What Data Won’t Tell you About Caregiving

As I entered CaringBridge through the technology door, the software engineer in me always seeks data to validate the personal experiences of patients, caregivers, family and friends sharing a health journey. So I could hardly wait to dig into the motherlode of facts and figures published in Caregiving in the United States 2015, a major report produced by AARP and the National Alliance for Caregiving.

The numbers were big, with 43.5 million Americans fitting the definition of “caregiver:”

“A person who has provided unpaid care to a relative or friend over the last 12 months that may include helping with personal needs or household chores. It might be managing a person’s finances, arranging for outside services, or visiting regularly to see how they are doing. The person receiving care does not necessarily live with the caregiver.”

And as it turned out, the profile of a typical American family caregiver looked just like – me. During the years I supported my Mom, Bonnie, through breast cancer, followed by liver cancer, I was in the margins of being a 39-year-old woman taking care of a 68-year-old female relative who needed ongoing support associated with a long-term physical condition. I was also working full time, as are 56% of family caregivers.

But in scanning the 87-page report, which should have been data-driven heaven for me, I felt somehow removed from the numbers. The facts and figures seemed very separate from my realities and responsibilities as a family caregiver.

If someone had surveyed me in the midst of juggling Mom-care, kid-care and a busy job, I may have appreciated being asked:

  • “When was the last time you ran a brush through your hair?”
  • “Is helping your Mom in the bathroom more awkward for you, or her?”
  • “How often do you just want to curl into the fetal position?”

My analytical brain understands that measuring emotion like this is the equivalent of wrestling smoke, but my experience was certainly more relate-able to this kind of survey. Without minimizing the value of the comprehensive Caregiving in the United States 2015 report, being recognized as 1 caregiver in 43.5 million would not have made my load feel lighter.

But comprehensive research is nevertheless critical in advancing the national conversation on caregiving. It will take facts and figures – and lots of them – to help shape future policy and decision-making that can help keep caregivers going. Those of us who have been run ragged know that “something’s gotta give,” before we give out.

So while you’re busy counting out pills, paying bills and wondering how you’ll survive the day, it is possible that data being crunched in the background will eventually translate into better respite care, broader hospice services and a more integrated health-care experience. If not for today, for tomorrow. Hope springs eternal.

Sona Mehring is founder and chief ambassador of CaringBridge, and author of “Hope Conquers All.”


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