Ambiguous Loss – The Sorrow that Won’t Go Away after a Brain Injury

Brain Injury Blog by Janet Cromer, RN, MA, LMHC

June 16, 2011

Ambiguous Loss- It’s the Sorrow that Doesn’t End

Ambiguous loss is also called “mobile mourning” and “chronic sorrow.” It can affect both the survivor and family member in deep and ongoing ways. Family caregivers may recognize it as that strange feeling that the person who survived the brain injury just is not the same person he/she was before. It’s confusing because you may be grateful that the person lived, but grieve for the person he was before. Ambiguous loss matters because it can make it hard for you to find hope or move on in this “new normal” life.

What does ambiguous mean? It means unresolved or without closure. Consider that when someone dies, our community usually gathers for a funeral or other rituals. Everyone participates to acknowledge the death and support the family. However, when a person lives through a moderate-severe brain injury, his personality, emotions, or behavior may change in ways that are very different. But there is no ritual for a community to rally around the grieving family. When the survivor “looks like nothing happened” on the outside, the situation gets even more confusing. The survivor may be present in the family physically, but absent psychologically because of emotional or cognitive changes. Perhaps he can’t perform his roles in the family as before. His memory may be impaired, so he doesn’t even remember the personal stories families cherish.

Ambiguous loss (AL) has a few features worth understanding:

  • The loss is always about relationships. It is an extremely stressful type of loss.
  • It is a normal response to a very traumatic situation. Feeling the loss doesn’t mean you’re not coping well or that you have mental health problems. It does mean you deserve to find help.
  • There is often uncertainty about whether the survivor will return to being his former self, or how long that might take. There are no guarantees or time frames.
  • The caregiver may have a range of conflicted feelings about this “newer” person, and her ability to love and care for him. She may feel angry and betrayed one day, grateful and engaged on another day. It’s all normal.
  • AL is not the same as depression. However, it can contribute to depression, anxiety, conflicts, illness, or explosive emotions if not tended to.
  • AL can go on for months or years, and lead to physical and emotional exhaustion.

We all know about the primary losses that happen with brain injury. That includes the brain functions and bodily impairments caused directly by the brain injury. However there are many secondary losses for both the survivor and caregiver. For the survivor, there might be changes in identity, relationships, roles, vocation, and finances. All huge and traumatic.

For the caregiver, the secondary losses may seem more subtle and harder for others to recognize. When my husband Alan had a severe anoxic brain injury, some of my losses included leaving a job I liked very much, giving up relationships with colleagues and clients, and limiting personal freedom since Alan could not be left alone. Most of all, we lost the mutuality that couples take for granted. Alan was rebuilding his sense of who he was, and he didn’t know anything about me beyond what I did to care for him. His ability to empathize and participate in our familiar roles was gone. He just was not the same Alan or same husband.

What can we do to live with ambiguous loss without becoming hopeless or sick? We can try to recognize, learn to cope, and move forward. There are many ways to approach this, so I’ll start with a few key points:

  1. Recognize what’s going on. Underneath that confusion is a long list of the losses, changes, and conflicted thoughts and feelings. Spend some time writing without censoring yourself. Talk to other family members about their observations. Talk to the survivor about what bothers him/her most. Naming a problem or loss does not make it worse. It can bring it into the light so healing can begin.
  2. Find a safe and supportive connection. Consider talking to an experienced therapist, counselor, or spiritual leader. Ask if they know about ambiguous loss in advance. You deserve help from someone who understands the issue. A good support group can lift the burden by talking to others with the same problem and learning how to make meaning and find hope.
  3. Make meaning of the situation. Over time, come to a shared understanding of what’s been lost for each family member. Also focus on what remains and can be built on. Take the time to mourn whenever you feel the need. It is not disloyal to mourn for someone while getting to know the person now present. Perhaps a spiritual practice or faith can offer solace or guidance.
  4. Get to know the survivor as the person he is now. You can gradually rebuild family roles, rituals, and rules to live by. I wrote about how we began in this post.
  5. Incorporate humor and fun whenever possible.
  6. Adopt “both/and” thinking. That means you become comfortable with the paradox instead of needing to think in “all or nothing” ways. I thought, “I’m worried and angry about Alan’s difficult memory problems, and I know the new strategies we’re practicing will help a lot.”
  7. Find hope and new options. The situation may not change completely, but you can choose new sources of hope and new things to hope for. Explore and appreciate all the options open to you to move in a new direction, one small step at a time.

