by Candace Williams

“What sunshine is to flowers, smiles are to humanity. These are but trifles, to be sure; but scattered along life’s pathway, the good they do is inconceivable.” – Joseph Addison

I was 38 years old in October of 2013, when my mother was diagnosed with frontotemporal degeneration at the age of 57. It’s a day I will never forget. Nor will I forget the tidal wave of emotions that washed over me during the 3 months that followed. I cried more in those months than I ever had in my life. My mother’s diagnosis was extremely devastating to me.

Then, one day, I reminded myself of one of the most important lessons my mother had taught me growing up – to make the best of whatever situation we were faced with, and to live our best lives whatever came our way. And today I can say that while being a caregiver has been the hardest experience of my life, it’s also been the most rewarding.

My mother lived with untreated bipolar disorder throughout my childhood. It was a tough way to live, and there was very little consistency. When I decided to become my mother’s caregiver, I told myself that it was an opportunity to become for her what she hadn’t always been able to be for me. So far, I think I have achieved that goal. Each day I strive to do my best to make sure that she is happy.

About a year after my mom’s diagnosis, she told me she wanted to work on a project with me. I asked her what kind of project, but she was already starting to lose her words at that point, so I threw out some suggestions. At one point I offered: “How about I document our FTD journey? I’ll take pictures and videos of you, and we can start a blog where I write about our experiences.” My mother, a former teacher, has always been passionate about education and activism. Needless to say, she loved the idea! So, I started documenting…

In 2015 our blog, Our FTD Journey, was born. Blogging has allowed me to take a deep dive into who my mother is, helping me to see her full humanity. It has also been a source of healing for me, and has given me the opportunity to bring healing and hope to others, as well. Writing from the perspective of a daughter caring for her mother makes my stories relatable. Because I am not writing as an outsider, but as someone who is in the thick of caring for a loved one with dementia, my blog resonates with other caregivers. If you’re interested in learning more about our journey, I’d encourage you to visit the blog. And most of all, I’d encourage each of you to find your own outlet for making meaning out of your journey with FTD.