“Caregivers – The Visible and Invisible TBI Support Network”
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Edited by Lee E. Horton, M.Div., LCAS/CCS
What is a brain injury?
A brain injury (including all types of acquired brain injury, i.e.: trauma, blasts, tumors, infections, stroke, cardiac arrest, anoxia, etc.) affects not only the individual, but the entire TBI caregivers support network. The person with a brain injury will need help from this network of caregivers. A caregiver can be an immediate family member (spouse, child, sibling, parent), therapist, home health aide (volunteer/paid), relative, or friend. (Not all caregivers are visible – many are invisible and unknown.) It’s important for clinicians to speak with survivors and their caregivers using everyday language for clear communication. Remember, caregivers will have many questions that need answers. For example:
Excerpt taken from: Supporting Survivors and Caregivers after Brain Injury: A program for psychosocial support; Patty van Belle-Kusse and Judith Zadoks, p.1
Everyone involved with the brain injury survivor agrees that the brain injury has brought about many changes.
Everyone involved seems to have a different opinion about the answers to these questions. For example: the person with the brain injury may feel capable of being independent or self sufficient, whereas people in the network of caregivers feel that assistance is needed.
Living with a brain injury, for the survivor and the caregiver, is a process of exploration. There are no ready-made answers. Instead, caregivers and survivors – you – have to find your path together. During this exploration phase, the common goal is to help the person with the brain injury regain control of his life. All want him to manage his life and shape it to the best of his ability. In other words, the common goal is to help the person with the brain injury regain autonomy. An initial step in the exploration phase is for the person with the brain injury to explore:
Without this understanding, it is difficult for the survivor to create a realistic picture or view of self. It is precisely this perspective and insight that are often a challenge for people with a brain injury. Not only is it important for the person with the brain injury to “know where she is at,” it is also important for people in her network of caregivers to know so that they can provide appropriate support.
Excerpt taken from: Supporting Survivors and Caregivers after Brain Injury: A program for psychosocial support; Patty van Belle-Kusse and Judith Zadoks, p.7
During the recovery process, many survivors are under the care of a rehabilitation treatment team. Families do play a vital role as a member of that team. The inpatient rehabilitation phase will be a time for learning for the survivor and the caregivers – who will have the opportunity to observe therapy sessions, learn from therapists on the team, and attend educational sessions. As a member of this team, caregivers will be asked to provide information about the survivor, including: likes, dislikes, interests, etc.
Tips on helping the person who has a brain injury
Tips on important topics to discuss with your physician . .
Tips for helping the person cope after a brain injury…
Tips for caregivers…
Excerpts taken from: Brain Injury It is a Journey; Flora Hammond, M.D. and Tami Guerrier, B.S., Editors
Changes in a survivor’s emotions and anger are stressful for families. Janice is about at the end of her rope. Her husband John suffered a traumatic brain injury (TBI) over a year ago. After a long rehabilitation, it seemed like things might return to a somewhat normal state. John returned to work and, for the most part, appeared to cope with the day to day. But recently, the smallest irritations are causing John to become a fountain of emotion and anger. Janice wonders if this is a result of his brain injury.
Researchers at the Rehabilitation Hospital of Indiana are aware that a TBI may cause long-lasting changes in behavior, ranging in severity from irritability all the way to physical outbursts. These changes often impact relationships, work performance, social interactions and community life. They add to the other stressors imposed by a TBI.
Although irritability is a common post-TBI occurrence, there is little known about what it is, what causes it, the impact on individuals and family members’ lives, and more importantly, what treatments are effective. Research is being conducted to answer these concerns.
Excerpt taken from: “Irritability and Aggression after Brain Injury”, Flora Hammond, M.D.
10 Warning Signs of Caregiver Stress
Excerpt taken from: Brain Injury Coping Skills: A support and education program for adults with brain injury and their caregivers; Samantha Backhaus, Ph.D. and Summer Ibarra, M.A., p.26
“Traumatic Brain Injury: Hope Through Research”
Excerpt: Traumatic brain injury (TBI) is the leading cause of death and disability in children and young adults in the United States. TBI is also a major concern for elderly individuals, with a high rate of death and hospitalization due to falls among people age 75 and older. Depending on the severity of injury, TBI can have a lasting impact on quality of life for survivors of all ages – impairing thinking, decision making and reasoning, concentration, memory, movement, and/or sensation (e.g., vision or hearing), and causing emotional problems (personality changes, impulsivity, anxiety, and depression) and epilepsy. https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Traumatic-Brain-Injury-Hope-Through
BTCAL — Brain Tips: Inspirational and Motivational Calendar, Cheryle Sullivan, M.D.
BICS — Brain Injury Coping Skills: A support and education program for adults with brain injury and their caregivers; Samantha Backhaus, Ph.D. and Summer Ibarra, M.A.
CREF — Cognitive Rehabilitation of Executive Functions, A Two-Volume Set by Lawrence S. Dilks, Ph.D. and Kimberly S. Hutchinson, Ph.D.
LVLF — Living Life Fully after Brain Injury: A workbook for survivors, families and caregivers; Robert T. Fraser, Ph.D., CRC, Kurt L. Johnson, Ph.D., CRC, and Kathleen R. Bell, M.D., Editors
MCSB — Managing Care and Services after Brain Injury: A workbook for families and caregivers; Don Hood, B.A., Marilyn Lash, M.S.W., Ann Glang, Ph.D., and Bonnie Todis, Ph.D.
PGCR-CL — For Clinicians – The Practical Guide to Cognitive Rehabilitation: Overcoming Cognitive Neurological Impairments by Kimberly S. Hutchinson, Ph.D. and Lawrence S. Dilks, Ph.D.
PTCA – Pocket Tips for Caregivers by Marilyn Lash, M.S.W. and Janet Cromer, R.N.
SABI — Supporting Survivors and Caregivers after Brain Injury: A program for psychosocial support; Patty van Belle-Kusse and Judith Zadoks
CMFT — Compassion Fatigue, Janet Cromer, RN, LMHC (spouse)
COUP — Couples: Hope and intimacy after brain injury, Taryn Marie Stejskal, Ph.D., LMFT (clinician)
HSDP — Helping Sons and Daughters: When a parent has a brain injury (Tip Card), Marilyn Lash, M.S.W. and Janelle Breese Biagioni
ISSX — Intimacy, Sexuality and Sex After Brain Injury, Taryn Marie Stejskal, Ph.D., LMFT (clinician)
LCSP — Life Changes: When a spouse or partner has a brain injury, Janelle Breese Biagioni (spouse) and Marilyn Lash (spouse), M.S.W.
LIFE — Life after Brain Injury: A guide for families, Carolyn Rocchio (mother) and Marilyn Lash, M.S.W. (caregiver)
TAFA — Talking with Families after Brain Injury, John W. Richards, M.S.W., MBA, Marilyn Lash, M.S.W. (spouse) and Carolyn Rocchio (mother)
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This Brain Injury Journey Bulletin is intended to offer encouragement and support for TBI Survivors and Caregivers, Clinicians, Friends and Family, and more! We hope that you find it informative and helpful.
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For permission to reprint or share this bulletin, contact Lee Horton at 919-556-0300.