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Our home-care system hangs families out to dry

Mar 07, 2008 04:30 AM
Joe Fiorito

As you know from previous columns, Cynthia Xavier is being swallowed alive by ALS. Her legs don’t work. She can’t leave her bed. She gets by on a miserable 14 hours’ home care a week. Want to know what that’s like? Use your imagination.

She is resisting the move to a nursing home; she feels that would finish her off as sure as shooting.

Cynthia is not alone.

A letter from D. H., edited slightly: “My mother-in-law is in a similar situation and does not want to go to a nursing home, but she is fortunate to have a large family to fill in the gaps. She is in her own apartment and presently qualifies for 56 hours of caregiver services. This is only good, however, for 30 days.

“Has anyone ever taken into account what happens if the patient is still alive AFTER 30 days? She may not die within some arbitrary time frame. She may even get better. In the meantime, her family rotates shifts, sleeping overnight, filling in during the day. We are getting tired, stressed out and burnt out and our own lives are on hold.”

The problem of limited access to home care is not restricted to adults. This, from C.R.: “We are users of the home care system because our daughter had a stroke when she was six; that was eight years ago now. We have had to deal with the constant nursing shortage, poorly paid support workers, red tape, incompetent help and rules that seem to try and keep everyone away…”

The system works in theory?

I have a theory of my own: Health care is a leading cause of bedsores.

I know people who think nursing homes are fine and the rest of us should quit complaining. How about this from N.H., who recently put her grandmother into a home:

“I visited my grandmother on a regular basis and was upset every time. I recall the day my grandmother grasped my hand tightly and said, `Get me out of here, please.’ She was shaking and crying. She smelled of urine. I told the duty caregiver. The caregiver said, `She’s a bad girl. She wet her pants so she has to stay in that. She must learn her lesson.'”

My theory? Fire that worker.

Finally this, from T.G.: “My wife passed away in January of 2005; four years from diagnosis to death of the debilitating effects of ALS.

“In my wife’s case, we had the benefit of second-tier supplemental health insurance. … In the end, for a period of about six months, the insurance company covered round the clock nursing support over and above the paltry 14 hours of personal service workers supplied by the Community Care Access Centre.

“The CCAC, under pressure from the insurance company, eventually agreed to supply 43 hours a week out of the total of the 168 hours required. Without supplemental health insurance, we would have been hung out to dry.

“Even I, as a former bureaucrat, have trouble with a system that says YES you can have 14 hours a week and YES we know that it takes two to move a patient from bed to lift chair, or bed to commode, or bed to bath lift, but NO we can’t supply the extra help that we’ve mandated to do the lifting.”

In summary: Smart people who know how the world works still can’t navigate through the health-care system when they need it most. But it works in theory.

Joe Fiorito usually appears Monday, Wednesday and Friday.

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