Category Archives: Caregiving

Political Correctness and Medicine

By Marvin Ross

I always thought that the only area of medicine that applied absurd political correctness concepts to the detriment of those needing help was in the treatment of those with serious mental health illnesses. I was wrong. And note that I am not being politically correct when I say mental health illnesses rather than mental health issues and problems.

Readers of this blog probably need no introduction to one of the main deterrents to treatment for people who are ill and do not know they are ill. In most jurisdictions in North America, it is hard to hospitalize someone against their will when they are very ill because we bend over backwards to defend their rights to not be hospitalized. Better to let them live on the street or be in jail than to force them into a medical institution.

Sadly, Ontario goes even further by allowing someone who is hospitalized involuntarily because they pose a danger to themselves or others to then refuse the treatment that will enable them  to get well. Consequently, there are people in hospitals for years left sick and untreated because we respect their right to not take medication.

It turns out that we apply the same stupid rules to those with Alzheimer’s. In Ontario, at least. A number of years ago, I arranged for my mother to go into a nursing home because she had dementia. She had been assessed at a geriatric facility in Toronto described as “a global leader in geriatric residential living, healthcare, research, innovation and education, with a special focus on brain health and aging”. She did not have Alzheimer’s but dementia which was visible on MRI studies of her brain.

As a result, I had no difficulty finding a suitable nursing home for her. She was not happy going into it but she did become a long term resident for probably well over 20 years, enjoyed her stay and was well cared for. It was probably the mid 1980s when she went there.

Fast forward to today and I am the power of attorney for someone with Alzheimer’s as his family is spread around the globe with no one locally to look after his needs. The disease has robbed him of his ability to have any insight into his diagnosis much like anasognosia for those with serious mental illness. His Alzheimer’s was diagnosed by a leading Toronto hospital affiliated with the Faculty of Medicine at the University of Toronto. He has been assessed countless times with the standard mini mental status exam and it is obvious talking to him that he has dementia.

But here is the thing. He is not capable and while he lived alone, he had to have substantial support at home and he was going to a day program for those with dementia. When a spot opened for him at a very good home for dementia patients, we arranged for him to be admitted. He refused, of course, and as his power of attorney, I was worried about moving him and selling his condo. I spoke to the social worker at the geriatric unit who told me that his test scores were bad and that if I listened to him and did not have him placed, I would be remiss in my duties.

Two members of his family flew to Toronto and had him placed there. He got used to it and is happy and safe.

The problem for the future is that the home is not capable of providing intensive nursing care so their residents will eventually need to be moved to a nursing home. With the aging population, there is a shortage of these beds and a long waiting list. Beds in acute care hospitals and dementia homes are held by people who need nursing home but are occupying beds until a place opens up in a more appropriate setting, As this individual is starting to deteriorate, I tried to fill out an application for a nursing home to prepare for his future needs.

Turns out that is now complicated. Ontario has a bureaucracy called the Community Care Access Centres which co-ordinates home care and placements. It is a huge bureaucracy which no longer exists by name as it was merged with another large bureaucracy but the functions are there. My charge has a case worker who authorized some minimal home care for him and did periodic assessments. I called her to get an application and left a voice mail.

Next day, I received a call that they cannot send me an application because his file is inactive and I have to start intake all over again. It will only take a few minutes and I was transferred to someone else who took down the information they already have. I was told I would get a call to arrange a new assessment. Another one.

I then got a call from someone who I could not understand on my my voice mail but I did get the phone number and extension. I fully expected the person who called to answer but no, I got someone else. She had no idea who called me or why but found the name of the case manager who would call me. When I did get to talk to the case manager, I was told that she must do an assessment because his last assessment was a year ago and his status might have changed.

Of course it has, I told her. He has Alzheimer’s which does not go away and is progressive. In the past year, he has gone to living alone with support to needing a home. He now has a small GPS device in case he gets separated from his caregiver while out which did happen. And he will continue to deteriorate and will eventually need a nursing home. I wanted to put in the application because it can take 2-3 years to find a good one. Regardless, she said, I have to test his competence and tell him we are applying for a nursing home.

But if you tell him about a nursing home, it will set him off and he may not recover from that. He denies he has the disease and he thinks he is employed at the day program he goes to. His competency can be assessed without the need to tell him. I have to tell him she said. It is only fair and I cannot hide it from him.

As a result, I told her no. I will wait until he deteriorates to the point where his placement is an emergency and he will remain in a bed that someone else could use until the system finds him a place that is more appropriate. This is a problem that is happening throughout Ontario. Patients blocking beds in acute care hospitals they do not need because they need a nursing home and can’t find one. And the blame for all this goes to the bureaucrats.

Since this encounter, the Canadian government announced a $50 million dementia strategy that includes prevention and anti-stigma. Sound familiar to the mental illness advocates? How does one prevent Alzheimer’s and other forms of dementia when the causes are not known? What does stigma have to do with anything. As an aside, I wrote a book on Alzheimer’s in the late 1980’s and nothing has changed from then. Same with our treatment of schizophrenia. My 10 year old book on Schizophrenia is pretty much as relevant today as it was in 2008 when it came out.

