The Palliative Caregiver
A Caregiver's Guide to Palliative Care
Keeping Caregiver Stress at Bay
Whether you are a spouse, adult child, or close friend, choosing to help provide palliative care -- to become a member of the palliative care team -- means you are making "a role-changing decision," Marcantonio says.
That new role can bring stress and strain, and unexpected rewards.
Because of the added responsibilities and commitment that come with being a caregiver, you will constantly ask yourself: Is palliative care the right thing for my loved one and for me? To answer that question, do frequent reality checks.
George Roby is caring for his wife in their Chagrin Falls, Ohio, home. She has Alzheimer's disease.
"I constantly remind myself that I can't bring her into my world ... and that I am going to survive this," Roby tells WebMD.
Dealing with isolation
If you feel you are on call 24/7, make sure to maintain a support network and take respite breaks.
"I'm at home a lot with my husband, so I found an online support group, MyParkinsons.org," Lowe says. "I get advice, I vent, and I get an amazing amount of info. I always feel better after I've gone there."
It's also important to take a break, says Marita Schifalacqua, who took care of her mother until she died of Alzheimer's in 2010.
"We found a respite program, through Milwaukee's Catholic Charities," Schifalacqua tells WebMD. "It allowed us to get out of the house for three hours a day. It was wonderful."
Coping with Caregiving
The palliative care team can support caregivers in:
Handling added responsibilities and unforeseen challenges. Information is the key to coping successfully with both. According to the National Alliance for Caregiving, the best sources of information are your palliative care team; the Internet; support groups, including online support groups; disease-specific organizations; government agencies and programs (the VA, Medicare, Medicaid); social service organizations; and books and magazines.
Juggling Work and Caregving. If you are employed -- and a recent MetLife report on caregivers in the workforce says 62% of caregivers under age 60 are -- there may be problems balancing work and caregiving. When problems surface, contact your company's HR director or Employee Assistance Program. And take advantage of the Family Medical Leave Act: It's there to enable you to care for a loved one.
Balancing family needs. This is especially true if there are children still at home or you are dealing with siblings. Where possible, and appropriate, involve family in caregiving because that can often lessen friction, says Carol Whitlatch, PhD, who has been doing research on caregiving for more than 15 years at Benjamin Rose Institute on Aging in Cleveland, Ohio. But she adds, "If you can't get everyone on the same page, accept that fact and move on."
Handling additional financial responsibilities. To obtain help in managing finances and insurance, see the palliative care team's social worker. Potential sources of aid include Medicare, Medicaid, the VA, the local Area Agency on Aging, state disability programs, local social service agencies, and local disease-specific organizations and charities.
Providing personal care. This more "high touch" care often provides opportunities to express love and affection and to create special moments. "When we bathed mom, we'd use special lotions and massage her hands. She really liked that," says Schifalacqua.
Providing emotional support. In some instances, you will be losing someone you love, so it's important to make each moment count. Amy Jackson cared for her husband who passed away in 2010 in their Detroit home. "It was painful those last weeks," she says. "But I made sure every moment counted. I was always telling him how much I loved him. And we read his favorite books together. And we did a lot of reminiscing."