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Caring for a Terminally Ill Loved One: First Take Care of Yourself

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Caring for a Terminally Ill Loved One: First Take Care of Yourself

There's a subset of people who have an immediate, visceral reaction when they learn that a loved one is terminally ill: "I'll take care of them."

Lives suddenly change. Some quit their jobs; others forgo sleep and social life as they wedge caregiving in with careers and school and other responsibilities. A whole new set of responsibilities and skills arises: giving medicines and administering treatments. Bathing an adult, changing their incontinence protection. Finding the perfect meal to appeal to a lackluster appetite. Managing another person's affairs, from bills to pet care to funeral preplanning.

It can prove overwhelming, and it can take up more time than anyone might guess before they're in the thick of it. Caring for a terminally ill person at home is completely different from working in hospice: As a professional, you may be exposed to end-of-life issues all day, and they can be emotionally and physically draining, but at the end of the workday, you're able to go home, to step away, to take a break. Nonprofessional caregivers may know how important those breaks are – and they're likely to receive good advice about self-care – but often, they can't find time for them. Or they won't.

I talked to four people who cared for loved ones at the end of their lives. Erika was just out of high school when she and her father cared for her mother as she died of breast cancer. Carrie was the primary caregiver for her father's last eight years as he suffered Alzheimer's disease. Lisa cared for both of her parents in their last years. Jan cared for her mother as she hid her breast cancer diagnosis for several months before her death.

What I found when I talked to them was plenty of variation – from Erika's occasional chances to step away while her dad took care of her mom, to Jan's lasting physical and psychological damage, more than six years after her mother's death. But what they all had in common was a determination to do everything they could for their loved ones, even at the expense of their own health.

Erika: "Well, I would go to work …"

Erika was just a kid when her mom first fought breast cancer and had a radical mastectomy. Ten years later, the cancer returned and metastasized. As her mom's condition worsened, Erika decided to stay in town after high school graduation, attending community college and working while helping out at home. She was a primary caregiver, helping with all aspects of her mother's care. She did have help – her dad was there when she had to be at work or school, and she was there when he had his own commitments.

Still, it was hard to step away. When I first asked Erika how often she was able to take some time for self-care, she said, "Well, like I said, I would go to work, and I was in school …" When I pointed out that being at work doesn't exactly count as self-care, she mentioned that she and her boyfriend sometimes could go out on weekends to attend a concert or have a few drinks. Even if her stress releases were few, at least they existed. But she also noted, "You don't want to leave; you feel like you can't leave."

Looking back, Erika wishes she had done one thing differently: spent more time with her mom in her last years. And by that, she doesn't mean more time spent providing care, but more time spent just living their lives together. "When I look back on it knowing what I know now, I wish I could have quit my job, put school on hold, and just took my mom out when she could get out and have experiences, or done things with her at home. Hindsight is 20/20."

Carrie: Our culture isn't set up for self-care.

Carrie was her dad's primary caregiver for eight years between his diagnosis with Alzheimer's and his death. Though she has siblings, she was the only one who cared for her dad, a situation that she described as "escalating" from a daily phone call to daily visits to quitting her job and managing every part of her dad's life. That included "preparing all his meals. As his disease progressed, I did all of his shopping, took over his finances, scheduled his doctor appointments, planned and organized his social activities, and managed the inevitable crises that came up."

Carrie had some support from the hospice team, who gave her recommendations about self-care. They suggested she "worry less" and take time for things like massages and vacations. Carrie found this advice impractical and did nothing for self-care except go to the yoga classes that were a crucial part of her life. She cried her way through many of those classes.

There's a cultural expectation behind the people like herself who surrender their entire lives to care for a dying loved one, Carrie says. She knew full well that self-care was important. "But our culture isn't set up for that. We praise persistence, sacrifice." We might tell our caregiver friends to be sure they take care of themselves, but then when they don't, we marvel at their hard work and selflessness. That praise reinforces the behavior of skipping self-care. The result can be, as it was for Carrie, intense discomfort with the idea of stepping away for anything personal: "I felt a tremendous amount of guilt anytime I did do anything for myself."

Lisa: "I never felt I was doing enough."

Lisa took care of her mother before her death, then later cared for her father before his. She noted that "thankfully, we had some outside help and hospice at the end of both," and she had occasional help from family and friends, but much of the care still rested on her shoulders.

