Rosalynn Carter, the former first lady who started the Rosalynn Carter Institute for Caregiving, famously stated that there are only four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will become caregivers and those who will need caregivers.
Sometimes a person becomes a caregiver overnight after a health crisis, like a stroke or cancer diagnosis. But often, caregiving starts slowly with a few errands like picking up groceries. While you may not call yourself a caregiver, at some point it becomes clear that life has changed and you don’t have the freedom to go on vacation or out with friends unless someone else can step into your caregiving role.
“If we acknowledge that we’re caregivers, we’re much more apt to get resources, support and services that can help us in that role and help the loved ones we’re caring for,” said Amy Goyer, author of “Juggling Life, Work and Caregiving,” and a caregiving expert for AARP, the advocacy group for older people. “Personally it’s important to acknowledge it. It’s something to plan for and schedule in your life.”
When I asked readers who had cared for a loved one to tell me what we should know about caregiving, I received hundreds of emails from current and former caregivers who wanted to help. What was most notable is how consistently caregivers talked about the joy and satisfaction of the work they do, despite the enormous hardship it sometimes imposed. A reader named Marnie shared her memories of caring for her mother.
“The early days of taking care of Mom weren’t easy. It’s always difficult having to live with someone else, and I know she felt it too. But we shared our feelings and worked things out. My favorite memory is of Mom and me sitting on our wonderful screened-in porch, listening to the Sinatra station while Mom rocked in her chair, and I worked on my needlepoint. We would spend hours on that porch. Mom has been gone for four years now. If I could spend just a few more hours with her on that screened-in porch, rocking and needlepointing, I’d be in heaven.”
Caregiving requires an enormous commitment of time and energy, and most of this guide focuses on practical advice for getting organized and finding resources to ease the burden. But experienced caregivers also offer six personal strategies to guide you through the challenging times.
1. Let the patient lead. Readers consistently talked about the importance of autonomy for the one receiving care. Include the person in care decisions whenever possible. Make sure doctors don’t talk as if the patient isn’t in the room.
2. Focus on comfort. Let comfort, joy and pleasure be your guideposts. Try not to nag. Readers talked about the importance of small moments of shared joy — listening to swing music or a favorite crooner, playing card games and going for ice cream.
3. Listen to the experts. Find experts to advise you, and listen to them. Arm yourself with information from caregiving organizations and support groups. Trust your instincts. Ignore most of the unsolicited advice you are likely to receive.
4. Talk to other caregivers. Support groups will be one of your best resources.
5. Take care of yourself. Even five- and 10-minute breaks during the day can help. Try keeping a gratitude journal, download a meditation app or do a six-minute workout to refresh your mind and body. Use adult day care or in-home caregivers from time to time so you can take a break. Take up friends on their offers to help, even if it’s just to get your hair done. Exercising, sleeping and eating well will make you a better caregiver for your loved one.
6. Shed the guilt. Guilt is a common theme here, but experienced caregivers say it’s important to know your limits, practice self-compassion, ask for help and remind yourself that the work you’re doing is difficult and important.