I was first introduced to the idea of home care when I became my grandmother’s caregiver. I was in middle school at the time. She didn’t need a ton of support from me; some meal preparation and socialization could tide her over until my mother came home to handle the medications, creams and other skilled care needs.
She later graduated to a higher level of care that we couldn’t provide ourselves. This all happened so quickly. I was always home during these intermittent nurse visits to help translate since my grandmother, who was from Vietnam, didn’t speak any English. This language barrier created worry and stress for me because I knew that my grandmother not speaking English was a disadvantage for her care.
Home care from a family member’s perspective
Despite being home, I felt completely out of the loop in my grandmother’s care. At the end of each visit, the clinicians would find me to sign their tablet — our unspoken routine.
I didn’t want to be a bother or disrupt the care process by intervening or risk being labeled as that “difficult” family member, but upon reflection, I wish that I had. This was my grandmother; she was my best friend. The way that she was cared for mattered to me.
After she passed away, I went through her numerous care notebooks and binders with visit notes from clinicians and most of them were a couple of words long. “Gave medication.” That was the extent of most entries.
We had an amazing home health aide, however, who took my grandmother outside in her wheelchair — a two-person assist — pick a flower from our yard and bring her inside with a smile from ear to ear. She spoke to my grandmother like a friend.
Once I stepped into the home care workforce as a caregiver and scheduling/intake coordinator, I brought these experiences with me. Canceled shifts were a common occurrence due to the nature of the business, but this didn’t sit right with me. Whenever I had a canceled shift, I offered to go myself. We have to do better for family caregivers.
Now that I have seen both sides, I believe that home care agencies should shift their focus more onto family caregivers. Having resources in place that cater specifically to family caregivers can set an agency apart from others. Extend a hand to help them out.
Your support can take many different shapes. It could be letting them know that there’s a podiatrist in town or explaining how you apply for VA benefits. The healthcare system is hard for patients and families to understand.
Why should home care pay attention to family caregivers? Most of the time it is the eldest daughter of an aging parent who is calling around for services. Odds are they are the primary caregiver as well. According to the Family Caregiver Alliance, 56% of family caregivers work full-time outside of their caregiving duties; this is their second shift of the day.
According to an AARP report, family caregivers provided 470 billion hours of unpaid care to their loved ones in 2017. When a family member is calling around for some form of support to care for their mother or father, they might only need a referral to a Medicaid program to become a paid family caregiver, or training on their loved one’s care. These are tasks that require little effort, but by taking the time, you’re hearing out a caregiver’s call amid a crisis.
There are 53 million family caregivers in the United States (according to a 2020 report from the National Alliance for Caregiving and AARP) — and counting — who could use your help. Since you have a front seat into its operations, lend your experience and knowledge when possible. This not only can help you develop rapport with the family of the patient, but it also build trust with your community.
Jennifer Lagemann is a former family caregiver, as well as a professional caregiver and administrator at home care agencies. She works as a writer and researcher, helping care providers to create patient- and family-friendly websites, articles and marketing literature.