What Happens to Family After Brain Injury

Jeffrey S. Kreutzer, PhD, ABPP, is the Rosa Schwarz Cifu Professor of Physical Medicine and Rehabilitation at Virginia Commonwealth University (VCU), Medical College of Virginia Campus. There, he is also a professor of Neurosurgery and Psychiatry. Dr. Kreutzer serves as Director of Virginia's federally designated Traumatic Brain Injury Model System and coordinates VCU Health System outpatient services for families and persons with brain injury. For the last two decades, he has been active in implementing empirically based vocational rehabilitation, psychological support, cognitive rehabilitation, and family support programs. Dr. Kreutzer has co-authored nearly 150 peer-reviewed publications, most in the area of traumatic brain injury and rehabilitation. Co-Editor-in-Chief of the international journals Brain Injury and Neurorehabilitation, he has also published a dozen books focused on topics including vocational rehabilitation, community integration, behavior management, and cognitive rehabilitation. Currently, he serves as Editor-in-Chief of the soon to be published by Springer, New York, Encyclopedia of Clinical Neuropsychology.

Taryn M. Stejskal, PhD is a licensed marriage and family therapist and an Advanced Rehabilitation Research Training (ARRT) postdoctoral research fellow at Virginia Commonwealth Medical University (VCU) in the division of neuropsychology in the department of Physical Medicine and Rehabilitation (PM& R). She received her masters degree in Marriage and Family Therapy (MFT) as well as her doctoral degree from the University of Maryland, College Park (UMCP). At present, Dr. Stejskal is the family support and education coordinator at VCU. She conducts the Brain Injury Family Intervention (BIFI), funded by National Institute of Disabilities and Rehabilitation Research (NIDRR), a clinical research program designed to help families and couples gain necessary education, psychological support, and personal skills after brain injury. Dr. Stejskal trains clinicians to implement the BIFI and presents her work nationally as well as internationally. She has written numerous peer reviewed research and newsletter articles on the impact of brain injury on couple and family relationships. Dr. Stejskal is also a volunteer co-facilitator for the Brain Injury Association of Virginias (BIAV) family support group, and she is an executive board member of the Community Futures Foundation (CFF).
On April 24th, 2009, BrainLine had the opportunity to sit down with Dr. Kreutzer and Dr. Stejskal to talk about their work with traumatic brain injury survivors and their families.

[@DoyleRaizner]

Brain injuries do affect entire families. As indicated in this video, how and to what extent of that affect, will depend on which family member is injured and their role in the family.

[@ElusvOptmst1]

Wonderful information.

[@kodyreynolds4158]

I've had head injuries my whole life. My dad gave me my first one by kicking me down a flight of stairs which i believe caused frontal lobe damage since i've had learning difficulties after since then. then continuous concussions hitting the back of my head at least twice that i remember. I can tell you now i believe i've done irrepairable damage to my mother through the way i talk with her due to delusions i have about her. I do these things because in my mind i want to push her away and hope she'll forget about me and live her life. i've isolated the majority of my life because i don't want to hurt peoples feelings and most of the time i don't mean to it just comes out the wrong way. It's funny i never wanted to be a monster like my father was and i ended up becoming that anyway. I hope i'm forgotten and people live better without me and don't suffer. If i were to offer some advice if you're dealing with people with tbi most of the time if not all the time we're in our basest of brain just in figth or flight all the time even when alone to the point we get numb and don't know if we're real or exist. Thats why at least for me when i say or do things it's like i'm not there and it doesn't matter. Also it's good to understand what we're going through but i don't believe anybody has to accept it. And do be careful don't put yourself in harms way because you think you can help or save someone that's not your burden to bear.

[@amandalynngibson8332]

Thank you so much.

[@cazanickbd1887]

My dad got one when I was 2 I'm almost 40 now looking back it's been so rough when he gets stressed it's way way worse a tree got dropped on him and his affected areas are memory and temper so

[@Wreakmayhem]

Im experiencing this currently with my stepdad. Its almost to the point of forcing myself to not give a damn. Its not what i want, but it seems ive become a second victim of it. Hes really become such a jerk. What do WE do to survive this?

