Caregiver? Who Me?
Updated: Mar 7, 2022
Doctors are not caregivers
I haven’t always been willing to call myself a caregiver. Which is funny, because when I share this identity with others, most people will say, “Well of course you are - you are a doctor.” But the thing is that we doctors don’t actually consider ourselves to be caregivers.
We may be on the care team, but we don’t provide hands-on care in the way that nurses, physical therapists, and others do, every day. We certainly have other responsibilities like the ordering of medicines, diagnostic testing, documentation and communication of care decisions. And we may dress or debride a wound or help with lines or feeding tubes. But nurses shoulder 99.9% of bedside care.
And if I’m being completely honest with myself, I’d have to say that it was because doctors often consider themselves to be above bedside care. Hierarchies exist in every care system to protect doctors’ and nurses’ roles, even more rigidly so in Asia than in the US.
“Caregiving is a uniquely intersectional role, impacting all aspects of our lives.”
In assuming the identity of an unpaid caregiver, I take on at once the sovereignty of being a family member but also the mantle of stigma and others’ pity. Other doctors can see the prognosis down the road for my loved one as well as I can myself - it’s only going to get worse.
Uniquely intersectional role
Unpaid family caregivers are growing in number, especially during the global pandemic - they are unseen and unrecognized, even by themselves. Because they are usually still working full time and they may also be parents themselves taking care of kids as well as adults (the “hero sandwich” generation).
“Caregiving is a uniquely intersectional role, impacting all aspects of our lives,” observes Alexandra Drane, co-founder of Archangels, a platform that works to provide support for individual caregivers and their employers.
So why don’t most caregivers self-identify as such? For me it came on so gradually that I barely noticed it. I started out with picking up prescriptions and then attending medical appointments here and there. But suddenly there was a hospitalization, and I realized that I was going to have to restructure life to accommodate my new reality and to keep my loved ones safe.
For many of us, it happens suddenly with a serious diagnosis that feels like it’s too much to take in all at once. You have no time to process emotions in the moment, you are just trying to keep up with the flurry of appointments, logistics of transportation and paperwork, all the new information coming in, just surviving to the next day.
Experts are increasingly finding that caregivers are better at their jobs and can remain so more sustainably when they can self-identify as such. Caregiving is a real job and needs to be structured accordingly.
Caregivers who have not set proper boundaries or expectations will almost certainly experience resentment, guilt, overwhelm, and stress, which inevitably lead to negative impacts on their physical health. It’s in everyone’s best interest to find opportunities for others to chip in, negotiating and setting expectations for the family.
Having conversations about care needs, communication, finances and decision-making are the responsibility of the whole family, no matter who actually does the caregiving.
1. McKinsey Report: Supporting unpaid caregivers in crisis: a conversation with Alexandra Drane.
Concise and informative briefing on post pandemic findings in the caregiving population in United States
Tracey Lawrence provides legal and logistical advice and support to caregivers in the United States.
3. Archangels Caregivers Intensity Index
Website/platform with goal of reframing how caregivers as seen, honored and supported.