One of the most important factors in a patient’s recovery after a disability, injury or illness is the involvement and support of the family. Usually the patient’s family is the caregiver and thus plays a vital part in the rehabilitation process for a number of reasons: Positive attitudes and reinforcement from family members can inspire patients’ commitment to recovery and help them adapt to new physical challenges or limitations. Family support and encouragement can also help patients deal with issues of self esteem related to their condition. And because family members know the patient best they can assist the rehab staff in determining ways to motivate their loved one and maintain open communication between the patient and the rehabilitation team.
Approximately 65 million people—or 29 percent of the U.S. population—provide care for a loved one that is disabled, chronically ill or aged. Family members are affected by the patient’s condition and often become co-managers of the patient’s care. As a result, they may experience changes that create stress within the family. For example, a spouse or son or daughter in a caregiving role may need to rearrange their work schedule, decrease their hours, or even take a leave of absence to manage his or her responsibilities. There may be a change in living arrangements, issues that arise with childcare, financial problems due to medical bills or unemployment that contribute to pressures on the family.
But caregivers shouldn’t feel alone in their situation. By working together with the rehabilitation team, the patient and family can help lessen the adverse effects of these changes and work toward finding realistic solutions. First and foremost, families need to become educated about a loved one’s condition and prognosis and involved in the development of the rehabilitation plan. The more caregivers learn—by communicating with the health care team and taking advantage of educational programs offered at the hospital— the better prepared they are to care for their loved one at home. At Burke, for example, family members are encouraged to attend and participate in treatment and training sessions in order to become aware of their loved one’s progress and learn safe and effective techniques to assist them. Families and caregivers have ongoing access to information about available services and resources that can help the patient successfully transition to the next phase of rehabilitation.
In addition to education, family caregivers need support for the emotional and psychological aspects of their new responsibilities. While caring for a loved one is undoubtedly rewarding, it can also be exhausting and at times overwhelming. Caregivers commonly experience feelings of burden, isolation, loneliness, depression and anxiety and research has shown they are at risk for physical and emotional health problems.
One of the best ways for family caregivers to cope is to find a support group. Talking with others who face the same challenges can help caregivers feel less isolated and provide an opportunity to share resources and caregiving tips.
There are many benefits to participating in a support group:
- Feeling less lonely
- Social interaction in a safe environment
- Sense of empowerment
- Improved coping skills
- Venue to speak openly and honestly about your feelings
- Reduction in stress, depression or anxiety
- Better understanding of what to expect with your situation
- Information about new medical research
- Opportunity to gain information about treatment options
A support group usually focuses on a specific situation or condition. At Burke, there are support groups for ALS, Amputees, Aphasia, Pulmonary, Osteoporosis, Spinal Cord Injury, Traumatic Brain Injury, Stroke, and young-onset Parkinson’s. There’s also a support group dedicated entirely to the “well spouse” that provides peer support and education about the unique issues facing the caregiving partner in a couple.
Some of Burke’s support groups have been formed by community members with the same condition or by someone interested in it, such as a family member. In some cases, support groups are organized by nonprofit organizations. Others are provided by Burke staff who are considered experts in a particular area of healthcare.
In addition to joining a support group, there are several ways that you as a family member can ease the day-to-day stress of caregiving. First, don’t be afraid to ask your family and friends for assistance. It may help ahead of time to make a list of all the caregiving tasks required, and then determine which activities you can realistically accomplish on your own and which ones you’ll need help with. Second, take care of yourself: exercise regularly, eat right, get enough sleep and keep up with regularly scheduled doctor’s appointments. Third, make it a priority to meet regularly with friends and do things you enjoy. By taking time to relax and recharge, you’ll feel more energized and better able to care of your loved one.
For more information about Burke’s support groups and community education programs, visit burke.org/community.