This last month was our local annual Walk to End Alzheimer's. Communities throughout the Puget Sound raise money and awareness by walking in the hopes people will learn why it is important to talk about Alzheimer's and Dementia. The goal is to normalize, destigmatize and provide resources to help families struggling with this terminal disease. It is important to raise awareness about the resources available at Alz.org and how the association supports our community. Raising awareness can be just as important as raising funding.
I have spoken a lot about my mission and passion for helping others navigate the challenges of transitioning loved ones to long-term care. I have spoken about some of our family’s journey navigating the disease and what we learned along the way. Many people do not get the privilege of knowing their grandparents. I was blessed to have paternal grandparents, maternal grandparents, step-grandparents; to me, there was no divide in the level of love, blood or not. They were all family. We were loved for who we were and included as family in their care journey. Sometimes you are blessed enough to find this level of love and familial connectedness with people outside your traditional family dynamic.
My Grandma Matthews was a mountaineer, passionate adventurer, a driving school instructor, and a leader in the Lions Club, all of this during an age when women were not allowed to be leaders. She was a mother of nine and grandmother of 18 (not including me). She was my best friend’s grandma and just so happened to be my uncle’s mom (he married my mom’s sister). Even though we did not share the same bloodline, she actively took me under her wing and called me her own.
She took me hiking at age ten and taught me the outdoors. She encouraged me and told me I was capable. She told me I could be strong enough to canoe 149 miles on the Missouri River at age 13. With her I camped 11 days and roughed it through accidents, storms, lots of dirt, learning, and fun! It was unforgettable.
At the age of 63, Grandma Matthews lost her eyesight. She worked hard, taking supplements, and restored her sight to be able to drive again at age 66! This helped to restore her independence and quality of life.
At age 72 she climbed Mt. Olympus, her last climb. She was kayaking and camping until she was 81 when she had her stroke. We were optimistic about her recovery given her grit. It was heartbreaking for her to not be able to return to her beloved outdoors. We had so many experiences to share. It was fun to sit and talk, with grandma in the middle of us all, smiling and enjoying all the chaos. Her home was home to all of us. It was always the gathering place. Over time, due to scarred brain tissue, gray matter formed affecting her cognition and recall. As her health declines, she became wheelchair bound and needed more care than could be given at home. We knew nursing care was needed.
Grandma Matthews had a special way she would look at you. Even though her eyesight was not good anymore, it seemed like she could see into your soul. Her smile warmed you head to toe. I always tried to visit her, have my kids share space with her, hoping we could all soak up her glow. She was a beam of strength. She was about grit and determination that only a lady strong enough to brave the wilderness could have.
Alzheimer's/Dementia has been the thief of two of the most important women in my life, Zella Matthews and Lisa Wagner. Statistically, I should expect more of my family to be affected by dementia. 1 in 3 seniors die with dementia per the Alz.org website. For this reason, I am requesting every reader of my newsletter to sign up for Alz.org to stay connected to tools, resources, up-to-date strategies, and new medical support trials. Through my connection with the Alzheimer's Association, I have learned that few people touched by this disease are connected to their resources. Only one in five affected individuals even know that this resource exists. This is a source of support, and that number is far too small.
25% of my time is pro-bono, working with individuals who do not have the financial wherewithal or family support to find solutions for the challenges of caring for themselves or a loved one. If everyone reading this letter shared this resource with people in their network, friends, neighbors, family, and chosen family, the word would spread even more. Then maybe we would see less stress and confusion while they are in this situation by sharing resources. Educating our network is a great way to combat this disease and make life a little easier for the ones we care about.
Please help be the solution. We all need to come together, spread the word, and end the stigma. Do it for the Lisa's and Zella’s of the world.