Brain Injury and Grief: Fact or Fiction

Janelle Breese Biagioni, RPC, Brain Injury Journey magazine
Brain Injury and Grief: Fact or Fiction

Grief is most often associated with death. While it is true that the death of a loved one (family member, friend, or pet) and, at times, the death of people we do not know (Sandy Hook Elementary shooting) will catapult us into the grief journey, death is not the only cause of grief. Although death is an important reason, there are other losses in life that we also need to grieve. These too are life-changing and will solicit the same grief responses as death does.

Society has slowly recognized significant life events as also being a source of sorrow and cause for grief. Events such as divorce and separation, transitional losses (moving to a new community or job loss), and developmental losses (children leaving home) are also ways in which we experience feelings of sadness, depression, hopelessness, and sorrow. To heal from these experiences and to move forward in life, we must grieve and mourn.

Furthermore, with the advancement of technology and medicine, people tend to live longer; however, many are compromised with chronic illness, such as diabetes or heart disease. While these are often manageable, it is not unusual to experience some level of loss as a result. It could be that people are no longer able to work in the same capacity, or they may have a substantial change in lifestyle, or the way they view themselves in society becomes grossly skewed, and therefore they begin to grieve. Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury. This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present. Sadly, I think society as a whole is only beginning to understand how profound this type of grief is.

The Complexities of Grief

In 1969, Dr. Elisabeth Kübler-Ross published a revolutionary model of grief in her book On Death and Dying. These five stages, commonly referred to as DABDA, are denial, anger, bargaining, depression, and acceptance. The flaw was not in her model. It was in society’s interpretation of it. It was believed that people had to go through all five stages and in the order given, or they were grieving wrong. Let me tell you: the only wrong way to grieve is to not grieve. Prior to Kübler-Ross’ death in 2004, she explained the model was not meant to be a list of “absolutes” that one had to do in any specific order to heal, but that it was a list of potential grief responses a person may experience. I have come to learn, both personally and professionally, that the list of responses is far more expansive. Dr. Alan Wolfelt’s Companioning Model identifies potential grief responses as shock, numbness, disbelief, disorganization, confusion, searching, anxiety, panic, fear, physiological changes, explosive emotions, guilt and regret, loss, emptiness, sadness, relief and release, and finally, reconciliation and healing.

The grief journey is complex. It is a process and not an event. It is not time specific, nor is it orderly and predictable. Moreover, the process is fraught with “crazymaking” stuff. It is a lonely path. It feels like nobody understands what you are going through. That is true. No one can truly understand how another person feels; however, those who have walked this journey never forget what they felt or experienced. They can be a tremendous source of strength and courage to you.

I mentioned earlier that the only wrong way to grieve is not to grieve. In addition to that, it is important to remember that grieving is not the end to the means. It is only the beginning! I say this because grieving is about how we feel on the inside due to what has happened in our life. If one is allowed to truly feel — to grieve, this will lead to mourning. Mourning is the process of taking those feelings from the inside to the outside. It is giving expression to how we feel. This may be done in a variety of ways, such as funerals, talking, writing, art, and music. Wolfelt describes it like this: “Mourning is grief gone public.” The only way to move through or reconcile and mourn feelings of grief is to find a safe and comfortable way to express those feelings. This applies to all types of loss, including those associated with brain injury.

Understanding the grief journey and its connection with brain injury is important for survivors, family members, friends, and professionals alike. It’s important because if you do not acknowledge the losses that arise from having a brain injury, it will be difficult — if not impossible — to move forward in life. This is true for people who are living with the outcome of a brain injury, and it is true for those in relationship with them, including spouse, children, family, and friends. And it is especially true for the professionals involved because it is our responsibility to help facilitate the process of grieving and mourning for these individuals and their families. As stated, the process is chaotic. Add to it that the loss is the “death-like” experience of a person no longer resembling who he or she was prior to being injured, and the crazy-making is exacerbated.

Interference with Grief After Brain Injury

In my work I have discovered several reasons that interfere with the grief journey following a brain injury. They are:

1. Society’s incomplete list of loss and an unrealistic timeline to grieve and mourn.

Society accepts the need to grieve and publicly mourn the physical death of a loved one, but there is little understanding of the need to grieve the “death of a personality” when the person is alive. The person may have physical and/or cognitive limitations; however, those individuals and their family living with such profound change are often left reeling in unfair comments like, “It could have been worse.”

