Eldercare’s Forgotten Daughters

There’s a great NYT article by Roni Caryn Rabin about the significant role daughters play in healthcare, and it’s got me thinking this morning.

From the story:

The essential role that daughters play in the American health care system is well known but has received little attention. But some health care analysts are beginning to sound the alarm about the challenges women face as caregivers — not just for children but for aging parents — often while holding full-time jobs.

As much as I agree with this paragraph and other points made elsewhere in the piece together with the JAMA Neurology op-ed that inspired it, this issue is not just about the daughters of dementia patients, either. “The best long-term care insurance in our country is a conscientious daughter,” write the JAMA authors. That’s true of any elder, frankly, not just the dementia patients. The price we pay as women, usually at mid-life, is high, no matter what illness or disability prompts us to become caregivers.

Full disclosure: I’m living proof of this phenomena, having “graduated” from over 6 years of eldercare with the passing of my mother last summer.

Before my mother moved nearby, I was freelancing. A former managing editor at a regional magazine in another state, I’d managed to string together a modest monthly income locally while raising a child. The money was nothing to crow about — it wasn’t even “full-time” work, but it gave me enough to feel like a productive, creative member of society.

Later as my eldercare responsibilities expanded, things got complicated. It’s one thing to tell a source that they might hear a child in the background during a call. It’s another thing to cancel plans or miss a deadline because you spent the night in the hospital advocating for your elderly, disabled mother, trying to get an ADA-compliant call button so she could ring the nursing station without having to yell.

To save my sanity, I had to “lean out” and pull away from the kind of writing that I once enjoyed. I did manage to put together a couple of small books for a non-profit educational organization, writing one chapter about bullying in the corner of a busy urban ER while waiting with my mother. The books helped save my sanity but they couldn’t replace the lost income.

Compared to a lot of caregivers tasked with managing the health and welfare concerns of two generations at once, I was incredibly lucky. I was never the primary breadwinner in my household, we had great insurance, and the financial hit was relatively trivial. With the help of Medicare/Medicaid, eventually I was able to secure permanent placement for my mother in a nursing facility nearby. Thus, I didn’t have to engage with dispiriting day-to-day physical care like changing diapers or catheters or moving her crippled body, things that she was adamant she didn’t want me to do in the first place.

Yet as an only child and with a mother who divorced late in life, everything else fell to me entirely, from managing doctors appointments to dealing with denials of coverage. (Yes, that happens to Medicaid patients, too.) Thankfully Mom did not have dementia until after she entered hospice, so at least when we interacted until that point, we had the comfort of a common, shared experience.

Still, as grateful as I am to have been able to serve Mom in her last days and while raising a kid, there was an emotional toll, one that I didn’t fully grasp until I no longer lived 24–7 waiting for the phone to ring, summoning me into action. Mom and I discovered over time that the places and spaces — the hospitals and rehab centers that cared for her over the years— where you’d expect the most sensitivity and care for disabled elders were often the most hard and callous, forcing me on occasion to literally “suit up” and push back on the system. She was robbed once, by staff members at a rehab hospital. She was hit by another patient. (Oh, the mind-numbing stories I have!) To keep her safe, I wrote emails, letters, and texts. I visited with administrators. I learned how to advocate. We discovered that even when a parent is in a nursing home, a watchful family member may be the best caretaker of all, the one most likely to catch health complications and troubleshoot other problems.

By both choice and necessity, I approached eldercare like the full-time job it was.

Not long after my mother passed, I landed a lucrative short-term assignment out of the blue. Honestly, the relief I felt at focusing on the article package and photos was palpable, more valuable to me than the hefty check that followed submission. Work since then has been hit or miss, with many old contacts having grown cold and the competition in the age of “everyone can be a content creator” having become more fierce than ever while I was off caregiving.

In my most irrational moments, I fear I’ve derailed my own writing career entirely. In rational moments, I see this post-eldercare phase I’m in as a transition, a turning point with an as-yet-undefinable-but-hopefully-happy ending.

Meanwhile, I remain ever sensitive to the fact that not only could it have been worse for me, it is already worse for other women who have sacrificed wages, career advancement, and retirement savings to care for loved ones at home and in facilities alike. I’ve met these women, seen them action. I’ve passed them in the halls and sat beside them in waiting rooms. They bear a great burden thanks to a broken system that will only come to rely upon them more and more as the population ages.

They need us to look after them as they look after our nation’s elders.

For their sake, I desperately hope that the JAMA and NYT pieces will start a much-needed national conversation about these issues, especially now in the wake of pending healthcare legislation in Congress.

Pamela Price blogs sporadically at RedWhiteandGrew.com. You can find her at Facebook and Twitter.