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.
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.
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