There is no timeline to grieve and mourn. Unfortunately, society operates on the thought that people need only “three days bereavement leave” and/or that in a few months everything and everyone will be back to normal. It doesn’t work that way for both physical and non-physical deaths. Remember this: It isn’t time that heals all, but rather what we do with the time that heals us.

2. There are layers and layers of loss experienced by survivors of brain injury and by each person connected to them.

The layers of loss following a brain injury and the uniqueness in the realm of grieving are overwhelming for many. To adequately grieve these layers of loss, it requires those involved to explore and determine the primary and secondary losses of the brain injury and how this impacts them. This applies to both the survivor and to their loved ones. Once the layers are identified, then people can begin to work through their feelings.

Reflect on the life losses that have you have experienced, including brain injury. Do you feel that you were able to fully acknowledge the grief that resulted from your loss? Do you feel that others understood or supported you in grieving (feeling) and mourning (giving expression to those feelings) following loss?

Loss associated with brain injury could be physical and/or cognitive, but there may also be additional losses in relationships, lifestyle, employment, and in the person’s sense of self. Each loss requires reflection, expression, and acknowledgment before healing and acceptance of a new life can take place.

Posted on BrainLine March 7, 2013.

Janelle Breese Biagioni, RPC, is an author, speaker, and counselor with expertise in grief, loss, life transitions, and brain injury. She resides with her family in Victoria, BC. She is the author of A Change of Mind: One Family’s Journey through Brain Injury and the upcoming book, Life Losses: Healing for a Broken Heart. Visit her website at www.lifelosses.com and follow her blog at www.janellebreese.blogspot.com. She can be contacted at Janelle@lifelosses.com.


Used with permission from Brain Injury Journey magazine, issue #1, Lash & Associates Publishing/Training, Inc.

Comments (25)

We’re going on thirty one years post head injury for my husband. Our kids were babies then and now they have babies. The survival rate for traumatic brain injury has increased with technological advances in acute care, and with that a greater awareness.This being said, there is still a definite lack of understanding in regards to the many facets of grief. I can remember the day my daughter came home and cried as she told me her teacher had commented to the class how our story was like a fairy tale...her daddy had come home and we were living happily ever after. The world outside our door didn’t see the moment by moment challenges brought on by brain damage from the accident. They thought because he was finally walking and talking all was well. It made it impossible to express griefThe fact that he was living with us and indeed, he was alive, made me feel guilty for grieving...shouldn’t I be grateful he was still here? Yet he wasn’t the same.The man I married was gone. Oh, he still looked a lot like before, but so much of who he had been was gone. I had to learn to love this new man. It has been a journey and every day we are affected by his brain injury. We keep things very simple and structured for my husband and within those parameters he functions quite well. God has blessed us by providing another family who have been on the same journey. We were able to cry together, laugh at times over the ridiculousness of our situations and pray for each other daily. We tried not to complain to each other but we did grieve together as only someone who had lived through it could understand. Our greatest comfort comes from knowing our Heavenly Father is taking care of us and He understands the cries of our hearts. We don’t look too far ahead but know we are given strength for the moment, every day.

I understand exactly what you mean. My husband also had a TBI 9 years ago. My children were 18 months and 6 months. He body survived, but his personality was extremely altered. The outside world does not see it. I still go through grief cycles, especially when it gets close to his accident. I have also heard that my situation is a fairytale / miracle. It is so hard being married to a stranger.

First, I want to thank Brainline.org for all of the help and understanding. I continually read on TBI from them and all of the loved ones with it or dealing with a loved one with it.

