Megan Williams shares her journey through her father’s ALS diagnosis, from the emotional toll of caregiving to the importance of planning for end-of-life care. She reflects on grief, adaptation, and the strength found in honoring a loved one’s wishes with compassion and clarity.
Transcript
So my name is Megan Williams. I live in Cary, North Carolina, and my dad, Wes Williams, was diagnosed with ALS in February of 2022, and he passed away around Thanksgiving of 2023.
The biggest thing that I learned with ALS is it really affects different patients differently. You can read about one person’s experience or hear about one person’s progression with the disease, and that’s really unique to that person.
I don’t think I quite realized how all-consuming a disease like ALS is. Whether quickly or slowly, at some rate, you’re losing essentially all of their faculties or their physical capabilities. However, their mind is still very much acute.
But also for the family, it’s all-consuming emotionally. It’s all-consuming physically. In some cases, financially. It takes up so much of life.
The hardest thing for probably the patient and for the family is just to understand that you’re constantly having to grieve in these small ways — like it’s not going to get better. There’s only one, unfortunately inevitable, end.
And with the way that the disease goes, you’re constantly grieving some loss, whether it’s loss of your right hand or loss of being able to walk, or needing a BiPAP machine, or being in a chair full time, or something like that. So there’s always these little kind of steps down, and that’s really, really hard.
That said, I think once we kind of understood that this was the nature of the disease, it did help us make plans. The family has to be really nimble. The patient has to be really willing to adapt.
Being willing to accept that the primary caregiver can’t do this by themselves — that they need support around them — even if it’s just someone else to come over and sit with the patient for an hour just so they can like go for a walk, go scream into the void, go to the grocery store, whatever they need to do. But then also accepting that you’re going to need some sort of help or support so that the primary caregiver can continue to be there safely for their loved one.
So knowing when you might need, like, a lift device or a power chair full time or a BiPAP machine or a hospital bed — you know, these devices — which in the moment really feel like a real loss of identity or dignity.
And while that is true, also seeing it as more of, this is what I need in this moment so that my loved ones and I can maximize our time together in a way where we’re focusing on being together and making sure that we can take care of this person that we love in a way that everybody is safe.
Because it can be really hard. Caregiving is all-consuming emotionally, mentally, but also it can take a real toll physically as well. Prioritizing not just the health of the patient but also making sure that the person who’s doing the caregiving can do so sustainably.
As a culture, we are really squeamish when it comes to end of life and death. Navigating those conversations — it’s really, really uncomfortable. It was really uncomfortable for me, and it’s uncomfortable for our family.
That said, one of the biggest gifts that my dad gave to me, my mom, and my sister was being very explicit with his wishes at the end of his life.
We went through a lot of feelings around his passing. You’re going to feel obviously sadness, but there’s also some relief in seeing the person you love no longer have to suffer.
But one of the things that at least I don’t think my sister, my mom, or I ever felt was regret because we knew what he wanted, and we were making sure that that was carried out to the best of everyone’s abilities.And the hospice team was really wonderful in making sure that we were able to do that.
