Laura J. Martin, MD
No matter when you get the news that a loved one has a painful or terminal condition, it's a shock.
Deciding to become their caregiver, to help them manage their pain and suffering -- or manage it for them -- is a difficult choice.
That choice may be made in the blink of an eye, particularly when a loved one has a serious injury or dramatic downturn in a chronic condition.
Eunice Czarnecki, 73, had been helping her brother manage his heart disease and diabetes for years. But when he took a sudden turn for the worse, his doctor at Milwaukee's VA Medical Center told him his body simply couldn't fight any more. He was dying.
"He accepted that," Czarnecki tells WebMD. "But, even though he was having trouble breathing and was in a lot of pain, he wanted to die at home."
It wasn't Czarnecki's first time as a caregiver. She'd already seen her husband through his terminal illness.
"I knew I could take care of him as long as I had help with his pain," she says. "It was exhausting but worth it to be with my brother when he died."
When Karen Lowe married her husband, Barry, in 2005, he had already been diagnosed with Parkinson's disease. Soon after the Bartlesville, Okla., couple wed, they sat down with her husband's neurologist and had a heart-to-heart talk about the future. A major part of their discussion was about the end-of-life care her husband would need and want.
"So much talk about end of life is about death, but that's not what we talked about. We talked about quality of life and how to keep things as normal as possible. And we talked about how to make sure he won't suffer and the options we have to prevent that from happening," Lowe tells WebMD.
Palliative care is person-centered care with a goal of maximizing a patient's quality of life. To achieve this, the palliative care team attends to physical, emotional, social, and spiritual quality of life -- for the caregiver as well as for the patient.
"It's very supportive and very holistic care," Ben Marcantonio, MFT, of the Institute for Palliative Medicine at San Diego Hospice, tells WebMD.
The growing use of hospice -- with its emphasis on pain control and quality of life -- has made people more aware of the benefits of palliative care for all patients, not just those who are dying. And it's demonstrated the important role family caregivers play on the palliative care team, says Christine Hudak, MD, associate director of Summa Palliative Care and Hospice Services in Akron, Ohio.
"They don't just know the person's likes and dislikes, they are also more likely to know their preferences for pain treatments and medical care, too," Hudak tells WebMD.
To find a palliative care team, Hudak suggests talking to the doctor most involved in your loved one's care or a hospital social worker. Usually they will refer you to a hospital program because almost 60% of large hospitals -- those with 50 or more beds -- have palliative care programs.
If the person you are caring for is a veteran, contact the Veterans Administration. Care consultants at local organizations, such as the Alzheimer's Association, may also be able to provide information on palliative care programs.
Good palliative care programs have two things in common, Hudak says. They use inter-disciplinary teams and each team works with the patient and family to create a personalized care plan. Typically, teams include:
"This is a 'life' team. It helps people look at options and it provides step-by-step help for caregivers in making the decisions they need to make for the best quality of life for their family member," Helene Morgan, MSW, a member of the pediatric palliative care team at Children's Hospital in Los Angeles, tells WebMD.
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.
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."
The palliative care team can support caregivers in:
Patients in palliative care sometimes recover. But caregivers have to be prepared for loss.
Soon after Jackson's husband passed away her chest started hurting so dreadfully she feared it was heart trouble. And it was. "When I went to the doctor he told me that I had a broken heart and that nothing would cure it except crying and time," she says.
"Now," she adds, "I'm crying all the time -- in the morning when I get up, in the check-out line at the store, at night. And I can feel that I'm getting better."
SOURCES:Eunice Czarnecki, Greenfield, Wis.Karen Lowe, Bartlesville, Okla.George Roby, Chagrin Falls, Ohio.Marita Schifalacqua, Milwaukee, Wis.Amy Jackson, Detroit.Christine Hudak, MD, associate director of Summa Palliative Care and Hospice Services in Akron, Ohio.Cheryl Kanetsky, LSW, program director, Cleveland Chapter Alzheimer's Association, Cleveland.Beth Kallmyer, LCSW, senior director, constituent services, National Alzheimer's Association, New York.Linda McNair, CMSW, senior programming officer, Cleveland Veterans Administration Medical Center, Cleveland, Ohio.Ben Marcantonio, MA, Med, MFT, director of patient care services at the Institute for Palliative Medicine at San Diego Hospice, San DiegoLinda McNair, CMSW, senior programming officer, Cleveland Veterans Administration Medical Center, Cleveland, Ohio.Stephanie Scrota, care consultant, Benjamin Rose Institute, Cleveland.Michael Williams, PsyD, senior program association, Wellness House, Chicago.Carol Whitlatch, PhD, caregiving researcher at Benjamin Rose Institute on Aging, Cleveland.National Alliance for Caregiving web site, "Caregiving in the U.S., 2009;" accessed Jan. 4, 2011.National Family Caregiver Alliance web site, "Caregving Factsheet," accessed Jan. 4, 2011.Messinger-Rapport, B. Cleveland Clinic Journal of Medicine, November 2010, vol: 77 pp: 770-783.MetLife web site, "MetLife Study of Working Caregivers and Employers Health Care Costs," accessed Jan. 3, 2011.Whitlatch, CJ, Dementia, May 2009, vol: 8 pp: 223-243.
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