Grieving the death of a life while my loved one with ALS is still alive
Caregivers of the terminally ill need a different kind of space for our grief
After my husband, Todd, was diagnosed with ALS, I was shattered and desperate to connect with others who might understand the pain I was feeling.
I searched online for a local grief group and found one that met at a nearby church. But when I called to ask about joining, I was told the group was only for people whose loved ones had died. The woman I spoke to was kind, though, and sent me a beautiful Philip Yancey book about suffering. But I was left wondering — what about those of us whose loved ones are still here, yet are slowly slipping away?
It’s an odd sort of limbo to grieve the losses that accompany ALS. Todd has lived with ALS for 15 years, and each stage of the disease has brought new losses — first his arm, then his legs, and recently his lung strength. He’s now paralyzed and relies on noninvasive ventilation to breathe, but he’s still here — and still himself. We continue to parent and share daily life. Yet the losses have been ongoing.
As Todd has lost his independence, I’ve also lost my own autonomy — the freedom to sleep when I want or participate in activities — because he needs my help all day, every day. And now that he is homebound, I grieve the loss of the two of us attending events together.
A limbo of grief and loss
Recently, a friend sent me information about a yoga and grief workshop. The description spoke of loss and change, of holding space for grief and reconnecting with the body. It sounded like something that might resonate with me. But then I read that they will have a time for sharing a favorite memory about our loved ones and moving forward. I paused.
How do I move forward when I’m still in the middle of it?
I’m glad there are spaces for those who’ve lost loved ones to gather, to share memories, and to heal. But those of us caring for the terminally ill occupy a different emotional landscape. We live with prolonged uncertainty. We brace ourselves for continued loss even while life goes on. We can’t leave grief behind, because it has set up camp beside us.
Sometimes I think people who’ve lost their spouses might envy those of us who still have ours, and indeed I’m glad Todd is still with me, but it is exhausting to hold grief indefinitely, to live in the long shadow of loss that stretches on for years. It’s a different kind of hard.
I hesitantly reached out to the workshop leader to see if I’d be welcome, wondering if I’d also be told I didn’t belong. This time, I was encouraged to sign up. Now, I need to figure out if I’ll be able to get away for a couple hours.
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Julie Grachek
This article sums up everything I feel,but could not put into words.
Carmel Priore-Garlock
Kristin, you have phrased this beautifully. It’s exactly how I feel as my husband enters his third year with ALS. Somedays, I feel dozens of little losses - elderly couples at the grocery store or on their daily walks - knowing we’ll not have those. “Grief” is 100% the right word!
Byrne Smith
When my late wife and I were living through what you describe, although not for such an extended period, I was referred to and joined a church-affiliated Caregiver Group. It was made up of both current and former caregivers. We were a group going through the transition of losing a loved one. It was very helpful to be around others experiencing a similar situation even though I was the only ALS caregiver. It helped in dealing with the feeling of being isolated. After my wife passed, I continued to attend for a couple of years. Maybe there is a similar group in your area.
Gina
Hi Kristin. You spoke the exact words I feel. My husband, Steve will be 65 in December. He went two years undetected and finally diagnosed in 2023. It started with his arms only with everything else still working. He starting having falls in 2024 and began rapidly losing his leg mobility. He is in a wheelchair full time. He is slowly losing sensation when to use the bathroom and becoming out of breath and winded more. He was hospitalized for pneumonia in May and we are getting over pneumonia again this time w/o hospitalation.
I would like to become friends and fellow caregivers. Perhaps I could glean from you some things. Been his full time caregiver for 3 years in Feb.
Thank you for your time, Gina
Janie garza
My 36-year-old daughter is already in hospice she was diagnosed with ALS one year and six months ago. She is declining rapidly. I'm with her all day every day. It has been very hard for me because we lost her father three years ago. I try to be strong for her but I break down. It makes me very sad and heartened. I am now on depression, anxiety, insomnia medication to help me cope with her horrible cruel disease. I cry constantly.