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Caregiver Burden

It was a straightforward phone message (names changed): “Hey Dr. S., this is Bobbie Jones, April Dixon’s granddaughter. I was calling to inform you that April passed away today at City Hospital. They said she was bleeding in her stomach or something. I’m not quite what sure what happened, but she got real sick. But she’s gone, so, thanks so much. You’ve been a real neat doctor, and it’s been good working with you through the years taking care of my grandmother. Take care. Bye.”

Bobbie Jones is a saint. Pure and simple. She took care of her 88-year-old grandmother with tender, loving care. I am certain if left to the vagaries of the “healthcare system” that her grandmother would have died at least three years ago, maybe earlier.

Ms. Jones will get no recognition. No income. No honors, save this blog post which she’ll never see. She will get a letter from me, expressing my condolences and appreciation for the love and care that she provided her grandma. She singlehandedly advocated for an octogenarian with advanced dementia and probable cancer (we were never able to get a definitive diagnosis of it) and gave her a quality of life that I would want were I in her grandma’s shoes.

I’ve read lots of stuff about caregiver burden. As you know, our population is aging because people are living longer on average than in eras past. The implications are many, but there are couple of things I see every day that I’d like to emphasize: Patients with caregivers do much better (i.e. feel better more often and live longer), and the caregivers usually neglect their own health (sometimes dangerously so. I have a couple of patients with dementia who have outlived their children, sadly.)

When you search the literature, you’ll find a lot about caregiver burden. It emphasizes baby boomers who are caring for their aging parents. If you add the term “grandchild” to caregiver, you’ll find articles mostly about grandparents raising their grandkids. But you won’t find much about grandchildren taking care of their elders.

Where we live, in the shadow of GlassHospital, this is a fairly common arrangement.

Bobbie Jones is one such grandchild. I worry about her, since she’s lost not only her dear grandma, but the focus of her life. Her grief will no doubt be prolonged, and her “re-entry” to the job market, if it can be called that, will be difficult. What “marketable” skills does she have, save caregiving, in a society that vastly undervalues it?

With her expertise, some lucky elder will find a true blessing when Ms. Jones becomes their homemaker, home health aid or advocate. My thoughts and prayers are with her.

This post by John H. Schumann, FACP, originally appeared at GlassHospital. Dr. Schumann is a general internist in Chicago’s south side, and an educator at the University of Chicago, where he trains residents and medical students in both internal medicine and medical ethics. He is also faculty co-chair of the university’s human rights program.

His blog, GlassHospital, provides transparency on the workings of medical practice and the complexities of hospital care, illuminates the emotional and cognitive aspects of caregiving and decision-making from the perspective of an active primary care physician, and offers behind-the-scenes portraits of hospital sanctums and the people that inhabit them.

*This blog post was originally published at ACP Internist*

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One Response to “Caregiver Burden”

  1. Dear Dr. Schumann. Thank you for caring about caregivers. In the nine months since my mom died, at 95, all my memories of looking after her for two solid years constantly rush through my head, leaving me so distraught I have no fix on real life. We were both shut-ins; she lived here in her little cabin in the woods on the east side of Algonquin Park, and I lived her with her, in the back room, on call around the clock. Sleep deprivation, exhaustion, despair, take time to resolve. Now I am looking for a way to pay my bills, bank loans which I still have, with an early pension. It all goes to the bank. She lived two years longer than her MD figured. It was worth it.

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