May 2021 Annemarie Albiston
May 11, 2021
The phone rang in the early morning hours. It was my mother saying something was wrong with my father, and she had called 911. We all made it to the hospital in record time! My father had had a massive stroke. There were many unknowns in the early stages of dad’s stroke. Would he walk? Would he drive? Would he talk? What would his quality of life be like? I knew dad was a fighter, but I also knew that a stroke wasn’t good.
In the blink of an eye, my father’s happy, productive, and fun life changed drastically, and so did ours! A week in the hospital, then several weeks in rehab was hard work for dad, but he was determined. I was by his side from morning until night. I swabbed his mouth, helped him eat, encouraged and supported him, and went to all of his therapies. When dad was tucked in for the night, I would go home, and my husband had a hot meal waiting for me. We had a little bit of time for conversation, then to bed and to do it all over again the next day.
During speech therapy one day, the therapist said that dad had aphasia. I remember thinking, dad had a stroke, what is aphasia? I had much to learn! Aphasia is a communication disorder. One out of four stroke patients can end up with aphasia. In simple terms, aphasia is loss of language, not intellect. Imagine knowing what you want to say, but not being able to get the words out. Frustrating, you bet!
Dad needed a considerable amount of care when he went home, and he still had outpatient therapy during the week. Every day I would travel the 30 minutes to my parents’ home, take him to his therapies, take him home, then travel back to our home. I ran errands, did their grocery shopping, cooked….the list is long. I loved every second of being with my father, but it was exhausting! Life as I knew it had changed considerably. My father’s health and well-being became a priority in my life. I spent huge amounts of my time with my father and my mother. My husband never complained! Our life now focused on taking care of my father, and my mother too.
It soon became necessary for my parents to move in with us. We finished off some space and made a beautiful in law apartment. No more back and forth; my parents were now just across the porch from us. Having them with us made some things easier and some things more difficult. It was difficult to watch my father become isolated by friends and family. He was still the same wonderful man, but because he couldn’t communicate like he once could, people stopped calling and stopping by. It was so sad to watch.
We worked hard to give my father the best quality of life possible. He loved being around people, loved to laugh – he loved life.
With little to no local support for folks with aphasia, we knew we had to do something. My dad needed support so we knew many others did too! One summer we literally stumbled upon the Adler Aphasia Center in New Jersey and the wheels started turning! We toured the center and watched folks living with aphasia having fun, laughing, engaging in conversation, doing arts and crafts, smiling, being creative – they were out of the house and they were doing something that made them feel good! How my father would love it! We needed an Aphasia Center in Maine; we needed to help people living with aphasia.
How do we start an Aphasia Center? Who will come? The questions were many. Our first retreat in 2012 welcomed 11 folks with aphasia. With families, friends, and volunteers, our numbers have continued to grow over the years. The annual Andre R. Hemond Aphasia Retreat Weekend is always the highlight of my year! The challenges my father endured after his stroke have led us to help many other folks who are living with aphasia, and their families and friends. We have been doing virtual aphasia programs for the past year, mainly on Monday mornings. It’s a fabulous way to start the week – seeing our friends, sharing, laughing and having so much fun!
Loving the work we do with the aphasia community led us to wanting to do more. In 2015, we opened the doors to the Adaptive Outdoor Education Center in Carrabassett Valley, ME. In addition to our fully accessible lodge, we offer recreational and educational programs throughout Maine. Our programs include sailing, skiing, waterskiing, climbing, theatre, music, arts and crafts, alpine racing, special programs and more! This summer we will be opening our second location in Brunswick, ME.
Our team works tirelessly to provide quality of life programs for people of all abilities. Our family has grown to include the people who attend our retreats and the people we meet on a daily basis. I feel very blessed and my heart is filled with compassion and love. My father would love what we are doing, and I know he is very happy and proud that his name is on the retreat we do for folks with aphasia. He was an educator his entire life, and through the Andre R. Hemond Aphasia Retreat weekend, outreach, and more, he continues to educate!
Caring and being there for my father every step of the way is a gift I will always cherish. How fortunate I was to have the unwavering support and love from my husband while I spent hours away from him each day. We put our lives on hold to give my father what he needed – love, comfort, compassion, care, and so much more!
I watched my father take his last breath six years after his massive stroke. His was a life well-lived. Although the challenges were many for my dad, how blessed I was to be able to learn, grow, share, and love even more. I wish dad never had the stroke, yet if it weren’t for my father having the stroke, we wouldn’t be doing what we are doing now. He would be happy to know that good things have come because of the challenges he endured. My dad is forever in my heart.
Facebook: Aphasia Center of Maine
Facebook: Adaptive Outdoor Education Center
Instagram: aphasiamaine and aoecmaine