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Melanie Canton and Laurie Clarke: Words of Wisdom from ALS Caregivers

 Melanie Canton of Vancouver, WA

“My husband was diagnosed with ALS in May of 2021. The diagnosis was devastating and turned our lives upside down. I struggled through the next few weeks, overwhelmed, distraught, and dealing with a blur of tears, fears, and questions.

And then one day it just hit me … I was spending so much time focusing on what was going to happen, and the things we weren’t going to be able to do in the future, that I was losing precious time in the present. Time when we could be enjoying each other, sharing experiences while we still could. I embraced the reality that nobody is guaranteed tomorrow. I was determined that together we would live in the present and enjoy the gift of each other that we have today. So take the trip, take way too many pictures, and embrace every day. Don’t let the uncertainty of tomorrow rob you of the beauty of today. “

 Laurie Clarke of Sandy, Oregon

“ALS is such a cruel and odd journey. Your pALS’ journey may look very different than my pALS, but they are all going in the same direction. For us, each journey is different too. Some cALS rely heavily on their spiritual traditions; some go on anti-depressants, some cry everyday, some pull on their boots and wade right in. We learn how to finally ask for help, how to let go of the things that aren’t really all that important, to compartmentalize, to remind ourselves that demanding or depressed behaviors are the disease — not the person we love — and, most of all, we learn how to breathe so that our blood pressure lowers and our minds can clear.

There is no right or wrong way to go through this but reaching out really does help. Unfortunately, you find out who your real friends are. That gives you a chance to practice forgiveness and letting go. Learn who to listen to. Do lots of research into the disease, but stay away from quacks and proselytizers. If someone is just taking and not giving, they are no longer healthy for you to be around. Gracefully let them go. You get to decide what you have the bandwidth for. Your bandwidth will ebb and flow, and that’s okay.

One of the hardest things is learning how little control we have over our own time. Make time for yourself. Yes, make lots of memories together but bring in help and get away to remind you of who you are. It’s scary-easy to lose yourself to the duties and the grief. You must find ways to take care of yourself. If you don’t, then you can’t adequately take care of your loved one. Allow yourself to screw up, or to be reluctant; this is a marathon, not a sprint. ALS can’t take you out too. Breathe. Humor will be your pressure relief valve. Make sure you enjoy something together every day. After a while, dread and despair become quiet companions. You will make peace with them — they don’t own you. Make plans, go places, do things for as long as you can. Those memories will sustain you.”

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