“Time flies over us, but leaves its shadow behind.”

Nathaniel Hawthorne.

Profound. Emotive. Reflective.

It’s been just over five years since my mom’s health crashed in June 2018 and life changed in many ways. Her Systemic Scleroderma journey since then has been challenging, starting with 17 hospitalizations in 22 months and a number of them life threatening. If that weren’t enough, shortly after her 17th hospitalization my dad was diagnosed with high-grade bladder cancer. That journey included surgery, two rounds of both chemo and radiation, and a prognosis in December 2021 of one year to live after it had metastasized to his lungs.

Miraculously, and shooing away any bad juju for saying this — both of them are relatively stable at this time. They made it to this point through some very uncertain times, with the fear of being immunocompromised and catching Covid notwithstanding. Although the way they move about life individually and together has certainly changed, it’s been a blessing for me, my siblings and everyone who loves them that they persevered through the many difficult moments and this year celebrated their 59th anniversary!

(For those of you who haven’t followed this 1 Day 1 Week blog, I invite you to go back to the very first post in August 2021 called Caregiving: A Journey Like No Other, to read about the beginning of the roller coaster that it’s been for them as patients — and me as primary caregiver/patient advocate.)

When I came to check on my mom in Spring 2018, I had absolutely no idea what was in store related to her health issues, my dad’s subsequent health issues, and my life. Although I’ve reflected on this at times (including in 1 Day 1 Week), these past two months have been more reflective than ever. The obvious reasons for that are the relative stability of my parents and more extended peaceful times.

It began in earnest during my two-week stay in Telluride (Colorado) in June of this year. That was truly the first extended (only) time in five years that I’ve taken for myself explicitly for self-care. There were so many magical moments during that visit amidst the Rocky Mountains, which had me meet many wonderful people. Incredibly, in some way most were connected to aspects of my life in the past and in one very profound situation has ended up becoming a part of my present.

As I was stretching at a trailhead one day, a lovely couple walked up and I asked if they had done the trail before. They said no and were super kind to allow me to join them. We connected immediately, energetically – and I believe because the husband’s name is also Todd. Not long into the hike, we all connected on a deeper level that included caregiving stories related to family. I love when synchronicity happens — Todd’s wife Katie is now Director of Community Engagement & Care Champion for My Care Friends, the endeavor I conceived 20 months ago shortly after creating this blog and the Caregiving Insights podcast.

(l to r) Todd, Katie, & Me – Jed Wiebe Trail, Telluride, Colorado (June 2023)

The vision for My Care Friends was certainly born through all of the experiences I’ve had with my parents the past five years and shadows they’ve left behind. Yet, it’s also been greatly informed from other shadows — caregiving for my grandparents in their waning years, advocating for my sister in 1989-1990 after a horrific car accident, and interacting with countless caregivers and advocates over decades through my professional and volunteer work.

What’s the vision for My Care Friends? To provide a safe, trusted, informative, and enjoyable place to connect online for the millions of people who take on these caring roles, whether by choice or circumstance.

Our My Care Friends team of Yolanda, Jeff, Jack, Katie, and I, welcome all caregivers and advocates, no matter the extent of your caring situation, race, religion, ethnicity, gender, etc. Come join us and help grow our unique community, and let’s each make a difference in the lives of other caregivers and advocates!

Above all, thank you for all you do!!

#caregiving #caregivers #patientadvocacy