FASD: Grief and Loss for Caregivers

I’ve been thinking about grief and loss for awhile now. We know many caregivers for individuals with FASD experience grief and loss. We hear others say, “Oh, that’s grief and loss!” – but what do we really know about it?

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Most of the information available on grief and loss is about death. Or in relation to a tragic event. But it encompasses so much more. We can compare, but I wanted to find examples of what that looks like for FASD.

Please note, I am not an expert. If you are experiencing distress you should seek the help of a professional. I simply want to shine a light on it to provide context for further exploration. Feedback from people who know more is welcome!

What prompted this thinking? There has been a lot of talk about it lately because of COVID-19. It is interesting that what caregivers and individuals with a disability deal with every day is coming into the open now that more people are experiencing it.

What is grief and loss?

Grief is a normal response to loss during or after a disaster or other traumatic event. Grief can happen in response to loss of life, as well as to drastic changes to daily routines and ways of life that usually bring us comfort and a feeling of stability.

Branches Counseling explains it this way:

As we begin to discuss aspects of grief and loss, let’s be clear that neither grief nor loss are associated primarily with the death of a loved one, but more the loss of anything significant to us. This could be someone or something very tangible like a person, home, or a pet. It could be something less tangible like a job, a way of life, or a familiar routine. Whether tangible or not, the significance of the loss is only determinable by the person experiencing that loss, and the process to resolve and heal is uniquely theirs.

Grief, loss, and the processes are not associated with age, gender, ethnicity, sexual preference, education, socio-economic status, or time limits. We all grieve and grieve at the pace that is needed to heal.

We have all experienced significant loss at some point in our lives, and all have moved through the process at our own pace based on the level of attachment to the loss. Both grief and loss are individual processes with similar features or side effects that are noticeable among different people. However, these processes are worked through in significantly unique ways depending on the person, the person’s need to spend more or less time in a specific stage of the cycle, or the person’s need to repeat different stages of the cycle.

What about grief and loss and FASD?

Earlier this month I watched a webinar from the Canada FASD Research Network: Loss, Grief and Resilience. In it Dr. Dorothy Badry talks about our vulnerability as caregivers. How we suffer losses that many of us may not think of – in terms of safety and confabulation. The judgement and loss of friends and family. Also, a lot of our attention is focused on things that many people do not have to think about or plan for.

FASD often goes unrecognized by many professionals and this contributes to ineffective support, unrealistic expectations, frustration, loss and grief, all of which contribute to higher levels of vulnerability.

Individuals and families have cumulative experiences of loss, grief and hurt, particularly when they feel professionals do not understand their experience and the impact of FASD in daily life.

Training on FASD and practicing FASD informed care is essential to minimize further marginalization and oppression of individuals and families.

A quick internet search on grief and loss and FASD results in only two hits. The CanFASD webinar I mention above (video below) and a five minute lunch and chat by the FASD Network in Saskatchewan.  The lunch and chat is a very brief video that does not explore the subject in depth, but reminds us that grief and loss is not a one time event. We will go through it at different times, for different reasons, as will our children.

I would have thought there would be more information, given we are aware of the grief and loss we experience as caregivers and families (and also individuals on the Spectrum). I am hopeful that Dr. Badry and / or CanFASD continue to explore grief and loss in the context of caregivers and fetal alcohol spectrum disorder.

Part of what prompted this for me right now is the maiden turns 22 in a couple weeks. When I was 22 I was living in England. I had been living on my own for three years. I was working full time and looking after myself. And while I’m not grieving for her for those things, as she is still young and has plenty of time to follow her dreams and carve out a life, I am grieving the loss (change) in our relationship.

We are existing in a parallel plane. She is an adult and wants to pursue her own interests. Yet I know some of them are not healthy. But as an adult she is entitled to do what she wants to fulfill herself in her life. And I’m okay with that. What hurts I suppose is while she still relies on me to keep her safe and support her daily living, she is not interested in anything I am and she no longer wants to pursue any activities with me. So I feel alone. Part of me also experiences grief when I compare our life to others. People I am connected with who are showing all the activities they are pursuing with their children make me grieve for the relationship I no longer have. Now before you go making suggestions, this has been a long process.

To add to this, I am experiencing the beginning of grief and loss with my mother. She has always been my main support person. But she is aging. She just does not have the patience, stamina or capacity to be a major support any longer. She may be going through her own realization of her limits as well. But it has also put some extra pressure on myself and strain in our relationship. My relationship with both the maiden and the crone are going through major shifts and changes.

All while we are in a global pandemic. Any anchors or routines or supports we once had are changed or gone. I have also had some friendships and alliances drift away or abruptly stop over the last year.

But the main one I feel right now is as a caregiver. Many of us exist with little to no supports. All parents and caregivers reach a point when their children start to pursue their own interests.  Most parents are then free to go out and pursue their own interests without restrictions and “get their life back” or pursue something they have always wanted to do. That isn’t a reality for many caregivers of individuals with FASD. Or it isn’t a reality until much later.

I am still the full time caregiver of someone who wants to do their own thing, but is limited in her ability to be left on her own to do her own thing. Out of respect for the maiden’s privacy I don’t want to go into specifics, but there is definitely some grief and loss happening here right now for me. Maybe her as well.

What are the stages of the Grief Cycle?

