Many people are caregivers for their sick parents, partners, friends or others, with an unfortunate consequence: They end up suffering. TED speakers share steps that caregivers can take to help maintain their own well-being.
Today, people in every country are living longer than ever. Globally, there are an estimated 962 million individuals aged 60 or over, and this age group is growing faster than all others, according to the United Nations. And while many of them are healthy and able-bodied, disease and disability inevitably increase with age. As the aging of the world’s population accelerates, politicians, policy makers and physicians are scrambling to anticipate and address its impact on society and its institutions.
But one important group is being overlooked — the increasing number of people taking care of family members who are ill or disabled. Which leads to the question: Who is caring for the caregivers?
“No one can be a pillar of strength 24/7,” says Françoise Mathieu, a psychotherapist and specialist in an area known as “compassion fatigue.” Compassion fatigue refers to the phenomenon of perpetual caregivers — whether familial or professional — becoming physically and emotionally depleted by the process of ministering to others. “One study found that family members caring for a loved one with dementia reported very high rates of depression,” says Mathieu. Canadian artist Tony Luciani, who spent years caring for his mother as she declined into dementia, describes feeling a sense of almost personal dissolution. The experience, he says, “threw my sense of being into random directions without reason or purpose.”
At its most extreme, being a caregiver can lead to mood swings, exhaustion, irritability and cynicism, as well as feelings of anxiety, emptiness and overwhelm. That’s according to Hui-wen Sato, a pediatric intensive care unit nurse at Children’s Hospital Los Angeles. Even professional caregivers like her — people who’ve been trained to work with the sick and dying — can succumb. “We had one patient with a very tragic background who had a code blue during my shift, and it was mentally, physically and emotionally taxing,” she recalls. “Then I got home and had two little girls to care for.” The next morning, she says, “it was extremely difficult to function like a ‘normal’ mother on a ‘normal’ day when I was still feeling so burdened about this patient.”
Another long-term effect of compassion fatigue can be a diminished ability to feel empathy for the people you’re caring for. Some researchers have described it as a “secondary traumatic stress disorder,” which comes from prolonged exposure to the suffering of others. While it’s an understandable defense mechanism, it can leave many caregivers feeling guilty and frustrated. They may increase their use of alcohol or drugs, gain or lose large amounts of weight, or take an overall nosedive in wellness. In fact, 17 percent of caregivers report their physical health has gotten worse as a direct result of caregiving.
The longer that someone provides care — whether it’s for a partner, parent, sibling or some other loved one — the more likely they are to experience negative effects. Due to busyness and shame, many struggle in silence, which compounds the problem. “All caregivers, both professional and not, need to know their limits, so they can ask for and get help,” says Sato. Below, advice on how to do just that — and maintain your own well-being — even when someone you love is ailing.
1. Assemble your own team.
Many caregivers are experts at assembling a great team of professionals for their loved ones. They go to lengths to find the best surgeon, oncologist, general practitioner, physical therapist, etc. But they tend to pay a lot less attention to assembling their own crew.
Caregivers: Make a list of dependable relatives, friends, colleagues or other people whom you can call on to help you talk through challenging decisions or experiences, lend a hand with day-to-day tasks, or simply listen as you vent. Luciani recruited people in his community to assist with his mother, who would occasionally get lost when she went on walks. “I solved that by having neighborhood spotters, people who live in town I could call. Some would routinely text me, just to inform me of my mom’s whereabouts,” he says. “I appreciated it greatly. I could breathe again.”
For Sato, having coffee with a sympathetic friend was a life-saver. After the death of one patient, she recalls, “my friend sat with me and let me work through a lot of my difficult emotions. The safe place she gave me to be open and vulnerable was enough to revitalize me so that I could care for my own family and then go back to work for my next shift without feeling weighed down.”
Just as important, when people offer assistance, know that it’s OK to answer “Yes.” You’re not any less of a good caregiver if you do. The next time someone asks, “Is there anything I can help out with?” — and you know they really mean it — take a moment to think about your life and what’s going on. Then, tell them, “Yes, I could use a hand with … ”
Besides turning to family and friends, you might want to look into one of the many support groups that exist for caregivers. Both the Family Caregiver Alliance and AARP provide directories of online and in-person options around the US.
2. Be your own caregiver.
As a caregiver, you’ve had countless people tell you, “Please don’t forget to take care of yourself.” And when they do, you may think, “Easier said than done.”
