(Part 3 of 3. Read Parts 1 and 2.)
A NPR article a few weeks ago (Caregiving can test you, body and soul. It can also unlock a new sense of self) inspired me to write about individuals self-identifying as family caregivers.
The article shared about two researchers who believe that family caregivers don’t ask for help and support because they don’t identify as family caregivers. In Part 2 of my series, I suggested the best answer to that question, Why don’t family caregivers ask for help and support, is because: It’s hard to add help and support!
I also want to offer an alternative perspective on this focus on family caregivers self-identifying. I formed this perspective because of hosting thousands of workshops, chats and support groups meetings with family caregivers over the years. (I know it sounds crazy to tell you I’ve hosted thousands of meetings with family caregivers. I first began hosting online caregiving events in 1996. Just in the past five years, I’ve hosted more than 500 events. It’s really been thousands over an almost-30 year period.)
During those events, when I ask family caregivers to introduce themselves, they offer their name. Then they introduce their carees.
The introduction can sound like this:
“I’m Denise and I care for my mom, Sally, and my dad, Roger. Sally was hospitalized in 2015 because of a stomach bleed which could not be stopped through traditional interventions. She had emergency surgery to remove 1/3 of her stomach. She couldn’t move back home so I moved my mom and dad to a retirement community. She hated the retirement community so I moved my parents nine months later to their own condo. She was then diagnosed with Parkinson’s disease. In the meantime, my dad’s bladder cancer spread in 2015 so he had his bladder and kidney removed. He then had a stroke and thought he was having a heart attack the week before my mom’s hospitalization. While my mom was hospitalized, my dad also had the skin cancer that covered the top of his head removed, using skin from his shoulder to replace the skin on his head. After that….”
Their introduction includes their caree and not themselves!
Over-identifying as a family caregiver — losing yourself to that role — is a huge concern. We spend way too much time and money taking about how family caregivers don’t self-identify. The other side of that coin is that family caregivers see themselves only in that role. (I teach how to manage a family caregiver who introduces their carees rather than themselves in our Caregiving Facilitator training.)
If we over-identify, then we also might make the dangerous assumption that we are only a family caregiver and so must be the one who does all the caregiving. We decline help and support because all we are is a family caregiver.
We’ve lost who we are so hold on too tightly to what’s left — caregiving.
We need to make sure we offer family caregivers opportunities to share regularly abut their experiences so they can reflect and process their experiences. We need to show up with support for them everywhere so they feel supported everywhere they go so they keep going on with their lives.
We need to see that everyone — not just some — is a family caregiver. When we recognize every one is a family caregiver, we integrate the caregiving experience into all experiences.
We then introduce ourselves like this:
“I’m Denise and I’m grateful to be here today. I run a small business that supports family caregivers. I also care for my parents. I love sports, writing and interesting conversations.”
We need to see family caregivers as multi-dimensional. We need to support all their identities.
We need to make sure family caregivers keep their life during a life of caregiving. We need to use all the colors in our life’s box of Crayons.
(Image by Margaret8 from Pixabay.)
(I used myself as an example in the introductions, including references to my real-life experiences caring for my parents. My mom died in 2022 and my dad died in 2023.)
Our Facilitator, Navigator and Specialist training programs are on sale through April 20. Pay what you want, with minimums, to learn how to lead caregiving and grief support groups, provide system navigation support, and become a Virtual Assistant to family caregivers. You also save when you enroll in our Professional Listening Artist program.
How are you? Tell us how you’re doing and about the impact of funding cuts and consolidations on you via our five-minute survey. While what’s happening inside the United States inspired our survey, please complete our survey wherever you live. (You’ll be prompted to enter your zip or postal code in the survey. You also can remain anonymous when completing the survey.)
We’re hosting Virtual Town Hall meetings in our chat room on CaringOurWay.com and Conversations on Zoom to better understand how these uncertain times are impacting you. We’d love for you to join us.
We’ll share results of our Dementia Care Family Support Pilot Program and our Impact on You survey during our Virtual Caregiving Advocacy Conference May 15-17. Registration is free. You can earn CEUs on May 15 and 16 for a flat fee of $30.