While no two ALS experiences are ever alike, ALS caregivers and families impacted by the disease regularly do whatever it takes to ensure their loved ones are living their best lives possible. After Terry Peterson was diagnosed with ALS in 2019, his family decided to preserve the memories of their time together by documenting their journey in a video.
“My intentions of this video are to capture these precious days of our time together, of motherhood, and of caring for our Papa Terry,” said Terra. “A time capsule if you will, of us as a family, to remember this time and to share in our everyday lives of living with ALS in our home in Cologne, Minnesota.”
Terra is graciously allowing us to share her amazing video with the ALS community, along with her own personal heartfelt message to her father which she shared on social media.
Oh, dad where do I start.
July of 2019, our trajectory was confirmed and changed forever. Yet I knew it. I had spoken it out of my mouth before we even started down the path of diagnosing. Something was wrong with you, you were dying. I’ll never forget it when I told Darci in her garage a year before your diagnosis, something was terribly wrong. I couldn’t put my finger on it and was afraid of my own premonition. But I told her point blank something’s so really wrong with my dad; I just feel like he isn’t going to live very long.
At that time, we had no idea that the beast we were dealing with was ALS and dementia. To be completely honest, we thought it was depression. After losing mom, that would have maybe been expected. The trauma from the last decade of her life and grips with addiction, and then her abrupt but also expected death; it was harsh. You were flat, detached even at her funeral, symptoms of your condition were noticeable in hindsight even then, even when she was still alive.
The Mayo neurologist, after months of diagnosing and trying to determine what terrible problem was going on, confirmed my worst fear. ALS with frontal lobe dementia included. It solidified all of the decline, the subtle but obvious changes. I noticed the tremors and atrophy in your hands months before. All signs of something deep dark and neurological.
It will take me years to decompress the last five. But what I’ve learned in this last year of care taking is that there is beauty in death and dying. That you can be both terribly sad and devastated, but still find joy in the mundane day to day. I only hope to show my children compassion, empathy and love. For family, of course, but also for people beyond our circle. As people have reached out and helped our family in the smallest but most impactful ways, they’re learning.
Instead of dwelling on the uncontrollable unfairness of this journey we’re powering forward laughing at the uncomfortable losses and sad realities, taking them in stride, managing a series of losses and adapting. Piper has the ability to do that already, showing grace and humility for your disabilities. I’m so proud.
Dad, the way you love these girls in the simplest ways, the smiles you bring them. It’s all very joyful. Even when we know the end for you is coming. The lessons you’ve unknowingly taught me and my children through your loss and your time here under our roof are infinite.
We’ll laugh one day about your silly habits, the man you morphed into under the grips of your disease. They’re comical and bring light to the sadness. We’ll never forget your obsession for Dr. Pepper, your insatiable desire for chocolate and granola bars, your lack of boundaries, your ninja like steps and the way you would sneak up on us unintentionally, curious of what we were doing. Your child like joy for big foot & silly socks, the blankness in your stare, the hollowness of your voice, the raspiness of your aphasia and worsening aspiration.
Along with the old you: your crazy spirit, your love for the outdoors, hunting and fishing, your trips to Margie, your love for the ocean, your terrible crude jokes, the silly child-like teasing. These things are all unforgettable and some sad, but mostly funny and memorable at the same time. Thank you for teaching us unforgettable life lessons in one of the hardest ways.
I may never understand why these very unfair and unfortunate events have been our reality and are the cards we’ve been dealt, but it’s not for me to dissect or to fully understand why.
I’m hoping by sharing this that people can find light in their darkness, that they have permission to feel the grief and to know their pain is relatable. I’m certainly not an expert but having dealt with the last five years and learning to go with what’s been dealt, I want people to feel seen on their hardships too.
Our lives will be changed forever because of this experience and I only hope to lead and to help my children lead a life of conviction, contentment, empathy and perseverance.”
For more information and resources about being a caregiver and coping with the ALS journey, click HERE.
Terry Peterson sadly lost his battle with ALS on June 20, 2021. Special thanks to Terra Beilby and her family, for allowing us to share this beautiful, heartfelt story and to Chelsie Lopez Production & Marketing and Laura Rae Photography for the accompanying video and images. You can continue to follow Terra’s family on Instagram @simply.terra.
Comments
My soon to be 47 yo son was showing als symptoms 3 yrs ago this month. The actual diagnosis came in March of 2021. He is now not able to walk, talk or use his hands and uses a feeding tube. In addition to all this he has not accepted any of this. He is angry, bitter and frustrated and his target is his wife who is his primary care giver. He has disengaged from all of us. He never smiles and I really miss that. He refuses to take an antidepressant, or CBD or anything that we suggest that might help relieve his depression. He has begun to be so agitated that any little thing will cause him to shake all over. He says insulting and demeaning things to his wife. He has even begun to shut me out. And now he wants a divorce. He does resemble anything of the man he used to be. We are all heartbroken for him. And that is an understatement. How can we help him ?
Patricia, I'm so sorry. My heart goes out to all involved. An ALS Association care team may be able to help your son and his wife get resources and support. You can reach out at (800) 782-4747 or alsinfo@als.org. You can also find a list of support groups here: https://www.als.org/support/support-groups
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