More than 65 million Americans are providing care to a family member, but knowing how to care for the caregiver is of equal importance to knowing how to care for the loved one When Deborah Shouse’s mother was diagnosed with Alzheimer’s disease, she asked her father if she could help.“I wanted to stay connected with her on this journey,” Shouse says. She would eventually use her diaries and notes to write two books about caregiving and raise more than $80,000 for Alzheimer’s research.
According the National Caregiving Alliance, in 2009 more than 65 million people in the U.S. cared for elderly, disabled or chronically ill members of their families. On average, this caretaking takes around 20 hours a week — the same time allotment as a part-time job. (Keep in mind the average caregiver already is working a job.) Stress, exhaustion and the physical demands of caregiving can harm the caretakers as much as their charges.
Leah Eskenazi, director of operations for the Family Caregiver Alliance in San Francisco, says people often want to stay at home because they feel more comfortable surrounded by familiar things and people. But the caregivers also may benefit from the closer relationship.“You can be there to help somebody who, maybe, was there for you when you were growing up,” Eskenazi says.“You can supervise what’s going on, and make sure they have the best care.” Shouse acted as her mother’s assistant caretaker, supervisor and, once her mother began to lose communication skills, an interpreter. She says one of her favorite moments came from the psychological connection.“One of my favorite memories was when my mom could no longer carry on a conversation, but she was able to laugh. She looked into my eyes and it reminded me that even when she couldn’t talk or she could even say my name, the essence of her was still there,” she says.
However, you may want to reconsider caregiving if the relationship between you and a hypothetical care receiver is sour, or if you have a chronic health condition of your own. Eskenazi especially emphasizes the dangers of caregiving alone. If there is no one else who is willing to help, it might not be a realistic plan for you, she says.
Even caring for a favorite relative may prove difficult. Eskenazi says a caregiver may have to supervise midnight bathroom trips, lose the time they usually use to cook their own food, or forget to set up their own doctor’s appointments. “Often, we wind up with two patients,” Eskenazi says.“And, it’s always ‘I’m the caregiver. How did I wind up in the hospital?’”
A caretaker’s friends and family members can lighten some of that burden, but those people need to realize that caregivers often are too overwhelmed to think of calling for help or to identify what they might need help with at any given moment, says Janice Schuster, senior writer at the Center for Eldercare and Advanced Illness at Altarum Institute in Ann Arbor, Mich.“The least helpful thing you can do is say ‘Give me a call if you need something,’” Schuster says.“The best thing to do is call and say ‘I’m in the area.Would you like me to pick something up? Would you like me to come by and help with dinner?’ Saying ‘I’m thinking of you’ is nice but not very helpful.”
Having a willing listener may not be a bad idea. Denise Brown, founder of Care- Giving.com, an online community to connect caregivers, also says the emotional rollercoaster can be the biggest surprise to new caregivers.“You feel guilty, you feel resentful, you feel guilty, you feel angry, you feel guilty. Sometimes, when a caregiver expresses that frustration, someone who doesn’t understand may say ‘Well, why don’t you just put them in a home?’ But that’s not what the caregiver is looking for.”
And whether you’re the primary caregiver or just giving them a break, it’s important to do what you can to take care of yourself. Schuster says the first step might be recognizing that caretaking is a job, not just something you do as a good child or spouse.
It’s also good to keep up favorite habits. Shouse carried a list of things she enjoyed doing for ideas during downtime. “They were simple things like ‘I like to read,’‘I like to go outside,’‘I like to eat chocolate,’” she says.“When I had a few free minutes, I’d pull it out.”
Shouse says she concentrated on “staying in the present” instead of missing the way her mother used to be or what life would be like as the disease progressed.“I trained myself to think about what she was to me,” Shouse says. “Sometimes that could be holding her hand, or looking into her eyes, or leafing through a magazine together.These days, everything is in a rush, but I needed to slow down with mom. I walked slower when I came into her area. It helped me get into the present.”
Eskenazi says communities can offer services like grocery deliveries, adult day care, respite care, support groups and information. Brown cites a CareGiving.com member from a small British island who told her about a local initiative in which postal workers check on chronically ill, disabled and elderly people to make sure they have everything they need.
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