbridge, and sitting down on a sofa awaiting to be arrested. She now faces two counts of malice murder with additional charges pending.

James Scott, said his mother "shouldn't have had to go down there every day, changing them and doing the work for the nursing home. It seemed like every time one of us went down there, one of them was just sitting there in pee. We kept having problems with the nursing home, getting them to change their bed linens. We had a big fight with them two weeks ago, trying to get them to help. They left them in there soaking wet," he
said. "We went down there Friday, and it was the same thing."

Last December SunBridge nursing home was cited as one of Georgia's most chronic violators of state staffing requirements. In 2000, inspectors found that the facility placed residents in "immediate jeopardy" by, among other things, failing to properly treat bedsores. In some cases, the staff was not even aware residents suffered from the sores, inspectors said.

The federal government has imposed more than $100,000 in fines against the SunBridge-Griffin facility as a result of poor care, according to records from the Centers for Medicare and Medicaid Services. Eighteen staff members were on duty at the 140-bed facility when the shooting occurred Saturday night, he said.

Carol Carr felt it would be better for her to kill 2 of the 3 sons she has because of the quality of their lives living in nursing home care. The 3 boys even took out Living Will's after their father died stating they did not want to sustain their lives if living was to be in a nursing home facility. I got a sense that the family was more scared of the nursing home environment than the debilitating effects of Huntington's disease.

It reminded me of Larry McAfee, a Georgia high level Quad, who battled for the right to die being tired of living years in a nursing home. A huge litigation arose between sides of those who favor choice and dignity in long term care and those who favor individual, physician, and States rights to decide euthanasia issues. In the end, it was found out that McAfee, in truth was fighting for his option to live where people treated him as a person, an individual human being with the right to decide decisions concerning his life. He didn't really want to die. He just didn't want to live in a nursing home where he felt neglected; a place that would not even provide him a pen to scribble his thoughts. He won his right to community services and lived many more years happily involved in living.

I happen to be one of the lucky ones on the outside, blessed by circumstance. This is why we need MiCASSA (Medicaid Community Attendant Services and Support Act) to become law, so individuals can face disease, age, and disability with a clear knowing that their last years will be of comfort and resignation, worry free of neglect, abuse, and enduring pain.

Statistically nursing homes keep staff low to increase profit and cover residents at the bare minimal, some are going to get neglected bad care, some are going to have bed sores, some are not going to get care to sustain lives in a healthy quality, some are going to die, and some are going to die miserably. 14 staff members cannot properly care for 140 residents any day. Care is good only if someone from the outside is routinely looking in.

If our government would just decide to let the money follow the people, empowering lives to choice and interaction in the larger sphere of relating with world, Carr and many others would have been able to hire assistants to help maintain and preserve the dignity of their loved ones lives in their own homes. Although Carol Carr is responsible for her sons deaths, I blame legislation and current law for the deaths of millions and those who suffer now. If community based services was already fully instated as an alternative to institutional placement situations such as the Carr incident and other horrific unfolding may never have had to happen. God help us all.