Monday, April 30, 2012

First international young carers conference!

I am so excited!  I completed my conference selections for the first International Young Carers Conference which will be held in Vancouver British Columbia in May.  The conference is called Child and Youth Matters and has combined three conferences in one.  They are the First national Family Mental Health Conference, the Third International World Congress on Children of Parents with Mental Illness and the First International Young Carers Congress.

The number of presentations to choose from made choosing the conferences difficult.  There were so many things that appealed to me from my previous life as a mental health Case Manager and  my new role as an advocate for care-giving children couldn't be a better fit.  The conference will bring together people from many different backgrounds to share and learn.

The Young Carers movement in the UK and Australia is well established.  In England the government has a national strategy for Caregivers.  Our Canadian group will be able to learn a great deal from these established programs.   I am looking forward to the experience and learning opportunities that will shape our Canadian commitment to children who take on important roles in their families and communities.  I will report back in a few weeks after the conference!

Sunday, April 1, 2012

Supporting our Supporters

Caregivers rarely beat their own drums.  As a group they don't see the things they do as heroic they simply plug along giving and providing in response to the needs that present themselves in front of them.  It is expected that families will care for the young, sick and frail.  As a society little value is placed on the tireless advocacy and care provided to those who need it.

I have been an active participant in programs that support caregivers young and old.  Trying to garner support for these groups has been an uphill battle.  People are reluctant to cast themselves as martyrs or to beat their own drums.  They simply meet the tasks before them and wade through one after another out of love, commitment or a sense of responsibility.

What brought me to writing this latest post is reflecting on the role that the local chapter of the MS Society has played in my life since my diagnosis.  I've served on the Board of Directors for the Young Carers Initiative and volunteer at the local chapter of the MS Society where meeting the challenges facing caregivers is a frequent discussion.  What is also difficult is reaching overburdened caregivers both young and old to give them support and replenish them to keep doing what the do.  They too do a poor job at the beating their own drum about the work they do and the significance of the contributions they make.

The local chapter of the MS Society has been a cornerstone in my life since my diagnosis.  At the local chapter I have been an active volunteer as I worked through my own grief cycles.  They allowed me to contribute and be a part of their mission to improve the lives of those living with MS as I dealt with the loss of my career, my image and grappled with my sense of self.  From the early days following my diagnosis they provided me with information, equipment, exposure to modified yoga and exercise programs, support groups and a friendly visitor program for people who can not get out. My children have benefited from the Kidz Klub program where they have had opportunities to attend amusement parks, and engage in activities with other children who live with a parent with MS.  I have participated in creating a newsletter, provided educational in-services to newly trained health professionals, provided office support, and assisted in writing grant proposals.  

The more I reflected on the role they have held in my life for the last six years, the more committed I became to supporting them.  The MS Society of Canada is experiencing some significant growing pains due to decreased revenue.  They receive no government funding and rely solely on public donations to enable continuing research goals and support at the local level to those living with MS.  They are in a position to need to make some serious decisions about where their priorities lie.  I only hope they are able to find a way to keep offering supports "on the ground" and to provided needed dollars to enable research to continue.

I would encourage you to complete this survey to let the MS Society of Canada know what is important to you: (Canadians only)

This 'renewal initiative' outlines the potential priorities.

Here is the survey (Click on the survey monkey link)

And finally to consider making a contribution to the local MS WALK in support of those who support people living with MS.

“There is no greater agony than bearing an untold story inside you.” Maya Angelou