We’ve heard from parental caregivers, but what about if the roles were reversed? Adolescents who tend to their families needs can be caregivers too. Adapting to a lifestyle that is different from their peers, and sacrificing part of their childhood to help their families, Young Carers everywhere need the same support and encouragement that adult caregivers need. Maybe even more so.
It is estimated that in the United States there are 1.5 million young caregivers. Crossing the 49th parallel, I had the chance to talk to Kim Latour who participates in the organization entitled Young Carers Canada. Young Carers Canada’s mission is to spread awareness of adolescent caregivers, and help young caregivers find the support and resources they need. Kim had the chance to share with us her personal journey with being a caregiver recipient, as her children are Young Caregivers themselves.
How did you get involved with the Young Carers Movement?
Young Carers Canada is a growing movement that seeks to improve support and understanding for young caregivers. I became involved with this movement six years ago. At the time, I was a busy active working mother when I began to experience symptoms that made day to day living very difficult. Within a short span of time I lost use of my left side, and was hospitalized. I was later diagnosed with MS and unable to work. Following this MS relapse, I was housebound and began to adapt to living with a variety of symptoms which required adaptation and assistance.
As I processed the shock, grief and fear of my diagnosis, I also faced the realization that my children who had very little household responsibilities up until then were going to have to adapt and take on more. They were 10 and 14 then and life as we knew it was going to have to change.
Fortunately the timing was just right in many ways. I was grieving the loss of my career in social services just at the time that the Young Carers Movement was beginning to take shape. The MS Society was a member on a task force of community organizations developing programs to support children living with a relative with chronic illness. At first my children benefitted from the MS Society’s ‘Kids Klub ’ by participating in activities which offered them the opportunity to get away and ‘just be kids’ as well as meet others facing similar situations. They learned about illness, its impacts, coping strategies and learned new skills.
When I was able, I was invited to join the taskforce to contribute a family perspective. Very soon I became committed to find ways to ensure that others benefitted from the same support and assistance that my family received.
Today my children and I are passionate advocates for a new initiative called the Young Carers Canada movement that is working to become a registered national non-profit and hope to help facilitate the expansion of young carers programs to other communities. I am no longer able to work as a mental health caseworker, but I am excited to be able to utilize my experiences in a new way by volunteering on national and local Boards and Committees to help others.
Tell us a bit about your foundation/non-profit.
The Young Carers movement in Canada began with an initiative by the Alzheimer’s Society Niagara (ASNR) in 2003 which brought together various community service agencies serving both adults and youth to begin raising awareness and provide support for young carers. This initiative has evolved into an independent, non-profit agency called the Young Carer Initiative (YCI). The YCI has been successfully operating the Powerhouse Project for Young Carers in the Niagara Region and Haldimand County since 2007. This became the first project in the entire country designed specifically to meet the needs of young carers and their families.
Promoting awareness about young carers and their needs is just one of our activities, and this is a very important part of who we are. Part of this awareness campaign is to spread the young carers’ movement across Canada. To this end we are initiating a national program – Young Carers Canada – that is now under development. We also encourage and support other groups who want to start their own young carers programs in their communities.
In Canada there are 6 young carers programs at the present time:
* Powerhouse Project Young Carers Initiative (first program-Ontario)
* Hospice Toronto Young Carers Program (Toronto)
* Youth Caregivers Project- (Victoria BC)
* Comox Valley Youth as Caregivers (BC)
* MS Society- Niagara Peninsula Chapter of Hope offers young carer’s programming within the services they provide. (Ontario)
Awareness is important to this movement because the concept of young carers is new to our country. Adults often worry that accepting the term young carer implies that they are neglectful. In fact, even in homes where a parent is competent, capable, loving, and nurturing illness does impact the whole family.
We describe a young carer as: “An individual under the age of 18 with a relative whose activities of daily living are restricted by a chronic disability, long-term mental or physical illness, substance abuse problem or other socio-economic factors such as a language barrier.”
Young carers can be in a caring role that is Primary, Supportive or Sibling. A Primary carer is the sole care provider. These young carers take on an adult caring role when their parent is not able. A supportive carer helps an adult, usually a parent, provide the care. A sibling carer helps a brother or sister. Support can be provided daily, or as needed depending on the fluctuating abilities of the affected adult.
There are so great ways in which your organization helps young caregivers. What do you like best about what you do?
Working with the Powerhouse Project and the Young Carers Canada steering committee has been an important opportunity for my children and I to contribute to a meaningful cause during a life changing time. It has provided us with skills, support and opportunities for recreation that wouldn’t have been possible otherwise. Knowing that our involvement is helping to move this concept forward nationally keeps us engaged in spreading the message.
What are some challenges that are unique to young caregivers?
There are many challenges that face children who provide care to a person with illness. What we hear from the children we serve is that they need to feel that their contributions are recognized and they need opportunities to ‘just be kids’. Our young carers programs provide opportunities for children to broaden their support network meeting other children in their community experiencing similar challenges while learning new skills and having fun. We focus on stress management, and building on strengths that exist within the families we serve. Children who provide care need to ensure that their own needs don’t go unmet in the scope of their care giving responsibilities. They need to seek out help when they feel overwhelmed. Good self-care, establishing balance, and feeling a sense of connection in their families and community can help to ensure resilience in young carers.
Also, when young carers interface with professionals they are often dismissed from conversations and instruction pertaining to care. If a child will be participating in the provision of medical care and treatment it is vital that they receive the training, support and information that an adult in the circle of care would receive. Young carers often feel cast aside at medical appointments, and by health care providers. Yet when the crisis has passed they are often left to manage complex situations. Professionals need to ask questions during their intake procedures about who offers day to day supports and when ever possible be excellent detectives when ever children live in a home with a person living with chronic illness to be mindful of what level of involvement would best aid the family in the long term.
What would you like to share with the online health community? What do you wish others knew about your org and what you do? · Any events, projects, or plans that are coming up that you’re excited about?
This is an exciting time for Young Carers Canada. At this time we operate as a steering committee. We are in the process of completing the legal incorporation process. It is important for us to be a youth led organization so we have brought together a group of ‘Youth Champions” from across the country to establish the mission. A group of stakeholders from the committee (including service providers and researchers) will be putting together terms of reference from there the mandate for our national organization will be created and we will move to form a Board of Directors.
The existing five young carers programs all offer support, information, advocacy and recreational opportunities to children under the age of 18 who live with a parent or relative with a disability, chronic illness or language barrier.
One of the biggest challenges for the Young Carers Movement is that it is difficult for people to reach out for support due to fear of judgment. The grief process that accompanies illness and disability is very real. People feel vulnerable when an illness has profound impacts on their ability to function. Seeing, understanding and responding to the stress your illness places upon your close family is very difficult. The young carers’ movement is about celebrating the strengths in families and building in opportunities for growth and resilience.
If you know of a youth champion or know of one living in Canada who would like to contribute in this movement or would like to begin a young carers program, please send us a message at firstname.lastname@example.org.