Learning About Ambiguous Loss

Rosemary Rawlins, Caregiver
January 14, 2013
Learning About Ambiguous Loss

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Immediately after Hugh woke up from his coma, I felt a deep sense of loss. Yes, my husband was alive but he didn’t act or sound like my husband at all. The vacant look in his eyes changed his face in a frightening way. Everyone celebrated that he survived, and so did I, but I felt conflicted and didn’t know why. As the weeks dragged on, Hugh continued to make slow progress. He attended rehab sessions to relearn the daily activities of living. His personality fluctuated between flat and agitated.

By week seven, I felt frantic inside. Did I lose him completely? Meeting with the manager of Medical Psychology at HealthSouth helped enormously. She told me that it was common for the spouse of someone with TBI to feel a deep sense of grief, as if that person had died. I later learned that the term for this feeling is “ambiguous loss.” Ambiguous loss occurs when someone we love is still with us, yet radically changed. Pauline Boss, an expert on ambiguous loss, explains this as a physical presence with a psychological absence. Ambiguous loss occurs frequently after a TBI or with Alzheimer’s disease, and it can be distressing for family members.

Here are three statements that hint at a sense of ambiguous loss:

“TBI is like having your house robbed. When you walk through the door, you know things are missing but it takes a long time to figure out what. And sometimes those things sneak up on you when you least expect it.”

— Wife of TBI survivor, Laura Cooper Kitchings

“After my dad was hurt, I lost my father and it felt like I lost my mother, too. Everyone said how lucky I was, but I didn’t feel lucky at all.”

— Daughter of TBI Survivor, Mary Rawlins

“The spouse has a harder time moving forward with life and is in a constant high alert pattern to look for something that is off. This is exhausting! We are always wondering: would he have said that or acted that way before? For the life of me, I can't remember.”

— Wife of TBI survivor, Marlene Phelps

Through counseling, both on my own, and with my husband after his TBI, I was able to cope with feelings of ambiguous loss. Here is some of the advice in counseling that helped me:

  • Meet each other where you are now.
  • Support each other.
  • Try new things together.
  • Don’t get stuck in the past.
  • Cherish old memories while striving to make new ones.
  • Look for qualities you love in each other every day.
  • Realize that you may have both changed from this traumatic family experience, that life always changes, but you can find peace in the present if you actively seek it out.

Ambiguous loss is important for people to acknowledge and understand. Knowing that these feelings are natural can be a relief to many family members, and sharing ways to come to terms with this loss is important for family members in the TBI community.

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Comments (23)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

Anonymous replied on

I am an identical twin and my twin sister has a right frontal lobe TBI. I felt loss but
no one understood what I lost. Everyone was so happy that she has done so well,
I too am so pleased. I miss her though...a deep sense of loss. I am now sort of
her mom, but she sees me as her twin sister. It has been 12 years and I still feel
I lost her.

Anonymous replied on

I'm the one with TBI. This article helps me appreciate my husband even more, & gives me insight into how I can help him. Thanks!

Anonymous replied on

Well said. I like to also think that change is never good or bad, it is the perspective you choose to take on it. Focus on the positive and the negative dissolves, and learn to LAUGH at everything and anything, there is no inappropriate time for it! Very helpful post, thank you.

Anonymous replied on

This is great advice. I am currently caring for my aging mother, and while she is still the mother I grew up with, she is becoming less mentally agile, and her memory is starting to go. I worry often about how I will deal with her when she starts to feel like someone else.

Anonymous replied on

I too am a TBI survivor. Ten years ago I fell 14 feet to concrete on my head. I was working as a stuntman on a Disney TV show. My wife says that I never came home from work that day. Well, I did come home but I was never the same. In many ways, life is better for me. My wife and kids may not say the same.

Anonymous replied on

I have come to accept the "new" me after my TBI. My family especially my oldest son hates who I have become. I can't be who I was. I try to improve my "issues" where I can but often I hear this crazy person I never imagined is actually me. :(

Anonymous replied on

My son is a sTBI survivor. This loss was the hardest to overcome. I look at it that God blessed me with the son I knew for twenty years and the son I have now. Both are precious. There are still after eight years though little peeks of the past one also. Don't know if you ever stop looking for the other one. Just not too often.

