Wednesday, 5 February 2014

Car crash

Valery pointed out I'd published and then unpublished a blog, bizarrely about otters. I think I may not be able to explain the context of the otters in what might be a fairly complicated post, but basically I kept wanting to blog and then something else would happen and, well, this is what's been happening.

Firstly, my father finally got a diagnosis - Huntingdon's Disease. This is a degenerative brain condition, and it is genetic.

Dad is in his late 70s and I'm old enough to know that everyone has to die sometimes. All the same, it feels awful to read about the longterm prospects of someone with Huntingdon's, which usually involves full personal care and death by a secondary cause like pneumonia.

Then there's the more complicated genetic aspect. I might or might not have the gene. My family are quite long lived - we suspect my granny had Huntingdon's also and she lived to be 80something - so I don't know if there's any point in being tested now, as it'd just give me something to worry about (although apparently late onset in one generation doesn't neccessarily pass down).

But then, we'd been talking about doing another IVF cycle, possibly as an egg share. This throws up all sorts of ethical issues about screening and disclosure. To be honest I haven't even started reading about this as I'm too miserable about my Dad to start.

And then, secondly, there's the rest of my family's general bonkersness.

One of my sisters, who I don't generally speak to very much as I find her quite hard going, keeps calling up to rant at me about genetic diseases, and how inconsiderate my parents are (we'll come to that in a second). She stays at home, and to be honest I find myself so weary with work and trying to sort my own head out I'm just not in the right space to listen.

Then there's my Mum. Again, each of these could be a blog post in themselves. Mum has written a book which is partly about my brother dying. She has left this with my and my siblings to read when her and Dad go on holiday, after which she wants to self publish it. I really can't face reading it right now and, to be brutally honest, wish she'd drop the whole bereavement aspect of the book.

Oh yes, the holiday. Halfway through the diagnosis process, my parents booked a holiday which is something like a 24 hour journey, involving flight changes and much hanging around at airports. It is a self drive holiday in a country famed for violent crime, and they have picked three bases. I did have words before they booked it about the wisdom of doing this and insurance, but they did it anyway - and booked the cheapest and therefore least direct routes on offer.

They found out about the Huntingdon's less than 24 hours before they left, so while it's kind of nice they're having a holiday, I think they've been really fucking pigheaded to book something so ambitious when it turns out - for a start - that Dad can't do any driving. And, as my sister has pointed out, they've left without really making much effort to explain what the consultant said to anyone else.

And, well, the otters. Part of the reason I'm so worried about the pair of them going away is that, despite the fact that Dad has the degenerative brain condition, my Mum is the one that appears to have lost any semblance of common sense.

Among other probability defying beliefs, she is insisting an otter - and bear in mind this is unheard of in the town I grew up in - got into their fish pond and ate 18 big ornamental goldfish in one go, with the only trace being a dead fish left ten meters away. When quizzed on the unlikeliness of she becomes vague or dissembles; the otter must have hidden bits of the dead fish at the bottom of the pond (?), they were away for a few days and didn't know what happened, they were there and while someone might have stolen the (valuable) fish, she still thinks it was an otter. Because believing that a fat bastard of an otter did it is a lot less worrying and less immediate than someone breaking into their garden.

I don't know. Sorry this has been such a disjointed post, but my Dad being physically fragile and getting into what seems like an endgame, my Mum becoming so completely unreliable, my sister being a pain in the arse, and then having to start finding out about the likelihood of having Huntingdon's myself, testing, IVF, yadayada...

I'm usually a big believer in life being what you make of it and trying to find solutions, but I all of this seems so completely out of my control that I can't quite see a route out. Apart from maybe pretending that everything is the fault of the Otter of Doom.


  1. Pffffffffew, the car crash was a metaphor!
    I can imagine you feel completely jumbled.
    (and your grandmother was probably eighty something and not 8?)
    Just hoping their guardian angels travel with them and what might be your parents last major adventure trip

  2. Wow, I'm sorry about your father's diagnosis. The genetic issues are bad enough with one generation (my mother has Alzheimers and every time I forget something I worry that I will get it too), but to have to think about it in the context of the Boy and IVF etc, is tough too.

    And the Otter of Doom - I shook my head and had to laugh. Actually, the way your mother is behaving has reminded me of the way my mother is behaving a little. Is she having other behavioural/memory issues?