Young caregivers testify to life-altering challenges

Noam Blauer and Von Allan. Photo by Irwin Block

When Noam Blauer was 16, his mother began displaying disturbing symptoms at home that seven years later would result in his life being “turned upside down.”

He was in his last year of high school, his mom was a well-established teacher at Bialik High School, and she was beginning to have trouble with basic math and her own scheduling. The diagnosis she received did not identify the source of her cognitive issues.

Seven years later, at 56, she was diagnosed with early-onset Alzheimer’s, when Noam was in his first year at McGill. As he told a one-day conference on young caregivers last month, his world went “topsy-turvy.”

“It was heartbreaking and tragic,” he confessed, but part of that trauma was the turmoil that resulted at home when along with his brother and father, he became a caregiver, and that role became “an all consuming, huge part of my life.”

Blauer’s testimony and those of two others who faced similar challenges as young caregivers were among the highlights of the conference, which grappled with the effect on young people’s lives when a parent or sibling develops dementia or a debilitating mental illness and they become caregivers.

All too often, young men and women 15 to 24 are thrust unprepared into that role. And it comes at a crucial time in their development, unleashing a dramatic shift at home, reversing traditional parent-to-child nurturing roles and upsetting sibling relationships.

An estimated 1.25 million Canadians cope with these challenges, the audience of 100 health and social service professionals, workers, and volunteers was told at the seminar. It was organized by Ami Québec, which helps families cope with mental illness, and with Regroupement des aidants naturels du Québec (RANQ), which advocates for family caregivers in Quebec.

Blauer went into detail about his new role as an Alzheimer’s caregiver, which included a good hour to get his mother dressed, another hour to assist in her bathroom needs. Though these and other duties were shared with his brother and father, the demands were so great, “it felt like we were treading water all the time.”

Blauer described the role reversal he faced in caring for his mother as “bizarre, pathological, dysfunctional and perverse – a perversion of the natural order of things.”

He got over some of it and boldly took his mom to the women’s bathroom when they went out. At school, he said he was fortunate that he could explain to understanding professors why he could not meet deadlines for term papers, and they readily agreed to extensions.

He described as “incredibly hard” his having to adopt the parenting role with his mom, and as “tragic” losing the care and support of the mother he knew when she was healthy.

Ottawa resident Von Allan knew from a young age that his mother, a single mom, was struggling with mental illness and quite often had to be hospitalized after breakdowns. Eventually she was diagnosed with schizophrenia.

“It was terrible, really frightening, and it led to so much confusion,” he confessed.

“Nobody ever pulled me aside and explained it to me,” until he became a teenager and his mom began discussing her problems with him even as she tried to conceal the symptoms.

“In my case, it certainly meant you had to grow up fast. I certainly didn’t have a lot in common with a lot of the kids in school.”

Though he missed some classes, Allan said he did well in school, but never shared his home experience with anyone there, and never got any advice from any teacher or guidance counselor as to how to adapt, especially as his mother’s health deteriorated. The family ended up on welfare and that was an added stressor on their lives.

‘My mom died when she was 48, probably of a heart attack. I was 22, and my ability to understand what she was going through improved.”

A third testimony came from a person who asked for confidentiality since a sibling, who also is schizophrenic, is alive.

Six years ago, the sibling was diagnosed with the condition. “What I saw was a sibling, whom I loved very much, who was suffering, and a family that was in crisis.

“I saw my parents not knowing how to handle things. No one knew where to go for help.”

Apart from the stress of mediating when the sibling was in conflict with their parents, there were internal struggles, “whether or not I recognized myself as a caregiver or as a sibling.”

The healthy sibling recalled coming home and “figuring out what I would be confronted with that day, whether I would have my sibling cap on or my caregiver cap on.”

Though the parents were actively involved as primary caregivers, the healthy sibling took over a good deal of the caregiving when it came to medication management and setting up appointments and hygiene support. She urged greater involvement of family members in treatment planning for those with mental-health diagnoses.

In the language of the professionals, she and other young caregivers face “parentification,” where prior to maturity they take on the responsibility that normally falls to a father or mother.

Delegates Vivian Stampotopoulos, an assistant professor at the University of Ontario Institute of Technology, described how the UK is taking the lead to counteract the isolation young caregivers experience with awareness and support programs. Young caregivers have access to direct monetary payments or support from 350 dedicated programs.

In Ontario, the Powerhouse Project was created in the Hamilton, Niagara and nearby regions that helps 100 young caregivers a week reduce isolation and caregiver fatigue, alleviate stress, and offers peer support.

Minister promises more help

Visiting the first symposium in Quebec on young caregivers last month, Marguerite Blais, Minister responsible for seniors and informal caregivers, told The Senior Times she returned to active politics to improve the lives of vulnerable seniors.

Facing a busy schedule the day after the provincial budget, Blais showed up early, made a short speech, and instructed two senior aides to spend the day at the symposium and draft a report on what participants said. Blais repeated her government’s commitment to build 20 more-modest and humane residences during the mandate. This would be part of the Coalition Avenir Québec election pledge to spend $20 billion to replace long-term care facilities considered beyond repair with more liveable maison d’ainées.

She also pledged financial help in the months ahead, from a budget of $21 million she has been allocated, to offer better care for seniors, and to assist family members caring at home for those with physical and mental handicaps.

Symposium organizer Ella Amir expressed the hope that some of this money be channeled to increase awareness and develop support programs for young caregivers.

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