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Each person’s journey is very different, and it isn’t linear … and you may experience one of these, none of these or something completely different. I read one list with 40 different situations we experience grief and loss. But likely there is more. This certainly isn’t professional advice, but this is what I’ve come up with so far in my limited research:

Shock, Denial, Disbelief – Sometimes people deny their child has FASD or that FASD is even a disability. Maybe they think if they just treat them like everyone else eventually they will be like everyone else. Sometimes people deny their life has been affected by having a child with a disability. They might also be confused or fearful. Maybe don’t want to believe it. So ignore it.

Anger – This can be physical or emotional. Caregivers may take out their anger on themselves or on others. Sometimes this anger is directed at birth mom. Sometimes it is at a professional or agency or the system. It can manifest as anxiety, frustration, embarrassment or shame.

Dialogue and Bargaining – If I take every course or try every therapy – my child will not “suffer.” Their adverse outcomes reduced if I just do this next thing. I will be a better person if I just join this club or group to maintain the status quo. If you are religious perhaps you try to make an agreement with your God. This stage can also be a desire to tell your story to find meaning in some way of what is happening.

Depression and Detachment   If grief and loss was linear, depression would follow denial, anger and bargaining. Or you may go straight to depression or detachment or go back and forth or stay here. This could be feeling so helpless or overwhelmed that you freeze. You want to hide from the world. You want to permanently cocoon. Because if you don’t interact there will not be any problems. You may feel so knocked back by all your efforts to find services or accommodations or feel let down by family and friends. Or you may not be depressed or detached at all.

Guilt – This can be guilt for feeling all the above and going through all the above. By any actions that you did during any of the above phases. It could also be your guilt over what you didn’t do. What you didn’t know. What you didn’t recognize.

Obsession – this is a new phase I had not heard of in the grief and loss cycle. Could this be the phase where you immerse yourself in something? Either to distract yourself from your grief or to channel your energy into something else.

Acceptance – this is the phase where we all want to be – maybe we think we are and then something happens and we move away from it. And that is okay. Because each time you are in this phase you learn a little bit more about yourself and about the process. This is the phase where you explore options and revise or create a new plan. You likely know you have reached this phase when you find acceptance for what is and you move forward.

I found this great worksheet on Acceptance:

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Can you fall back into the other phases? Are there other phases one goes through? Absolutely. Life is a continuous cycle of grief and loss. There may be common threads, but each experience is personal.

As for the current situation I am in, it is realizing there is a shift in my relationship with the maiden. It’s been coming on for awhile, but have I been in denial? Or was I just not paying attention?

I’m an adult now

I have been trying to get her interested in things that I wanted us to do together. She really is in a place where she wants to do her own thing. But the shock came for me in the last few weeks.  With the Red Shoes Rock campaign coming up, something we have participated in together over the last few years, I went on the hunt for rocks to paint. She didn’t want to collect with me. I ordered paint and brushes. But she told me last week she doesn’t want to do the rock painting. And it is just another realization that our relationship is changing.

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How do we cope and manage with grief and loss?

  • reading a book or watching a video about grief and loss
  • implementing or practicing coping strategies
  • connecting with other caregivers – online or in person
  • counselling or therapy

Remember to be in the present moment and to feel and acknowledge. But not get stuck there. If you do, be gentle with yourself. But make a small effort to move on.

Sometimes we simply have to be our own best friend if we are not able to get support from others for whatever reason.

For me lately it’s learning about the process and developing good self care strategies. Connecting with others is important, but sometimes in the midst of my grief and loss I am not always good at that.

I read somewhere that the discomfort that comes with grief assists us not only in saying goodbye to the old expectations, but it inspires us to take action to remedy the feeling.

I also heard a great quote from Sheila Burns on a recent episode of an FASD podcast, where she talked about her own grief and loss as a professional not knowing about FASD for the first half of her career. She said she had to reframe her guilt – which was unhelpful, into regret – which builds momentum.

I’d love to hear your thoughts on grief and loss if you are comfortable sharing. What are some grief and losses you’ve discovered in your caregiving journey? Have you experienced any of these phases or others? What do you do to help you move on? Do you have resources you can recommend if caregivers want to explore this more?

CanFASD has a YouTube Channel with different webinars as well.

3 thoughts on “FASD: Grief and Loss for Caregivers

  1. Ab says:

    Thank you for sharing this very thoughtful, open and informative post. You’ve captured the feelings of grief and loss so well and in a way so few online resources do.

    I am sorry for the ongoing struggles you have with your daughter and now with your own mother. I wish you well on these two journeys.

    You’ve captured it so well the journey that a parent with an FASD child (in my case, at risk prognosis) goes through. The denial and grief of what is vs what you thought. But I also appreciate the pragmatic advice you’ve laid out. There is always reason to stay positive and to stay hopeful.

    Take good care!

    Liked by 1 person

    • our sacred breath says:

      Thank you so much Ab for your kind words! And yes always a reason to stay positive. Hard to do sometimes but it’s okay to just feel what we are and move on when ready. I knew I had grieved the different potential… I was just surprised when I also now see our relationship shift. And at the same time as my moms! Keep on doing what you are!

      Liked by 1 person

      • Ab says:

        The “different potential” kills me all the time when I think about it and when I see it manifest at times. The grief comes and goes like a tide. I appreciate the honesty in which you talk about your experiences. Take good care for now!

        Like

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