BRAIN INJURY JOURNEY BULLETIN: “Caregivers – The Visible/Invisible TBI Support Network”

“Caregivers – The Visible and Invisible TBI  Support Network”

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May 2017

Edited by Lee E. Horton, M.Div., LCAS/CCS

What is a brain injury?

Brain Injury and Caregivers

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:

  • How can I help the person with a brain injury to sort out his life again?
  • What does she hope to achieve in the future?
  • Are her goals realistic?
  • How do I talk about these things with him?
  • How can I help care for her without taking over her life?

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.

  • What are these changes, exactly?
  • What are their implications?

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.

  • How do you reach a consensus?
  • How do you resolve conflicting perceptions?
  • How do all parties find a balance between respecting a person’s choices and intervening when risks are unacceptable?

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:

  • who she is now.
  • the implications of her brain injury.
  • her abilities and her expectations.

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.

  • Be consistent in your response about the injury and the person’s behavior.
  • Place a calendar where it can be seen and refer to this when talking about time and day.
  • Model calm behavior despite how angry or frustrated the survivor is.
  • Provide a clear and meaningful response to the survivor’s behavior.
  • Redirect the survivor to another activity rather than get into a power struggle over who is right or wrong (make sure to follow suggestions provided by Team physician and other Team members).
  • Begin providing care while the survivor is still in the hospital in preparation for discharge to home.
  • Encourage independence.

Helping begins with respect & dignity

Tips on helping the person who has a brain injury

  1. Treat the individual with dignity and respect. Do not talk about the person with the brain injury in their presence.
  2. Begin conversations with orienting information in the early stage of care if the person is confused: i.e., “Today is Tuesday, July 13”; “You are at _______________. (fill in the blank)”
  3. Recognize and reinforce positive behavior and the person’s attempts to be more independent in daily activities.
  4. Allow the person to have independence within restrictions needed for safety.
  5. Be patient!

Tips on important topics to discuss with your physician . .

  1. Take all prescribed medications according to instructions.
  2. Always discuss any medication changes with your physician.
  3. Always talk with your physician before stopping a medication.
  4. Avoid operating a motor vehicle, heavy machinery, lawn mower, etc. until the physician gives medical clearance.
  5. Avoid alcoholic beverages and illegal drugs. Following a brain injury, individuals should not drink alcoholic beverages, such as beer, wine, hard liquor, or smoke until the physician gives medical clearance.  Even then, it may be a better choice to avoid using any mind-altering substances.

Planning provides structure and strategy to daily living

Tips for helping the person cope after a brain injury…

  1. Support the use of compensatory strategies taught in rehabilitation: i.e., using a planner, medication dispenser, or watch alarm.
  2. Keep visual distractions, such as many pictures on a wall, clutter, etc., to a minimum.
  3. Keep noise levels low to avoid over-stimulation.
  4. Set up a daily routine or schedule. Do not allow the individual to sleep or watch TV most of the day. Structure, repetition and consistency will increase independence.
  5. Prepare the person for the “change in routine” as much as possible prior to the change.
  6. Do not take the person’s comments, rudeness, irritability, or memory difficulties personally. It is not a personal attack but a characteristic symptom of brain injury.
  7. Avoid arguing with the individual after a brain injury. Redirect the person by changing the subject of conversation or task.

Tips for caregivers…

  1. Allow breaks for the caregiver to avoid burnout, frustration and feeling overwhelmed.
  2. Delegate responsibilities to other family members, friends, etc. If others offer to help, do not hesitate to accept it. Be specific on what kind of help is needed.
  3. Educate yourself about the possible long-term effects of brain injury and ways  to handle these life changes.
  4. Maintain regular follow up visits with the rehabilitation physician.
  5. Seek counseling for yourself and your family when feeling overwhelmed or frustrated.
  6. Become involved in a brain injury support group. This involvement is helpful for both the survivor and family members.

The Journey has a beginning and an ending.

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

Stress creates problems-take steps to resolve it.

  1. Denial about the disease and its effect on the person who’s been diagnosed — “I know Mom is going to get better.”
  2. Anger at the person with the brain injury or at others; that no effective treatments or cures currently exist; and that people don’t understand what’s going on — “If he asks me that one more time I’ll scream!”
  3. Social withdrawal from friends and activities that once brought pleasure — “I don’t care about getting together with the neighbors anymore.”
  4. Anxiety about facing another day and what the future holds — “What happens when he needs more care than I can provide?”
  5. Depression begins to break the spirit and affects the ability to cope — “I don’t care about anything anymore.”
  6. Exhaustion makes it nearly impossible to complete necessary daily tasks. “I’m too tired for this.”
  7. Sleeplessness caused by a never-ending list of concerns – “What if she wanders out of the house or falls and hurts herself?”
  8. Irritability leads to moodiness and triggers negative responses and reactions – “Leave me alone!”
  9. Lack of concentration makes it difficult to perform familiar tasks – “I was so busy, I forgot we had an appointment.”
  10. Health problems begin to take their toll, both mentally and physically – “I can’t remember the last time I felt good.”

Coping heals & generates healthy responses!

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.


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

Tip Cards

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)

Lash & Associates Publishing Catalog 2017

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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.

Your friends at Lash & Associates Publishing #LAPUBLISHING

For permission to reprint or share this bulletin, contact Lee Horton at 919-556-0300.

One response to “BRAIN INJURY JOURNEY BULLETIN: “Caregivers – The Visible/Invisible TBI Support Network””

  1. Dear Lash & Associates Publishing,

    As a caregiver, I appreciate these articles. You have offered a smorgasbord of ideas from which to choose. Thank you.

    Donna O’Donnell Figurski

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