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.
- Be sure to remove or secure items from your home that could result in harm to your family member with TBI. For example, keep car keys put away if your family member is not cleared to drive.
- Avoid keeping guns, knives, or other weapons in the house.
- When your service member/veteran with TBI begins expanding his or her activities beyond the house, it is important that he or she carry identification at all times.
- Some may choose to continue wearing dog tags but other forms of identification should be carried on his or her person, such as a MedicAlert bracelet or necklace. This will help insure that all medical information is readily accessible to emergency medical personnel if it is needed.
- A cell phone, programmed for voice activation, can be a lifeline for those who have trouble reading numbers or text.
- Depending on level of cognitive and functional ability, 24-hour care may be needed to ensure safety. Your family member will be evaluated for his or her ability to live alone with or without help.
- Ask the OT/PT to help with fall prevention if your family member has trouble with dizziness and balance.
- Removing clutter and simplifying your home environment can help a person with TBI. Clutter — too many things in the visual environment — can contribute to a sense of overstimulation.
- Clutter raises the likelihood that there are things that your family member may trip over or bump into, especially if he or she is experiencing balance or vision/perception problems.
Can My Family Member with TBI Drive?
Driving is a key mark of independence in our society. Your family member may be eager to get behind the wheel again.
A professional should evaluate your family member’s ability to drive. This evaluation is usually done by an occupational or physical therapist, a neuropsychologist, or a certified driving evaluator.
Good vision and good perceptual skills, such as the ability to judge distances between cars, are required to drive safely.
The evaluation will address the following skills as they relate to driving:
- ability to physically steer and brake the car, and control speed
- assessment of need for assistive devices for driving
- ability to get in and out of the car
- assess need for corrective lenses
- be able to concentrate attention in his or her central vision
- good peripheral vision
- the ability to judge distances between cars on the road and space in parking lots
- ability to interpret complex visual information, such as following verbal directions to a store
- recognize shapes and colors of traffic signs
- left/right neglect, no drifting to one side of the road
Speed of motor responses
- reaction time
- ability to brake or change lanes safely within a reasonable amount of time
- ability to process a lot of information and react quickly
- adequate decision-making skills in an emergency
- possess a healthy self-awareness and an understanding of his or her strengths and weaknesses.
- As cognitive skills improve, driving skills may be re-evaluated. Many people with TBI do eventually return to driving and drive safely. Driving skills affected by TBI can be improved through training that focuses on visual scanning, attention skills, and spatial perception.
- Professionals certified through the Association for Driver Rehabilitation Specialists can provide evaluation and training. A list of experts is found at https://www.aded.net/.
- In some situations, the loss of skills needed to drive safely may prevent the person from driving again. When this occurs, it is important for the doctor or another appropriate professional to insure that the family member with TBI and other family members understand the reasons.
- The family must be diligent about enforcing the “no driving” rule. For example, you may need to keep close control of the family’s car keys.
- If your family member cannot drive a motor vehicle safely, there are other transportation options. Public transportation (bus, train, subway) may be available.
- Resources for transportation to medical facilities for appointments, to obtain medications, or other needs may be obtained from a variety of sources, such as the Department of Veterans Affairs, Medicaid, Community Transportation Association of America, or Disabled American Veterans.
- Consider driving assistance from family members, friends, church, or community groups.
Should I Be Concerned about Alcohol and/or Drug Use?
- Some people with TBI turn to alcohol and/or drugs to help them cope with the effects of their injury. This coping strategy for a person with TBI can be very harmful and is never a good idea.
• After a TBI, the brain is more vulnerable to the effects of alcohol and drugs so the person will feel these effects much more quickly. Alcohol and other non-prescription drugs can slow down the recovery of your service member/veteran with TBI in the following ways:
- make it harder for the brain to heal
- interfere with thinking processes that are already slowed down
- interact negatively with prescription medications
- increase aggressive and socially inappropriate behaviors
- increase balance problems
- promote other risky behaviors
- create greater risk for seizures
- increase problems with the law for public drinking
- cause addiction
- cause problems with friends and family
- worsen feelings of depression and anxiety
- put your family member and others at risk for falls, car crashes, and other accidents that can lead to another TBI or worse.
Cognitive difficulties and decreased awareness make it more difficult for your family member with TBI to recognize that alcohol and drugs have a negative effect on him or her.
Take an active role in helping your service member/veteran with TBI avoid alcohol and drugs. You might:
- Talk with him or her about readiness to change drinking or drug use. Help your family member make a list of pros and cons of using substances.
- Spend time with those family and friends who are supportive of your service member/veteran not using substances. Minimize time with those who are not supportive.
- Avoid high risk situations, such as people or places that your service member//veteran associates with drinking or using drugs.
- Develop a plan to help your service member/veteran cope with tempting situations, such as leaving the situation or calling a supportive friend.
“There are situations where he wants to go out with the guys. What are 23-year-olds going to do? They’re going to go out and have a drink. With a brain injury, that’s not good because it can affect his recovery, and he knows that. But he’s one of the guys and he doesn’t want to be singled out. He
wants to fit in. So it’s very difficult.
What I do is tell his friends that they’re responsible for his well-being. I just keep reminding him, and I try to make sure that he’s in situations that are safe and that are going to be successful.”
— Cindy P.
- Explore new social circles or environments that do not involve drinking.
- Encourage learning of new ways to deal with stress (see Chapter 4).
- Remove alcohol and other dangerous substances from the home.
- If depression or boredom or loneliness are reasons for use, seek counseling and other services.
- If your service member/veteran has recently quit using substances, talk openly with him or her about the possibility of using again in the future and stress that one “slip” does not need to mean a return to regular use. Encourage use of support systems to help avoid a full relapse.
- Locate a local AA group or treatment program if advised by your health care team. Use of alcohol should be discussed with the health care team before leaving the rehabilitation facility.
“The one thing that’s been so good for my son is running marathons. When he was at the Wounded Warriors battalion, he was volunteering for Hope For The Warriors. They got him a trainer, and they set him up to run the Marine Corps marathon. They trained him and got him into running, which my son had always hated.
He’s constantly running and training. He’s training again for the Marine Corps marathon. He knows that when he’s training, he cannot drink and train. It just doesn’t go together. So that’s a wonderful way to keep the drinking away.”
— Cyd D.
How Can My Family Member Avoid Another TBI?
- Repeated blows to the head result in further damage to the brain. The effects of repeated injuries to a brain that has sustained a previous injury tend to add up, causing greater damage than the initial injury. (Think of boxers, football players, and other professional athletes who have become disabled due to multiple TBIs.)
- For this reason, it is best for people with TBI to exercise caution and avoid another TBI, if possible.
You can help your service member/veteran with TBI avoid another injury by:
- safeguarding your home (see the Home Safety Checklist at the end of this chapter)
- insisting on the use of safe practices (e.g., wearing seatbelts in the car)
- following the recommendations of the health care team on activity restrictions (e.g., no contact sports).
A good rule of thumb is: If they make a helmet for an activity (biking, downhill skiing, rollerblading, motorcycle riding, etc.), everyone in the family should wear one!
See more information included in Module 3: Becoming a Family Caregiver for a Service Member/Veteran in TBI.
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.