A year ago, Helen Ries’s mother died unexpectedly and Ries became the primary caregiver of her brother Paul Knoll. Knoll has Down syndrome and had lived with his parents most of his life. Ries admits that her first year as a caregiver wasn’t easy. In fact, she chronicled her challenges in a blog post entitled “My 2015 Failure Report”. The post went viral, leading to, among other things, a full-length interview on the CBC radio news magazine The Current.
Recently Caregiver Exchange asked Helen to share with other caregivers some of what she’s learned over the past 12 months.
On family dynamics
“The biggest thing I’ve learned is that I have to drop my agenda. It’s my brother’s life and my role is to facilitate his life, not orchestrate it around mine. That’s difficult to do. I have to let him make his own decisions and support them, even if I don’t agree with them. It’s especially hard because I’m the older sister. I’ve always been the more powerful and dominant one – but I really have had to shift that.”
On setting up a care system
“I thought I could set up a caregiving circle all on my own, but I really should have used some of the existing tools, such as www.tyze.com. Tyze was originally created for families with a person with a disability, but it’s now being used to facilitate all kinds of caring circles. Using it would have saved me a lot of effort.”
“I wish now that my mum and dad had started formalizing a caregiving circle for Paul earlier in his life, and I wish they had involved more professional caregivers. They did it all themselves. I understand why, but it would have been so helpful to have a base, and more continuity for Paul. You need to establish a network that’s broad enough to allow for the fluidity in peoples’ lives, too.
On financial matters and government funding
“It’s been such a disappointment to see how the system really works. The Henson Trust is not as straightforward as I think my parents had expected. It is challenging to negotiate all the rules and still provide my brother with his best life."
“I’ve been thrust into an advocacy role but frankly I’ve come to feel that advocacy in social services only falls on deaf ears. Now I’m more focused on finding ways to work around the system.”
“It’s important to have a good team of lawyers and financial advisors around you, giving you good advice – people who are willing to go beyond to find solutions.”
On looking after yourself
“It sounds like a cliché but you do have to take care of yourself, because you’re the strongest warrior for your loved one. I haven’t done a good job of that in the past year and I’m noticing some health effects. Now I’m consciously trying to take better care of myself. If I’m not well, everything falls to pieces.”
“You have to learn to accept help. The ego piece gets in the way – you don’t want to bother other people or always be asking for help, but you have to.”
“Being happy isn’t easy. I’m grieving and I’m facing a whole new level of responsibility. Finding happiness in this situation is hard, but it’s my life too. You really only have today, so you’d better make it a good one.”