Lisa didn't go entirely without opportunities for self-care. She told me, "When you are in the 'care zone,' you do tend to forget about yourself. My therapy was getting a night free, or even a couple hours to share with friends and a cold drink. But towards the end or during a bad spell, finding time for a shower was hard." And her friends and hospice support teams weren't talking to her about the importance of self-care – she was "pretty much on my own."

Like many caregivers, Lisa felt a need for laser focus on the needs of her parents, and that means little attention could be paid to her own needs. It was the hardest part of caregiving, she said: "… Always being 'on duty,' being afraid of sleeping too soundly and missing a call for help. Doubting yourself, and if you are doing enough." And the experience sticks with her. The first thing she said when I asked her about her time as a caregiver was, "No matter what I did, I couldn't save them, and I never felt I was doing enough."

Jan: "I started to self-harm."

Jan's situation was extreme and unusual, but the center of it is heartbreakingly familiar to anyone who's had experience as a caregiver. She moved in with her mom when she needed care for what she said was severe anemia. In fact, Jan's mom was hiding a diagnosis of end-stage breast cancer. Jan trusted her mother as she insisted that her visits to the cancer center were just to see a hematologist whose office happened to be there. She threw her entire self into the job of trying to heal her mom of a disease she didn't have – when the one she had was terminal and incurable.

Jan only learned about her mom's breast cancer in the days before her death, when she had to be rushed to intensive care. There, the doctors leveled with Jan. She moved her mother into palliative care, where she spent the last few days of her mother's life sitting awake by her side. "People would say you've got to stop, you've got to take a rest," she told me, "and I would glare at them and tell them I'll rest when it's over."

"I'll rest when it's over" was Jan's entire approach to the massive job of caring for her mother, and it's had lasting effects. She injured her body carrying her mother around in the days when she could no longer walk. And she injured her psyche by refusing to slow down. She remembers just one night when she had an opportunity for a break: Her brother offered to care for her mom and stay overnight. She stepped away to go out with friends – but she returned to stay the night even though her brother was there. She couldn't live with herself if she stayed away.

Jan's experience turned even darker at one point. "I remember once – this is embarrassing and horrible, but if you don't self-care, it can happen," she told me. "I started to self-harm. Because I was so distraught and confused and completely without help. I didn't know what to do. Luckily, my husband stopped it. I eventually ended up getting the help I needed. But it will take you all the way down to places you never knew you would go."

"Put the mask on yourself first."

I learned a lot about the realities of at-home caregiving and self-care when I talked to Erika, Carrie, Lisa, and Jan, but perhaps I learned just as much from several people who initially planned to talk to me, then learned I was focusing on self-care. "You don't want to talk to me," I heard over and over. "Everybody told me I should take some time for myself, but I never did." Some laughed when they said it; others just sounded hollow.

In the wake of their loved ones' deaths, the women I talked to are starting to get past what they experienced. Jan attended grief support groups and found some help there, learning ways to talk out her pain. For those who have been through caregiving and are now mourning a loss, it's an important step, whether it's done via one-on-one counseling or a support group or an online message board.

But even better than seeking grief support after a loss, caregivers should be seeking and accepting help while they're providing care. Carrie offered some simple suggestions: "I think I'd say to allow other people to help as much as possible. For example, if you can afford it, have a cleaning service come in once or twice a month so that's one less thing you have to worry about. Maybe find a support group. Take advantage of the hospice social worker and other resources. They're all there to help. Know that there are other people going through similar things, but your journey is unique to you. You can't compare how or what someone else is doing."

It's easier said than done, to be sure. Between the never-ending demands of life as a caregiver and our society's love for hard work and self-sacrifice, it can seem nearly impossible to find time for self-care … and completely impossible to justify taking that time. But it benefits everyone: the caregiver, their family and other loved ones, and maybe most important, the person who needs their care.

Jan remembered the days, several years before her mother's death, when it was her dad who was dying. Her mom was caring for him, and she had a note on her refrigerator, where she would see it every day: "Put the mask on yourself first." It's the advice a flight attendant might give the parent of a small child in the event that the plane's oxygen masks pop down. "You're no good to anybody if you don't take care of yourself first," Jan says. "She tried. It was a long road for her, and then when it came to be her time to be the one who needed care, I forgot to put the mask on."