Thank you for reading all the way through this very long article! I consider ambiguous loss to be one of the most important challenges survivors and families can face and master. There are several good resources for more information on this Lash and Associates website. I’ve also followed the work of Dr. Pauline Boss for many years. In future posts, I’ll go into the approaches in more detail.

20 responses to “Ambiguous Loss – The Sorrow that Won’t Go Away after a Brain Injury”

  1. Anomymous concerned friend says:

    I have a male friend whose child, Mary, had a brain injury when she was a teenager. Mary is now and adult and lives in a group home. The father spends a great deal of time with Mary. His ex-wife is very bitter and blames him for the injury. The mother wants to put their daughter on medication, because Mary has become a little obsessed lately with wanting more friends and a boyfriend. I think if the mother and group home become more involved and spend time with Mary and get her more involved with having relationships, then Mary will overcome the obsession of not having friends. I think she feels a sense of abandonment from the mother. She constantly sees that her older sibling gets to lead a great life of marriage and having a family of her own. I think the daughter with the TBI is feeling left out. I am told medication is not the best way to treat possible anxiety with someone who has a brain injury. What are your thoughts?

  2. Dear Karen,
    You are dealing with so many losses that I urge you to be sure to take the time and energy to care for yourself as compassion fatigue is another form of secondary traumatic stress and can affect caregivers physically, mentally and emotionally.

    It’s so much harder for others to understand the meaning of loss when the person is still alive and that is exactly why the term ambiguous loss has so much meaning for families and caregivers when facing a major disability or illness.

    Please remember to care for yourself.
    Marilyn Lash

  3. Karen says:

    Thank you for this explanation of ambiguous loss. I have never heard this expression before but I identify with it strongly. My situation is that 2 of my grown up children have been diagnosed with a serious multi-systemic genetic disorder, this is after years of taking them to Drs and Paeds. who often implied that they were making up or exaggerating their symptoms or that we were over anxious parents. They had problems with literacy and numeracy, subtle cognitive and major difficulties organizing themselves as well as their many physical problems. Now they have been diagnosed with a life limiting illness of childhood onset and recently their father, my husband had been diagnosed with the the adult onset form of it. This was masked by disability due to industrial account which
    resulted in some loss of mobility quite a long time ago. He has not lost intellect capacity in general but has impaired executive function, motivation and sleeps over 12 hours a day (this is a feature of the illness.)

    Sadness washes over me on times, especially when their older siblings roll their eyes and tell me that they are still exaggerating. I’ve had to educate myself on every aspect of this illness and become their advocate because most Drs have never encountered it and don’t know much about it and become advocate for all 3 of them. I am happy to do this but sometimes it is exhausting and frustrating.

    I do have a therapist who has been a huge support. Thank you for this insightful information that is very helpful and comforting to me.

  4. Karen says:

    Thank you for this. I was directed to this article by a friend /colleague of yours. My situation is slightly different in that 2 of my grown up children have been diagnosed with a serious multisystemic genetic disorder, this is after years of taking them to Drs and Paeds who often that they were making up or exaggerating their symptoms or that we were over anxious parents. They had lp problems with literacy and numeracy and subtle cognitive and major organisationalbkems as well as their many

  5. Janet Cromer says:

    Hello Kathryn,

    You are so right that spouses and children see the deepest changes after TBI. It’s not easy to explain that someone is truly “not the same person” when the measurable facts show improvement but the mutuality and predictability are gone. Seven months is relatively new, so hold on to hope for continued improvement ,combined with counseling and interpersonal skills training. Look for a support group or counseling with a therapist who understands all the psychological aspects of brain injury. Caregivers talk about ambiguous loss all the time. Sometimes it’s called chronic sorrow or mobile mourning. I wrote about my loneliness and ambiguous loss in my book, Professor Cromer Learns to Read: Couple’s New Life after Brain Injury. Janelle Breese Biagione has written many Lash blog posts and books about every aspect of loss and grief. I think you’ll find her work relevant to your situation. My best wishes to you and your family.
    Janet Cromer

