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.