We know it’s hard enough to practice healthy habits when our lives are stable. Then, when someone you love is ailing, among the first things to toss out the window are adequate sleep, nutritious food, and exercise. One study that looked at the caregivers of people with dementia found two-thirds of them experienced sleep disturbances.
While you’re acting from a positive impulse — you’re just so busy trying to be a good caregiver — neglecting yourself will hurt you and your ability to be there for someone else. This is doubly essential if you’re also caring for your own family in addition to a sick relative. Carving out time for a nap or a walk around the block is essential. “Whenever I had a few free hours,” says Luciani, “I’d jump on my bicycle and go like the wind down country roads. The physical exhaustion I felt afterward actually rejuvenated my body and mind. I always returned from those rides with hope.”
Recent research has shown that mindfulness — strategies and practices that cultivate a person’s ability to stay in the moment — can help fight burnout in nurses, and family caregivers can also benefit from it. Mindfulness isn’t just meditating on a cushion; it can also consist of focusing on your breath for a few minutes. If you’re not sure where to start, download an app for your phone, such as Calm, Insight Timer, or Stop, Breathe & Think (for these apps, the basic version is free but you will be charged if you opt for additional features or classes).
3. Find an outlet.
In long-term caregiving situations, putting aside your hobbies and passions, especially any creative ones, can feel like a no-brainer. They may seem supremely self-indulgent to take up in the face of a family member’s very real needs and demands. But those outlets of self-expression — whether it’s writing, gardening, playing music, building, baking, drawing or something else — can help you release complicated emotions and express things you can’t say in conversations, texts or emails with friends. Maybe you can’t quite put words to how you’re feeling, but a watercolor in panicked reds and oranges can let it out.
And you might be surprised by what else emerges. For Luciani, the process of photographing his mother, and letting her take some photos herself, not only relieved stress but also brought unexpected joy. During their photo sessions, he says, “Excitement trumped exhaustion.”
But be realistic about creative endeavors. Write a conversation or scene rather than a memoir; stitch a pillowcase, not a quilt; grow herbs on the windowsill, not your usual, feed-the-neighborhood garden; take a weekly photo for Instagram, not a series of family portraits.
4. Set boundaries — and stick to them.
Caregivers tend to be, well, giving people. “Caregivers may be compelled to keep going out of obligation, guilt or good intent that turns unhealthy due to poor boundary setting,” says Sato. “But if you’re not setting boundaries, that can turn unhealthy.” Try this: Say no to any requests that you think will drain you rather than buoy you.
This applies to both the small asks (making brownies for the community bake sale) and the big ones (hosting holiday dinner or the end-of-summer barbecue). If people in your life protest and say, “But you love hosting New Year’s brunch! It’s a tradition!”, tell them you did but things are different now. Also, think about what you need in your day-to-day life to stay afloat. If that means, say, receiving no texts or calls during certain hours because that’s the only time you can grab some rest, let your friends and family know.
5. Find a different way to connect with the person you’re caring for.
When you’re tending a family member or spouse, you two already have a history and relationship. Sometimes, it can be hard to break out of the roles you played when the person was healthier. However, adjusting to the new normal of their illness can also lead to the two of you getting stuck in the roles of “caregiver” and “patient.” This might make it tough for you to sustain a sense of personal connection that transcends this script.
One way to re-establish your bond: Think creatively about their needs and your own, suggests Luciani. “Find a common activity. It wasn’t until I handed mom a small point-and-shoot camera that her purpose as storyteller appeared. It awakened her from a defeated attitude to a realization that life was still worthy of exploration.” Since compassion fatigue is, in part, a trauma that results from being around suffering, helping someone who’s ill lead a fuller life can be a lifeline for you, too.
6. Call in backup if you need it.
Unlike doctors or nurses who take care of people as a profession, family caregivers are always on call. They can’t leave their loved ones behind and call it a day when the clock hits 5 PM. “For caregivers, there are issues that come up that are beyond what it’s possible for one person to do,” says Mathieu.
If you feel like you’re nearing the brink of what you can handle, call in a trusted member of your own team to pitch in for a day or a week. Or, consider calling on respite, or relief, services — temporary backup caregivers who can provide relief. These services, which can be free for eligible caregivers, can give you a chance to take a break.
Watch Tony Luciani’s TEDxCambridge talk:
Watch Hui-wen Sato’s TEDxPasadena talk:
Watch Françoise Mathieu’s TEDxQueensU talk:
