By Marvin Ross
Last week, I talked about two similar neurological problems, (Alzheimer’s and schizophrenia) that afflict people so I would like to extend that and discuss our different responses to each. With Alzheimer’s, we show compassion while with serious mental illnesses, we show disdain and neglect. Neither condition is the fault of the victim.
Recently, I was power of attorney (poa) for a friend who had Alzheimer’s (AD) and his care in our system was exemplary. His family were all thousands of miles away in various parts of the world, so I was asked if I could take on the role and he was agreeable. His family had already arranged for him to be part of a health group that cared for those with AD and it was excellent. He was matched with a caring social worker, received meals on wheels and frozen dinners as he lived alone. When required, the geriatric psychiatrist visited him and he took part in a day program. He loved the bus rides there and back.
Of course, he refused to admit he had AD and insisted that he had always been eccentric which is not dissimilar to the anosognosia observed in those with serious mental illness.
When it came time for residential care, two relatives flew to Toronto to get him settled as he was very reluctant. He had a progressive residence with a private room and bath in a home like setting with a lot of programming. As is usual with AD, he deteriorated to the point he needed a nursing home but, before that happened, he had to be rushed to the emergency at the University Health Network in downtown Toronto.
Given my experiences with psychiatric inpatient care, I expected problems but was pleasantly surprised that staff talked to me and did not insist on my proving who I was and faxing legal documents to them. More on that later. My friend was being treated in internal medicine and I easily talked to the doctor, the residents and had a teleconference with all of them plus his regular residence doctor, the social worker and the nursing home co-ordinator. I should mention that his doctor from the residence always referred to him as doctor as he had a PhD. It thrilled him.
This was all at the height of the pandemic and I once said to his hospital doc that they must be anxious to free up his bed and get him moved to a nursing home. “We will keep him as long as he needs”, I was told. His nursing home placement was held up by his aggressive behaviour which is not unusual for those with dementia so they decided to try to deal with that at the behavioural unit at the Toronto Rehab Hospital across the street and he was moved there.
They too were open and willing to talk to me but before any treatment could begin, he tried to escape from his wheelchair, fell and broke his hip. He was now moved next door to the Mount Sinai and operated on. Unfortunately, there were complications and he ended up in palliative care where he was shown exemplary compassion and the doctors always kept me apprised.
I should point out that my mother with dementia and in a nursing home was taken to that hospital (a busy University of Toronto teaching hospital) when she broke her leg. Never had a problem with communication with the staff and it was the chief of orthopaedics who operated. He apologized to me for having her wait 12 hours because they had so many emergencies that night but assured me that my mother was kept comfortable. That is something I like to tell Americans who try to tell me how bad our public health care system is.
At the other end of the caring spectrum, we treat those with serious mental illness with disdain and neglect.
Dr. Richard O’Reilly, consultant psychiatrist and Western University professor, recently told Torstar journalist, Kim Zarzour that “If you have a psychotic disorder and lack insight to appreciate you need treatment, you’re quite likely to end up on the streets, abandoned.” Ontario has progressively closed psychiatric beds.
“Twenty years ago, we never had patients lined up in the ER. Now, many hospitals almost continuously have five to 20 patients who have been accepted for a psychiatric in-patient bed but remain in the ER due to unavailability.” He added when a person with severe mental illness needing treatment presents to an emergency department, staff often feel pressured to avoid admission because of an acute shortage of psychiatric beds, he says. “We end up discharging them to homeless shelters or directly onto the streets.”
When it comes to being accessible to caregivers as I experienced for my friend and my mother, hospitals and doctors hide behind privacy. The police took Andrew Bryenton to a hospital but his mother had difficulty finding someone who would talk to her. Neither the ER manager or social worker would call her back and she wasn’t even sure if her son was still in hospital. I told her to call the switchboard, ask for patient information and ask about Andrew. That is how she found out he was still there. But, he was discharged after 72 hours without even speaking to the doctor and with no one calling to let her know he was shipped back to the street.
Calling the switchboard was something I learned when my son was in the psych ER and no one called with updates. I called and was told there was no patient by that name there and when I asked where he was they said we can’t tell you. The switchboard put me through to his unit but no one would talk to me so I called the on duty charge nurse for the hospital and they did call but would tell me nothing.
To the best of my knowledge, they did not talk to his regular psychiatrist who was in the same building and all that failure led to them losing him. When the police finally found him, he was in terrible shape and I had a rather intense discussion with the VP of mental health services and the chief of psychiatry. Fortunately, he recovered and is in pretty good shape today but constantly fighting with the bureaucracy is draining. If we want adequate care, that is what we have to do.
I mentioned that my AD friend had very good care in the community and in his residential care which is something that you don’t find for serious mental illness. Patients are often discharged before they are sufficiently stabilized and either have to live with exhausted, aging families or in substandard lodging. Today, with a housing shortage and the lack of financial supports paid to those who are disabled, the ill in the community are lucky to even be able to afford substandard housing.
People need meaningful activities and they are few and far apart these days and there is little to no vocational rehab for anyone. What do people do? Not a lot. The outpatient clinic at our local hospital has a few activities but it is hard to get to. A popular one is a walking group and what could be more fun than a bunch of mentally ill people wandering on the street in a group? There is also a peer group where I live but their monthly calendar is two months out of date and has things on it like a colouring group.
With so much time on their hands with little or no meaningful activities, is it any wonder that a lot of people turn to drugs to give them some pleasure? But then, when that happens, the drugs take over.
It should be pointed out just how many people suffer with these two conditions that are treated (or not treated) in this country. I’m not trying to compare one against the other and asking for preferential treatment but to point out that these are two significant ailments. The incidence of schizophrenia is 1% of the population over 10 years of age. There are 35 million Canadians in that age group so 1% is 350,000 sufferers of schizophrenia.
Dementia is a disease of age and 14.3% of the over 65 population develop dementia. The population who are 65 or older is 7.3 million so the number of those with dementia is about 105,000. This age group is growing so the number of those who will develop dementia is growing but the number of those with schizophrenia is three times as many.
The best example to end this with was an observation that an advocacy friend noted a few years ago. He was the caregiver for his brother who had schizophrenia. For many years, his brother lived in a residential setting called a home for special care and my friend was constantly fighting with them because of the very poor level of care. There are some standards but they were often not followed so that the poor residents were fed supper at 4 PM likely because it was more convenient for the staff.
His brother developed Parkinson’s and ended up in a nursing home. The quality of care was vastly superior he found and both he and his brother were treated with respect.
The families of those with serious mental illness are not asking for anything exceptional but rather to be treated and to have their ill relatives treated with the dignity and care our health system treats others.
Is that too much to ask.