7th September 2007 - The relatives are the worst

I spoke to Tweedledum today. I'd noticed a new resident - she's called Katie - and was asking her name so I could speak to her when I got a chance. Tweedle told me but the went into one of her monologues "She's jist been sleeping since she came here from the hospital. A lot of them dae tha'. The notes we get wi them are useless. We jist bin them, nae wurth the paper thur printed on. Might as well gie them tae Lily tae wipe her erse - and she wud an' aw, she's nae fussy that yin - so we jist ignore what the notes sez and gits tae know them oorsels. The relatives are the worst tho'. They'll tell ye all the shite aboot their relative but they've nae goat a clue aboot them." She must have had a flicker of consciousness or maybe seen a flicker of something cross my face because her next was "No you though Janice" - my name's Jeannette - "you're no one of those that's mouthin' aff, wantin' this and that fur thur Maw or Da and clueless aboot what thur like. You're one o' the one's we like". I don't think I'd be pleased even if I thought it was true. Maybe I would. I don't know. I know I could not do the job she does - if I could he'd be at home with me now - but I don't think I'd be like her doing it. Am I wrong in thinking it's important that vulnerable people like Dad, like Lily, like Amy, like 'Stinky Susie' - Tweedle's name for her - or 'Creepy Callum' - Tweedledummer's name for him - should be treated with more dignity, more respect?

I want to take him home. I want him to live his life with me and my family. I want him to have birthdays, holidays, Christmases and Hogmanay's with us. And I want him to die with me. I want to be there. But I can't see how I can. I don't have a room for him, I don't have a downstairs loo, I have 2 kids, one not at school yet, and I need to return to work pretty soon to help take the financial burden off my husband. To get a bigger house, I need to work and then I wouldn't have the time to be there. He needs 24/7 care - or at least 24/7 on call. He'll get up and wander - who knows where, who knows when. He'll need changing. Up until recently, I thought I couldn't face that, but I've done it now, and it's not that bad. The worst thing isn't the smell, the shite, it's not even the dealing with the feelings about 'changing' Dad rather than a baby, it's Dad's face, his demeanour, his humilitation when he knew what I was doing, knew that his daughter was wiping his arse. I know he doesn't want that.

I need to take him out more. I need to make time, between the school and nursery stuff. I need to take him out. I'll try for the once a week outing idea. If he'll want to go, he doesn't always.