Laying Bare the Sacrifices, Pain, and Even Joy of Caring for a Mentally Ill Relative

By Marvin Ross

Surveys of and anecdotes by caregivers tell of the extreme lengths that we all go to in order to ensure that our family members with serious mental illnesses are safe, cared for and are able to enjoy as good a quality of life as they possibly can. But Shatterdays Bipolar Lives by Frank and Melanie Shanty is the only book that I’ve ever found that lays bare the sacrifice that families endure beginning from the onset of the illness to, in this case, a premature death.

Susan Caltrider first became ill at age 14 and was diagnosed with schizophrenia and spent lengthy periods of time in various institutions. By 1976, doctors suspected that she had been incorrectly diagnosed, changed the diagnosis to bipolar type I with psychotic symptoms and started her on lithium which had just recently become available.

Susan’s mother then spent the rest of her life caring for and overseeing her daughter’s care and progress through numerous hospitalizations, encounters with the police and ensuring that she attained whatever benefits she was entitled to from the state. None of this was easy for her with four other children, a husband, a rocky marriage and a career. One aunt is quoted in the book saying that “when you have a special-needs child, they become your life”. Melanie added that “without a doubt, this statement accurately describes my mother’s relationship with Susan”.

When Susan’s mother passed away from cancer in 1998, Melanie, a year younger than Susan, took over her care. Melanie had promised her mother that she would assume the responsibility that her mother had shouldered since the early 1970s. “At that moment, I didn’t realize the weight of that promise or the emotional toll it would eventually take on me”.

Susan’s social worker of many years is quoted saying that “Melanie’s love for her sister was the game-changer. If you took Melanie out of the equation, Susan would have ended up on the street, a victim of violence or confined for a large part of her life. Melanie enabled Susan to have a life….”

That commitment to her sister came at a price that all caregivers of adults with serious mental illnesses can relate to.

“Although I felt a responsibility to Susan, she was a burden. The painful truth is that with the passage of time, I became resentful. I often wondered if I would be able to maintain my commitment to her. Although I had empathy for my sister, I found it harder to juggle career, family and serve as Susan’s care provider. I was physically exhausted and emotionally drained”

“Counseling enriched my life beyond what I could have accomplished on my own. I am not who I was twenty years ago. But success wasn’t easy. Frequent bouts of anxiety, anger and depression kept me in therapy during the thirteen years I was Susan’s primary caregiver.”

I won’t go into the crises and challenges that occurred regularly as you can learn about those by reading the book but Susan did fare reasonably well and was married to a man with schizophrenia for many years until he passed away. Sadly,Susan’s life ended too early in 2011 as the result of a fire in her apartment building.

In Melanie’s ending words, Susan’s “story resonates with ‘ordinary people’ caught in the throes of mental illness and provides a beacon of hope for caregivers. Susan’s life was a testament to the power of love and commitment”.

One aspect of the book that struck me was the care that Susan received from the medical system beginning in the 1970s and on. When needed, she was admitted to hospitals or care facilities and her stays were lengthy by today’s standards. But then, towards the end of her life, Melanie took her to Johns Hopkins ER in a highly agitated manic state. Hopkins had access to her charts but all the doctor was concerned about was if she was going to harm herself or others. When Susan said no to both, she was not admitted and sent on her way.

Melanie commented that the doctor ignored her obviously elevated mood and “now believed that the mental-health barometer had changed from treatment to to crisis management – crisis defined as the desire to harm yourself or others”. She is right and it is now worse. Many families can attest to the difficulty of getting their obviously ill relative admitted and, if they do, the stay is not long enough to properly stabilize the person.

Because Melanie had her own business, she was able to employ Susan part-time for a period. Susan had previously worked for her mother two days a week and enjoyed that. The job with Melanie provided social interaction and the psychological benefit of feeling productive. Sadly, this is not something that most people with serious mental illnesses can acquire. Many are capable of part time work but there are very few opportunities. Instead, they sit around all day smoking and drinking coffee which does nothing to help improve their mental state.

Shatterdays Bipolar Lives by Dr Frank Shanty and Melanie Shanty is available at Amazon and other book sellers in print and e-book versions. I highly recommend it particularly as a book you can give relatives to help them understand your ill family member and how your life is impacted trying to help them.

When the Mental Health System Refuses to Listen

By  Maria Lorenzoni With Marvin Ross

Much of my writing on mental illness and the flawed system that we have to endure deals with privacy and the absurdity of keeping family and mostly parents in the dark about their loved ones diagnosis, treatment and progress. Maria Lorenzoni recently  gave this  edited presentation this past August to the Service Coordination Council on Mental Health and Addictions of the Central Ontario Local Health Integration Network (LHIN). The LHINs co-ordinate services in geographic areas.

She describes her families experiences with the secrecy of the treating officials and the impact that had on her family. Here is what she had to say:

Every serious sickness is stressful for family members, but caregivers of people with severe mental illness face challenges that are unique in some ways. Imagine for a moment that someone you love has been stricken with a devastating stroke and is in the hospital and can’t communicate, at least for the moment. Now imagine the doctors treating him or her and not giving you details of the diagnosis, prognosis, the exact information in their reports, or the treatment plan. Or just leaving you out of the picture completely. And then imagine the patient slowly recovering, but still not cognitively able to function properly, and perhaps unhappy that they are in hospital, and then being visited by a patient advocate to be informed that he or she doesn’t have to stay in hospital if they don’t want to.

