It’s Really About How We Feel
Caregiving is an emotional experience.
On Thursday, I led a group through our Certified Caregiving Facilitator training. The group included staff from a non-profit which serves grandparents raising grandchildren. Before joining our training, staff participants learn about the six stages of caregiving, a concept I developed in 1997. All training participants had either a personal or professional caregiving experience. Some had both.
During the first few moments of the training, we introduced ourselves and shared about our caregiving experiences. One participant said that she cared for a family member several years ago and that she helped her mom who has mental health issues but she’s not currently a family caregiver.
“How much do you worry about your mom,” I asked.
“Oh, my gosh,” she said. “I worry every day.”
You are in a current caregiving experience, I responded. Worrying makes us family caregivers. And, you’re definitely a family caregiver.
After I shared that insight that she’s a family caregiver, I saw an immediate change in the training participant. Her shoulders relaxed as if she released the stress she carried. She felt understood because I got how much she must worry.
On Friday, I led our Certified Caregiving Educator training, through which participants learn how to deliver the six stages as a presentation, workshop and keynote address. One training participant began her presentation by showing a 2013 video created by Jeff Foxworthy and Peter Rosenberger, who cares for his wife, called You Might Be a Caregiver If… This video was a huge hit in the caregiving space; we tweeted our own versions of the question and shared on Facebook.
When I watched the video with fresh eyes on Friday, I realized that it missed the mark. The video never addressed the emotional impact — the worry, the stress, the frustration, the overwhelm. With its focus on tasks, an individual helping a family member could watch the video and decide, “That’s not me. I don’t do anything of those things.”
I began helping my parents in 2004. We don’t use a wheelchair, I don’t organize their meds, I don’t know their Social Security numbers (but know their dates of births without batting an eye), and have provided wound care once in awhile. I could watch the video and think, “Hmmm… That’s not me because I’m not doing that right now.” Instead, I’m organizing, managing, adjusting and worrying. That’s caregiving, too.
This morning, I read an article about a call for participants for a research project. In the interview the researcher defines family caregivers:
“A family caregiver is really anyone — a family member, a friend, a neighbour — who provides help or assistance with everyday care that the person wouldn’t be able to provide for themselves. That includes emotional support, physical support, financial support.”
That’s a very specific definition and doesn’t include those who manage care from a distance, those who care for family members in a facility and those who have just started their caregiving experience by helping once in awhile. (I also believe researchers who have funding for caregiving studies need to generously share reimbursement with their study participants — family caregivers.)
If we truly want to reach and support family caregivers, we need to better define the caregiving experience. Because it’s an emotional one, we need to talk about those emotions. When I first began helping family caregivers through my own small business in 1995, I described the worry and the stress of caregiving. I reached family caregivers because I used that language.
We need to speak the language family caregivers do. We need to talk about how they feel. When we do, we normalize the caregiving emotions, which actually provides relief to those family caregivers beating themselves up for the worry and the stress they experience. Most important, when we talk about the emotions of the experience, we help family caregivers decide they need support, which could lead them to join online support groups, ask for resources during doctor’s appointments, and better advocate for their own needs within their family system.
In our Certified Caregiving Consultant training, which I led on Wednesday, we never talk about the tasks of caregiving. We spend a lot of time talking about the universal caregiving emotions specific to the stages of caregiving. The CCCs know their work with family caregivers will be about helping family caregivers manage their stress and their worries. The emotions, including how we feel about our caregiving tasks, weigh us down. Connecting to another who understands why we feel as we do can free us. (I’m in the process of revising my book about the six stages of caregiving to better reflect the emotional impact. The ninth edition of the six stages book will be available this summer.)
Family caregivers need us to describe the reality of the caregiving experience. When they hear language that speaks honestly about their reality, they’ll feel less alone. They’ll also find their own words to describe their own experience. That’s powerful.
(Image by dexmac from Pixabay.)