Good morning, esteemed members of the committee. Thank you very much for this opportunity.
I am here before you today because my husband, Sidney Valo, lost his heroic battle with ALS in December 2008.
Our life, as we had known it, came to an abrupt end the day of his diagnosis. Instead of pursuing his own interests, Sid devoted himself to raising public awareness and to gathering funds, which is so necessary for ALS, and he was thus able to collect nearly $300,000, despite the fact that he was progressively losing his ability to walk, to eat and to speak.
It is also because of my husband's legacy and commitment to the ALS community that I am here today in the hope that you may gain a better understanding of the devastating toll of this disease.
Sid and I were made painfully aware that ALS has no known cause and no cure or effective treatments. While we were grappling with this reality, we had to quickly sell our home, relocate to an apartment that could be made accessible, set our financial affairs in order, and prepare our children for the worst.
As the disease progressed, Sid became physically paralyzed and totally dependent on full-time care, while remaining cognitively intact and acutely aware of his demise. Not infrequently, he was emotionally tormented at the pain and stress his fatal illness was causing his family. To that point, two of our children took longer to complete their university degrees. We also lost a source of income when I had to give up my psychology practice of 20 years.
After he died, I was diagnosed with post-traumatic stress disorder, and it is only in the last six months that I've been able to resume my work on a full-time basis.
I also made a conscious decision to relinquish my role as wife in some respects and to assume the one of primary caregiver. While this was physically and emotionally taxing in ways I could not have anticipated, I came to realize there were many less fortunate people than me who were doing this with far fewer financial, logistical, and technical supports.
The equipment and personnel required, such as specialized caregivers, are considerable and the costs can be staggering and can leave families in financial ruin. While resources and equipment and tools exist, these aren't always readily available, and for those less savvy in navigating the system, it's easy to see how overwhelmed and demoralized family members can become.
Many individuals with ALS are often unable to be fully cared for at home, sometimes because the primary caregiver is also the primary breadwinner, and other times because the family, simply put, burns out. This has psychological consequences that can leave the families divided and shattered. Despite the many supports we had, I often felt on the brink of collapse.
These are but a few of the compelling reasons that we desperately need to revamp Canada's compassionate care policy—