You would argue that this is absurd.

According to a statement from the College of Physicians and Surgeons of Ontario, physicians can share information with others involved within the patient’s circle of care without asking for the patient’s consent if the doctor has no reason to assume that the patient would object.

Sadly, this does not apply to mental health!

In my case, it was only after three hospitalizations that I was able to press the family doctor to give me the diagnosis of my loved one. We finally got our son  into the Centre for Addiction and Mental Health and we were desperately trying to find the right meds and treatment plan. He doesn’t have insight into his illness, he doesn’t think he needs meds, so it took some hard work to get him to cooperate. And then, this vulnerable person that is in serious need of care is visited by advocates who tell him he doesn’t have to stay there.

Then what?

The onus is entirely on the family to persuade the person to stay in treatment. As a family member, you try to cooperate as best you can, BUT, you are not allowed to have any private discussions with the doctor unless the patient is in the room. Being spontaneous and giving some helpful comments is tricky when the person is right there. The doctors, therefore, make all their decisions based on communication with a patient who’s confused and will not share much because they don’t think they are sick.

He finally went to a Home for Special Care and was put under a team.  While we acknowledge the good work they did, there were a lot of misunderstandings and frustration due to a lack of communication.  No one is perfect, and families need to listen to constructive comments without being made to feel that they are just part of the problem.  In the time that he was there, we had three short meetings with the team , there were serious problems with reactions to meds, but we were not given input.  In fact, when I asked a question, I was told quite clearly…”look, you be the mother and we’ll be the treatment team.”  My family was shunned and made to feel that we were not cooperating, and in fact, we were discouraged from even visiting.

SO, POINT NUMBER ONE – family caregivers need to be able to give and receive information (unless there is a very clear reason not to), be given a diagnosis and prognosis, and consulted on a plan of action for the future.

SECONDLY, we definitely need a media campaign to focus on the obstacles faced by people with “hard core” mental illness. Sadly, the current campaign to destigmatize mentally ill is aimed at the people who have a more socially acceptable emotional problem like depression and who are in a position to ask for help. People are under the mistaken notion that everyone with a mental illness has easy access to good, consistent, hands on care. I’ve spoken to some in the health field who have asked me why my loved one isn’t in one of those residences that provide “professional rehabilitation”, and another health professional who recommended that I access a support group that helps caregivers with the tremendous grieving process that comes with caring for someone with serious mentally ill. They didn’t realize that there are no residences with professional staff, and while some support groups are good, none of them have a counsellor to help caregivers, and actually some of them are nothing more than lectures with information that you’ve read from a book a dozen times.

SO, POINT NUMBER TWO – we need to promote public awareness that people with illnesses like schizophrenia exist – that they are from every walk of life, they are people just like everybody else, they are not the dangerous individuals you imagine them to be and CONTRARY to popular opinion, they do not have easy access to services. Caregivers also need counseling as well to be able to deal with living with their loved ones on a day to day basis

NOW, THE THIRD POINT, and the most difficult, is the problem of housing. There are far too few residences and the ones that are available are overcrowded. A few are decent, others have low standards, and the people who live there are not in a position to stand up for themselves.

People with very serious mentally ill are most in need of supportive housing, yet they are the least likely to obtain it. They DO NOT GET MEDIA ATTENTION, AND DO NOT HAVE A VOICE. There is no easy solution, but with SOME BRAINSTORMING AND SOME PROPER REDIRECTING OF FUNDS, some pilot projects can begin to appear. Families would be delighted to help in any way they could, and IN FACT, THEY NEED TO BE PART OF THE PROCESS, so that a proper support system could be implemented.

I know so well that parents of adult children with serious mental illness are very concerned about the future of their kids and want to see them living in a place where there is hope, dignity and support.

If the public becomes more aware, and less afraid of mental illness, if there is more communication with families on the part of health professionals, more guidance and support for families and the hope for proper supportive housing, the future can be much more promising.


Families, Privacy and Hospital Suicides

By Marvin Ross

One of the constant themes in my writing of mental illness is the need to involve the family. And so, when I read a lengthy account of the suicide of a young 20 year old girl that appeared in my local paper, what jumped out at me was that she had requested that her family not be involved with her illness or treatment. She wanted to spare the family grief and, it seems that the doctors went along with her.

The young girl had a number of suicide attempts while in hospital and the family was told none of it. Dr Peter Cook, one of the psychiatrists, told the newspaper that “We were obligated to protect the privacy of Nicole. She was an adult.” The other shrink said that confidentiality between patient and doctor is “sacrosanct.” Nicole did not want to share her medical information with her family.

Sadly, this young lady is not the only suicide in the past little while at this hospital. There have been 9 – 3 in hospital, 2 of patients on leave and 4 outpatients. To its credit, the hospital did commission an external review to see if things could be improved. One of the recommendations was for “closer collaboration with families.”

