August 28, 2016

Facebook is a funny place to live. Just because we are friends does not mean you will see all my posts. Facebook chooses which posts get shown in your newsfeed based upon their constantly changing algorithms. I realize at times you will be missing pieces to the puzzle of my life I share on Facebook.

Yesterday I shared a heartbreaking step in my life of living with dementia. And while I LOVED the support I received, some of the comments made it clear you don’t know the entire story. And to be honest, unless you are incredibly close to me, you will never know the entire story. It’s too painful & not the reason I chose to openly share my story.

So why do I share my journey? To let those dealing with similar circumstances know they aren’t alone. It is incredibly lonely caring for a sick family member. I had no idea how lonely until Jane became ill. It’s hard to navigate the waters of what to do, where to turn for help, and how to support the person you love. I don’t always want to share my visits with Jane. But I do because I know from friends who have reached out to me privately, it helps them in their own journey. I am not sharing because I want you to fix it. I’m not looking for you to tell me how to ease her pain or make my time left with her more comfortable. I’m not sharing for you to remind me each day with her is precious. I know this already. And while I appreciate your comments come from your heart, it makes me not want to share my journey.

Instead, tell me you are sorry. Tell me you are sending love & strength my way. If you have religion, tell me you are praying for Jane. Tell me you are here for me if I need your strength. Just heart my post so I know you are in my corner. I promise, if I need your guidance, I will ask. But know I (and my family) did not begin this journey a year ago when I began openly sharing. In contrast, this journey began in 2008 & for Jane, perhaps even sooner. Dementia & Alzheimers is a cruel disease. A disease that needs to be eradicated. It is not a disease that only impacts the old – my stepmom was in her mid 50’s when it began to take control of her mind. It progresses differently in each of its victims. And because we aren’t clear on what causes it, we aren’t clear on when it really begins or how it will end. So until then, I share my personal journey with the disease. I will never attempt to tell you how my dad feels watching the woman he loves fade away, or how my step-brother & step-sister feel as they slowly lose their mom. I won’t even attempt to tell you how Jane feels. That’s not my story to tell. But I can share my struggles & if it helps just one person along the way, then it’s worth the vulnerability & sharing the heartache.