[@rosemerrynmcmillan1611]

Quite often adult children with brain injury will want to become independent, live alone or get married. It can often be a trial or error thing. When the living independently fails or their relationship or marriage fails they have to come back home and reassess things. They may have got in trouble with the law and then this further complicates things. Carers and family can then suffer the grief of seeing their brain injured children go to prison for something that is a result of that persons brain injury. This is why SUPERVISION and SHELTERING become ABSOLUTELY VITAL for the brain injured person in order to keep them out of the legal system and its ramifications. Their brain injury may worsen over time which is often the case. The reassessment may involve constant supervision and the person with the brain injury living in a "sheltered" situation whilst maintaining their safety and dignity and the safety of others. Aging parents who are carers creates worries for the future and also problems caring in the present. There are no longer live in institutions or special care facilities to support brain injured people where they may have enjoyed the company, society and family like atmosphere of others in the same situation. Brain injured and intellectually or physically disabled people are now isolated in the community with individual carers on shifts often supporting them. They may have day centres or organized outings under an organizational umbrella but it's not the same as having their own safe community environment to operate in. Parents can and will most likely also suffer isolation from other family.members or siblings of the brain injured adult who don't understand brain injury and can't be bothered understanding it. Yes ACCEPTANCE is KEY and something one MUST DO in order to have a REALISTIC grasp on the situation. One must MANAGE Brain Injury and not have unrealistic expectations of what kind of "recovery" is possible and learn to LIVE with it. Yes it's great to encourage each new achievement but having ideas of complete recovery from say an extremely severe traumatic brain injury is completely unrealistic. People who can't cope with brain injury and its lifetime effects will often apply popular methods such as " positive thinking" or " Pentecostal or Charismatic prayer for COMPLETE healing" in an effort to change the situation. These people are usually in medical denial and need help, education and counselling understanding brain injury and its impact on them personally and on their friend or relative who is affected.

[@Susan-jn3yb]

Well said in so many ways. As the parent we do try to shelter them. As they become older they want more out of life than they can physically have. And sometimes emotionally as well. This upsets them and breaks our hearts. We are isolated and no one else understands unless they too have a similar situation. But at least we have experienced more of life than we can ever give them. They realize this as they become young adults. Even though they can't understand many things, this one thing they do. My Son has had multiple cranotomies for cancer- tumor removal and shunt placement, plus many more surgeries. Too many to list . He was diagnosed at almost one and a half years old. Every surgery is trauma to the brain. He is now 23. I feel so concerned for his future, when I am gone. No one else will advocate or care for him like I do. It has been hard for him. My prayers are always the same. Dear God, Who will make sure his care is the very best of what he needs? Who will stay by his side when he needs it? Who will make sure he eats and showers ? Who will make sure he goes to bed and wakes up? Who will be a friend to him whilst asking nothing in return? Who will love him when he is lonely? Who will remind him that God has not forgotten him when everyone else has? Who will cheer him up when friends don't call because he can't do the things that they can do? Who will understand that he may look and sound the same as every other kind ,gentle , 23 year - young Man, but he is not? Who will make sure he has vitamins and healthy food along with hugs? Who will put his medicine in pudding because he can't swallow pills? Who will repeat things to him daily , because he forgets ? Who will make sure he doesn't get lost and never leave him home alone, in case he has a seizure ? Who will help him see or hear when his brain is having extra trouble understanding? Who will help him find his words when he is telling a story over again or asking the same question? Who will keep him safe from falls? Who will tell him who I am if he forgets? ( I will! ) Who will care for him when I am no longer here? Who knows how special he is? ( I do! ) Who knows how I am truly thankful for his love? ( I am.) Who knows if his love will end because he has to leave before me? Who knows( because they said he wouldn't live,) if he will live on after I am gone? Who knows ? Only God knows. But I do know , I wish he would tell me!

[@nonameno8065]

How can I find a BIFI specialist in my area? Needed. Thanks!

[@playnejayne5550]

Negotiating roles with an adult child with TBI is very difficult. This person is an adult, not a child, and yet. . . How to set limits that the impulsive adult child will or do. This person's friends may believe the relationship is the same. How about when they are alcohol and drug abusers? Should the adult parent at least try to clue them in on how dangerous that is for their old friend?

