6 Things You Didn’t Know About Caregiving
Do you talk with the pharmacist more often than your friends? Do you know so much about caregiving that doctors ask you where you went to med school? If so, you can probably count yourself among the nation’s 65 million family caregivers. This week, Savvy Psychologist Dr. Ellen Hendriksen offers six things you never knew about caregiving.
Ellen Hendriksen, PhD
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6 Things You Didn’t Know About Caregiving
This week, I bring you, if you dare, Home is Burning: A Memoir by Dan Marshall. Dan has pulled off the impossible—a book where he, a self-described overprivileged twenty-something, returns to the family home to take care of his mom, whose cancer has recurred, and his dad, who’s just been diagnosed with ALS. Sound like a downer? Not so much. Somehow, he makes you laugh out loud, cringe, and say, “Oh no, he didn’t!” page after page. He makes respirators and butt-wiping hilarious, moving, and really, really irreverent. If you’re not among the faint of heart, you can listen to a free excerpt of the audiobook below.
You can buy the Home Is Burning audiobook on Amazon, Barnes & Noble, IndieBound, Books-a-Million, or Audible.
Appropriately, this week, we’ll talk about caregivers. If you’re well-rested, relaxed, and have it all together, this is not you. Caregiving is one of the hardest jobs you’ll ever do. And chances are, you’re either doing it now or will at some point in your life. According to the National Alliance for Caregiving, 29% of the U.S. adult population—that’s over 65 million people—provide care to someone who is ill, disabled, or aged.
Now, when I say caregivers, I mean unpaid caregivers, usually a family member. Being a paid caregiver like a home health care aide is also really hard, but that’s another episode. And caregivers don’t usually think of themselves as caregivers—they just think of themselves as a spouse, adult child, parent, or other loved one who’s doing what’s needed to help someone they love.
So this week, here are six big facts about the difficulty, necessity, and, thankfully, meaning of being a caregiver.
Fact #1: Caregivers increasingly do the work of professionals. The things caregivers do routinely these days—changing dressings, cleaning ports, managing complex medication regimens, injections—were done, not that many years ago, if not in the hospital, then at least by trained medical professionals.
But now those tasks are increasingly trusted to caregivers: according to a 2012 report from the United Hospital Fund, almost half of family caregivers perform medical tasks (on top of all they already do, like running the household and navigating our impenetrable health care system). You could definitely argue that having family caregivers do medical tasks is an unfair cost-cutting measure. But while it is a lot to shoulder, especially with minimal training, it does allow patients to stay out of the hospital and at home, where most prefer to be.
Fact #2: Patients and caregivers have mutually contagious emotions, both good and bad. Caregivers and the people they take care of rise and fall together. If one is doing well, the other is buoyed, too. But when one is depressed, the other is likely to be depressed, or if one is anxious, the other is likely to be anxious.
Caregiving is supposed to be a support system, but when burnout and negative emotions sneak in there, it becomes more like a distress system. For example, a 2006 study of caregivers of advanced cancer patients found that when patients have any psychological illness, caregivers are almost 8 times as likely to have one, too, and vice versa.
Fact #3: Caregiving can be hazardous to your health. This is a tough one. Caregivers have worse immune functioning and are more susceptible to getting the flu or other infections. They have twice the rate of chronic conditions like diabetes, heart disease, and arthritis than non-caregivers. And most alarmingly, a 1999 study in the prestigious Journal of the American Medical Association found that the strain of caring for a cancer patient increased the caregiver’s risk of dying in the next 5 years by 63%.
Fact #4: Despite all this, caregivers almost never reach out for help. In addition to caregiving, caregivers often work a job, run the household, and may also take care of kids. But caregivers don’t often advocate for themselves or seek help. They think “I’m not the one who’s sick,” or, “I shouldn’t complain; I’m the healthy one.” But caregiving is exhausting and isolating and no one should face it alone.
Caregivers don’t often advocate for themselves or seek help.
I’ve said this before, but if you’re a caregiver, think of yourself as the coach of a team, not as every single player. Recruit as many people as you can to help both you and the person you’re caring for—your teenage kids, your spouse, your loved one’s friends. Even long-distance relatives can order groceries online or be in charge of bills. If you can afford it, go ahead and hire a cleaning service, dog walker, or send out the laundry. One less task will be worth every penny.
Fact #5: Caregiving is valuable—really valuable. According to the AARP,opens PDF file the work of caregivers is worth $450 billion per year. Basically, if family caregiving were a corporation, they’d be the biggest in the world. All that work you’re doing has value. It’s easy to discount it, but caregiving is one of the hardest jobs there is, and managing the day-to-day of your life, your loved one, and possibly others means you’re doing the work of multiple people.
Fact #6: Resources for caregivers still don’t match the need, but are growing. Luckily, the challenges faced by caregivers have caught the attention of researchers, hospitals, and service providers alike. Many hospitals and cancer centers have support groups for caregivers—if yours doesn’t have one, request one. In the meantime, you can check out resources online—you’ll find links to the American Cancer Society, Alzheimer’s Association, and ALS Association in the show notes.
So before you reflexively offer to help other people in your family use the bathroom, get support! Don’t feel you should be able to do it all—you’ll set yourself up for failure, or at least burnout. In addition to spreading out the work, remember to take care of yourself. You are the most important person in the world to the person you take care of—taking care of yourself gives you the strength and health to take care of them.
See also: Why Am I So Tired?
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If you liked listening to Home Is Burning, you can buy the audiobook on Amazon, Barnes & Noble, IndieBound, Books-a-Million, or Audible.
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About the Author
Dr. Ellen Hendriksen was the host of the Savvy Psychologist podcast from 2014 to 2019. She is a clinical psychologist at Boston University’s Center for Anxiety and Related Disorders (CARD). She earned her Ph.D. at UCLA and completed her training at Harvard Medical School. Her scientifically-based, zero-judgment approach is regularly featured in Psychology Today, Scientific American, The Huffington Post, and many other media outlets. Her debut book, HOW TO BE YOURSELF: Quiet Your Inner Critic and Rise Above Social Anxiety, was published in March 2018.