C is for Choice

'If I ever go that way, I'm going to kill myself. I'd rather die than end up like my parents.'

I've always found it relatively easy to talk about Dee's battle with Alzheimer's. Some have been more difficult to cover than others. But now, as we're dealing with much more challenging stages of this disease (because everything up till this point has been a walk in the bloody park), my focus has been shifting from the entertaining and heart-felt to the hard-hitting and serious.

So what better hard-hitting topic to discuss than assisted suicide? Oh yes. Is it harder to watch someone mentally slip away or physically disintegrate?

This has been something I've considered for quite some time, and you have the BBC to thank for this post. It was their brilliant documentary 'How to Die: Simon's Choice' that has led me to writing about it. Simon Binner was 57 years old when he was diagnosed with Motor Neurone Disease. The documentary follows his and his family's journey from diagnosis in January to his final moments before his suicide in Switzerland in October.

There were so many parallels between Simon's and Dee's attitude to life, but their illnesses are worlds apart from each other. Simon faced a completely physical deterioration, slowly losing the ability to walk, stand, and even communicate in any way. Dee, on the other hand, has nothing wrong with her physically (apart from the odd ridiculous outfit) and is instead becoming more and more mentally incapable of processing even the simplest of sentences.

And yet, they both end up needing a similar level of care. Someone to wash them, dress them, cook for them, help them communicate and navigate their way through every day life. The difference between the two is Simon is fundamentally the same person throughout his suffering, able to make decisions and be sound of mind enough to know what he wants until the very end, when he dies surrounded by his wife and close friends.

Unfortunately, for Alzheimer's and Dementia sufferers, the ability to choose is lost pretty early on. And then you're left with an existential dilemma. The Dee we all knew and loved before Alzheimer's consumed her would have certainly wanted to die before getting to the stage we are at now. In fact, she made a point of telling us on numerous occasions, normally after visiting her own parents in their care homes. But the woman whose hand you're holding to help her get to sleep at night really doesn't want to die. And who are we to argue that the Dee of today is less important than the Dee she used to be? At what point do you say she's no longer Dee, and is all Alzheimer's and fog?

I'm under no illusions that if Dee was still sound of mind, she would most definitely want to get on that plane to Switzerland. I'm finding it much easier to understand where she's coming from, having developed the same attitude myself.

Simon is able to say goodbye properly, enjoy the final few parties, gatherings and reunions and say all the things he wanted to say. This makes it even more important to me that the terminally ill individual in question is able to choose how and when they go. One of the hardest parts of watching a loved one with Dementia slowly slip away from you is the inability to say goodbye, have those precious final moments where you can acknowledge what's happening, help each other come to terms with the loss that is happening, and create some fond memories to keep hold of once they're gone.

The reality is, we lost Dee a while ago now and are unfortunately way beyond assisted suicide being an option for us. Instead, we're left with a shell of the woman she was, a tormented soul who paces around in a constant state of anxiety, who cannot grasp how to make a cup of tea, who can't wash herself, who hallucinates on a daily basis and hates being in her own company. Who, in their right mind, would want to live like that?

I'm climbing Mount Kilimanjaro at the end of this year to raise money for the Alzheimer's Society. Head on over to my donations page and help me reach my £5k target! Ah go on.