I would like to understand what it is my adult children think and feel. They tend to shove the subject/problem under the rug. I believe they think I am okay because I am able to do so much more than was expected after my car accident. I arrived at the hospital and was pronounced DOA. My scale (whatever the scale is that determines how bad the injury is I think) well, it was a 3 and the doctors told them it would do no good to operate because I would just be a vegetable and they would have to end up removing me from life support anyway... Now though through the past 11 1/2 yrs I seem to get by pretty well BUT I can tell you that I am certainly not the same person I was. I have really tough times when I have to be around anyone other than my children who are all grown ups now and have families. They are the ones that have had to take care of so many issues and problems I have had since the accident so I know they must feel something is not right and doesn't seem to get better lately - seems only to be worse in so many ways. I could contribute that to not even wanting to walk out of my door but at same time i miss having family and friends around or over but again i honestly get anxiety so extremely bad that I just don't try to get together with anyone and besides that I have had 4 major operations on my spine and I walk over almost as a half of a person and I just cannot get used to going around others like that .... it is my attitude but I cannot seem to find a silver lining in it .... I don't want to be as I am - so much fear, anxiety, PTSD, struggle with how I talk (rather rudely I am told ) to others sometimes and especially my children who have been my entire being since that wreck .... trust me, we have had some rough times over things I have said or done and they don't get it when I try telling them... I think because I do pretty well - really well I would say - I believe they expect more out of me sometimes... I am not the same at all - my entire self has been altered in a negative way ... I know i do try to think more positive but it seems not to be that way to others ... I am always being told I have no empathy and most times i honestly don't feel things the way I once always did but I do feel for others and care very much ... I cry a lot and sometimes it just takes a past thought to get me all torn up inside and cannot control the crying ... I feel very alone and lonesome and I have to talk things out loud to myself a lot to try to figure some things out - most things really - I don't know what all  or how to explain what i feel like and how I am so different and how life is like only existing to me and nothing more and that is sad to say - I don't like saying that it is negative but it is how i feel most always .... I could go on & on about so many many ways i have changed but i honestly cannot express this correctly and I need to one day sit down with my children and try to get them to know what and how i am feeling but i still cannot get it out... it's locked all up tight inside of me for some reason ....  and it is awful that I am fearful to walk out of my door to go outside - that is so not me... I was a very friendly person and had many friends - or so I thought - funny how this lets you know just who really thinks of you and who doesn't... I can't say that there are very many at all if any that actually reach out to me for anything... I miss my life and yet this one is settling just fine with me because I am getting used to it and just tired always and sort of give up on things changing... I must do something to change myself as best as I am able to .... thanks for listening to me venting and sorry for it and wow, I really have so much I can't get out that I feel I need to but it seems impossible .... but thanks much again, Sandra

Hi, Sandra. You have been through a lot and I applaud you for being strong. You are right about finding out who your friends are and who cares and loves you during difficult times. I lost my husband to TBI on 9/14/18. The accident happened on 8/2418 which happened to be his birthday. I hope that you do get to sit with your family to tell them how you feel. Pray and talk to God. It really helps. Gob bless you. -Jacob

Hi Sandra, thank you for sharing some of your story as it connects to you and your family. My daughter is not doing well and will not speak to many family members whom she has alienated over the past few years. I know she feels much of what you feel, but she will not talk to myself or some other family members; she has changed. Your post has helped me see and understand a little more. What a journey for all concerned. (((HUGS)))

I couldnt have said it better myself. Thank you.....

I am a survivor of a TBI two years ago and am still struggling. My family (grown son and daughter) are great to me and help me through my struggles. I can't say the same about the neurosurgeons I had in the hospital who performed the surgery and care afterwards. I lost at least one week or so of my life, as I have no memory of it, and the neurosurgeons had no understanding or patience with me. I kept asking to go home, and they couldn't understand that. They were so upset with me that I never saw them again after they came to my bedside to ask me why I was so insistent on going home. I couldn't tell them why I had behaved that way, but they should have known I was being governed by my brain injury. My last exam, after being discharged, was with the head doctor of the dept. He talked about it, too, and seemed to not care about my feelings. It's something that concerns and bothers me to this day.

My grandfather had a stroke leaving him unable to speak to us. His personality is the same though and it’s clear he understands us still. He never went back home, he will never walk again or string more than 2 words together. He won’t participate in life with us again. It is so devastating. He was in hospital for 6 months with the stroke and I used to visit him every time I went to work which was a 5 minute walk from his bedside. I’d clean his teeth and shave his face for him, things he used to be able to do himself. It made him happy but it broke my heart. Still heartbroken. He’s with us but it doesn’t feel like it. Having him with us still is nice but it’s also hard because he suffers every day and it’s hard to believe it happened.

