Sunday 12 June 2022

All My News: A Personal Update

 It's Sunday morning and the thrum of rain on our metal roof is lulling me into a thoughtful mood. It's a good day for writing. So I thought I would pause and reflect on my life and activities. Here's what's been happening: 


Jim and I have been updating our wills, Powers of Attorney and financial plans. Nicholas has a Power of Attorney naming us as his POAs but he needs a will. This requires a capacity test by the lawyer. So, next on our to-do list is prepare Nick for the test and coach him on his assets and various pension benefits. Nick needs a will because he has an asset - a Registered Disability Savings Plan, a financial instrument in his name that we've contributed to for many years. It's a great savings tool for Canadians with disabilities because the federal government matches our contributions up to a possible maximum of $90,000. This RDSP plan together with the Henson Trust that Jim and I set up in our wills ensures that Nicholas will have the money he needs to provide all the "extras" for a good life that we currently pay for, after Jim and I die. We've thought a lot too, about setting up a circle of social and medical decision-making family members and friends that will outlast me and Jim. For this aspect of our future planning, the resources available at the Canadian PLAN Institute have proved invaluable. "Safe and Secure" by Al Etmanski has been our essential guidebook throughout this whole family future planning exercise. 

Apart from future planning, I've been coordinating wheelchair modifications and new slings for Nick's ceiling track lift system. Of course Jim and I continue to carefully consult on our family's safe re-entry into society, given that much of the country believes that Covid is over (it's not). We speak with Nick on the phone or zoom every day and visit at least once a week (if his schedule allows!). 


I often laugh as I explain to new acquaintances that I am living my life backwards. For most of my adult life, I was a full-time primary caregiver for Nicholas and part-time helper for my Mum. Then in 2011, Nick entered his wonderful medical group home where he is now living his best adult life with the help of one to one nursing support. Mum died in 2018 at the age of 96. 

So, I began my working career as an older adult. I'm 67 now and I work on a variety of projects that spark joy and passion in my heart. I facilitate a free, online course through McMaster University Department of Continuing Education called Caregiving Essentials. It's a great course and for me, one of the best parts is hosting a (free) webinar series in which I get to have the MOST interesting conversations with all sorts of fascinating guests. You can watch all of our past webinars on YouTube HERE

Another project I'm deeply involved in at McMaster is the Family Engagement in Research Course. It pairs family members of children with disabilities (all ages) together with researchers in the field of disability. Course participants work in small groups to learn both the theory and practice of family-engaged research partnership. The course became so popular that we've evolved a new Leadership Academy to be launched this fall (stay tuned for more news). 

I've just joined the Advisory of the Canadian Centre on Caregiving Excellence, a new organization that promises to radically shift (in a good way) the manner in which both paid and family caregivers are supported in Canada. It's fantastic and I can't wait to see the change that's coming. 

This Thursday, I leave Ottawa for Canmore, Alberta, where I'll be joining fellow board members for a weekend working retreat of the National accessArts Centre. It's an AMAZING arts training and exhibition centre for both passionate amateur as well as professional disabled artists. 

I care so much about all the work I do for all these organizations because they each have an important role to play in upending power structures that oppress people with serious health challenges or disabilities and their families. I believe everyone who experiences being marginalized (including us caregivers!) should have an equal place at those decision-making tables that concern what happens in our daily lives. I also believe in the worth of my own and others' caring life experiences and I talk about that worth every chance I get. 


I've been taking care of myself this spring by spending time with friends on the golf course and tennis courts. For me, keeping fit has been harder during Covid because I used dance for fitness. I'm still super careful about masking indoors so the gym is out of the question. That means I've had to (re)learn outdoor sports from my youth. During my 25 years of caring, I could never leave home to pursue any kind of sports in my community, but there's nothing stopping me now. So, I've taken lessons and I'm out there doing my best (which isn't very good). As they say though, golf is a good excuse for a lovely walk with friends and for me, tennis is about the laughter at both the good and the terrible shots. 

Me with my tennis coach, Petra Januskova - thank heavens she is so kind! 

Daisy is a guest of honour at our little (not fancy!) golf/tennis club! 

From my house to yours, I wish everyone who visits The Caregivers' Living Room a restful day in which at least one person says to you: THANK YOU. 

1 comment:

Diane said...

This post was like filling in the blanks for many of us who have been inspired by your journey. Inspired, motivated and acknowledged by your journey. A very good reminder for us that wherever we are in time there is an opportunity to expand, even if it is slight. A small opening can beget bigger ones.
Thanks for this and all that you do, Donna!