  6. Kathryn says:

    On a related topic..I would love to read something exploring that lonely place for a spouse where the survivor of a very severe TBI has made what everyone says is a very good recovery. What neuropsych tests don’t measure are personality changes that only the immediate family experiences. Colleagues and friends and extended family get back the “old” person but spouse and children have someone so different. Some days can seem almost normal, and then a behavioral episode will bring the painful reality into crystal clarity.
    I’m still very much in that lonely place (we are 7 months post injury). Though I’m certain it must be a common thread, it would be so helpful to hear it from others who live or have lived it.

  7. Janet Cromer says:

    Dear Luci and Jenn,

    You are absolutely right that knowing the name of an emotion or experience is the beginning of understanding and living with a situation. Even if we can’t change the situation, we can learn ways to express the feelings, change routines, and move forward, even while carrying that sorrow. Dr. Pauline Boss first named ambiguous loss, and her website is http://www.ambiguousloss.com. Her new book on “Loving Someone Who Has Dementia” may hold some good suggestions for a family living with brain injury when the individual’s memory or personality have been seriously affected.

    And please share your stories!
    Janet

  8. Luci Merritt says:

    It has taken me a long time to find someone in this world that has been able to express my feelings.My story will be long and I cannot write about it at this time but i will when i am ready.
    Ambiguous loss. I now know the name of what I suffer from.
    God Bless you!

  9. Jenn says:

    I just want to say thank you for putting a name to this. I am surprised more people aren’t using this term. I have been seeing a psychologist for months and they have never used this term. Is it your own terminology or in text books?
    It may seem silly, but having a name to what your feeling means something. It helps to begin to identify and understand the feelings in order to deal with them.
    Even though my son is 95% recovered from an accident less than a year ago where he was in a coma and then induced into a deeper coma for over a week, the feelings, the change, the Ambiguous Loss is what my husband and I feel.

  10. Janet Cromer says:

    Dear Donna and Sarah,
    Thank you for your comments. So many survivors and caregivers do learn to go forward while feeling that cold trickle of chronic sorrow now and then. Please continue to share your suggestions with others. We learn so much from each other!

  11. Janet Cromer says:

    Dear Connie,

    First, please accept my sincere apologies for not reading your comment in a timely way. I offer my condolences on the loss of your husband, and I wonder how you are feeling now? After my husband Alan died in 2005(seven years after his brain injury), I had to go back and grieve for two husbands. That’s because when Alan suffered the cardiac arrest that led to his brain injury, I had to slam closed the door on our life as we knew it and dive into the post-brain injury life with my very changed husband. After Alan died, I finally had the time and emotional energy to go open that sealed door, and wail loudly about all we had lost. Then I grieved the loss of the Alan he had become, especially the strong and resilient parts. I only confided to a few friends that I would not miss the parts related to Alan’s psychiatric illness caused by the BI. Grieving was a grueling and all-consuming process, but essential for my resilience and new life. May your healing continue, and may the sweetness come back into life for you.

  12. Hi Janet,

    Thank you for your insight. That was a wonderful article.

    Though I never placed a name on it, “ambiguous loss” is exactly what many of us feel when a loved one suffers a traumatic brain injury. My husband suffered a TBI in January of 2005. We just celebrated 9 years of what we call his “rebirth” or his “extended life.” Though he is left with many physical disabilities, we are fortunate that his cognitive
    brain was spared.

    Gratefully he returned to his laboratory at Columbia University a year and a half after his injury where he continued his research in microbiology and directed the research of his graduate students and post docs, wrote an NIH grant, and published many scientific papers. Still he is not the same man I married and I miss our old life – we both do.
    Fortunately, we have built a new one together for which we are both grateful.

    When this happened I searched for books to help me through. There were not many. I’ve written a book about our journey and it is now is search of an agent and publishing home.

    You can read more about our story on my blog at
    donnaodonnellfigurski.wordpress.com. In the search box on the right, type in TBI or Traumatic Brain Injury. Several posts will surface.

    Thank you again for your article.

