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This is a chapter from the Family Caregiver Curriculum, Module 3: Becoming a Family Caregiver for a Service Member/Veteran in TBI.
Each person’s experience with the effects of TBI is unique. Most effects improve with time, although some may linger for a lifetime. Only time will tell.
As you are now aware, brain injury presents many challenges for survivors and their families. For many, recovery will extend over a lifetime. There is no “normal” time frame for recovery. Many family members with severe injury surprise doctors with an unexpected degree of improvement.
Many factors determine the extent of recovery. The more severe the damage to the brain, the greater the likelihood of long-term problems. Pre-injury history plays a role in how the individual will adapt and accept these changes.
However, with the passage of time, a dose of patience, and a strong support system, most individuals will go on to productive and fulfilling lives.
Returning to the community, to family, and to school or work following a TBI can be challenging. It is possible. For most family members with TBI, the possibility is what drives family members with TBI to work hard in therapy.
“It does get better. I don’t know if it gets better because you get used to it or because they are making improvements. Jason has definitely made improvements. We’ve kind of fallen into a routine, and I guess when you fall into a routine, then you know what to expect. I guess that makes it easier. It does get easier, just because they’re getting better, and they do get better.”
— Pam E.
“He’s been really good. He’s been going to his appointments all by himself. He tells me what happened at the appointment, and what kind of drugs they give him. I really couldn’t tell you exactly what his medications are unless I look in the cupboard. He is to the point where he is doing it himself.”
— Kristen S.
What Can I Expect When My Family Member Comes Home?
- For most of us, a “normal” and fulfilling life usually includes things like living independently, spending time alone, working, attending school, volunteering, driving, doing household chores, parenting, dating, and participating in social and leisure activities of our choosing.
- For a person who has recently experienced a TBI, some or all of this may not be possible right away. The hope is always there that most will be possible, over time.
- Moving back home is an exciting step in the recovery process! Although the transition to home is certainly positive, it is important to be aware that it may also be stressful at times.
- There is no way to prepare yourself for what lies ahead. With time, most people with TBI and their families successfully adjust to life at home.
- Some families report that during the first few days or weeks at home, their family member actually seemed to have taken a step or two backwards. Your family member with TBI needs more time than he or she used to in order to adapt to a new environment, even if it’s a familiar one.
- Returning to the community, to family, to a familiar setting requires thoughtful planning to insure that the transition goes smoothly. It is important that you work closely with the rehabilitation team to prepare a discharge plan.
- Skills that your service member/veteran acquired or relearned in rehabilitation do not easily transfer into a home setting without a great deal of support and reinforcement. The therapy team will spend weeks to months preparing you and your family member for this step.
- You will both have many opportunities to practice and to identify what the challenges might be BEFORE you go home. Those with TBI prefer structure. They adjust better and thrive when there is some routine and predictability to their days. It is helpful to add structure right away at home by scheduling activities and rest breaks much like the schedule observed in rehabilitation.
- Over time, as everyone adjusts to being home and your service member/veteran continues to recover and gain skills, the need for so much structure may lessen and more flexibility will be possible.
- Your family member may be concerned that he or she cannot easily make comfortable relationships with other people because of the cognitive and communication effects of TBI. You may be worried that he or she will behave inappropriately or unsafely because of reduced judgment or impulsivity.
- Role play potential social situations with your family member with TBI before he or she ventures into community settings. This helps in understanding appropriate behavior.
- You may also find it useful to help your family member with TBI prepare for and organize trips into the community. Recreational and occupational therapists are your best allies in this effort and they will
- work closely with you to practice community re-entry.
- You can find more information about programs from the Department of Veterans Affairs to assist your service member/veteran with TBI reintegrate into the community in Module 4.
“My son volunteers at an elementary school. He loves children. He volunteers on Monday and Wednesday with his TBI team. He assists the physical education teachers twice a week for three hours.
He also volunteered at an animal shelter, and he would help walk the dogs, bathe them, and sometimes they’d let him give an injection. He has come a long way. I think they’re giving him different options for the future. You know, volunteer work, what he can do with his life every day, how he can keep himself busy and keep using his skills. We all know, if you don’t keep using it, you’re going to lose it. So it’s important to keep him busy.”
— Cindy P.
How Can I Protect the Safety of My Service Member/Veteran with TBI?
- Use the Home Safety Checklist at the end of this chapter to assess the safety of your home. Your physical therapist and occupational therapist (PT/OT) will work with you to decide if you need to make safety modifications to your home. Talk to your PT/OT to learn about what other resources might be available through VA.
The Traumatic Brain Injury: A Guide for Caregivers of Service Members and Veterans provides comprehensive information and resources caregivers need to care and advocate for their injured loved one and to care for themselves in the process. The Guide was developed by the Defense Health Board, the Defense and Veterans Brain Injury Center and the Department of Veterans Affairs.