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.
The option of palliative care
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.
The Palliative Care Team
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:
- a physician, who coordinates pain and symptom management and coordinates comfort care.
- a pharmacist, who works with the physician to prescribe medications and monitor their effectiveness.
- a specially trained nurse, who provides direct care to the patient and information, education, and medical support to the family.
- a social worker/case manager, who helps navigate the health care bureaucracy, locate community resources, and provide counseling and emotional support to patient and family.
- a chaplain, who addresses the patient's and caregiver's spiritual needs.
- a dietitian, who helps address nutritional concerns.
- other professionals, as needed, such as a psychiatrist, physical therapist, or respiratory therapist.
"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.
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."
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."