Claire De Boer on her blog How Are You Using Your Words? wrote when talking about a friend with mental illness from alcohol and drug abuse: “… I’ve felt like I’m scooping a baby bird with a damaged wing into my arms. She feels so broken. So fragile. I would like to be able to rescue her, but all I can do is come alongside her as a friend, because there’s so much that’s out of my control. So much where others must step in. And so much she has to do for herself.“
In many ways this is true for people with dementia, and there are certainly days we can feel fragile and broken, especially when one (or more) of the symptoms of dementia gets worse, or a brand new shiny one drops into our world.
The best thing others can do for us is to empower us to look after ourselves, independently, for as long as is humanly possible, and to remain by our side as friends. Sadly, so many people disappear from your life after a diagnosis of dementia, a phenomenon experienced by so many around the world.
Staying with us, empowering us to help ourselves and not constantly wallow in pity is constructive and beneficial. Of course, there will be days we wallow in self-pity or sadness, as our worlds are disappearing. But I would dare to suggest, it is not a reason to die now.
Recently there have been changes in my symptoms, causing me to leave the cook top on all day, not noticing cars when crossing the road, falling over a lot due to visual and depth perception issues, and ultimately, having to get over that feeling of being broken and fragile, and take back some control. Using a walking stick to give my brain extra messages, and laminating a number of “Help sheets” to stick up around the house may well be embarrassing, but no longer not an option for me to maintain any independence.
The saying used when with my dear farming friends from Poochera, “Toughen up Princess” has been in play quite a lot lately! Mostly we probably just need some support with our broken wings, and some love and friendship to keep us going. Whatever we need to do for ourselves, to maintain our independence, needs to be done for as long as possible, regardless of how humbling it may feel.