In my presentation to the Select Committee on Mental Health, September 8, 2009, I made a comparison between the people with severe dementia and Alzheimer's Disease and  those with schizophrenia. I pointed out that we do not allow granny to refuse treatment and to become homeless and live in a refrigerator box. It is recognized that she (or grandpa) are not capable of making an informed treatment decision so we treat them anyway. I wondered why we do not extend that same concern and compassion to those with serious mental diseases like schizophrenia.

I wanted to expand upon that comparison in my presentation but I did not have time so I will do it here. It is a very revealing comparison.

My mother spent over 20 years in a nursing home in Toronto and. in all that time, I had no complaints whatsoever about her care. The only irritation was that the home kept calling me to see if I had any complaints. The staff were exemplary and performed well above what anyone could hope for. On one occasion, my mother was transported to hospital because she re-broke her leg. She forgot that her leg was fractured, tried to use it and made the fracture worse.

Before I could get to Toronto from Hamilton, she was operated on. Given her level of dementia, I was surprised. The surgeon chuckled and said that he asked her if she knew why she was in hospital and that she needed surgery. She said yes in front of another doc and that was all the justification they needed for consent. “Of course”, the surgeon said, “we knew that 5 minutes later she would not even know where she was but that was enough for us”.

Dealing with the mental health system in Ontario for the past 14 or so years has been a totally different experience. Had I not had the knowledge that I do have as a medical writer and a fierce advocate, my son would not be doing as well as he is. He graduated from two college programs and works part time. The only group that I have found to be consistently caring and compassionate are the police. That is not to say that we have not had some very good, caring and competent medical staff but they are few and far between.

The best example of the differences between the two systems is to tell you of the experiences of a friend who has looked after his brother with schizophrenia for many years. The brother just went from a home for special care (a residence for the seriously mentally ill) into a long term care facility (designed for the elderly and the chronically ill).

My friend (let's call him Bob), has done nothing but fight with the home and the staff and doctor's for his bother (and let's call him Fred). Fred and the other residents were given dinner at 4:00PM every day even though the rules state that it should be later. That was, of course, done for the convenience of the staff.

For a few years now, Bob has been pointing out to the doctors and the staff that Fred (in his 50s) is exhibiting Parkinson's symptoms. This has been pretty much ignored although the diagnosis was confirmed long distance by two psychiatrists that Bob knows.

Fred developed breathing problems and the home called Bob to tell him that they were calling an ambulance for him. Bob picked up Fred and took him to the emergency himself. The ER staff wondered why Fred (who had pneumonia) was on some of the medications that he was on. Bob didn't know but decided to find out. He took Fred to the family doctor and asked. The family doctor had no idea either and offered to remove Fred from the meds.

Bob asked the doc who prescribed those drugs. The records showed it to be the psychiatrist. The family doctor just religiously renewed the prescriptions. “Could you please call him and find out why he did prescribe them”.

“No” said the family doc, “it's not my job”.

So much for the concept of collaborative care between family doctors and psychiatrists in the care of people with schizophrenia that is being touted in Canada.

Bob called the shrink and left a message that he wanted to know why Fred was taking them. A message back from the shrink's secretary was “he cannot tell you. You are not the formal caregiver. Your mother is”. Bob explained that his mother is 85 and not able to do that but the psychiatrist still wouldn't talk to him.

Exasperated, Bob did the paper work to change the caregiver from his mother to himself. He notified the psychiatrist's office of the change but the psychiatrist still wouldn't talk to him.

Meanwhile, Fred fell and broke his hip. As this  was physical problem, he got non psychiatrists including an orthopedic surgeon and a neurologist for his Parkinson's to care for him. The neurologist actually talked to Bob and was very informative and helpful. Fred eventually got transferred to a long term care residential facility (nursing home) where the conditions were vastly superior. The staff, Bob finds, are friendly, caring and considerate. A far cry from what he and Fred endured for so many years.

Why? Fred is still Fred only physically worse.

For more stories about mental illness in a manner that documentaries and scholarly works cannot tell, please visit.