I share a lot about our dementia journey on Facebook (probably moreso than here, though I am trying to rectify that). As a result, I have at times had people messaging me and thanking me for sharing my journey with my mom.
The truth is that I am really private about things and my natural inclination is, honestly, to be so about this journey too. It is really important to me to protect my mom’s dignity and keep in mind that it’s not just my life I’m sharing but hers. And there are some pieces of it that I will never share for that reason. For the ones I do share, it’s a constant cycle of asking myself, “Would she be comfortable with me sharing this? Will pulling back the curtain help someone else in some way?”
The stigma that goes along with a dementia diagnosis is one of the major reasons I share. People with dementia are not toddlers or shells or non-persons. They have emotions, needs, wants, and preferences, even if they have a difficult time expressing them as the disease progresses.
I also know that people are moved by stories not facts and that’s why I tell ours. I could tell you that it is the only leading cause of death for which still no cure or that 5.7 million Americans live with Alzheimer’s or that there are 16.1 million unpaid caregivers caring for people with some form of dementia or that early onset forms of these diseases are on the rise or that 1 in 3 seniors die with some form of dementia.
Think about that.
Really think about it.
It is pretty much guaranteed that you or someone you love will be touched by this hellish condition.
But I know statistics and facts don’t move people. Stories do and that’s why I need for you to know my mom and the millions of other people like her who are people, human beings with emotions, likes, and preferences, who are dying a slow and cruel death at the hands of dementia.
Because if you know her, maybe you’ll vote yes for legislation that provides healthcare to people like her and support for people like me, who care for our loved ones. Maybe you’ll think of her and vote for a candidate with compassionate policies in the next election. Maybe when given the chance you’ll support funding for a cure. And maybe you won’t be one of the people who just fade back into the woodwork when this disease comes calling at your friend or family member’s door.