Finally, someone who understands the loss and grieving a wife feels when her husband suffers a tramatic brain injury. In our case, my husband had cardiac bypass surgery in 2012. At that time, he suffered 2 frontal lobe strokes-one on the left and one on the right. So doctors saved his heart but I lost the person I knew. He went into surgery as one person and came out another. The stroke affected what they call his Executive Function, logic, reasoning, judgment, personality, initiation, motivation, impulse control, short term memory, and ability to carry on a conversation. Thankfully he still has movement of legs and arms. I've been through all the grieving stages mentioned in this article. During all this, the comment that angers me the most is when someone says "it could be worse" or "at least he's alive." I KNOW THAT! But the grieving is still there. Only those who have been through the "loss" of someone through a traumatic brain injury or dementia truly understand. I even had a cousin say, "Well you should be over it, it's been 4 years! (I also lost my mother who had dementia 2 months prior to my husband's heart surgery. I grieved the loss of the mother I knew long before she passed.) I've now accepted what is due to my love for my husband, my own strength, research, online forums, counseling, and a caregiver support group. It does take a village. Thank you so much for your article.

Thank you for contributing to this, it resonates enormously with me. My husband was assaulted 4 year's ago when he was hit over the head from behind, for a cellphone and a wallet. Life has not been the same since. He is not the same and we are not the same. He has a front left lobe injury which has affected his executive functioning and he struggles with things that were always easy. I don't feel that anyone truly understands the impact this has had on his and our lives, I feel like I lost the husband I knew and my children have lost the father they adored - the sparkle has gone out of his eyes and his wonderful sense of humour no longer exists. Although we are 4 years down the line it hasn't got easier and at times I'm not sure I can do this. Which I feel really bad about. Wondering if you ever feel that way.

This is one of the most powerful articles I've read on grief and brain injury. Thanks for sharing it Brainline. You are the very best at helping others understand us, and us understand ourselves.

Our baby boy at 3 years old when he became ill and got encephalitis. We don't know how or why but 5 months of being in a hospital last year they told us he sustained a traumatic brain injury. He will never get better, walk, talk, or eat again. We slowly saw him disappear. As a mother I cried so much and I cannot explain the anger I felt. At god, at myself, at family, even sometimes I felt angry like "come on son." As if he could change it or will it to be different. I believed the doctors when they said he didn't have much time... I broke. We went through so much with our son and watched him suffer but I feel like I can not and will not bear to lose him. To lose him would mean my world is over. I'm glad he's still here. 2 years later. I stopped questioning why and just love him everyday. I know being positive can only last for so long for the journey does get weary. The care he needs exhausts me and we cannot find good help that he needs like from us as his parents. I often refused to remember my baby running playing and talking to me. I'm just grateful at least I have those memories. For me it was just adjusting to this new person. And to look past all those expectations I had for him. I love him and some days it feels like it's not enough but oh well, there's always a new day to try and pick up the love.

It has been 8 years since my son's accident leaving him with a severe TBI. He is in a nursing home for life. Every day is a struggle to keep my chin up and be positive for his sake. But inside I am destroyed. He has died, but he has not died. It is this limbo that keeps fueling the sorrow. My heart goes out to all families in this position. Only you understand. After so much time, the friends and family members who were by your side are done with it all. But it is my child. I will never be done with it. I pray every day that he dies before I do because no one will care about him like I do. The nursing home sees to his needs but no one there cares. It's not their child. Children expect to see their parents in a nursing home, not the other way around. It is beyond sad. It is beyond grief. As a mother, it's the worst pain to be put through day after day after day. Each day brings sadness and grief. 

I'm so sorry to hear of what happened to your son. I came upon this page because my brother, in his 40's, suffered a massive stroke a few months ago. He has had a number of setbacks, and it is heartwrenching to see. As you said, "He has died, but he has not died." It is so hard to know what to do with this kind of pain and grief. There is no "closure" to it. My parents are in their mid-70's and it breaks my heart to see them caring for him every day in the hospital, trimming his nails and cutting his hair...knowing that he will never be able to return the favor for them. It's so unfair. His young son will never have the privilege again of playing catch and hockey with his dad. Yet he is still physically present, so somehow you feel that you need to be positive--that you're not allowed to "grieve." My heart goes out to you.