Now, maybe the outcome would not have been different if the family was involved but we don’t know that. And, the privacy legislation is pretty confining but there are ways to get around them if the medical staff really care. The hospital recently established a family resource centre as the result of a donation from a philanthropist friend of mine. It was difficult to get them to accept the gift but they did and it is being used and it is being well publicized to families.

At the time we were negotiating for a family resource centre at the hospital, I wrote an op ed for the local paper on the need that families have for inclusion with staff when their loved ones are being treated. Aside from pointing out the anger that families have towards being ignored, I mentioned the very sensible guidelines that were produced by the Mental Health Commission of Canada for family caregiver inclusion. And I mentioned this:

“Very few, if any, mental health facilities have adopted these recommendations despite the fact that about 70 per cent of those with serious mental illness live with their families according to the Mood Disorders study. And family caregivers spend 27 hours a week caring for their ill relative according to the EUFAMI survey. That is five hours longer than the average in other countries surveyed by EUFAMI.”

I don’t know if St Joes ever did adopt these recommendations and I do know that the Privacy Act is very restrictive. But, with a little effort, it can be sidestepped as I pointed out in a Huffington Post Blog.

I was basing what I had to say on an excellent paper on the topic that had recently been published by Dr. Richard O’Reilly, a professor of psychiatry, Dr. John Gray, an adjunct professor of psychiatry along with J. Jung, a student in the Faculty of Health Science at Western University.

I said this in my post:

They point out that clinicians often don’t even bother to ask their patients if they have permission to involve family.

If they do and the patient refuses, then they should take the time to explore the reasons for this refusal. Many patients don’t understand why it is important and do agree to allow their families information once it is explained to them. In some cases, there is some information they do not want shared (like sexual activity and/or drug use) and the staff can ensure that this information is not shared. Staff can also inform families of pertinent facts in meetings with the patient present. This often allays patient fears and is similar to the approach recommended in the UK and by the Mental Health Commission of Canada.

In those cases where no consent is given, the staff can give general information to the families and receive vital information from the family. The family can tell the doctors about new emerging symptoms, worsening of symptoms and medication side effects, all of which should be crucial information.

Until such time as political jurisdictions reform the privacy legislation, mental health staff can do far more to open the channels of communication with families for the betterment of their patients. It is time they do so.

I was pleasantly surprised that at a meeting with St Joes staff just after this was published, one of them told me that this blog was being read by staff and was being circulated within the hospital.

It seems that not sufficient attention may have been paid to that. I hope that more attention is paid to involving families so that these tragic events can be minimized going forward.

Canadian Families Coping With Schizophrenia Don’t Have a National Voice

This blog post was written by Susan Inman and appeared in the Huffington Post on March 21. It is a sad shame that there is no longer a viable voice to express the concerns of families with members who suffer from schizophrenia.


Families who care for people with schizophrenia once had an organization that gave them a national voice. They no longer do. This lack of national representation impacts not just our own situations; it also hurts the people we support, because they are often unable to advocate on their own behalf.

Family caregivers, who had previously established provincial advocacy organizations, came together over 30 years ago to establish the Schizophrenia Society of Canada.

Certain core values originally united these organizations. These values included building close ties with the psychiatric and neuroscience communities which had come to see schizophrenia and bipolar illness as disorders of neural circuitry. These groups sought to provide the most up-to-date education about these illnesses to people with the disorders, to families, clinicians, police, and the public.

As well, these organizations have advocated for high quality supported education, housing, and psychosocial rehabilitation services.

These organizations have also worked to dispel the unjustified blaming of families for psychotic disorders that earlier theories about these illnesses had propagated. The legacy of these beliefs, which have faded from psychiatry, have persisted and negatively impacted other areas of clinical practice. Frequently clinicians are still training in the many credentialed programs that don’t require any science-based curriculum on psychotic disorders.

Until recent years, the goals of these family groups had been represented by the Schizophrenia Society of Canada (SSC). However, while sitting on many national committees as the presumed voice of families, the SSC has failed to support the perspectives of the families who created it. It does not address the lack of appropriate curriculum in training many clinicians. Similarly, it does not work to provide basic information about schizophrenia in the annual national mental illness literacy campaign in which it plays a lead role.

These failures are occurring because its current leadership has given itself a different mandate. It has supported trends in the social sciences that seek to de-medicalize mental illnesses and advance the idea that all problems arise from social and personal adversity.

Instead of fighting against the stigma that too often interferes with the ability of family caregivers to develop collaborative relationship with clinicians, the SSC Executive Director, Chris Summerville, has actively promoted stigmatizing attitudes. For instance, he promotes the notion that families undermine the recovery of their family member by holding stigmatizing attitudes towards them.

Summerville has written that families block their family member’s access to treatment because they don’t want to expose their ‘family secret.’ At the same time he has failed to help people with illnesses, their families, and the public understand anosognosia, the brain based inability of many psychotic people to understand that they are ill. This is the symptom that families struggle with as they try to get an ill family member into treatment.

