If you are caring for a stroke survivor, you may have a lot of questions about whether your loved one will recover and what his or her needs will be in the months and years ahead. You may also worry about how you will manage in your new role.
"Caregiving can be a big load to shoulder," says Maggie Fermental, RN, a stroke nurse at the Beth Israel Deaconess Medical Center in Boston. Formerly an OR nurse, Fermental suffered a stroke at the age of 31 from a fall while ice skating. She now counsels stroke survivors and their families. "Not only do caregivers continue to fulfill their role in the family, they also have to care for the survivor and take on that person's role as well," Fermental says. "It can be overwhelming."
In the U.S., more than 50 million people provide care for a loved one with a disability or illness. Anywhere from 59% to 75% of caregivers are women, and most are caring for an older parent. Yet despite the challenges of caregiving, many people report that they appreciate life more and feel positive about being able to help.
As a caregiver, it can be all too easy to make your loved one the focus of your life. "Caregivers really need to care for themselves too," Fermental says. "People feel obligated to do it all, but it's vital to ask for help. You can't do it alone." Here are some suggestions that can help you balance the needs of the stroke survivor with your own health and happiness.
First Steps for Caregivers
In the first weeks after a stroke, you'll have a lot to learn and assess as you look to the future.
Educate yourself. "One of the biggest stumbling blocks for caregivers is knowledge," says Richard C. Selenick, MD, medical director for HealthSouth RIOSA in San Antonio, Texas. Selenick is also editor in chief for HealthSouth Press and author of Living with Stroke: A Guide for Families.
There can be a lot to learn, so take advantage of every opportunity to learn about stroke and your loved one's condition and prognosis. Take part in support groups or programs that are offered by the hospital. Talk with the health care team about what the stroke recovery and rehabilitation process will be. "The more you learn," Selenick says, "the better you'll be able to care for your loved one."
Look into insurance coverage and assess your finances. Medicare and/or health insurance will cover most of the hospitalization and rehabilitation expenses. However, there may be restrictions on which facilities and providers are covered. So be sure to find out exactly what is covered and what out-of-pocket payments may be needed. Also remember that as your loved one gains abilities or is no longer progressing, coverage may change or stop. The hospital's social service department or a case manager can help you negotiate the often complex world of insurance and explore other options should you need additional aid.