Tag Archives: Serious Mental Illness

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.

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Families of the Seriously Mentally Ill Need Support Too

schizcover

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.