UPDATE (Dec. 2, 2014): The app StandWith has launched (free, iTunes).
Almost a third of adults (29%) act as a caregiver for an ill or disabled relative, according to the National Alliance of Caregiving, and of those, around two-thirds (66%) are female. For many, it’s literally a full time job: about a third of family caregivers spend more than 30 hours a week on caregiving tasks, according to a new survey from caring.com. There's also a heavy financial cost to caregiving: Almost half (46%) spend more than $5,000 on caregiving costs each year, with 7% spending over $50,000 annually.
The role can take a toll on your health, too: Up to 70% of caregivers report significant depression symptoms, and 17% feel that their own health has worsened from caregiving.
“It’s very isolating, and it’s a job most people aren’t trained for and would never sign up for—the pay stinks, and there’s no end in sight,” says Jerri Rosenfeld, LMSW, a social worker at Northern Westchester Hospital's Ken Hamilton Caregiver Center in Mount Kisco, New York.
Luckily, you don't have to go it alone. Try these resources for emotional and logistical support:
Start with a support group
“Sometimes all you need is that hour to talk to someone and get things off your chest to people who will see you in a non-judgmental way,” Rosenfeld says. Your local hospital is a good place to start, as is your church or synagogue, or even the town’s recreation center, which may offer a senior or elder program that also provides caregiver support.
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Find the right online help
About 25% of family caregivers seek support online, whether it’s through discussion forums or social media channels like Facebook, according to a 2011 survey done by caring.com. But make sure you look for groups that focus just on caregivers, not forums that combine both patient and family together: “You need to be able to be frank about your own issues, your feelings of guilt and responsibility, without worrying about another patient’s feelings,” Rosenfeld explains.
Caring.com features caregiver support groups for a wide range of conditions (including Alzheimer's, diabetes, cancer, MS, and Parkinson's). AARP's online caregiving community is a good place to talk to others facing issues around caregiving for the elderly, as is the caregiver support section at agingcare.com.
Keep a journal
It’s a safe place where you can write down your thoughts from the day, even if they don’t make any sense, suggests Rosenfeld, and research shows journaling can help relieve stress. Caring.com recommends three different types: a gratitude journal, where you write down everything that you’re grateful for daily; a venting diary, where you get out whatever’s disturbing you; or a reminiscence log, where you record random memories you have of your loved one.
Organize with an app
Apps developed specifically for caregivers can help relieve some of the organizational burden, such as keeping on top of appointment and medication reminders, writing down notes from office visits, and connecting with your loved one’s other caregivers, as well as family and friends. Some good ones include Caregiver's Touch ($4.99), CareZone (free), and CaringBridge (free). Coming soon: StandWith, an app from FCancer co-founder Yael Cohen Braun to facilitate communication between caregivers and well-meaning supporters.
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Carve out time for you
“Many times, a caregiver brings in their loved one for a test or some other appointment and just sits in the waiting room when they really should be using that time for themselves, even if it’s just to take a quick walk outside,” says Rosenfeld. Set aside time for things that nourish you, even if it’s just giving yourself permission to sit on your patio and sip your coffee for an extra 15 minutes. “A lot of times people say to caregivers, ‘you need to take time for yourself so you can be a better caregiver,’ but they’ve got it completely wrong," Rosenfeld says. "They need to take time for themselves because they are human beings.”