Alice by Debbie Bennett
I’m writing this in my parents’ lounge, looking out of the window. We’re at the head of a cul-de-sac at the very end of a small-ish estate and it’s a lovely view. My dad is asleep in the chair next to me.
Has anybody else read Still Alice or seen the film? I’ve just gone hunting on Amazon and realised that it isn’t actually based on a true story, although it certainly seems that way. I can’t imagine what it must be like to know you can’t remember stuff. To be constantly scared and where reassurance lasts minutes before the fear starts all over again. I can’t imagine not being able to read – not wanting to read – or where the imaginings of a damaged brain become stronger than words on a page. When you can’t separate fact from fiction, what happens when there is nobody to help you?
This morning was the first time he asked me who I was.
I’ve not stayed overnight here for a long, long time. I’m only here now because my mum has gone into hospital. She’s only had a minor operation but given that she’s in her late 70s (and that she went private), she’ll be in overnight. She left at 6am, so I came over yesterday and will stay for a few days to make sure everybody is OK. The hospital phoned an hour or so ago and the op went well, which is good news.
Alzheimer’s is a shitty disease. The brain stops making the right connections and while dad can remember my childhood, he can longer recall a conversation he had five minutes ago – or where my mum is today and when she will be home. He’s scared, distressed and out of sorts, if he’s even been in sorts for the past few years. He doesn’t hear very well these days and he doesn’t watch television or read anymore; he was a prolific reader when I was young and he encouraged me too. I remember him working in Liverpool and stopping by the bookstore every week to buy me the next Enid Blyton Famous Five book. I was five and just a year too young to be one of the Five – a fact which was hugely disappointing as I so wanted to be able to go off camping and have wild adventures!
My dad’s world has shrunk. From bedroom to armchair and back to bedroom, with frequent side-trips to the bathroom. He’s good-humoured and so appreciative of my presence, but is all too aware of his own failing mental state. He sleeps a lot and has random dreams and I wonder what it’s like inside his head. My mum is clearly his anchor in reality and without her, he is utterly lost and floating untethered.
I'd like to say I don't know how this will end, but the reality is of course I do. I've been saying goodbye to my dad for a couple of years now as he slowly disappears like the Cheshire Cat did in front of another different Alice in another different world.
Comments
One happy memory though was when Dad, still fine at this point, and I had gone to visit her in her care home (an excellent one too). We were talking with her and she burst out to tell us she knew who we were. She then grinned and said "You are you and I am me". We all laughed. She lost the power of speech not long after that but it was a glimpse of the old Mum just for a moment. Hope your mother is soon on the mend.
Must admit I find it difficult to read/watch anything to do with Alzheimer's.
Lisa Genova is also a neuroscientist and many of her characters suffer in some way neurologically, as she documents how the families cope.
Her book Left Neglected is also worth reading.
I came through Mum's illness with a profound resect for the absolutely gallant fight the brain puts up when it's dying. What really upsets me is the stupidity and complacency of people who don't have the imagination of common humanity either to 'get it' or understand that they don't. (not you - ' professionals')
But I won't start a rant now as I've got a blog to write!
Potentially, dear Debbie your father has as much to teach you now as when he used to buy you the Famous Five. Hurts like hell but a huge, humbling, life experience.
In my opinion anyway