Time for another book review, pulling out the key points from the book Already Toast, by Kate Washington PhD, which I was able to obtain from the Rochester Public Library through their Interlibrary Loan service. She was a mom, wife, daughter-in-law, and freelance writer with a good career, when her husband who had excellent health care benefits through his work was diagnosed with cancer. She became his years-long primary caregiver, both in and out of the hospital, and then wrote about the sacrifices she had to make. And she came from the very privileged place in America of not having to worry about the financial side of things (the financial aspects most families struggle with will be a future post), or the level of problems re-entering the work force that those who are not self-employed struggle with. This book highlights the systematic challenges our care giving network faces in America, and how the gaps are currently covered.

How widespread are similar unpaid caregiving needs?

This must be relatively rare, right? That’s what all of the nursing homes and assisted living places are for, right? And this is part of that long term care crisis, surely? Nope, this is a separate, additional problem.

“the Family Caregiver Alliance and the American Association of Retired Persons (AARP) estimated that in 2020, 53 million Americans served as unpaid family caregivers, up from 43.5 million in 2015″ But this is an estimate published in May 2020; with COVID-19 hitting the nation in March, it’s hard to believe that all was “business as usual” on the caregiving front. You can read more about this caregiving report here.

And it’s a problem that is expected to continue to grow. Dr. Washington points out how this problem will grow, because we have a large upcoming group aging out of the workforce and into the recipients of caregiving phase:

“a large ‘care gap’ looms in our future because of the aging of the baby boomers – the oldest members of the generation turn 75 in 2021. … this cohort comprises some 76 million Americans”.

What does this caregiving look like?

It probably doesn’t look like what you expected. These often aren’t people who would need to have beverages and food delivered to their bedsides, and are otherwise self-sufficient. These are often still very sick, needy people, that historically would still have been housed in the hospital system or skilled nursing facility until they reached a greater stage of functionality.

When the hospital decided it was time to discharge her husband:

“We had a dedicated caseworker at Brad’s health insurance company, who called me to say she felt he still had too many complications and would be safer, for now, in the hospital. It struck me as telling that even the insurance company would rather pay for him to stay in the hospital than send him home. But the hospital insisted. I’ve long suspected – though I can’t be sure – that Brad was discharged when he was partly because he was nearing the end of the contracted length of stay negotiated for stem cell transplant patients. By discharging him, over my protests, the medical group transferred the responsibility for excess costs – including the hidden opportunity costs associated with the time it took me to coordinate care, negotiate with insurance, and care for Brad myself – directly to us.” … “In the lead-up to discharge, Dr. T told me that after Brad came home he would need attendance twenty-four hours a day and could not be left alone for even a moment. When I pointed out that I had two children and they needed to be taken places, such as school, he replied, ‘Well, usually family steps in and it works out fine.’ I wanted to ask the doctor whether his family was available, because mine certainly wasn’t. … The assumption that all patients have care help standing by is common… ‘You are not supposed to be alone when you get home… But no one really asks how you manage it once you are forced out of the surgical center – who, if anyone, you have to care for you, what sacrifices these caregivers might have to make or the support they require.'”

“Because of how the American healthcare system and insurance coverages operate, there’s an enormous gap between “too well for the hospital” and “too sick for home.” In this gap, in-home care is not covered and the only remaining option is for family members to take over care.” If someone can’t be left alone for even a minute, how is that person supposed to be cared for at home? There goes family’s work, personal time, and money.

In fact, we just saw the same thing with one of my far-flung relatives. Their “3-4 days” of hospitalization turned into needing hospital care for 2 weeks, and then needed two additional weeks of dressing change care that they couldn’t reach to manage for themselves among some additional support needs. You would think, then, that there should have been some health insurance covered resources available for them upon dismissal. Instead this relative ended up at their almost estranged daughter’s house, who then very unhappily had to take 2 weeks off of work, straining that relationship further.

Who is doing this caregiving?

Historically much unpaid care giving has been done by women. Today these caregivers tend to be women, specifically wives and daughters who are currently in the sandwich generation. But now my generation of women are having a new problem. “Women went into the workforce, but without any significant change to the gender roles at home, to paid-leave laws, to anything that would make the shift feasible. … We’re the first women raised from birth hearing the tired cliché ‘having it all’ – and then discovering as adults that it is very hard to have even some of it.”

Are you ready?

If you are a professional woman in the ages in or around your late 40’s, are you prepared for the often multi-year challenges associated with caregiving, for your spouse, parents, or in-laws? Have you had discussions with your parents or siblings about what are the options and the expectations? Are you ready?