Dementia and me....

My mother.... Christmas 2005... at our house, Christmas, well groomed, loving being with her family....

My mother... Christmas 2013... a shell of her former self. If she had any idea I'd be showing this photo she'd be mortified....

Is it wrong that I wish my mother dead?

Is it wrong that I see her, at best, every six months?

Is it wrong that she's effectively dead to me already?

My mother has been suffering with Alzheimers for many years now. She's two and a half years in a home, my dad (almost) finally free of the guilt putting her there caused, finally getting some distance from her.

It's the long goodbye.

My mom and I were never that close, the relationship fracturing in my teens, never really to recover. Looking back I start to question how much of the intractability, the fury, the obsessive nature that I remember so well when I remember who she was, was actually merely early signs of the dementia to come. In some ways I'm grateful that our relationship became toxic, as it saves me from the pain and guilt of seeing her this way. In other ways, it makes me sad and guilty that I'm not deeply affected by seeing my mom laid low by this horrible disease.

She'd seen her own mother go through it. I remember Grandma Hancox suffering from dementia, seeing mom go to her house, get upset, chastise grandma for doing all the stupid, illogical things dementia sufferers do, all the lost clothes, al the boiling kettles dry stuff. And I remember how upset she was by experiencing it.

She always said, only half joking, that if ever she started showing those same signs, we should put a pillow over her face and end it all then. Thing is, I knew she meant it.

God knows, when I say the same to Louise and Molly, I know I bloody well mean it.

Suffice it to say, Louise and Molly already know my wishes.

I do hope by that time wiser heads have prevailed and we have a reasonable assisted suicide route in this country. My wishes are simple, as soon as I start showing signs, Louise is instructed to thrust fags, cigars and G&T into my hand (fuck it, I'll hopefully have been quit 30/40 years by that stage, but lets make those final years pleasurable eh?) and let me get on with it.

The key moment is when I don't function properly, stop enjoying reading, find my cognitive abilities restricted. Louise will be the best judge of that. And then it's simply a case of booking me in to the clinic, feeding me gin, and fags, and cigars until the end, one last night to see the stars and then goodnight. Terry Pratchett may want to see a final sunrise, I've always been a nightowl, I'll be happy seeing the stars when I go out.

If they can cope with it I'll have Louise and Molly with me at the time, both of them reading from Richard Bach's Jonathan Livingstone Seagull.

If they can't cope with it (and no guilt if they can't) a nurse will do the job instead.

An overdose of whatever is legally (I hope) mandated will see me to sleep. God knows that is so much better than the hell I see my mother go through whenever I see her.

I wish my mother dead. I don't think that makes me a bad person.

What makes me a bad person is that I don't walk into her care home tomorrow and do the bloody deed myself.

Terry Pratchett: I Live In Hope I Can Jump Before I Am Pushed...

There’s a Terry Pratchett feature and article on the Daily Mail website written earlier this week dealing with the difficult and emotive issue of assisted suicide. His comments come in the wake of the ruling in the House Of Lords over the case of Debbie Purdy (BBC) and, as you might expect from Terry Pratchett, it’s impassioned, emotive and most of all a shining light of simple, plain, reasonable common sense.

As you probably know, Pratchett, 61, was diagnosed with early onset Alzheimers disease in 2007 and has since become a very public advocate of greater research and greater understanding of the disease. And although it’s sad to hear the man talk about the day he will decide he wants to end his life when the disease takes it’s toll and takes his words away it’s also a very positive and thought provoking piece.

“We are being stupid. We have been so successful in the past century at the art of living longer and staying alive that we have forgotten how to die. Too often we learn the hard way. As soon as the baby boomers pass pensionable age, their lesson will be harsher still. At least, that is what I thought until last week.

Now, however, I live in hope – hope that before the disease in my brain finally wipes it clean, I can jump before I am pushed and drag my evil Nemesis to its doom, like Sherlock Holmes and Moriarty locked in combat as they go over the waterfall.

In any case, such thinking bestows a wonderful feeling of power; the enemy might win but it won’t triumph.”

We've seen Alzheimer's in our family. My maternal Grandma had it. I was too young to fully grasp what was going on but the memory of how badly it affected both my Grandma and mother are enough to convince me that Pratchett is talking complete sense. And I know that if I'm ever unfortunate enough to suffer from it in later life I'll be making exactly the same plans as Pratchett. And like him, I can only hope that sense and humanity prevails and by that time it's no longer a requirement to skulk away to Switzerland in relative secrecy and snatch your last moment of free will miles away from home.