Unassisted dying, Parkinsons and cruel myths: #yesuntiltheend

A curled and wasted fist.

A curled and wasted fist.

Myth number 1: you don’t die of Parkinson’s. Website after medical article after clinician will tell you it’s not terminal. And most people, it seems, don’t. They die of complications after a fall (all too common as the disease destroys balance), or infections, or some other illness. Dying with Parkinson’s, not of it.

Except that people do die of Parkinson’s disease. It takes a long time and it’s not pretty. But when the failure of your throat muscles makes swallowing a challenge and you can’t control any bodily functions and you experience regular, frightening hallucinations, you might well take to your bed and stop eating. That’s dying of Parkinson’s, whatever the doctor puts on the certificate.

Voluntarily stopping eating and drinking (VSED) is a thing. I only just discovered it and most people refer to it in the context of cancer. Sophie Mackenzie’s excellent article in the Guardian spells it out better than I can. I will simply say that my mother has not eaten for an astonishing 27 days and has now refused all water for five. She drifts in and out of unresponsive sleep, but only today has shown any sign of pain. Her great care team are looking after her, and the wonderful district nurse has given her a syringe pump to make sure she is comfortable.

My mother very much wanted to die at home; her own commitment and other people’s care are making it possible. She is dying, at home, of Parkinson’s disease.

Myth number 2: the Falconer Bill is about disability. (The bill aims to enable assisted dying in restricted circumstances in England and Wales.) I have news for Lady Tanni Grey-Thompson and others who made this passionate but erroneous claim in the Lords debate. The arguments for a dignified death within your own control apply to my mother, to my friend’s father, Pat, to Sivan Butler-Rotholz who wrote so movingly about her father. And, yes, to Robin Williams.

IMG_0358

Setting out with Driving for the Disabled last summer. Her last drive was 21 July this year.

I don’t know if my mother, who has all her marbles, would have chosen to take the poison. We’ve discussed it occasionally over the 12 years she has fought the disease. She’s always had her pony-driving to look forward to, another birthday or a visit. She was still enjoying at least parts of her life before she became so ill a trip to Switzerland was out of the question. Maybe, given the option, four weeks ago, or even last week she might have said her choice was a swift and dignified exit.

I don’t know what she would have done. But, to those of you rooting to control other people’s lives, that is not my problem. I don’t have to decide that question. Instead, you need to explain why you refuse my mother, and many like her, basic choices about the way and time of the end of her life. I am not second-guessing other people, and neither should you.

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About Sarah Tanburn

I'm a writer, a sailor and a strategic adviser to public organisations. Visit my websites to find out more.
This entry was posted in Policy commentary and tagged , , , . Bookmark the permalink.

4 Responses to Unassisted dying, Parkinsons and cruel myths: #yesuntiltheend

  1. jhuwevans says:

    Hi Sarah,
    Just read this. Thinking of you.
    All the best.
    Huw

  2. Sending sympathy, best wishes, and admiration to you and your mother. It’s a tough time.
    Pat

  3. Pingback: #yesuntiltheend #dignityindying | Sarah Tanburn's blog

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