We’ve been having a rough go of things as of late with my mom’s Alzheimer’s. I’ve been trying to crowd-source information & resources on Twitter and have had so many people reach out with their love and prayers and good thoughts. It’s appreciated more than you know.
Someone this morning lamented that more needs to be said about this silent disease. And he’s right. But I know why *I* haven’t spoken too much of it sooner – and I’d hazard a guess it’s the same reason many have – shame.
First off, I am not ashamed of my mother or her diagnosis. I am ashamed of the things this disease makes her say & do. I’m ashamed of the amount of guilt, anger & fear this disease causes her – and that I am unable to really do anything but pacify her, which means lying to her on a regular basis. I’m ashamed of the way my feelings are hurt by the things that Alzheimer’s makes her say about people I love – even though I know they aren’t real. I’m ashamed that the amount of effort it’s taking to keep me and the rest of my family emotionally afloat leaves me unable to do other things I’d rather be doing – although I am making self care a priority as often as possible.
I’m ashamed that one my biggest fears for this disease was my mother forgetting not only my name, but that she bore me from her own body. I’m ashamed to realize I was woefully unprepared for the emotional toll this middle stage of Alzheimer’s can take.
I’m ashamed that what we’re going through isn’t what I had experienced with Alzheimer’s previously (which admittedly, isn’t much experience even with a strong family history). I’m ashamed that no matter what I do or how hard I work to calm my mother’s fears, another one will pop in place of the allayed one – often to circle back to it a short time later.
I’m ashamed that while we try hard to preserve my mom’s dignity, it can be difficult to do so. Mostly because when I ask for help, I need to disclose feelings or actions that to someone (thankfully) unfamiliar with the disease may seem completely unfathomable. I assure you, even a year ago I couldn’t fathom my mother like this.
But I am not ashamed to ask for help. From professionals. From my support group. From my peers and social media. I am not ashamed of the way my father, sister and I have united to do what we can. And even though there is much, much shame, I refuse to ever be too ashamed to talk about this. Whether it helps someone else going through this or unites me with a fellow caregiver – it will have been worth it. Writing is my outlet -even if no one reads it. I feel better for vomiting words on this page and getting them out of my brain – if only temporarily. xo