Tuesday, May 28, 2013

Heroes in the Home

Unpaid caregivers recognized for sacrifices

By Karena Walter, The Standard
Melissa Ruffolo at the Heroes in the Home banquet Thursday. Julie Jocsak/ St. Catharines Standard/QMI Agency
Melissa Ruffolo at the Heroes in the Home banquet Thursday. Julie Jocsak/ St. Catharines Standard/QMI Agency
They are thrust into the role of caregivers at a time when their biggest worries should be dating and acne.
Youth who care for grandparents with dementia, siblings with autism or parents with mental health issues.
“I used to feel nobody else was going through the same thing,” said 15-year-old Melissa Ruffolo of Niagara Falls, who cares for her mother with bipolar disorder. She now sits on the youth advisory board of the St. Catharines-based Powerhouse Project, an organization that provides support to young carers under 18.
“I guess I’m happier because of them. I’m not alone,” she said.
Over 300 kids in Niagara are registered with the Powerhouse Project, part of the Young Carers Initiative. The group was being honoured with a Caregivers Recognition Award Thursday night at Club Roma by the Hamilton Niagara Haldimand Brant Community Care Access Centre.
The access centre, which connects people to support services, recognized 49 Niagara residents Thursday who take on unpaid caregiving responsibilities at home. They are adults with aging parents, spouses with partners who have fallen ill and even teenagers caring for parents or siblings.
“They’re unsung heroes many times,” said Melody Miles, Chief Executive Officer of the access centre. “This is just a way to say, ‘You make a difference.’”
Often under the radar, many caregivers were nominated by support staff going into homes who noticed family, friends or neighbours making sacrifices. Many of those residents don’t have the benefit of a caregiving community.
It was the third year “Heroes in the Home” were recognized by the access centre.
“These are folks who are not paid,” Miles said. “They do it because they love who they do it for.”
For Ruffalo, who lives with her mother, joining Powerhouse Project last year allowed her to connect with other youth going through similar situations. She takes part planning events and has been able to help others who thought they were alone.
“At first I was shy but it did help me it he long run,” she said.
One Canadian study found 12% of youth between 12 and 17 consider themselves a caregiver.
“They’re the silent population,” said Michelle Lewis, executive director of Powerhouse Project. Lewis said no one at school can relate to them but in the program there is some normality. It provides respite and helps kids manage feelings of stress, isolation and self-esteem.
The average age of Niagara children in the program is eight to 12.
“They’re beyond their years in age. They have to grow up quickly,” she said. “Their families are under a lot of stress above and beyond normal life.”
Those youth and adult caregivers honoured Thursday were from across the region and were given a pin to recognize their efforts.

2.7 million - No. of Canadians 45 and older who provide care to an older person with a long-term health condition or physical limitation according to Statistics Canada
$24-$31 billion - The dollar figure representing how much unpaid caregivers in Canada contributed in 2007 according to a study
12% - No. of youth between 12 and 17 who self-identified as young carers in a 2010 Canadian study of high school students

CBC Radio The Current Story

In the CBC interview (link posted below) my daughter and I both share candid recollections of what the early days of living through a devastating Multiple Sclerosis relapse were like.

While CBC did an excellent job of capturing how my illness personally impacted my daughter the impacts had profound ripple effects that challenged many other people.  My children felt the impacts of my illness most personally. They felt the uncertainty and unpredictability of my illness as personally as I did.  They rode waves of sadness, anger at the disease, at its intrusion into our autonomy, and anger that I wasn't able to be the solid rock they had always counted on and needed. When a person experiences the symptoms and diagnosis of a chronic condition the whole family is impacted in a variety of ways.

The impact of my illness rippled out from my small nuclear family to my parents, to my friends and to my coworkers.  My mother quit her job to help care for me and my kids.  Without her incredible support I would have never made it out of hospital and home.  She came to my home everyday; she cooked endless meals, did laundry and cleaning.  My ability to keep up with day to day chores had been dwindling for sometime and there was tons of work that needed to be done.  My mom and dad coordinated a ramp being built to enable my return home from hospital long before I was ready to leave.  Without their endless care, encouragement and support I don't know how we all would have made it.

Note:  We are sharing this story with purpose.  We would like to shine a light on the strengths and needs of families living with chronic illness to promote the Young Carers Movement.  As members of Young Carers Canada we support the development of supportive programs directed at Young Carers and their Families.  In our area there is programming available through the Young Carers Initiative in their program The Powerhouse Project.  This programming is available in Niagara and Haldimand-Norfolk.  Across Canada there are other programs and services available in select areas but a more comprehensive nation wide strategy is necessary.  These programs provide support, information, respite, homework help, and skills training.

With that as an introduction here is the story as captured by CBC Radio:
The story of Young Caregivers
“There is no greater agony than bearing an untold story inside you.” Maya Angelou