[@rosemerrynmcmillan1611]

Quite often adult children with brain injury will want to become independent, live alone or get married. It can often be a trial or error thing. When the living independently fails or their relationship or marriage fails they have to come back home and reassess things. They may have got in trouble with the law and then this further complicates things. Carers and family can then suffer the grief of seeing their brain injured children go to prison for something that is a result of that persons brain injury. This is why SUPERVISION and SHELTERING become ABSOLUTELY VITAL for the brain injured person in order to keep them out of the legal system and its ramifications. Their brain injury may worsen over time which is often the case. The reassessment may involve constant supervision and the person with the brain injury living in a "sheltered" situation whilst maintaining their safety and dignity and the safety of others. Aging parents who are carers creates worries for the future and also problems caring in the present. There are no longer live in institutions or special care facilities to support brain injured people where they may have enjoyed the company, society and family like atmosphere of others in the same situation. Brain injured and intellectually or physically disabled people are now isolated in the community with individual carers on shifts often supporting them. They may have day centres or organized outings under an organizational umbrella but it's not the same as having their own safe community environment to operate in. Parents can and will most likely also suffer isolation from other family.members or siblings of the brain injured adult who don't understand brain injury and can't be bothered understanding it. Yes ACCEPTANCE is KEY and something one MUST DO in order to have a REALISTIC grasp on the situation. One must MANAGE Brain Injury and not have unrealistic expectations of what kind of "recovery" is possible and learn to LIVE with it. Yes it's great to encourage each new achievement but having ideas of complete recovery from say an extremely severe traumatic brain injury is completely unrealistic. People who can't cope with brain injury and its lifetime effects will often apply popular methods such as " positive thinking" or " Pentecostal or Charismatic prayer for COMPLETE healing" in an effort to change the situation. These people are usually in medical denial and need help, education and counselling understanding brain injury and its impact on them personally and on their friend or relative who is affected.

[@playnejayne5550]

@@rosemerrynmcmillan1611 Wow. A lot to think of there. My adult son, with a severe TBI is smoking a lot of pot, which makes it really difficult for him to get his feet on the ground. The girl who wants to marry him is beautiful, smart, and capable, but doesn't really get what her life will be like. He believes he can live independently, although he's getting less competent over time. LESS competent. And here I am with my 91-year-old mom and him not knowing what to do.

[@rosemerrynmcmillan1611]

Totally agree. We see our son getting LESS competent too! Apparently this is what happens often with brain injury. It gets worse as they get older and they are more susceptible to dementia and Alzheimer's. My opinion is drugs and alcohol should most definitely NOT be consumed by a brain injured person. It affects them twice as badly as the brain can't operate normally very well let alone with drugs or alcohol. I've seen it happen and it can be quite dangerous for the brain injured persons. Unfortunately the brain injured person will need oversight and safe people and places to hang out with. This will involve usually not hanging with old friends anymore who use alcohol and drugs and making new friends with people who don't use these drugs. Pot might help him to cope but will limit him in other ways. We've seen it and alcohol affect our brain injured son to the point he gets himself into very tricky situations. But every situation is different and every family and brain injury so I don't or can't judge. People do what they can to survive. We have seen our adult son go into relationships and also marriage. ( and have 2 beautiful children as well) Both have failed because the partner did not fully understand the brain injury and also because the our son did receive the DEPTH of support needed from the spouses family. Brain Injury requires the support usually of a team of dedicated carers or family members. When that support is taken away by a marriage where the spouse doesn't fully understand the brain INJURY OF THEIR SPOUSE and how the support team will NEED to CONTINUE their SUPPORT often intruding into the privacy of their marriage then it will and does fail. The Brain Injured adult will fail miserably without support. If the brain injured adult moves interstate with the new partner or spouse that will spell certain disaster too. REALISTICALLY brain injured adults cannot sustain.a marriage relationship and all of the responsibilities it entails. They may love the idea of being married with children and even intensely love their partners and children but it will inevitably fail because the brain injured persons cannot meet what is required in a marriage situation without a huge amount of support. The problem is you have to LIVE with brain injury to understand it. And usually the brain injured persons looks quite normal on the outside so the future or present partner really doesn't get it or understand the situation properly. It can really.make their life extremely difficult too for the future as they then have to navigate life as single parents after the relationship or marriage fails. They usually have recriminations too against the family such as "Why didn't you tell me or explain better this persons brain injury?". This is further complicated by the brain injured person being in DENIAL and refusing to let the future partner KNOW what they have i.e. a brain injury. The Brain Injured person is trying to and wants to be NORMAL. They often think if they do normal things like start a relationship or get married they CAN be normal. But their brain injury can't sustain something as complicated and demanding as marriage etc. It Is a very sad fact of brain injury and a great grief to brain injured persons and their families that they may never marry or their marriages may fail. I'm not saying don't try and make it work. Just be aware that one of the big things with brain injury is MAKING and then SUSTAINING relationships. It's often exhausting, overwhelming, complicated and painful for the brain injured persons to try and cope in a normal relationship such as a marriage ect

