One of the few things known about good recovery is that patients with a healthy support system do better. In an ideal world, each patient’s pre-injury support system would be able to meet their new needs—but most patients find that is not so. Many families are so consumed by the immediate needs of their loved ones, such as physical care, financial challenges, transportation, etc., that they are too overwhelmed to focus on the patient’s emotional needs.
That is part of what support groups help with. Here’s how joining a group can be an important component of the rehabilitation process for both patients and their caregivers:
Find new and different perspectives. Most families and friends are not familiar with brain injury before a brain injury, and lack the expertise to offer education, referrals or support. Often, families or friends can offer advice that is counterproductive like, “if you just tried harder you would feel better” or “if I were you, I’d be depressed, too.” Reassurance from the group that these perspectives can be discounted goes a long way to helping survivors feel validated. Even when the survivor has a good support system, groups can supplement their efforts and facilitate their recovery.
Minimize anxiety. The support group is a place where survivors do not have to feel defensive about their injury and its impact, (e.g. not working, living with their aging parents, lack of initiation, getting divorced) and this can help lessen anxiety and guilt. Since the other group members are not otherwise a part of their lives, they can give and receive unbiased feedback about their thoughts and plans. Honest and caring feedback is an invaluable tool and hard to find.
Feel less alone. Our survivors, as they continue to attend the group, discover that they too can learn to give guidance and advice that helps other people—something that helps everyone feel good about themselves. As family and friends move on with their lives, survivors can easily be marginalized and isolated, furthering a sense of being alone. But we know our survivors are not alone: there are millions of people who have experienced and are living with a brain injury. The support group can help them see how that is true.
Learn how others handle issues. As a mixed group, families can see firsthand how other families are handling difficult issues—and that their family issues are quite common.
Know someone is always there. Burke has provided for the mailing of “Brainwaves,” the bimonthly newsletter sent to survivors and caregivers since the inception of the group. This past month, we had a new participant who had been receiving the mailing for 27 years before deciding to attend a meeting. Perseverance is everything!
At Burke, the Traumatic Brain Injury Support Group for Survivors and Caregivers meets monthly and is open to survivors, their caregivers, family and friends. The group was established in 1988 when awareness of TBI and services were nonexistent, and has had extraordinary longevity.
Initially organized by Donna Russo, our social worker on the cardiac-pulmonary service, the group started with a core group of families looking to meet, strategize, and advocate for their loved ones. With Donna at the helm, the group went to Albany many times to advocate for services, and were instrumental in the advent of the TBI Waiver.
For more information about this group and other support groups available at Burke, visit www.burke.org/community
—Janet Goodman, LMSW, CBIS, Social Work/Case Management