What If We Don’t Identify with the Definition?
When we don’t see ourselves in the definition, we decide help and support is for another but not ourselves.
Last March, I wrote that we ask the wrong question of family caregivers to learn more about the caregiving experience. We ask about the number of care hours provided each week. A better question asks about the amount of time we spend worrying. I also wrote that a caregiving experience is an emotional one and that the focus on tasks misses the mark.
We often hear that family caregivers don’t self-identify. That doesn’t matter because we deserve help and support regardless of whether we call ourselves a family caregiver.
On Friday, I had another insight about the common judgement that family caregivers don’t self-identify. What if we don’t identify with the common definition we receive about family caregivers?
I found the following definitions shared by national caregiving organizations and health care systems:
“Family (Informal) Caregiver – any relative, partner, friend or neighbor who has a significant personal relationship with, and provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition. These individuals may be primary or secondary caregivers and live with, or separately from, the person receiving care.”
“A caregiver is a person who tends to the needs or concerns of a person with short- or long-term limitations due to illness, injury or disability.”
“Caregivers provide care to people who need some degree of ongoing assistance with everyday tasks on a regular or daily basis. The recipients of care can live either in residential or institutional settings, range from children to older adults, and have chronic illnesses or disabling conditions.”
These definitions still miss the mark, though. Two weeks ago, during our Care and Share Grief Support Group meeting, an attendee struggled to explain why she’s having a hard time after her brother’s death. She easily spoke about missing him. She hesitated, though, when she talked about missing caring for him. Finally, she said, “I’m just not sure I could be called his caregiver.”
I asked: “How much did you worry about your brother?”
Without hesitating, she answered, “I worried all the time. Every decision I made, including where I lived and worked, took into account my ability to be available for my brother.”
“You were his family caregiver,” I shared. “It makes sense that you would miss caring for him. It was a significant part of your life.”
We may not identify with the term “family caregiver,” preferring to call ourselves spouses, adult children, siblings and grandchildren. The other big problem is that we may not identify with the definition we read and hear. When we don’t identify with the definition, we don’t believe that caregiving support and help is for us. It’s for someone else who takes on the tasks of caregiving.
When I managed an online caregiving community for 24 years, I regularly received emails from individuals doubting if they should join my community and receive support. “I don’t live with my caree,” they would say. Or, they wrote, “My situation isn’t as bad as the blog posts I’ve read.” I also told them to join. “The best day to build your support is on your best day,” I would respond. “Join us so we’ll be with you on your difficult days.”
I’ve never had anyone opt out (“that’s not me”) when I use our worries to define the caregiving experience. Everyone opts in. Because we worry so much throughout our caregiving experience.
Caregiving is an experience of worrying about the well-being of a family member or friend. As an experience intensifies, you may manage, arrange and provide help and support to maintain your family member’s safety and quality of life. As the experience continues to intensify, you may organize, manage and provide care to ensure to your caree receives the best care possible for as long as their life lasts. You deserve support and help throughout the experience, including for your worries.
How would you define the caregiving experience? Share your thoughts in our comments section, below.
(Image by Free-Photos from Pixabay)
Resources
The RAISE Family Caregiving Council report to Congress creates opportunities for us to advocate for better support and help for family caregivers. We’ve create an advocacy tool kit, currently under review, to help you share on social media and reach out to your representatives. I’ll share when the tool kit is ready for you to speak out and up to create a better experience.
We worry during our caregiving experience because we can’t know what could happen next. Take our assessment: How much do you worry?
The personal caregiving experience includes six stages. Where you are?
If caregiving has ended for you, please enroll in our pilot program for our six-class course Beginning Again After Caregiving Ends. When you enroll in pilot program, you receive free access to our course.
Join me on October 5 at 1 p.m. ET (Noon CT, 10 a.m. PT) to learn how we can help you launch in-house solutions at your workplace like caregiving support groups and, if you’re ready to dive into the deep end, the Caregiving Department.