[@rosemerrynmcmillan1611]

We see our son getting LESS competent as time goes on (17 yrs on from an extremely severe TBI sustained at 17 yrs old in a motorbike accident) Apparently this is what happens often with brain injury. It gets worse as the brain injured persons get older and they are more susceptible to dementia and Alzheimer's. My opinion is drugs and alcohol should most definitely NOT be consumed by a brain injured person. It affects them twice as badly as the brain can't operate normally very well let alone with drugs or alcohol. I've seen it happen and it can be quite dangerous for the brain injured persons. Unfortunately the brain injured person will need oversight and safe people and places to hang out with. This will involve usually not hanging with old friends anymore who use alcohol and drugs and making new friends with people who don't use these drugs. The Brain I hired person might need to be prescribed impulse control medication or other medication. Young brain injured adults often have failed relationships or marriage. Often this is because the partner did not fully understand the brain injury and also because the brain injured partner did receive the DEPTH of support needed from the spouses family or his own. Brain Injury requires the support usually of a team of dedicated carers or family members. When that support is taken away by a marriage where the spouse doesn't fully understand the brain INJURY OF THEIR SPOUSE and how the support team will NEED to CONTINUE their SUPPORT often intruding into the privacy of their marriage then it will and does fail. The Brain Injured adult will fail miserably without support. If the brain injured adult moves interstate with the new partner or spouse that will spell certain disaster too. REALISTICALLY brain injured adults cannot sustain a marriage relationship and all of the responsibilities it entails. They may love the idea of being married with children and even intensely love their partners and children but it will inevitably fail because the brain injured person cannot meet what is required in a marriage situation without a huge amount of support. The problem is you have to LIVE with brain injury to understand it. And usually the brain injured person looks quite normal on the outside so the future or present partner really doesn't get it or understand the situation properly. It can really.make their life extremely difficult too for the future as the then separated spouse will often have to navigate life as a single parent after the relationship or marriage fails. The separated or divorced spouses usually have recriminations too against the family such as "Why didn't you tell me or explain better this persons brain injury?". This is further complicated by the brain injured person being in DENIAL and refusing to let the future partner KNOW what they have i.e. a brain injury. The Brain Injured person is trying to and wants to be NORMAL. They often think if they do normal things like start a relationship or get married they CAN be normal. But their brain injury can't sustain something as complicated and demanding as marriage etc. It Is a very sad fact of brain injury and a great grief to brain injured persons and their families that they may never marry or their marriages may fail. I'm not saying don't try and make it work. Just be aware that one of the big things with brain injury is MAKING and then SUSTAINING relationships. It's often exhausting, overwhelming, complicated and painful for the brain injured persons to try and cope in a normal relationship such as a marriage ect

[@playnejayne5550]

At this point, there is no support team. Just me. For a while immediately after the accident, there were people coming around all the time, therapy appointments, and so on. Tomorrow, we have a visit with the primary care doctor. My son will not want me to go with him, even though he is both in denial and has a bad memory. His girlfriend does not wish to have a serious talk with me unless he is there. Under normal circumstances, this would be a good thing. Ah well, I should go out and weed the garden. God is good and the tomatoes are ripe.

[@armandoaguilera2969]

You’re right, its extremely difficult to navigate thru life with tbi.

[@Susan-jn3yb]

Hello. How is he today? My heart hurts for you. I also have a Man - child. You definitely explain things very true- correctly and transparent. I know some of these things that you speak of.

[@vangimunchinsky1348]

I totally agree with everything you have described - my brain-injured nephew has suffered greatly from the negative effects of prescription drugs, and at age 40 deeply grieves his inability to support himself, let alone a wife and family - so much depression and self-loathing and oh, the gut-wrenching LONELINESS!