The SSC has also failed to promote the most progressive, evidence-based psychosocial treatments. In recent years there has been extensive research about the common cognitive losses that are associated with the illness. While most people’s psychotic symptoms can be controlled with anti-psychotic medications, the cognitive losses often persist. These include difficulties with concentration, short term and working memory, problem solving, and judgment. While BC’s Early Psychosis Intervention toolkit makes this information readily available and even educates people about useful cognitive adaptation strategies, the SSC ignores this issue in its educational programs.

Cognitive losses are widely understood to be the biggest factor in the extensive ongoing disability of this population. While espousing its commitment to the Recovery Model, the SSC has not only failed to provide education about cognitive problems. It has also failed to promote the evidence based cognitive remediation programs that can improve recovery; these programs have been expanding in other countries for the past 20 years.

While the SSC has failed to promote programs that are desperately needed, it has played a leadership role in the mis-education of the growing peer support work force. Many of us hoped that the new national guidelines for training peer support workers that the SSC helped create, would begin to provide peer workers with essential information about the illnesses of the people with whom they often work. The guidelines don’t require — or even recommend — that training programs offer any information about mental illnesses. Instead of informing peers about why people suffering from psychosis sometimes need involuntary treatment, peers are encouraged to oppose it.

Now the SSC leadership has taken an even more alarming step in securing its vision for this organization. It’s created a survey that has been designed to guide responders to provide the desired responses. The survey wants a mandate to move away for what it calls the “western medicine biomedical disease model” of schizophrenia.

The survey is also looking for support for getting rid of the term “schizophrenia.” However, schizophrenia has long been included in the Diagnostic and Statistical Manual that is used in mental health, criminal justice, education and social services. The diagnosis enables people to access disability payments and many other essential supports.

The SSC survey argues that we should substitute the term “psychotic spectrum disorder” for schizophrenia and points out that this term is used in early intervention programs. It doesn’t say that, when cognitive and other symptoms persist once psychosis is managed, people often receive more specific diagnoses like schizophrenia or schizoaffective disorder.

It’s convenient for national organizations to continue to use the SSC to ensure the presence of a family voice. However, the SSC doesn’t represent the perspectives of the vast majority of family caregivers I’ve met in the last seventeen years.

Maybe it’s time for the leadership of the SSC to create their own organization representing the conditions they consider significant and the alternative treatments they help popularize. They could return the SSC to the families of people with severe mental illnesses who created it.

Advocating for the mentally ill

By Marilyn Baker from Marilyn’s Blog, April 30, 2016

People with serious mental illness need an advocate at least as much as people with other health problems, and probably more. When the brain malfunctions, the patient can (and often does) make poor decisions, with very negative consequences.

For me, advocacy means doing whatever it takes to get my loved one’s life running  smoothly  and keeping it that way.  In actual practice, it is often driven by a reaction to a crisis.

Advocacy should also mean doing things to enrich their lives and enhance their care. In general, a good goal would be to raise public awareness about serious mental illness.

So far I have not found much time for the awareness and enhancement part.  I have been mainly busy trying to smooth out the bumps in day-to-day living for my loved one.

I will give some examples of the things I have been doing for my loved one. They tend to be very specific.  I expect that you, the reader,  will have your own list of things that you have done and are doing now.  My hope is that by communicating about it, it will help all of our loved ones to get better care.

Since writing the words “loved one” gets monotonous, let’s abbreviate it to “LO.”  LO can be either male or female, in keeping with the fact that severe mental illness does not discriminate by gender and afflicts men and women equally.  For ease in sentence construction, I will use “he” or “him” or “his”, but it also can mean  ”she” or “her” or “hers.”


A lot of the stuff I do involves the writing of letters and filling of forms and emailing people. Some of the activities have been triggered as the result of a crisis. Not all have been successful – yet. Advocacy is a work-in-progress.

My first success was with Canada Pension Plan.  I applied and got a CPP Disability pension for LO. It took four years, but in the end it was worth it. The pension is small, reflecting the very limited time he was able to work before becoming ill, but it helps with the rent.

I helped LO to file three years’ worth of tax returns, which recovered some long lost  refunds. I became his CRA authorized representative,  and I continue to help him file each year.

LO had no  medical coverage for a while.  Everything had just fallen through the cracks after he become ill.  So, as his advocate, I helped him to apply for MSP coverage. Because of the three years tax filings, he was able to qualify for premium assistance. He is also able to benefit from BC’s Fair Pharmacare program. It is a very good system because it is income based. This means that he is able to afford the many medications he needs.  Over the years he has also been helped with other onerous costs such as ambulance fees.

Power of Attorney or Representation Agreements  are important legal tools for the advocate.  These agreements require the cooperation of the ill person. Unfortunately, so far,  LO has not agreed to very much. The agreements make it easier to manage finances, such as paying rent and hydro, when the patient gets too ill to manage things himself.

Housing and apartment rentals are sometimes made easier if someone is willing to co-sign the rental agreement.  Over the years I have also provided references, arranged for movers, and biweekly cleaning services.

I write letters  to doctors, hospitals, nurses, social workers, case managers, police … The letters have mainly been to say “thank you” for  helping LO through some difficult times. I also keep in communication with his doctors to provide feedback on how the meds are working.  Sometimes I give negative feedback, such as expressing my grave concern at the appalling discharge practices at some Toronto hospitals.

