Jill and Michael

Jill and Michael

orange handprint

The Pritchard Family

My journey with Michael began in 1983 when, as a three year old, he joined our family by adoption.  We knew he had challenges – he came with a diagnosis of Down Syndrome – but Michael grew and excelled as he became a much loved member of our family.  His sister and brother proudly call him ‘my brother’.Michael graduated from Grade 12 at the same secondary school as his siblings.  I couldn’t have been prouder to see him there, on the stage, accepting his diploma.  Michael’s last few years at school had been rough, having been diagnosed with Type 1 diabetes and nearly losing his life to a ruptured appendix and a subsequent massive infection.  But, Michael pushed on and was fortunate to become part of the ‘staff’ at our local Community Living sheltered workshop.  Oh, how he loved to serve in the restaurant – he was a regular “Mr. Congeniality”.  He moved into his own apartment, with lots of support from Community Living staff and family.  He was very much a part of the community.In 2006, it became obvious that Michael was struggling – with work, with self-care, with his diabetes, with life in general.  A comprehensive medical and neurological examination revealed that he had developed dementia.  It became clear that he was no longer safe living in a supported independent living apartment.  New plans had to be put in to place.  By this time, I was living and working in Toronto – finally focusing on my career after years of fitting my career around the lives of my three children.  Two were enjoying successful careers themselves after completing their post-secondary education.  Michael was, I thought, settled in Chatham.  Then, dementia started us on a new journey.It was quickly obvious that I needed to return to Chatham to care for Michael – there were no group home beds available (and a multi-year waiting list) and living in Toronto was too expensive an option.  And so, our new life began.  I wasn’t eligible for Employment Insurance – I wasn’t ‘available’ for work as I was already committed 24 hours a day to Michael.  So, in addition to Michael’s ODSP benefit, we lived on my previously acquired RRSP’s.  When those ran out, I had no option but to turn to Ontario Works.People ask me what is the hardest part of this journey we’re on – and, aside from the obvious heartbreak of seeing someone’s intellectual abilities decline so rapidly, I generally respond “having to live in poverty”.  I am one of the fortunate ones who DO have access to Special Services at Home funding – a $3500 annual grant that allows me to have occasional weekend relief.  However, the adult respite program in our community is so overwhelmed with requests that it became necessary this year to limit the number of weekend stays to only six per year, from the previous twelve.  Michael’s sister and brother now live many hundreds of kilometers from here – we are without any other family support – and there are many days I think just how tough this journey is!What can be done to help families like ours?  A family caregiver benefit, like that which is offered to family members in the United Kingdom, Australia, and many parts of Europe, would be an incredible help.  There is a huge societal cost to relying on family caregivers – but we also save governments vast amounts of money while we care for our disabled family members at home, rather than in institutions or hospitals.  Monetary recognition of the critical role we play would be wonderful!  In addition, we desperately need more respite beds in our communities – we need to know that our family members are being well taken care of while we re-charge our batteries, or simply catch up on our sleep.  Six weekends a year simply isn’t enough.  Finally, a good quality of life is everyone’s right – having a disability and relying financially on Ontario Disability Support Payments should not negate that right.  There should be an urgent review of those benefit allowances which, in real terms, have failed dismally to keep up with inflation.Would I undertake this journey again?  In a heartbeat!  This journey takes us to places we’ve never been, on roads others seldom travel, but always brings joy.  Late at night, after a long and often stress filled day, I watch my son as he sleeps and know why I’m here on this journey. 

March 4, 2010