Each of these caregivers had a very different and unique caregiving experience, they all shared similar tips about how caregivers can survive and triumph.
Learn more from these exceptional caregivers, as they share their tips with us today.
Tips from Exceptional Caregivers
According to these exceptional caregivers, it’s important to practice these tips while caregiving:
Wanting to help others doesn’t end when you’re no longer a caregiver. Caregivers Carlen Maddux, Feylyn Lewis and Susan Hamilton all get great satisfaction out of helping other caregivers, now that their caregiving role is over.
“Speak out where you can and when possible, share your story,” Lewis encourages.
2. Ask for help and support.
According to Lewis, one of the reasons she and her older brother didn’t seek out formal help and support when caring for her mom is because she “didn’t want to be a burden and didn’t want people worrying about her.”
As a 10-year-old child caregiver, she felt like no one would understand what she was going through. Now, as a leading researcher of young adult caregivers, Lewis knows that there are others out there in similar situations, and she is working to raise awareness and support for these caregivers.
3. Draw support from other caregivers, your family and friends.
For Maddux, who worked in an office during the day and cared for his wife at night, “even though I had help it was a tough road.” His children offered to give him one weekend a month off and he took it. He suggests that others caregivers reach out to family and friends and ask for short reprieves whenever possible. “I have a friend in Nashville who had a dozen friends work out a weekly schedule to help get his wife where she needed to be,” he says. “Tap into your friends for help.”
Social media is a great place to connect to other caregivers. Lewis and Hamilton suggest looking for caregiver forums, Facebook and messenger groups where you can vent in a safe space to other caregivers who understand.
4. Find local support.
For Hamilton, local support was critical when it came to caring for her mom. She leaned on the help of her local church and library groups, as well as larger organizations like the Alzheimer’s Society and A Place for Mom.
“Being a caregiver can be isolating and you can feel like you are all alone, it’s so important to make connections where you can,” Maddux says. He found support from his local church community who offered counselling and support. When Maddux’s adult children gave him a monthly reprieve from caregiving, he made use of a local monastery where he mediated, reflected and gathered his energy for the next month ahead.
5. Seek financial aid and advice.
Caregiving takes a huge financial toll, crossing economic situations and impacting families of all backgrounds and economic means. “There are many folks who can’t afford to care for their loved ones 24/7,” Maddux says.
Maddux was fortunate enough to find a local organization that helped subsidize home care for his wife, Martha, while he was at work. In addition to looking for subsidized programs, he advises caregivers to “invest in an elder care lawyer.” Maddux’s lawyer helped get him up to speed on Medicaid which covered some nursing home expenses for his wife when she was no longer able to remain at home. “I’d be flat broke if I had to pay for that,” he says. “Don’t let caregiving destroy your financial well-being.”
6. Take care of yourself first.
All of our exceptional caregivers mentioned that self-care is easier said than done. It’s something that everyone tells caregivers to do, but in reality “self care is the last thing a caregiver has time for,” Hamilton says. “It’s so counter-intuitive, it’s a real challenge.” So, what can you do to take care of yourself if you don’t have time? “Give yourself a break and a healthy dose of reality,” Lewis advises. Caregivers are often over-critical and feel guilty when they can’t do it all. “If you don’t get it all done will there really be negative effects?” Lewis asks. Instead, she suggests that caregivers prioritize tasks and give themselves permission to not do it all.
Maddux found that keeping a journal was an important part of caring for his emotional well being. Not only did it help him keep track of research and information, it also helped him to vent and track his emotional journey. After Martha passed away, going through his journal became an important part of his grieving process.
7. Try not to isolate yourself.
There is a stigma associated with being a caregiver. This stigma leads many caregivers to hide their situation from friends and love ones, which leads to social isolation.
“Martha did not want to tell her parents, brothers and even our children about her diagnosis,” Maddux says of his wife. “It was very isolating.”
Are you an exceptional caregiver with other tips to share? We’d love to hear your suggestions and tips in the comments below.