Why Do Family Caregivers Have to Do *Everything*?
It’s horrifying to think what would happen if we didn’t.
My parents use a doctor, to whom my dad remains committed, who makes us crazy. We complain about this doctor and his office staff regularly and consistently to my dad, encouraging him to find another.
He won’t budge.
Recently, my dad visited his ostomy nurse because of a concern about his skin. The ostomy nurse shared his concern and offered suggestions to help, including using a home health agency that offers specialized ostomy care.
Music to my ears! A referral to an agency that understands what my dad needs! The struggle to find a health care professional who understands the unique needs of the skin of a 90-year-old has been an ongoing struggle. It took us two years to find this ostomy nurse who understands my dad’s age and skin means his needs differ than a 50-year-old patient.
The day after my dad’s appointment with the ostomy nurse, my parents had a doctor’s appointment. (They declined to reschedule so that my sister, brother or I could attend. Another frustration. But anyway…) Because of my coaching, my dad asked the doctor and his nurse to order home health through this new agency. They pushed back, telling my dad that this agency wasn’t on their “provider list.” The nurse finally gave my dad a general referral for ostomy care.
That meant: I had to call the new home health agency, ask them to call the doctor, fax the referral to them. Although the doctor never returned a call to the home health agency, the doctor’s nurse called my dad to give him a hard time about using an agency that’s not on “their provider list.” (I think we can all guess why this provider list is so important to the nurse.)
I am ensuring my father receives the care he needs. The doctor’s office is protecting their relationship with a provider (and that’s a generous interpretation) rather than ensuring my dad receives the care he needs.
What if I didn’t understand how the system works? What if I didn’t understand that my dad has a choice of provider? What if I didn’t simply circumvent the obstacle?
You have your own versions of this same story. We have to do much of what the system just won’t. (In my Certified Caregiving Consultant training, I teach how we can support family caregivers through the endless experience of taking on these kinds of illegitimate tasks.)
It’s why I get so frustrated when anyone says “family caregivers don’t self-identify” which is why it’s so hard to reach them with help and support. I read this statement twice this past week — once in a post on Linkedin and a second time in a research report.
The idea that we must identify ourselves as “family caregivers” to get support and help just galls me. We identify what we do during every doctor’s appointment with our caree, when we pick up prescriptions, when we sit in the hospital with our caree, when we eat a meal at a restaurant with our caree.
We are visible in our role. The health care system *sees* us, interacts with us, communicates with us, asks us for updates, looks to us for decisions.
Why do we have to tell the system we are family caregivers and need support? The system uses us as a workforce it doesn’t reimburse. If the system sees us a workforce, certainly they can see how we look. We look like we need help.
When I bring my parents to doctor’s appointments, they look put together. I look like crap because I’m running, juggling, stressing.
Why does the system let us take a toll? Why do we have to say “I’m a family caregiver” in order for us to connect to the support and help we deserve? Why doesn’t the system just support and help us? Why don’t we receive a list of resources to help us every time we interact with the health care system? Why doesn’t our doctor during our own appointments offer us a list of caregiving resources just in case we also care for a family member?
Why do we have to do everything?
Resources
Join me on Thursday, June 16, at 1 p.m. ET for a 30-minute Soul Break.