The Costly, Painful, Lonely Burden of Care – The New York Times

Kate Washington, the author of Already Toast: Caregiving and Burnout in America

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In 2015, Kate Washingtons world changed. Her husband, Brad Buchanan, was late for family dinner. She found him in the bathroom, coughing up blood a lot of it. She handed him a bucket and asked the neighbor to watch their two young daughters while she drove him to the emergency room.

Doctors found that a tumor had ruptured in one of his lungs and he urgently needed chemo. As her husband became critically ill, Ms. Washington, a freelance writer, was thrust into the role of nurse.

After Mr. Buchanans first round of chemo, the tumor shrank too quickly, causing his lung to collapse and then fill with thick, toxic fluid that put him at high risk for infection. Before he could continue treatment for cancer, he was sent home to recuperate.

Ms. Washington found herself performing high-level nursing tasks, like administering antibiotics three times a day through a PICC line a thin tube that leads from veins in the arm to the veins near the heart. My hands were shaking, she said as she remembered apprehensively pushing in the drugs for the first time and feeling the weight of keeping her husband alive.

But that weight would only become heavier when Mr. Buchanan had a stem cell transplant that left him with graft-versus-host disease, a condition that occurs when donated cells attack the body.

After spending four months in the hospital, becoming temporarily blind and unable to walk, eat, dress or use the toilet on his own, he was given his discharge papers. A doctor told Ms. Washington that her husband would need 24-hour care and could not be left alone for even a moment. When she explained that she had two children who also had needs, he said, Well, usually family steps in, and it works out fine.

Ms. Washington felt the burden of responsibility, but also the sting: The U.S. health care system relies on and takes for granted the invisible army of people mostly women who keep the system functioning by performing home care for the many people who are too well for the hospital but too sick for home, as well as for those on end-of-life care.

In 2017, AARP found that about 41 million family caregivers in America perform roughly $470 billion worth of unpaid labor a year. Since then, the number of caregivers has increased to 53 million, meaning that more than one out of five Americans are caregivers, according to AARPs latest report.

Depending on the analysis, between 61 and 75 percent of caregivers are women, and they tend to do more personal care tasks like helping patients bathe and use the toilet than their male counterparts, who are more likely to oversee finances and arrangement of care.

Female caregivers put in more hours 22 to mens 17 and they are also more likely to stand by their partner through a serious illness. According to a study in the journal Cancer, women living with brain tumors or multiple sclerosis were seven times as likely to be abandoned by their spouses as men with similar diseases.

Many people who take on caregiving roles experience negative health impacts, but women are especially at risk of the fallout from caregiver stress. Female caregivers are also 2.5 times more likely to live in poverty as non-caregivers, with many leaving the work force to do care work. A 2011 study found that women who left their jobs to care for a parent lost an average of $324,000 in wages and benefits over their lifetimes.

Ms. Washington was able to dip into savings and a recent inheritance to help pay for supplemental in-home care, but it was still a struggle, causing stress, resentment and lost income.

Her book, Already Toast: Caregiving and Burnout in America, published by Beacon Press and on shelves this week, details the day-to-day challenges of caring for a partner with severe illness, but it also examines how the health care system must change to better support caregivers. If society wants us to keep caring for others, she writes, its going to have to show a little more care for us.

In Her Words spoke with Ms. Washington over phone and email. The conversation has been edited for length and clarity.

If we go with the metaphor that cancer is a battle, then you call yourself collateral damage. Explain.

I was compelled to enter this new life where the center of it was caring for someone else, and even though I love that person very much, it was a hard loss. It was hard to have my life put on hold. Everything kind of slipped away.

As you became collateral damage, what was lost?

I lost a sense of who I was. I was going to pick up a prescription for myself, the only prescription I had when my husband was sick, and the pharmacist asked for my date of birth, and I gave his date of birth. I was so used to picking up things for him, I spaced on the fact that I also had needs. For a few years, I essentially stopped having a professional life. There was this feeling of erasure that my needs and desires were no longer important.

What was the fallout of not feeling seen for so long?

I got angry. That sense of being unseen became literal because Brad had lost his vision, which is not to blame him for that at all, but it made a metaphor an actual, concrete thing. The things I was doing for him were being taken for granted or were invisible to him. That started to create resentment. I wanted to be acknowledged for how much I was giving up of the life I normally would have been leading.

What could have helped you feel acknowledged?

A culture shift to valuing care isnt really a quick fix exactly, but that would be nice. From the medical establishment? Not taking at-home care for granted.

There is also a longstanding gender stereotype that women are the caring sex. Theres a lot of pressure on women to conform to and stick with these roles and to not raise their voices about all the difficulties they face. Just because women are expected to do the caring, doesnt mean it comes easier to them.

You express in your book that a disservice to caregivers is equally a disservice to those receiving the care. Can you explain this idea?

If there is too much responsibility on caregivers, the patient can suffer. Burnout can undermine the sense of empathy, the sense of love and the sense of providing good care.

This can impact practical outcomes, like how quickly the person can recover, but it can also be damaging for the relationship between caregiver and the recipient of care, which is less quantifiable, but also hard to contend with.

There was a powerful quote in your book from Evelyn Nakano Glenns Forced to Care. She wrote that our society views family caregiving as both priceless and worthless.

There is a narrative that the caregiving work we do is invaluable and the gift of caring is its own reward, but the flip side of something being priceless is that you paradoxically strip it of all its value. Its so valuable that we cant put a monetary price on it, which then takes away the economic worth.

People talk about how its the most important job in the world, taking care of our children or taking care of our vulnerable elders, and yet those are some of the worst paid jobs. How much is a quarterback paid versus someone who is doing care for a vulnerable elderly person?

How did care work become so undervalued?

The historical roots are complex, but as Evelyn Glenn puts it in Forced to Care, Western culture has long framed care work done by women as a moral duty or obligation, rather than an economic activity.

Whereas in preindustrial times, womens domestic work was understood to contribute to a household financially, the Victorian era saw a gendered split between the domestic sphere and the economically productive public sphere. Family caregiving fell into the realm of womens work and like child care and other domestic labor became economically invisible and not counted in GDP. In turn, the association between care and womens free or compelled labor has produced stigma and low wages for professional care work a vicious circle of devaluing.

You write that taking on the role of unpaid caregiver, a role that often isnt a choice, can have generational impacts. Explain.

If your earnings are lower than they would normally be because youre busy caring for a family member, and you cant save and pay into social security, it can lock whole families into a cycle of lower wealth and economic instability.

How can people best help their caregiver friends and neighbors?

There is a reason that taking people a meal is a classic, because it is super helpful. If you do that, always bring disposable containers so that the person does not have to return them. Offering to help with errands or with child care is great, and if the situation permits, offer to sit with and stay connected to the person who is ill. When Brad could be more in touch with his community, it eased some of the pressure on me.

And what should someone not do?

Dont tell someone to stay positive. For me, there was no staying about it, because I didnt feel positive to start with. It brought up this feeling: My time isnt my own, but surely my emotions can be.

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The Costly, Painful, Lonely Burden of Care - The New York Times