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Bureaucratic red tape hurts home caregiver

My husband is suffering from A.L.S. (Lou Gehrig’s disease). It is five years since he was diagnosed and 18 months since he spent two months in the Guelph General Hospital undergoing tracheotomy surgery. Whilst in the General, he was in the I.C.U. ward and had the best care he could possibly have had.
In addition to caring for him, the respiratory therapists taught me how to take care of him on his return home.
Mine is a 24/7 caregiver position that I find completely fulfilling. I have tried to maintain the standards of Guelph General in our home, and friends joke that I have my own I.C.U. ward right in our living room.
Community Care Access is providing support with nurses and personal support workers who are employed by Bayshore. All these people who visit us (four each day) we have found to be dedicated, efficient and caring and, between them and our family and friends, the quality of life that Keith and I are living is greatly enhanced. It was my choice to care for my husband at home, and I would recommend it to anyone trying to make that difficult decision of what to do when a loved one becomes handicapped.
From a financial point of view, it takes much stress off the health care system in which we are constantly being informed cutbacks must be made.
It is these cutbacks that are a bone of contention to people like me. We are given the run-around because of rules made by officials of organizations such as the Community Care Access Centre, Bayshore or government.
They make these rules about procedures of which they know very little. Nurses who are specially trained to care for difficulties in their patients are spending precious hours each day filling out endless, useless forms for the benefit of a bureaucracy that often has no medical training whatsoever and is dedicated only to the almighty buck.
Cutbacks, if necessary, should start at the top, not on the supplies of clients. Special dressings or creams to protect delicate skin from infection are hardly comparable to the pay scales of senior health system officers, many of whom receive over $100,000 annually. We need to look responsibly at the pay scales of dedicated Community Care Access nurses and personal support workers (who go out in all weather to provide help for palliative people being cared for diligently by families in the community), so that all of them can afford safe transport and not be forced to ride bikes or walk in horrible conditions.
As my husband’s main caregiver, I am ultimately responsible for his well-being and should be trusted to assess his needs, without hindrance from some paper-pusher who decides I don’t have the right paperwork to receive his supplies.
All this pettiness is the biggest stress I have to cope with in my new chosen career. I feel that it is a major reason why families decide to leave their loved ones in facilities, rather than taking them home.
I thank God every day that despite the odds, I feel I’ve made the right choice, but I wish I could be spared the nightmare of bureaucratic obstruction.
Rosalind Slater

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