Other advocacy involves trying to resolve crises: One letter to Air Canada resulted in LO getting a significant sum of money refunded for an unused airline ticket. Fortunately, he had kept the boarding pass  which was the only proof of purchase found among his belongings. There are many more, too numerous to recount here, but suffice it to say all would have been made easier if we had had a Representation Agreement signed.

I provide a permanent mailing address for important things, such as government, CRA and banking correspondence.


Since I am a writer a lot of what I do is writing.

  1. I write letters to editors, usually in response to an article or horrific event involving a person with a serious mental illness. I also find it therapeutic to rant.
  2. I write letters and emails to people in power, such as my MLA or MP. Invariably, I receive a reply within nanoseconds, thanking me profusely for writing and promising to forward it to someone whose job it is to send constituent’s emails to the bit bucket. But I keep trying.
  3. I write articles for publication in newspapers. I blog. I follow people on Twitter. I “LIKE” and retweet articles of interest. I make comments in online comment boards on pertinent articles. I have sparring matches with anti-psychiatry buffs on over book reviews.  Until they cut off public participation and denied me access, I contributed to the Mental Health Commission of Canada’s Collaborative Spaces , by providing useful links to new research, treatments and other interesting articles by Susan Inman & Marvin Ross & others.

My hope is that if enough of us do this sort of general advocacy, sometime soon maybe some of it will stick and we will see real change in how our most vulnerable citizens are treated.


– Supported housing  is first and foremost of importance

– Absurd privacy laws need changing, or at least explained better

– Bus pass program needs reinstating and made more generally available for disabled people

– Assisted suicide legislation needs input from mental illness advocates

– Hospital discharge planning needs work

– Teachers, university professors, nurses and doctors need more training on mental illness


  1. Write from the heart, they will feel your pain.
  2. Use technology: Twitter, Facebook, emails make it easier; follow research online *
  3. Be tenacious. Never take no for an answer and never give up!


* I have a growing list of websites that are invaluable in providing the latest exciting news on new breakthroughs in mental illness research. I sign up to receive their newsletters. Things are exciting and very positive!

The Sisters of Perpetual Determination

By Katherine Flannery Dering From her Blog Word From the Trenches


Sunday after Sunday, year after year, our Mother drove the one hour ride from our home in White Plains to the Wingdale Psychiatric facility to visit my brother Paul and to prod the staff to take good care of him. Paul, the eighth child of our family of ten children, suffered his first psychotic break at 16 and for the next thirty two years, despite all treatment attempts, he never had more than a few moments of sanity. As our father sunk into a deeper and deeper depression, unwilling to face what had happened to his young pride and joy, Mother just gritted her teeth and did what had to be done. Dad died. Paul got sicker. But sun or snow, rainy or blustery day, Mother drove the two hour round trip and gave Paul his one day per week of almost normalcy. Picnics for sunny summer days, diner or pizza shop on bad days, an occasional excursion to a pool or bowling alley. Mother could recite every gas station, burger joint, antique shop, hardware store, exit, entrance, diner, motel, bank, putting range or ski equipment shop along the 50 mile route.

When Paul was 34, Mother died, very suddenly, of a burst aortic aneurism, and the ten of us “kids” were in shock. We stumbled through funeral preparations, copying what Mother had done for Dad. She had sung in the church choir for years, and her pals did a great job singing at her funeral mass. During the priest’s homily, he spoke repeatedly about what a determined mother she was in not only raising her ten children but also for ensuring that her mentally ill son was properly cared for. After Mother’s burial, the choir and at least 80 other friends and family members gathered at Mother’s house for a funeral luncheon.

At some point that afternoon, four or five of my sisters and I went for a walk around her neighborhood to escape the crowd of mourners who, fueled in part by a large quantity of bourbon and wine, had progressed from munching on catered chicken parmesan and crudités to singing show tunes around her baby grand piano. It was a beautiful, sunny fall day.  A short way down the block, realtors were holding an open house. Since we would have to sell Mother’s house, we decided to check it out. Recalling how the priest at Mother’s Mass had gone on and on about what a determined woman she was, we signed in as a group of nuns looking for a new home and called ourselves the Sisters of Perpetual Determination. It became our family joke. The next year, after I’d settled Mother’s will and distributed everyone’s share, my siblings gave me a plaque inscribed “To the executrix extraordinaire, with thanks, from The Sisters of Perpetual Determination.”

As the months and years went by after Mother’s death, we siblings took up the mantle of trying to look after our brother.  However, this was the age of the deinstitutionalization movement, and despite the lack of a suitable half-way facility to care for him, we were unable to prevent his release from the psychiatric facility. Without constant supervision and tweaking of his medications, he went steadily downhill. His schizophrenia was severe and persistent. He was unable to make it through the maze of “freedoms” he was given, and he cycled in and out of hospitals and group homes. We had always hoped we could keep him safe until some new treatment was discovered that would bring him back to us. But poor diet, constant smoking and general aimlessness caught up with him. Despite our efforts, he died six years ago at the age of 48.  We miss him still.