Mariellen Jacobs replied on

This really hit home. My son's TBI/stroke happened when he had just turned 20. I am so grateful for the amazing miracle of having my "new" son but sometimes still grieve what he/we lost. It's the "grief vs. gratitude" dance that we all learn over time. Like you, I still see glimpses of the "pre-accident" son but more and more I have learned to just love and cherish the wonderful son I have now, challenges, deficits, and all.

Anonymous replied on

My sons accident was over 2years ago now and everyday I feel this loss. I no longer have the son I knew living with me, and I try so hard to embrace his new self! Yes I am so blessed that he is with us today and terribly thankful.

Anonymous replied on

My husband suffered a TBI 2.5 years ago. The accuracy of this article in relation to how I feel is amazing. The advice from Marlene on what she learned from counseling is so helpful to me at this point in our journey. Thank you for sharing.

Anonymous replied on

My kids don't accept my dear friend who i have known for years and care for. Behind his back they call him names and won't visit me because they don't like him due to him being different to them makes me cross

Anonymous replied on

When our 17 rear old son had his car accident, our prayer was for him to survive. Then the prayer changed to "please let him wake up," then, "please give him back his abilities and personality." We thought he would return to himself in a few months. Boy, were we wrong. The grief continued for years as we watched his constant struggles and mishaps. Our bright, beautiful son was reduced to constant impulsivity, mood swings and brushes with the law. Finally, ten years post TBI, we can finally say he has achieved and been granted the life we hoped and prayed for. Yes, we were unbelievably grateful he survived, but the loss was huge.

Anonymous replied on

I never heard the phrase "ambiguous loss" until today. I have struggled with these feelings everyday since 2-2-2011. Thank you for sharing these very real and very personal feelings. This has impacted me profoundly.

Anonymous replied on

This really described my feelings to a "T". I remember saying if you just end him back .I don't care how, just send him back.. He is still on the way back. That was 11 1/2 months ago.. He is not out of the rehabilitation center yet....I know there is a long road ahead.

Anonymous replied on

Had feelings of ambiguous loss since 1989 following my husband's encephalitis. No counselling offered then. Bad, hard time for both of us. Slow improvement but we aren't the same couple. Comments make me feel less guilty. Thank you for sharing.

Anonymous replied on

I have so much TBI in my life. I can't believe what I have had to learn about TBI!. My husband has a combat TBI, My daughter has a TBI from a car accident, My mother had alzheimers and I also care for my sister who survived a double bleed brain anuerism which caused a TBI. I appreciate this article. I struggle with this as well.

Anonymous replied on

AMBIGUOUS LOSS I never knew it had a name. the ones around the TBI person (me) celebrating that her life was saved. The TBI person wondering why they're celebrating because NOTHING IS THE SAME- NOR WILL IT EVER BE!!!

I discussed this in my book- on Amazon- "I Didn't Die Because God Wasn't Finished With Me, YET!!!

Sometimes I wonder why God did save me but I know I have purpose.

Anonymous replied on

Eight years after my son's TBI, I descibe it having 40% of the person I knew as my son and 60% of someone new. I miss the 100% of the son I remember, but have learned to accept that he is different now too and SI thankful he survived but see and feel his struggles he deals with now. I am told by others, and myself feel that he is lucky to be alive, but he does not feel the same way. Very hard, as his Mother to hear him say, he wished he didnt survive.

Anonymous replied on

My partner moved out of his coma then into a permanent vegetative state he has been this way now for 19months I know all about this ambiguous loss I have been grieving for months now. He is alive and I love him and I am grateful but his quality of life is very poor. I wish he'd woken from his coma and even if he was different would be better than this. We have a Facebook support page called 'Support Andrew Ruffell AKA Smiley and Deanna Groome'.

