Life Lines
It's not just patients who require care; family caregivers do, too.

In homes and hospitals across the country, people are finding themselves having to take on a role they never imagined: caregiver.

Caring for a loved one with cancer, dementia, a debilitating injury, or any other condition can be overwhelming. Family caregivers—frequently spouses or grown children—generally aren't trained for the role; it's thrust upon them out of necessity, and usually without warning. For many people, it's a 24-hour job; many more find themselves juggling care with everyday responsibilities like work and school and kids and chores. The job can be physically demanding; for certain it is emotionally draining. Most caregivers tend to say the same thing: It's the hardest thing they have ever had to do.

"When people ask me how they can sustain their role as caregiver, I tell them it's because they love their family member—their spouse, their parent, their child, their sibling—so very much," says Kevin McClarren, president of the Coalition on Family Caregiving. But at this time of year, in the throes of the holiday season, caregiving can be especially difficult. "Holidays and the change in season bring up memories of the past, plus there's the stress of the holidays themselves," McClarren says. "Caregivers are reminded of their loss; even though their family member is still there, it's not the same. If you could chart caregivers' stress, it peaks before, during, and after the holidays, because the season puts family caregivers in a much more vulnerable position."

The Coalition on Family Caregiving was founded at Overlook seven years ago, in response to a recognized need for a community-based organization to provide services and support for family caregivers in the Summit area. Today the hospital partners with the coalition, which has evolved to take on an education component as well, bringing information not only to caregivers but to the medical and health communities. "Our original charter was to reach out to the local community, but now it's really to be a caregivers support system through education," says McClarren. "We educate ourselves about pertinent issues like Alzheimer's disease and hearing impairment, so we can educate the community. We partner closely with the hospital to get programs out to the community, and when hospital staff members see patients and caregivers in need of support, they reach out to us. Sometimes all people need is to know where to go for resources."

At Overlook Medical Center, the newest resource for caregivers is the Thomas Glasser Caregivers Center. "Families use the Caregivers Center in many different ways," says Caregivers Center Coordinator Marian Teehan, LCSW. "Most take comfort in having the Caregivers Center available as a home away from home, so they can be near their loved one during the initial crisis and throughout the patient's hospitalization." Family caregivers are comforted by the quiet surroundings and can enjoy a complimentary massage, a pet-therapy visit, and warm beverage or snack to help reduce their stress. Computers are available to check e-mail, do research, and stay connected with friends and family and update them on a patient's progress.

"The Center is a wonderful resource—an oasis—where caregivers can come and rejuvenate themselves and share a meal as a family in the caregiver center dining area," says Teehan, a mastered prepared social worker who is available to meet with families, provide emotional support and counseling, and provide information about local resources.

As the newly opened Caregivers Center prepares for its own first holiday season, Teehan is acutely aware of the challenges caregivers are facing. "The expectations that we put on ourselves are so high," she says. "Everyone wants a perfect holiday season, but it can't always be perfect, especially when a loved one is hospitalized. It is important to set realistic expectations, determine what activities are most meaningful to family members, and focus on those activities. Caregivers need to understand that there will be things they don't have time for, and they can't let themselves be consumed by guilt."

Caregivers of hospice patients may find themselves in an even more vulnerable position during the holiday season, and may have a need for respite care. Florence McAlvanah, manager of the Atlantic Hospice program, explains that respite care comes in different forms. "Sometimes the family of a home-based hospice patient needs to be away from the home for a few days, and in those cases we can take the patient and place him or her in a facility for up to five days, which is paid for under the Medicare hospice benefit," she says. "Through our respite fund, we're also able to place a home health aide in the home overnight. Family members can be exhausted, and we want to allow them one or two good nights' sleep, and they can feel confident their loved one is being taken care of." In other cases, Atlantic Hospice sends volunteers to relieve family members at a patient's bedside for a few hours, or even sends volunteers into the home to allow live-in help a chance to go out and take care of personal needs.

"In hospice," says McAlvanah, "the focus is not just on the patient; it's on the patient and the family. Respite is one way that we can help meet the needs of family members."

Adds McClarren, "Caregivers need help, and as the population ages, more people are going to find themselves in the caregiving role. We're just at the beginning of this wave, and it's going to be a real eye-opener. We're going to need to create resources, and anything we can do to get out in front of the problem is a step in the right direction. Overlook is leading the way in this area, and hopefully it will encourage others to follow in their path."

For more information on the Coalition on Family Caregiving, go to www.cfcares.org or send e-mail to info@cfcares.org. For more information on the Thomas Glasser Caregivers Center, please contact Marian Teehan at (908) 522-6347. For more information on Atlantic Home Care and Hospice, call (973) 379-8440; a nurse is on call 24 hours a day.