During caregiving guilt is constant. Guilt for not spending enough time with your loved one. Guilt for not tending to your own family. Guilt for having negative feelings. And guilt for resenting your new role. On my hundreds of trips back and forth to visit my mother, I remember thinking that — shame on me — I wish this would be over so I could get my life back.
What caregivers must remember is that this is a situation over which you have limited control and shouldn't feel guilty about, says Alexis Abramson, a gerontologist and author of The Caregiver's Survival Handbook. "However, you are in control of how you react to it," she says. And that is empowering.
Abramson advises reaching out to caregiving organizations that offer education and support, investigating elder-care benefits at work and resources in the community (respite programs, adult-day-care centers, transportation services), and scheduling time for yourself.
Without a network of support, caregivers often become isolated, which can lead to depression and their own serious health issues, and further exacerbate problems — one being guilt.
One way for caregivers to handle guilt is "to accept that having negative feelings about caregiving is normal," says Barry J. Jacobs, a psychologist and author of The Emotional Survival Guide for Caregivers. "You love the person you're caring for, but you hate the caregiving. That's normal."
Caregiving often leaves the caregiver feeling depleted, both physically and mentally. For years, every other Saturday or Sunday my husband and I would pull a "doubleheader": driving two hours to see my mother, then driving another hour to be with his mother, and finally getting back home by 8 that night, when I would fall into bed and not move. It was physically draining, sure, but the mental toll also wiped me out for the next day and left me dreading the time we'd have to return.
"That's when the caregiving plan needs to be changed," says Jacobs. "Caregivers need to be smart and strategic about setting limits on the tasks they take on, and recruit others to pitch in."
Yes, taking the pressure off yourself is key. Hire outside help. Involve other family members and friends. A sibling or in-law who lives far away may be able to pay Mom's bills online, deal with insurance companies or take time off to stay with her so you can take a breather. "When family members do pitch in, then everyone feels like a team in caring for a loved one," says Jacobs. "Caregivers feel better supported and more resilient; family relationships become stronger and more enduring, even after their loved one has died."
Talking out emotions with a friend, an elder mediator, a therapist or a peer group can also lighten the mental load. "Many of the caregivers I see who do well go to support groups," says Lisa Campbell, a clinical psychologist who specializes in 50-plus issues at the Willow Wellness Center in Park Ridge, Ill. "It's normal to feel overwhelmed," she says. "Families are complicated."
This is why, in part, there is no pat formula for navigating your own maze when you become a caregiver. Each experience is unpredictable, ever changing and unique. Your plan will require constant revision. You'll need to reach out to others for ideas, advice and help, and that includes finding ways to take care of the caregiver — you.
Sally Abrahms blogs about caregiving at blog.aarp.org/author/aarpsally.
Originally published November 2012
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