    Donna O’Donnell Figurski
    donnaodonnellfigurski.wordpress.com

  13. Sarah Grant says:

    Hi,

    This is wonderfully written. One of the most difficult things my husband and I walked through was regaining that self-love that was lost after his accident. Your article gives many helpful ideas… I love the “humor and fun” option. There were things we had to laugh about; the alternative would have been to cry. Thank for your advocacy relating to traumatic events.

    Knowledge is power!
    Sarah

  14. Connie Huddleson says:

    Janet, I just found your article. My husband suffered a massive stroke 3 1/2 years ago and never became himself again. I felt like I was responsible for caring for a stranger. No one seemed to understand the grief I felt and that I should be so happy he survived. There were many days I did not agree. Everyone accepted his changes…but did not want it to change me. How could it not?? I lost him 4 months ago and the overwhelming grief has been unbearable at times and I feel like I have started the grieving process all over again. I hear over and over what a wonderful man he was and I scold myself for thinking, “well he wasn’t always so great.” For so many, I have a legitimate reason to grieve. Such a life lesson and so hopeful and gratifying to read your words and think that I was not crazy for feeling the way I did and that there are others who understand. I would like to post this article on my forehead and say…Hey! read this..I am forever changed and will never be the same person again. Take away your critical eyes and allow me to grieve. Through the Grace of God, I will move forward. Thank you.

  15. Hi, Janet:

    I am a newcomer to your website and was just poking around a bit today when I came across this article. Thank you for writing it.

    In April of 2010, my 10 year old daughter was kicked in the head by a horse, sustaining a severe traumatic brain injury. We will be celebrating her 12th birthday next month and while she is recovering in many, many ways, she is definitely not the same child she was prior to her accident.

    This article articulates everything that I cannot seem to express to people. They simply insist that I should just be grateful that she is alive. I AM! I am thrilled to see her amazing spirit fight so hard to overcome this horrible hand we were dealt, but there is a real grief associated with this type of injury and you have summed it up so perfectly, especially the part that it never seems to go away. I fight with it every day, but don’t feel that it has gotten any better than it was a year ago. I’m beginning to learn to simply live with it.

    Thank you, again, for your educational article. I truly appreciate it.

  16. Lisa Salonich says:

    Dear Janet,

    Thank you so much for writing this article. This is the first time I have read something that identifies what my family and I have gone through and continue to go through since my husband contracted encephalitis in Jan. 2004. John was serving in Guantanamo Bay, Cuba with his national guard battalion when he got sick. I was at home with our three small children. John was a remarkable person, dad and husband before “E”. He is now like a child cognitively. The pain of losing who he was has not lessened for me in seven years, I doubt it ever will.

    Lisa Salonich

  17. Janet Cromer says:

    Hello Kathy,
    You and Colleen have gone through so many terrible losses. Your determination to do what you know is best for yourself, as well as Colleen, shows your strength and faith. It’s so important to admit we are grieving and take the time to find the next step forward. May the tools you learned with Dr. Boss help you live with your latest challenge. And may you feel better before too long. Thank you for writing.

  18. Kathy McCann says:

    My daughter Colleen suffered an anoxic brain injury at age 15 when she collapsed during high school physical ed class and did not receive CPR. She is now age 23 and functions at around age 10, has severe short term memory loss, had to learn to walk and talk again, lives in a group home nearby. I actually had several counseling sessions with Dr. Pauline Boss! She really helped me face the loss of Colleen while I accepted the “new” Colleen. But every day I still mourn. I find my strength through my love of Jesus Christ and knowing that I will see Colleen fully restored in heaven. My husband chose to deal with it through cocaine addiction and other women, so we are divorcing after 36 years of marriage. I am grieving the loss of the man he used to be, and I realize that his brain is no longer the same either. I am happy to have found your website.

  19. Janet Cromer says:

    Thank you Marilyn. As you know, when we live with loss the grieving is very real, yet we must find ways to move forward. Alan suffered many losses, yet woke up looking forward to something new and good in each day.

  20. Marilyn Lash says:

    This is a very helpful and insightful article – thank you so much. It’s so hard for family, friends and others to understand why families still grieve when they are living with and caring for the person. Janet, you have a wonderful way of helping others understand this concept of ambiguous loss by describing your relationship with your husband and what this has meant for you.

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