As a caregiver for my mother, I frequently interact with our health care system. Having received a liver transplant ten years ago via Medicaid and Medicare, my mother has also experienced other health consequences including kidney disease, type 2 diabetes, and chronic heart disease. Last Friday, my mother went in for an angiogram on her liver (to determine flow) while I struggled with a skin infection on my arm. Although my mother and I belong to different health provider networks, navigating the health care system for caregivers and the people they care for provides the basis of a love/hate relationship.

My mother had scheduled the procedure for 12:45 pm on a Friday, with our arrival time at 11:15 am. (Thankfully, I had called my doctor for an appointment about my skin infection the previous week, but was sent to Immediate Care due to a lack of appointments) A notification text the day before had indicated the time moved up to 2:45 pm, but my mother had clarified the time since we were depending on medical transportation. So we were both surprised when that Friday, at 5:30 am, we received a call from the transportation provider asking if we could be ready for a 7:00 am pickup. From that point,

• We arrive at the hospital with nothing in their records about Mom’s appointment. After being bounced through various departments, we learn where we’re supposed to head, and we’re allowed in.
• After arriving at the appropriate department. , we wait for Mom to be prepped. To kill the boredom, I sign up for text notifications about Mom’s procedure. While waiting, I call my primary care physician for follow-up; luckily, I’m able to schedule an appointment in between job search efforts and watching YouTube.
• Once Mom is formally prepared, I grab lunch and sit in the family lounge. My time is spent writing, doing some job searching, and catching up on social media.
• After making my way into the family lounge, I wait for another two hours when I am notified by an attendant that Mom is heading into her procedure. During this time…
• I receive a call from Mom’s transportation provider; after I apologize for the delay, the driver informs me that his manager does not want his drivers out after 5 pm, necessitating a last-ditch effort (Spoiler: hospital staff ensured that we had transportation home), and
• I discover that it was #NationalCaregiversDay on Twitter, and a tweet declared that “Caregivers are the health care system” and that caregivers “rock” at negotiating health care services.

And that’s part of the problem: too many people advocating for caregivers do not understand the totality of negotiating the health care system. (Watch the above video from Last Week Tonight With John Oliver for details). Rather than focus on advocating for systemic changes, these advocates tend to focus on more superficial issues. Many caregivers dealing with the complexities of the health care system on top of their caregiving duties have a greater risk for compassion fatigue and caregiver burnout. There’s a lack of acknowledgment about the burden and toll of caregiving on the individual, substituting self-help platitudes for more adaptive caring strategies and fostering connection and community.

But the greatest challenge in negotiating health care is engaging in self-care as a caregiver. Many caregivers are more likely to sacrifice their own health when caring for an elderly relative, and some caregivers experience health issues as a result. (Mental health issues for caregivers, especially male caregivers, are also critical). Caregivers are rarely reminded that self-care is not an indulgence, but a discipline. Negotiating a complicated system only adds to a caregiver’s stress; working to “game the system” makes it harder for caregivers and their relatives.

Final note: I was fortunate to learn that my skin infection was easily treatable with antibiotics.  However, getting to that point involved negotiating a tricky, often contradictory system that lacks empathy for patients and their loved ones. With the recent focus on public health issues around the coronavirus, it would be tempting to take a less even-handed tone about health care. However, caregivers – like many other people – have a complicated relationship with health care because of bureaucracy, costs, and lack of access to services.

And it shouldn’t be – health care is not an indulgence, it’s a right.

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