Saturday 22 November 2014

D is for Dementia

I'm not going to lie the past six months have been a mixture of sheer despair and desperation, I cry and cry I accept the situation then I can't then I cry.You see my mum has gone from a bubbly woman who gets bored of the perfectly lined Laura Ashley wallpaper and turns it into something out of Country Living with her own two hands, to a woman that sits before me struggling to put a glove on her hand, when in fact its not a glove its a manky old sock. I want to say hey mum that's a sock lets get you dressed you can act normal now please joke is over, really really long joke is over now. But I can't because my mum's personality has completely changed she is no longer my mum, she even smiles differently.

The trouble is she doesn't believe she has a problem each appointment (and believe me there are many) we have to trick her into going with the promise that we will take her to a garden centre or for a meal. She never knows why we're there and we have doctors with zero empathy trying to get us to say whats wrong in front of her without completely hurting my mum's feelings, how do you say yes she sees imaginary stick men who make jewellery and she doesn't wash or clean her teeth anymore, she calls a clock a box with numbers oh but besides that everything is fabulous.

My mum has a history of depression, booking holidays and then crying on the bed saying she doesn't want to go at the last minute, she had little to no social life her home was her life hence where I have inherited the passion for interior design -  I had a drill in my hand at age 11. Now that home stinks is unkempt, no pristine bed linen not plush cushions. Then there is the dramatic weight loss that had us stumped see she doesn't remember to eat she's gone from a voluptuous fourteen stone woman who relished eating clotted cream and scones at 10pm whilst watching Downton to a mere six stone shell who can't turn the television on, and when I turn it on for her she cannot concentrate on it for more than a second.

Me and my sisters sought a diagnosis back in July its only this Wednesday when I received a call to say that my mum has swollen ventricles. I ask the consultant 'so do you think its dementia' her response 'from what you've told me' oh dear. And to top all of my poor dad has to deal with my mum knocking on his wall (they are separated but live together families eh?!) at 2am to say can we go to Sainsbury's. My dad can't cope as he had a head injury when I was four, so getting him to persuade her to take medicine involves him remembering. This is where the social services step in, but that's another hurdle we have to leap. Then there is the constant guilt of me not being there enough but when I am she is agitated and confused as to why I'm taking the scissors, digital camera, notepads, 15 cushions off her bed. And when I leave the house I feel relief then a wave of gut wrenching guilt, I should move back in, I should quit my job, I should dress her myself, I should I should do so many things but she doesn't want help.

The purpose of this post is for me to both have a cathartic vent but for anyone else who is going through the same to not feel so completely alone, and to raise awareness that when you see that person wandering down the street clothes on back to front hair unkempt they're not scary or loopy they most likely have dementia.

I hope that if I reach sixty seven like my mum is and I get dementia that there is a greater understanding and awareness of this cruel disease, I know many many people who go un-diagnosed and having to wait five months to get my mum's just shows how desperately the process needs to improve.

If Terry Pratchett can live with this disease I hope my mum can to.