Identifying 5 Types of Grief That Accompany ALS

Kristin Neva avatar

by Kristin Neva |

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Author and counselor Douglas C. Smith wrote in Health and Happiness U.P. Magazine about five types of grief people are experiencing through the pandemic. As I read through the article, I realized I have experienced all of them — anticipatory, general, disenfranchised, ambiguous, and vicarious grief — with my husband Todd’s ALS.

Following are some of my experiences with the five types of grief in response to ALS.

Anticipatory grief

I grieve future losses. When Todd was diagnosed with ALS and told he likely had just two to five years to live, I grieved that he would not be here to see our young children grow up and graduate from high school and college. I grieved that he would not be here to walk our daughter down the aisle at her wedding. When I see elderly people walking hand in hand, I grieve that we won’t grow old together.

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Granting Myself Permission to Sit With My Grief

General grief

Todd is still here, but we’ve had losses. As Todd’s health has declined, we’ve lost the ability to engage in many activities we used to enjoy. We can’t go on hikes or on vacation. It’s getting difficult to even leave the house.

A video memory from more than a decade ago recently popped up on my Facebook feed. I smiled as I watched Todd playing with trucks on the living room rug with our then 19-month-old son. Isaac tackled Daddy. Todd was still mobile then, and the only visible symptom was his left hand, which didn’t seem to move right.

Todd’s health has since declined to paralysis, and Isaac grew up without many of the physical activities I envisioned father and son being able to do together — house projects, golfing, tossing a football, or going for a bike ride. They’ve had to find other ways to connect. We’re thankful for what we have, but that doesn’t negate the losses. This brings me to the next kind of grief.

Disenfranchised grief

I have experienced grief over a loss that others do not fully understand or take seriously. At times I’ve been on the receiving end of insensitive responses when I’ve talked about my sadness. It’s hard to sit with someone in a grief that doesn’t have easy resolution. I know I’ve also said things to grieving people that I’ve regretted.

Ambiguous grief

I’m grieving a loss for which there isn’t closure. ALS keeps taking. The losses keep coming. We hold on to a new normal for only a short time before life gets even harder.

Vicarious grief

I’ve made connections with other women whose spouses have ALS. Many of their partners have died, and I’ve cried for them and their children. My heart has been opened to the pain of others, and I’m more aware of the suffering in this world, so I often find myself grieving for others.

Smith wrote that the first steps of the healing process are identifying and naming our losses and sharing our grief. I’m hoping he’s right.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.


Nina avatar


Thank you, Kristen. Another heartfelt post that captures the hard road and huge losses of ALS. You are so brave and I admire your caring love for your husband. You have opened my eyes to what my husband is going through. It’s so unbelievably hard on all of us.

Kristin Neva avatar

Kristin Neva

Thanks for commenting, Nina!

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