For 20 years, I have been woven into the dementia journey as a family member. For 20 years, I have been able to reach out to those struggling with the diagnosis, the fears, the stigma, the battle between joy and sorrow.
When my grandmother was diagnosed with Vascular Dementia on July 14th, 2005, I had already been accompanying those living with dementia through my volunteer work at a local nursing home for 5 years and had already made the decision, answering my life’s call, to work with our elders and those living with dementia. I knew dementia in its textbook form, with the distance of short visits with strangers, but now, my life was immersed into dementia in a way only experience can explain. I saw my family struggle with her diagnosis in the way the treated her and avoided her. In the way their love grew stronger for her, and in the way they allowed their misunderstanding turn their love into anger. I saw the way my immediate family drew closer to her and in turn learned just how deep an impression her life made on our lives.
I am tremendously blessed to have had remarkable grandparents, who have in their own way helped me create wonderful memories, learn valuable lessons, and how have sparked something in me that makes me the person I am today. I sometimes feel guilty for talking about my Grandma Marie so much because of the dementia connection. However, each one has left a beautiful impression on my life, I simply keep most of it close to my heart instead of on the pages of the internet.
This 20-year anniversary invited me to go on a little adventure over the days of July.
My writing muscle is a muscle I have not used in a while. It is rusty, timid, and well, poor. I guess that is part of why I set out to write a letter to dementia every day for the month of July. It was part exercise in doing what I invite others to do so often, to write to dementia what they are thinking about their journey, part exercise in building up the disciple to post something someone else might see, another muscle that has grown weak in recent years, and part to build up the writing muscle. The letters are riddled with lack of clarity, grammar mistakes, and even a lack of depth, but it is only the start of this process, only a small percentage of the work I long to put out into the world.
Now, on August 1st, on the other side of this adventure, I am asking myself how I can better share what I know with the greater population. I am by far the master of dementia, but I can’t ignore the journey I have been on and how it might help another. I won’t write a letter to dementia every day, but I will explore other ways to write, to share, to grow in my own understanding of what this disease means to so many.