I sat in front of my doctor for the first time since before the pandemic. She was concerned: “You’re way overdue for a couple of screening tests and a vaccination.”
I explained that between Covid waves and caregiving for my mom, I’d had to cancel and reschedule the most the screening test at least 3 times. And, caregiving for my mom was becoming more intense, which was going to create more challenges.
She asked if anyone was helping me. I explained that my husband is a huge help. But I’m the only adult child who lives within driving distance. And just within the past few months there’s been a couple of falls, a fracture, an ER visit, a hospitalization, and a car accident. My doctor was starting to get the picture.
I’m not alone. There are over 50 million family caregivers or care partners in the U.S. And 54% of caregivers don’t have time to tend to their own medical needs. Many say their own health is worse. While others don’t realize that as caregiving becomes more intense they likely won’t eat well or get enough exercise; they’ll have a hard time seeing friends and become socially isolated, they won’t get enough sleep, and they may start to drink or smoke more to cope with the stress. Many caregivers (studies find anywhere from 40-70%) also develop clinically significant depression.(Zarit, S. (2006). Assessment of Family Caregivers: A Research Perspective. In Family Caregiver Alliance (Eds.), Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference (Vol. II) (pp. 12 – 37). San Francisco: Family Caregiver Alliance.) There’s also financial stress, and the stress of doing hands-on nursing tasks we’re never trained for.
Is it any wonder the caregiver’s own health often deteriorates? And certain types of high-burden caregiving, like caring for a partner with dementia, significantly increases the risk of dementia for the caregiver.(Norton MC, Smith KR, Østbye T, Tschanz JT, Corcoran C, Schwartz S, Piercy KW, Rabins PV, Steffens DC, Skoog I, Breitner JC, Welsh-Bohmer KA; Cache County Investigators. Greater risk of dementia when spouse has dementia? The Cache County study. J Am Geriatr Soc. 2010 May;58(5):895-900. doi: 10.1111/j.1532-5415.2010.02806.x. Erratum in: J Am Geriatr Soc. 2012 May;60(5):1000. Erratum in: J Am Geriatr Soc. 2013 Sep;61(9):1642. PMID: 20722820; PMCID: PMC2945313.)
It’s become clear that being a caregiver is a social determinant of health (SDoH): a non-medical condition that influences health outcomes.
Why don’t caregivers just get more help and support? One reason that often sounds strange is: people often don’t see themselves as a caregiver per se: they don’t “self identify” for a year, or even many years. Yes, they know they’re helping to care for someone, but they don’t consciously think of themselves in that role, realize how long it will go on (average caregiving is about 5 years), or how it will gradually or suddenly become more intense.
I work in healthcare, and for years I thought of my mom as my dad’s caregiver. I didn’t see how much I was also doing, and how it was impacting me. I just saw myself as a daughter trying to help out. People also don’t like thinking of themselves with label “caregiver.” It can feel like it diminishes or re-defines their relationship.
There are a few ways we can start to improve this situation.
Clinics/Clinicians: Ask patients about caregiving as a part of histories Dr. Allison Applebaum and I recently wrote in an editorial (See free full text: Identifying family caregivers as preventive medicine) to encourage clinicians and clinics to ask patients if they’re caring for an ill or disabled family member or friend as part of a standard history or consult. This could help people self-identify sooner, and clinics would ideally help the connect them with resources.
Hospitals/In-patient Care: Train caregivers at the bedside. Hospitals can invite the family members who often nervously sit by the beside to become part of the care team and not only identify, but give them some hands-on training and education while they’re there. This is a better than overwhelming them with print outs, binders, and information during discharge. For example, check out the Partners in Healing approach.
Health technology companies: Build caregiver proxy access into your app or platform. I shouldn’t have to use a hack to access my mom’s medical record. And definitely test your apps with seniors and family caregivers. The aging population is only growing. And the way we use technology changes as we age.
Patients: Tell your own doctor if you’re caregiving. We can also give our physicians a better sense of the impact caregiving has on our health and wellbeing.
When I went back to see my doctor 8 months later, she saw I had a chance to get a couple things done — and that a couple tasks were still on my to-do list.
But this time she asked:
“Are you still your mom’s primary caregiver?”
It changed our conversation.
When I said “yes” – she asked, “How are you working and dealing with all of that?”
This time, I didn’t feel defensive or like I was somehow a “bad patient.” She expressed real concern for the way that impacted my time, energy and stress to both work and take care of my own healthcare needs.
It also helped her understand my concern and resistance to medications and treatments that have led to serious side effects and cascades of issues with my parents that I want to avoid. Watching these things play out in my own family has given me a much greater appreciation that all treatments come with tradeoffs — and it inspired me to do more with lifestyle changes. Couching these concerns in my family caregiving experience has changed these conversations.
It’d be great to see a brief assessment for caregiving become part of patient care. But as patients, we don’t need to wait to be asked. When we tell our clinicians about caregiving and how it impacts our health — it elevates the issue and builds insights and empathy.
Anything that can help people recognize they’re caring for someone earlier whether it’s a clinician, an app, or a friend or colleague, can help people connect with resources sooner so people are less likely to become second-order patients and casualties of caring.