Current laws, meant to protect people from unjust confinement, now condemn many people with serious mental illness to a shadow life of delusions, confusion, and homelessness, horrible group homes and/or early death. Despite promising advancement in early intervention and new cognitive treatments, many with schizophrenia never really recover.  The care of a family member in this age of almost no long term mental health care puts a tremendous burden on people trying to keep their loved ones off the streets and out of jail.  In consideration of all these caregivers do, my sisters and brothers and I have decided to share our sisterhood name with all the other families of people suffering with serious mental illness.

To the Mothers, Fathers, Sisters and Brothers of Perpetual Determination, we salute you.  We have pledged our support for legislation like HR2646 and vow to fight for improved care for our loved ones.

picture:  to r back row: Pat, Charlotte, Sheila, Paul, Ilene; front row: John, Katherine, Julia, Grace, Monica.

For more information on HR2646 and a letter you can copy and paste and send to your representatives go to and click on the advocacy page.

To learn more about schizophrenia and what is needed to improve our mental health system go to

To order my book, please go to

When Will All Mental Health Professionals Learn to Respect Families?

By Marvin Ross

Families of the mentally ill are the tireless workers who provide support and advocacy for their ill relatives at tremendous financial, emotional and physical costs. The families also are the ones who push for reforms from reluctant elected officials. It was families in the US who formed the National Alliance on Mental Illness (NAMI) to fight for their kids. In Canada, it was the late Bill Jeffries, a family member in Oakville, Ontario, who formed what was originally the Friends of Schizophrenics in Canada (now the Schizophrenia Society).

A group of family members in the US (partly tongue in cheek) call themselves the Sisters of Perpetual Determination to indicate their resolve.

Families fight for their ill relatives whatever the illness they suffer is – cancer, CP, autism, schizophrenia – and that is as it should be. But when it comes to mental illness, we are often not consulted and are shunned and talked down to by professionals. Just recently, a group of very dedicated families had to fight for months to have a representative on an Ontario Government Committee set up to evaluate mental health services before a family member was appointed.

But do not consider the Family Outreach and Support Program (FOR) in the same class as these aforementioned family advocacy groups. FOR which is funded in part by tax money is being integrated into the Canadian Mental Health Association Toronto Chapter. Despite the name FOR, from the writing of its founding executive director who stepped aside in 2015 but is still on staff, this group is not family friendly in my opinion.

Karyn Baker says that she is a mother of a child with mental illness but in her article entitled Families: A Help or Hindrance in Recovery she reveals what I consider to be disdain for families. I’m not sure if she still believes what she wrote as the article is no longer online but it was discussed by Susan Inman in a Huffington Post article and I do have a copy.

The article is a chapter in a book called Alternatives Beyond Psychiatry edited by a founding member of an organization called INTAR or the International Network Toward Alternatives and Recovery of which Ms Baker is or was a member (she lists her membership on her CV). The organization believes that emotional distress is often labelled as psychosis.

Here is what Ms Baker writes:

  • “traditionally many families have not been given the information or strategies for helping their families in the recovery process. As a result, families have tended to unwittingly be a hindrance in their relative’s recovery”
  • “There was little, if any, mention of recovery and no critical examination of the mental health system from a trauma-informed and anti-oppression perspective. These programs created like-minded thinking between families and mental health professionals, which further reinforced the limiting idea that mental illness is a disease and must be treated with medication or otherwise, recovery is not possible.”
  • “In North America, the alliance of mental health professionals and family organizations has entrenched the medical model of mental health distress and has led to an extreme over-reliance on psychiatric medications and coercive mental health legislation. A collateral damaging consequence has been the divisiveness between the psychiatric survivor organizations and family groups. Psychiatric survivors have been highly skeptical of family involvement in the recovery movement. Often survivors have felt both the controlling and paternalistic (and often traumatizing) experience of both their own families as well as those of large family advocacy organizations.”
  • The key messages that families report taking away from the course are that: recovery is possible even without any professional intervention (for many families this is the first time they have heard this message); hope is the cornerstone to recovery – it is almost impossible to recover without hope and the family’s role is to “hold the hope”; to avoid creating learned helplessness by being overly-involved; to support risk-taking and giving the relative the dignity and freedom to fail like any other human being; to let go of controlling relative’s choices – this is their recovery journey; to stop viewing everything from a problem orientation and start building on strengths; to view madness as a human experience; don’t use coercion or forced treatment; explore alternatives and use advanced directives.
  • Families also have reflected back on the importance of the group process in learning about recovery and their own behavior. Families want a place that does not perpetuate their guilt or shame about their own role in wounding their relative but helps them to acknowledge their role and behavior and help them to make change in a safe environment. Many families acknowledge that they started this journey as either uninformed or misinformed and that often their natural intuition as to how to be helpful was actually counter-productive. Families also become aware of their own internalized discrimination or mentalism about people with mental health issues. Families learn to use language that does not hurt or hinder recovery.”

None of this is evidence based nor is it family friendly unless families admit that they have been controlling and paternalistic towards their ill loved ones. Point two from her paper is still the raison d’etre of the agency as it is prominently displayed on their website. An excellent critique of the absurdity of their “trauma-informed and anti-oppression perspective” compared to the medical model was recently provided in an excellent article in Clinical Psychiatry News entitled Unmasking Trauma-Informed Care. It makes for good reading.

