daughter checking her father's blood pressure, work that was once done by private duty nurses and is now done by unpaid and untrained family members

I’d just finished Muriel Gillick’s Old and Sick in America, an eye-opening ‘narrative tour’ of the US eldercare system and its recent history, when her latest book, The Caregiver’s Encyclopedia landed on my desk.

Gillick understand the eldercare system as well as anyone possibly can, as a medical doctor specializing in geriatrics, as a devoted family member supported aging relatives, and now as someone who is herself aging. She has seen the system evolve first hand. It was all the way back in 1998 that she wrote Choosing Medical Care in Old Age.

So it was a great disappointment to me to see the opening line that’s on the press release, the book description, and the back cover: “Caregivers hold the key to the health, well-being, and happiness of their aging relatives, partners, or friends.”

It’s clear that this book reinforces the idea that you are responsible for both the patient and yourself. No pressure!

So much of the conversation around caregiving treats the elderly as objects, incapable of making their own choices once they cross a certain threshold, and the caregiver as responsible for the ultimate outcome — which, spoiler alert, in eldercare and any human life, is death. This narrative encourages toxic family dynamics and codependence while blaming the caregivers themselves for burning out.

However, Gillick didn’t invent this toxic narrative and has plenty of company, unfortunately, in promoting it. The idea that family members are responsible for the elderly is so pervasive that few people, even experts in eldercare, stop to question it. In the US we’re all independent agents until it’s time for society to step up and uphold the social contract of responsibility for the needs of its citizens — then it’s suddenly a family responsibility.

The book promises tips on “making sure you don’t burn out” but gives you exactly six pages out of 376 on the topic. It rattles off a list of the signs of burnout and tells you you can’t do everything (but you’re responsible for making sure everything gets done). It’s your responsibility to do all the labor of caregiving — administrative work for insurance, around the clock nursing work, house work the care recipient is no longer able to do, financial management on behalf of the care recipient, and management of all medical care — while not neglecting your physical health, emotional, health, or going bankrupt. And if you need help with this, it’s your responsibility to find it — and you’ll feel guilty for not being a good child and not loving your parents enough.

My suggestion is this: if you are struggling to navigate the US healthcare system in support of an elderly family member or friend, you should buy this book and tear out chapter 53.

As for the rest of the book, it’s an invaluable resource both for people in the thick of it and who see it coming and want to prepare. It is not just easy to become lost in the US healthcare system, it is almost unavoidable without expert guidance. Gillick explains:

  • the roles of the various members of the medical “team” you’ll encounter,
  • how to navigate care in the hospital,
  • how to find and select a rehab facility,
  • how to get set up to monitor conditions for both chronic and acute home care, and
  • explains the work that remains for family caregivers when their loved one is in a nursing home.

Gillick knows the system inside and out and is brilliant at making complex systems easy to understand. If you’ve read her other books (which I recommend you do) you’ll recognize her narrative style, which reads like advice from a caring and well-informed friend.

Gillick’s advice could very well preserve the health of the person you’re caring for, which is obviously a boon to your own quality of life. However, perhaps the most helpful insight you can glean from this book is what work the US health care system expects family members to do, without pay, training, or assistance. The work you are expected to do goes far beyond the status obligations of being a good spouse or good child.

If it feels like you need a degree in caregiving and no other responsibilities to be able to do this work, you’re right.

The systems Gillick is artfully guiding you through didn’t exist when our great-grandmothers carried out their familial duties. And, chances are, most of their generation weren’t expected to do this work on their own. This labor was once done by paid professionals and is now the “responsibility” of family members.

The insurance industry and the government demanded that the health care system reduced costs and they responded to that by reducing the amount they paid (a largely marginalized and exploited female workforce) for care and dumped that work onto (mostly female and often marginalized) family members. This work transfer was explained by N.Y. Glazer back in 1993, but that wasn’t enough to stem the onslaught of messaging framing this labor as a family responsibility.

Being a loving family member entails being a family member. It doesn’t mean taking on responsibility for someone else’s entire life. Elderly Americans deserve autonomy and dignity, not being made into a burden.

Written by Cori Carl
As Director, Cori is an active member of the community and regularly creates resources for people providing care.

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