Anonymous replied on

Those two words were such a relief to me early in our 10 year journey with brain injury. During the really difficult years, I grew to dread the rare moments when my husband came out of the fog and gave a glimpse of his old self. Then he would vanish again into flat face and agitation/anger and I would sink into grief once again (while being as cheerful, positive and brave as I could possibly be.) As the better moments increased, I slowly worked through my grief over all that was forever lost and began to see and love my husband as a new man and a very strong, courageous man who reminds me of a lot now of the man I fell in love with 50 years ago. That was then. This is now. God helps us both live in the now. We are still a team. We both face ambiguous loss and together we wrestle with life's challenges and somehow find purpose and joy in the midst of and often as a direct result of these challenges. Sharron Witters

Anonymous replied on

Our Carley had her auto accident TBI 01-05-2009, it has been and still is a constant struggle. Her mom walked out and she has been with us for 5 years. She never got the initial therapy she needed and it is a constant battle with her. We understand that she will never be the same, but does the ever changing behavior, personality changes, and deep dives ever get easier? She is a totally different person almost daily. Thank you all for sharing. I wonder if you might could tell me what type of counseling you have had. And if there is an online support group for caregivers.

Anonymous replied on

As the survivor, almost 3 years later, this has been the most blessed nightmare I could ever imagine. As grateful as I am to be alive, when I look at my husband and families faces I see their pain as they try to decipher moment to moment if I am "me" or not that they want to talk to. I feel hollow in a sense and guilty. I try to push forward everyday and some days I make way and that is great but then some days I literally am stuck going no where. I am 39, I should be able to go to the store alone, make dinner, clean more than a room at a time; be the mom my kids adored and the wife my husbjavascript:void(0);and once loved but reality is I fall short more days than I don't. It's incredibly hard to live in this cycle of constant insanity. Peace used to be my middle name-now I only seem to find it when I am alone or with those who truly accept me. Not worrying about hurting or letting my family down again today. Life is so surreal when I am trapped in this shell. I rely on the power of prayer and thank God for his grace to get me thru everyday. I just wish my husband would see I am inside this broken shell and either accept me or let me go to live life not in torment from his unwillingness to see me alive but to reside in peace with myself. It's changes daily and it sucks especially when I am facing another craniotomy. This one had a three week turn around- as my son says it's been the longest three weeks of his life but luckily he accepts me For who I am and is just glad I am still around to be a mom for him. I have had multiple mini strokes and blank out periodically. My body is fighting a foreign body used for my surgery that causes a cascade of effects including my short term memory and it must be retrieved. However, this time around its like knowing your walking onto the shooting range with no protection on and you have no choice but to do it. Will it be better the next time around or will I be worse when I wake up? Will they continue to be by my side even though the last one has left them so fragile and scared? Or will they run at the first sign of me not being me? It's a challenge 24/7 that I am blessed to take on just wish I didn't loose everyone in the process?! I thought love was unconditional? Since I woke up there's been nothing but conditions for me to be loved and he changes them on me daily not recognizing how much that hurts and confines me. I just want to be understood and see I am trying to understand as well. As long as I am breathing there's hope. God has a plan and we have another day to try and make it great! Please remember to live in the moment and when it's really trying-just stop and sigh while giving a long hug to your survivor. They too get frustrated and know you do as well even if they can't convey it the way they once did. Acceptance and love for who we all are today is the best way to start off everyday. Life happens to us all, be grateful during the storms as they will pass. See the beautiful soul that is in front of you for the heart that led you to them and know your not alone.

Nikki replied on

Thank you so much, up until now I couldn't find anything relating to what I've been experiencing after my husbands TBI. I kept saying that I felt like I was grieving, but he is still with me, and made close to a full recovery, so I was conflicted and didn't understand why I felt such a deep sense of loss. But he has changed in small ways and I feel different after almost losing him. There are plenty of support groups for spouses that lose their partners, but I've been unable to find anything for people that almost lost a partner. The stress following the initial hospitalization and recovery has been immense, and I feel so lonely. It's nice to have a term to understand what I'm going through.