Our adult, married daughter suffered a cardiac arrest which resulted in an anoxic brain injury.. The worst kind. She is the mother of three girls, aged 19, 14 & 8, and was off and with her spouse.  But she had graduated with her RN the evening before making this all the more difficult.  She is profoundly brain damaged, globally, every part of her brain.  I went to court and got legal guardianship due to the uncertain nature of her marriage and unreliability of her spouse.  But it has been devastating to myself, her dad and her 3 sisters as she is incontinent, cannot walk and appears to be as good as she will get basically.  I will be bringing her to my home soon with additional outside care and she will never go to her spouse, his expectations are unreasonable that she will be a mate and or mom again.  My grief is also profound, I have lost my child but cannot bury her.  I also know that a day will come when I will have to ask for a third party guardian and placement for her as I will no longer be able to care for her.  The well intentioned ppl who assigned miracle recovery to God wear me out, it is not going to happen.  For her injury those first 5 mos were our measuring stick.  I cry daily.

We have just passed the 10 year point since our daughter's car accident and several of the comments here describe our experience and feelings exactly.  I have never failed to be glad that she survived the accident, albeit with cognitive and physical disabilities.  I don't know what she would have been doing now but her younger sister and brother now have their own homes and one has a baby and the other has a baby on the way, so that is probably what she would be doing alongside a career I can no longer imagine.  I always feel so guilty thinking of my own loss when she has lost so much - she was 22 when she had her accident.  But here, amongst those who know I feel I can admit that I grieve for - the loss of her company, her old voice, easy visits where I didn't become a carer, some more grandchildren that I now won't have, sharing craft activities, meeting her partners - it just goes on and on.  I also dread losing her before I die and her managing without us if she doesn't die first.  I am sick of the 'positive thinkers' who think all I have to do is see the 'half full glass'!!  Let's just acknowledge the pain and then deal with it, like this article suggests.

Well that's off my chest - sorry.

As a partner of a person with a tbi I "coped" with everything for almost a year afterwards, including carrying on working, until my suppressed feelings bubbled to the surface and necessitated a life style change which included giving time to grief and attention to mourning...thank you for putting into words what I went through...I had a very supportive friend who supported me through this...but having to work for income was another matter...I doubt many enployers "understand"
after experiencng brain injury and loss of my husband, return home to family. Most don't recognise me. wanting only for the old me.i gnore me, abandon me, this brings loss to another level. out of 5 children, 2 communicate with me. The rest, I let go of, do not associate with. i have made a new life for myself, am content with it. After a couple of years my emotions ran the gamut, of loss of self. los of husband, fnding my way around in new community, finding ose who do realise and care. Anger with the rest. Shock beyond belief each episode, Accepting what is,, m reality, moving forward, in a new place. unpacking and opening each box I find some surprises, it is like Christmas for me. To organise and find placement for each item, being the chalenge. Getting rid of items that no longer fit my life or are needed, puting into place what is needed. A slow process. Doing so as time and energy allow. One has offered to unpack for me, yet I feel the need, it s i who needs to know where any item is. my new life.

Good on you and thank you for sharing.

thank you for validating the sadness and complexity of this issue. my daughter survived yet she is here with me living with a severe tbi. so many improvements after 3 1/2yrs. and being only 22 keeps my faith alive. its a rollercoaster....
Thank you for writing this. It is important to make others aware of the profound losses that brain injured individuals experience.
If you can imagine that your son might have had changes in his life that you would have had to deal with and accept this might ease some of your pain. My daughter had a TBI in 1992. Today we are still dealing with the issues as if the accident was yesterday. One thing that I keep reminding myself is that she is here, maybe not as I would have liked, but still alive. We have to accept the change and embrace the life. I too feel as though I brought home a stranger 20 years ago but at least I brought her home and can embrace the connection when it is there. I am sorry this happen to you but hope you find the strength to accept the change and embrace what good minutes you might have with your child. Good luck.
I fully understand this. I feel I am so alone in all this. Yet I do have my family around I feel immense pain. I still feel my heart is tearing apart. I sit and howl many times and work myself up in a right state. I miss my son so much but see him every week. This is what people don't understand. They don't understand I lost my son and have someone who looks just like him who I have grown to love with all my heart but want my son back. This has been going on for 6 years now...will I be like this the rest of my life?
How are primary and secondary losses defined in the layers of grief?
Our grief was not even mentioned until quite some time after our son sustained a catastrophic brain injury and the person who recognized it was a new colleague - certainly not any of the myriad of professionals we were dealing with on our journey. She immediately expressed her compassion on the loss of our son as we had known him and our need to learn who had been given now. Throughout the 20+ years he lived after his injury we were continuously having to accept the loss of his/our hopes and dreams and to work through the grief presented by each loss.