And my tax dollars go to programs like this when the money could be used to provide more psychiatric beds that are desperately needed.


Schizophrenia and the Family

newer meBy Marvin Ross

In one of my earlier blogs, I talked about the stress that families with children with serious mental illnesses experience. Of course, parents who have a child with any serious chronic illness all have stress. But, when that illness is a serious mental illness, then the stress is even more horrendous for two reasons.

The first is that an illness that involves the brain results in significant changes. A happy, bright, funny person may become angry, violent, and unable to think rationally when in the throes of a psychotic state. Reasoning becomes impossible with someone who is delusional and who may very often deny or fail to understand that something is wrong. How do you cope and get that person the treatment  they need? It is difficult and can tear families apart.

We can read the above words or my previous blog on the suffering of families and think that we understand but to truly understand, we need to see it. And my fellow blogger, David Laing Dawson, managed to do that in this scene from his film, Cutting For Stone about a young man developing schizophrenia. Dominic Zamprogna who is best known for his roles in Edgemont and General Hospital, plays the young man Philip and, in this scene, confronts his parents after an escape from the hospital. While fictitious, the scene that is portrayed reflects the reality of many families and, having been there when this scene was shot, the emotion effected all of the crew.

After Vince Li, a man with untreated schizophrenia, murdered a fellow passenger on a Greyhound Bus in Manitoba, David filmed this interview with Philip’s mother in a short called “10 Years Later”.  And this is the second problem faced by families, the stigma of the illness and the horrific things that those who are untreated do. And, before seeing this clip, I should point out that Vince Li was released from a Toronto hospital while still psychotic with no follow up. Since being in a forensic unit receiving treatment, he has improved considerably, His psychiatrist told the review board that he is at low risk to re-offend. Risk assessments done by several other doctors came to the same conclusion.

The above is fiction based upon David’s many years treating patients and so is as realistic as it can be. However, Katherine Flannery Dering who wrote about her brother with treatment resistant schizophrenia provides an actual description of how mental illness impacts the entire family. This is an interview that Katherine did with journalist, Ardina Seward, in a diner in Westchester, NY.

Families of the Seriously Mentally Ill Need Support Too


By Marvin Ross

It is  said that it takes a village to raise a child. But, if that child grows up and develops a serious mental illness, the village often disappears and the parents are left on their own. One of the most poignant descriptions of community response to a parent with a mentally ill child versus a child with another type of illness was provided by Laura Pogliano, a mother and advocate in Maryland. It is a very long list but the bottom line is:

“Your child is not homeless. Your child is not incarcerated for years. Your child is not maligned in general by society. Your child’s illness is not romanticized or mythologized with ideas like “Madness is Genius.” Your child is not part of the Gun Control debate. Your child is not automatically part of the legal system. Your child does not have a Preventable Tragedies national database. Your child is not a throwaway. Mine is all of these things.”

And the stress of both having a child with a serious mental illness and the lack of empathy from many can be overwhelming. The European Federation of Families of People with Mental Illness (EUFAMI), a European non-profit organization that primarily advocates on behalf of families and family carers, has just released the results of a survey they conducted on the impact of serious mental illness on families.

The results are not pretty!

The survey of 400 people so far was conducted in Australia, Canada, France, Germany, Italy, Spain and the UK and was designed to understand the needs and challenges of those caring for relatives with severe mental illness, in particular schizophrenia. It will continue collecting data till the end of this year.

Almost half the participants (46%) were not happy with the support they’ve received from medical/healthcare staff and 38% do not believe they are taken seriously. 44% are not satisfied with their ability to influence decisions about the care of their relatives.

Four out of 10 of the family caregivers feel they cannot cope while 1 in 3 suffer depression, 1 in 3 worry about their own physical health as a result of their burden and 1 in 3 are close to the breaking point. Almost all (90%) want and need help with their burden.

Caring for a family member, the survey concluded, was similar to having a part time job involving an additional 23 hours a week and a job that often lasts for the rest of their lives. As Kevin Jones, the Secretary General of EUFAMI said, “this hidden workforce of family carers is a lifeline for society and we must take steps to ensure they are fully recognised for their contributions, their voices are heard and they are supported in order to allow them to continue caring effectively and safely for their loved ones, without putting their own physical and emotional well-being at risk”

Kathy Mochnacki, a mother in Richmond Hill, ON in a letter to the Toronto Star, pointed out that

“since the deinstitutionalization of hospital mental health services, family caregivers of people with serious mental illness have shouldered most of the responsibility of care and have become the default mental health system. Furthermore, we often do our work in isolation, coping with discrimination and unrealistic privacy legislation that could potentially put us and our ill relative in harm’s way.”

And it is that absurd privacy legislation that is a large source of the stress felt be caregivers. Imagine having an adult child with life threatening cancer and being told by the medical profession that they cannot talk to you because of privacy. A sick child of any age needs all the help and support that they can get and it is the family who are often most in tune with their state of health. To continue to deny families information, involvement, and to refuse to listen to their suggestions is unproductive and absurd. And yet, despite recommendations to end this situation in both Canada and the US, it continues.