Hidden Costs and Benefits of Young Caregiving

In May I attended the first International Congress on Young Carers hosted by the University of British Columbia.  The conference was three days filled with information, sharing and networking between programs and groups around the world interested in filling the void that is left in families due to chronic illness and disability.  The conference was three pronged bringing together Children of Parents with Mental Illness (COPMI), Young Carers, and Family Mental Health.  All three groups were passionate about their
mission however at the end of the conference we all realized how much common ground we shared.


I promised I would report back on the rich information and experience that the conference provided and it was very difficult to synthesize the amount of information that was presented.  The presentations offered insights from research to heart felt testimonials and sharing of lived experiences.


Yesterday, a study was released that brought things full circle.  The Vanier Institute of the Family released a study entitled Young Carers in Canada- The Hidden Costs and Benefits of Young Caregiving.  In my role on the local young carers project, I was contacted by a reporter who wanted to cover the story.  In preparation for my interview with her I reviewed the study, and was taken back to a moment in the conference when I heard this researcher, Grant Charles talk about this study.


In his presentation he discussed a wide variety of subjects pertaining to young carers but there was one element that struck a raw cord for me and my daughter sitting in the audience.  He talked about the issue of 'parentification'.  It is so hard for families to step forward due to the stigma that is present when disability requires care to be provided by a young person to an adult in the family.  As a person living with chronic illness there is nothing that cuts to the quick closer than being unable to do day to day tasks and needing to ask for support and assistance from the very people you are supposed to be caring for.


In this study, there is an important distinction between what it means to provide care in the context of a mutually supportive, relationship where unexpected circumstances have caused the need for care and the demand of care where the adult has completely abandoned the role of parent.


As Grant Charles presented his research, the whole world might have melted away as he was speaking.  His words hit my ears as if they were meant for me alone.  As I looked at my daughter I could see that it was resonating with her as well.  We have stood in support of Young Carers program development in the six year journey since chronic illness entered our home but we both struggled at times with the ideology.  The stigma, the judgement, the blame were not lost on us as we struggled to maintain ourselves in the face of enormous challenges. 


I struggled with my own physical limitations, loss of my job, and complex changing relationships with friends and coworkers as I no longer was able to work, socialize and live the way I normally had.  My daughter struggled with balancing her concern for me with forging new relationships in high school.  No one seemed to be able to relate to us or our challenges and so many people turned away.  It was easy to feel stigmatized.  Nothing we experienced was normal.


Hearing this renowned researcher describe the differences lifted a burden from my shoulders.  My daughter felt a similar weight lift.  As we walked out of the conference room she said "you always supported me no matter what task I was doing."  She never felt like she was alone in providing assistance to me.  What an important distinction.  


In my opinion understanding the prevalence of young carers, the situations that cause caregiving needs and the rest of the work this research offer is just contextual framing for this discussion about parentification.   

The most important sentence in this document IMHO is this:

Quote:

Parentification insinuates that none of the parent-to-child support, mutuality or reciprocity that would be expected in a healthy parent–child relationship is present.

Hearing this helped us both to know that research supports the idea that kids in care giving situations are rarely seen as parentified.  Reviewing this document in preparation for the interview with the reporter I reviewed and reevaluated our lives since MS tore into our lives.  I realize that there have been many benefits to our relationship.  It is without a doubt a deeper bond based on mutual respect.  My children both are able to see people beyond disabilities of all kinds.  We are unfailing in our support of one another. 

Read the research paper here via the PDF download:

http://www.vanierinstitute.ca/?utm_s...m_medium=email 

Here is the reporters' original article from 2009:
http://www.thestar.com/parentcentral...ble-population

Here is the recent article:
http://www.thestar.com/living/articl...d-need-support

I share this story in the hopes that it will open a discussion for the benefit of the children providing care. This movement needs families to be able to embrace the Young Carer concept so that programs and services can be created to enhance our families by building on our strengths.