Caregiving for a loved one with a brain injury can cause stress in many ways. Family members of individuals with memory disorders resulting from injury report that the main problem is not the injury itself but the ambiguity it causes.
Adding to the stress, unpredictable memory loss brings a rollercoaster of absence and presence. While each survivor’s recovery is unique and many experience lifelong consequences, there are strategies to cope with these uncertainties:
Awareness and Education
Family members should try to gain as much information about brain injury as possible. Knowledge increases confidence and may reduce the anxiety that many feel when confronted with the unknown. The Brain Injury Alliance of New Jersey has an extensive guide, available in English and Spanish, that outlines what families can expect after a loved one has sustained a brain injury.
Connection with a Support Group
Joining a support group will help both family and survivor connect with people going through similar circumstances. This provides social and emotional support—a safe place to vent frustrations, share ideas and learn new strategies. Brands like Nixplaycan also offer survivors of brain injury, their families and friends a way to unite the moments from the past and present. Memories shared in photographs can help reinforce a support system which is crucial to brain injury rehabilitation.
A “Both/And” Mindset for Family Members
Caregivers are encouraged to adopt a “both/and” mindset as opposed to an “either/or.” For example, rather than thinking the care recipients have to be either here or gone, think of them as here and gone. This type of thinking is thought to be less stressful over time and practice.
Keeping it Simple
For people who have sustained a brain injury, memory issues can present different kinds of challenges. Memory changes are common even after a mild concussion, often a result of injury to the frontal and temporal lobes and limbic system. To cope, researchers suggest “keeping it simple.” Break information down into smaller pieces and try to keep a routine. Having an organized life can help reduce the burden of memory and learning. Using memory aids, such as calendars, lists, and notebooks, will help recovery of important details.
If you or someone you know is struggling with the impacts of brain injury, you can contact BIANJ Helpline at 1-800-669-4323. You can also donate to vital programs and services advocating for brain injury survivors.
Nixplay joined the Brain Injury Alliance New Jersey (BAINJ) last March 27 at their 13th Annual Gala to celebrate Brain Injury Awareness month. The gala honored people who have gone above and beyond to understand brain injuries and learn how to properly care for those who suffer from them. It was an evening that inspired hope and healing, raising thousands of dollars for a worthy cause.
Nixplay frames exhibited at the Brain Injury Alliance New Jersey’s Annual Gala
We were able to talk to Kristen Olsen, BAINJ’s Communications Manager, who shared with us the importance of awareness and education in helping patients lead independent and confident lives.
Please tell us about Brain Injury Alliance New Jersey.
Kristen Olsen: The mission of the Brain Injury Alliance of New Jersey is to support and advocate for individuals impacted by brain injury, and to raise awareness through education and prevention. Our vision is a world where the quality of life for people impacted is maximized, while increasing independence and creating a world in which they can thrive.
What are the organization’s major milestones? Any specific stories you would like to share with us?
Kristen Olsen: The organization was founded in 1981 by a small group of concerned parents of children with brain injury. The first program to go into effect was the Helpline, a Monday to Friday, 9 a.m. to 5 p.m. phone line through which concerned members of the community could get connected to resources and information. In the nearly 40 years since its inception, BIANJ has received 1,000 calls per year from survivors, family members, friends, caregivers, health and human service professionals, and the community at large.
Our other support programs include: BIANJ CARES, a free care management program for adults over the age of 21 with brain injury; CARES for KIDS, a program for those under 21; an extensive Support Coordination branch that works with the Department of Developmental Disabilities; and Camp TREK, a week-long residential program that provides social and recreational opportunities for adults with brain injury while also giving caregivers a week of respite. We also have support groups in nearly all New Jersey counties.
Members of the Brain Injury Alliance New Jersey at their 13th Annual Gala
Can you tell us a little about the leading causes of brain injury? Does BIANJ have programs that minimize the risk of brain injury?
Kristen Olsen: The leading causes of brain injury include falls, motor vehicle crashes, assaults, and self-harm. BIANJ has created a series of programs to address these causes and work towards preventing brain injury.
BIANJ hosts a number of senior fall prevention programs, including Heads Up Seniors and A Matter of Balance. Both help seniors lead independent and confident lives.
The Champion Schools Program was created nearly a decade ago as an opportunity for students and staff of New Jersey high schools to address teen driving safety. Each school chooses a teen driving safety topic and uses different methods to spread the message. A panel of judges review the campaigns and award winners with driving simulators for their school.
Concussion prevention has also become a main focus for BIANJ. Through a concussion committee comprised of community partners, BIANJ has created a number of resources for parents, student athletes, coaches, and school and medical professionals, including online courses that offer CME’s, coaches concussion courses, a concussion-specific website, and more.
Education is another main component of BIANJ programs. Efforts are made throughout the year to ensure that people impacted by brain injury, as well as professionals, have the most up-to-date information. This 2019, the Health and Human Service Professionals trainings will focus on Domestic Violence and Brain Injury. The Annual Seminar for Professionals, which will take place in Edison, NJ in May, is focused on ‘Moving Forward in Brain Injury.” The topics will include yoga and meditation, craniosacral therapy, neurotoxicity, sex and intimacy, neuropsychiatric issues, and more.
In addition to professional seminars, BIANJ also hosts an annual family-centric conference designed to provide the most recent and relevant information. Topics include friendships and relationships, cognition and memory, art therapy, agitation, and consumer fraud awareness.
How can we learn more about these topics?
Kristen Olsen: Free webinars are available 24/7 on BIANJ’s website. Subjects include travel skills, activity recovery post-concussion, voice assistive technology, deep thinking through improved sleep, caring for caregivers, and more. Free in-person traveling workshops for a variety of topics can also be reviewed and requested.
How can we join your cause and be advocates for people with brain injuries?
Kristen Olsen: BIANJ offers advocacy services to the brain injury community and the state of New Jersey through our Advocacy and Public Affairs department. Through the department and CHIC, the Council for the Head Injured Community, BIANJ works to champion and publicize the advocacy, rights, and needs of people who have been impacted by brain injury. Members of CHIC are active in New Jersey and the national capital to ensure the voices of the brain injury community are heard.
If you or someone you know is struggling with the impacts of brain injury, you can contact BIANJ Helpline at 1-800-669-4323 or visit their website at https://bianj.org/.
Bea is Nixplay’s Social Media Manager. She enjoys drinking coffee, reading about wars, and writing stories. Send her a message at beatrice.bisais@nixplay.com.
