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My aunt is a caregiver. Her husband, my uncle and mom’s brother, has amyotrophic lateral sclerosis, or ALS. He’s had it for almost 20 years, and in that time I’ve watched my aunt adapt to each new need with grace and aplomb. When she recently arrived at a family gathering in their handicap-accessible van, I watched helplessly as she unloaded her husband in his powered chair and went through her checklist, all while politely declining help. She doesn’t need it because she knows her system.
But to be sure, she needs other kinds of help—especially in the form of empathy, understanding, and some occasional rest.
I’ve thought about my aunt a lot lately because I’m currently a temporary caregiver to my husband. He had ankle surgery and is now wheeling around our (modified) house on a knee scooter. As a paramedic I have a pretty good understanding of postop stuff: medicine dosing, DVT/PE prevention, best practices for patient movement and access/egress. But as a partner it’s clear I lacked a complete understanding not only of the weight of these responsibilities physically, logistically, and emotionally, but also of the difficulties of navigating in the world while disabled.
Yes, we got a disabled parking permit. No, there aren’t always empty spots. How did so many people get those permits?
Yes, we modified the house so the scooter can roll freely. No, it doesn’t mean my husband can navigate on his own. No matter how many Uber Eats or Grubhub orders, I still need to cook often, do all the laundry, dishes, chores, and driving. While we don’t have kids, I’m quickly realizing this is what parenting entails (for a lot longer than six weeks).
And yes, I’m learning (slowly) to bite my tongue and not bark unsolicited help while my husband figures out the best approach to his latest task. He’s not my patient, and with both our patience levels pretty tapped out, he tires quickly of me being Mrs. Paramedic-Know-it-All.
Why aren’t public places more easily accessible? I can’t imagine dealing with this on a daily basis, as my aunt does. We ventured out to a museum and found the staff and public more than solicitous, but that didn’t help when the bariatric wheelchair provided to us was so wide our knuckles were scraped entering and exiting the elevator and the nonautomatic, heavy glass doors all opened out.
I’ve come to realize in this short taste of being a caregiver that it is, frankly, exhausting. I knew that in theory; I’ve responded to many calls as a medic where the caregivers provided the medical history, explained their loved one’s symptoms, rustled up all the meds, and collected the bag, wheelchair/walker/cane, paperwork, and change of clothes as we called over our shoulders, “We’ll meet you at the hospital!” I know the caregiver has a big weight to carry. I know in hospice situations there is often an option for caregiver respite, where the agency provides relief personnel to give the caregiver a short break. Is it enough? My uncle is not on hospice. His wife does not get much respite.
How do people do this for a living? How does my aunt go through her daily tasks and take care of herself while also taking care of her husband’s needs? How do caregivers not get frustrated when navigating the world out there that isn’t so accessible or friendly to those who are differently abled? How do they keep their chins up while entrenched with the responsibility of taking care of another human?
I recently read about Arthur Kleinman, a professor of psychiatry and anthropology at Harvard, who published a book called The Soul of Care: The Moral Education of a Husband and a Doctor. He was a caregiver to his wife for more than a decade. He calls this responsibility “enduring the unendurable.” Well said, Dr. Kleinman. Among other astute observations, he notes most of us live under a veil of ignorance about this topic, that traditional aspects of masculinity were challenged in his case, that he needed to ask for help more often, and, most important, that we radically rethink our healthcare system’s approach to caregiving, to strengthen it and support it. (Find this piece at https://khn.org/news/as-his-wifes-caregiver-a-doctor-discovers-whats-missing-at-health-cares-core/.)
EMS providers: Take the time to recognize those caregivers on scene and maybe spend a minute or two asking them what help they need. Otherwise, just be patient out there in the world: Hold the door for someone or offer some emotional or physical support to someone you know who is a caregiver. Believe me, they need it.
Hilary Gates, MAEd, NRP, is the senior editorial and program director for EMS World.