When a Mom with ALS Becomes the One Needing Care: Redefining Motherhood After Diagnosis
- Bhumi Pathak
- Mar 6
- 3 min read
There are moments in life that divide time into before and after. My diagnosis of Amyotrophic Lateral Sclerosis (ALS) was one of them.
Before, I was the room mom at school. I went on all the field trips. I remembered who needed new shoes because the old ones were worn out or outgrown. I asked about homework and made sure everyone else was okay. Though their dad helped, I was the primary caregiver — the steady one, the center of gravity. Or as my oldest son points out, “I wore the pants.”
After the diagnosis, everything shifted.
At first it was subtle — fatigue, tripping, weakness. Then came the loss of walking. And with that, something even harder: the feeling that I could no longer “be a mom” to my two boys, now ages 20 and 16.
ALS is relentless in the way it affects the body. Muscles weaken. Mobility fades. Independence slips away piece by piece. Yet, as is so often the case with this disease, my mind remains sharp. My love for my boys remains fierce. My “mama bear” instincts remain intact.
And that’s the heartbreak.
I still feel like their mom.
I still want to care for them.
But now I need help getting dressed, getting up, and moving across a room.
Going from caregiver to needing care is not just a physical transition — it’s an identity crisis.
Being a mother is woven into who I am. When that role was disrupted, it felt like I lost a piece of myself.
The cruelty of knowing that I cannot be the mom I once was, is harsh and unrelenting. The guilt of wondering whether I will be present for important moments in my boys’ lives — graduations, first loves, weddings, grandchildren — can feel unbearable.
They may not say it out loud. They may handle it differently. One may become quiet and withdrawn, while the other tries to “be strong.”
Even though my boys are older — 20 and 16 — they still need their mom. And some days I am so exhausted that I cannot get out of bed.
What I am learning now is how to redefine what “being a mom” looks like as this disease progresses.
I rely on my husband and my mom to help with traditional “mom duties” like making meals and staying involved in school activities. But I hold tightly to the things I can still do — spending time with my boys, offering advice and guidance, and simply laughing with them.
Also, as I mentioned one of my boys has become quiet and withdrawn and the other tries to help and ‘be brave’. I am learning to understand that this is their journey, and I need to allow them grace and time to cope with this on their own terms. At the same time, I want them to know they can say or ask me anything and I will be honest and supportive. I have to say, this has not been easy, and I am trying and will continue to do so.
In the end, I hope there may be a small silver lining.
I hope that through this experience — despite the loss — my boys gain a deeper capacity for empathy, a more mature understanding of resilience, and a stronger bond with each other and with their father.
Resources
For additional resources on helping kids cope with ALS, please visit the resources page:
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