16th October 2007 - Living nightmare 2

Today - again - the only words I managed to understand in 45 minutes. "Living nightmare".

Jesus Christ! Dad, what can I do to help you?

15th October 2007 - Living nightmare

The only two words that Dad saide today that made sense were "Living nightmare".
I could be reading too much into them. He said other words, he said "red crab", he said "pudge flower", he said "often we crunkle".

The 2nd in command entertainments lady was in again. Having a sing-song over the hoovering. She's one on the worst singers I've ever heard. And that's coming from someone who's 18 month old child used to ask her not to sing to her. "Mummy, please don't sing any more" - I was stung - but 2nd in command really really is shite.

She was trying to get Carol to sing, and she wouldn't. but she kept on at her "C'mon Carol - ye know this one, everyone knows Roll oot the barrel" and "Yer missin' aw the fun Carol, it's Tie a yelly ribbon - that's a braw tune".

After much goading, Carol stood, and with great dignity and grace said "I do not wish to sing" and sat back down. It had taken a lot out of her to do it, she's a frail and gentle soul, but I was two tables away and I heard her loud and clear. No ambiguity.

"Right, Carol, ye'll know this one though - join in ...Happy days are here again......."

8th October 2007 - Sitcoms

I had a daydream today - well everyone else was sleeping so I didn't feel too guilty - I was dreaming of taking Dad out to the foreshore of a sunny autumn day. All wrapped up, and tucked into a wheelchair. The sun warm on our faces and Dad cosy in the blankets. Seagulls circling and squalling above, watching the waves choppily roll towards the coast. But then I loose control of the chair and he runs down the hill, careering away infront on me, like a sketch from Victor Meldrew - I don't believe it - me running after him trying to slow him, trying to catch him, stop him plunging over the edge into the sea.

Funny thing the subconscious.

6th October 2007 - Huns huns huns huns

Gwyneth was sitting - I'd not seen her for a few days. But I really looked at her today. She was so twisted, so gnarled. Her pink fluffy slippers where the only clue to her sex, to her previous life as a much loved wife, and mother. Poor Gwyneth.

Dad was opposite her. Sleeping too. Lily and Bruce were fighting, throwing insults at each other. Why do the demented never forget their swear words I wonder.

Anna was sitting with two tumblers in front of her on her wheel in table. She was overturning them, one at a time, like a Tommy Cooper magic turn - Glass bottle, bottle glass.

Rachel paddled past us all, trouser legs rolled above the knee, edging her way tentatively round the chairs, checking the depth of the water carefully before plunging her foot, the leg into the sea.

Bertha trilled in the background "Hun huns huns father father father DWEEEEPPP
hun huns faither dweeeep" over and over again until climatically shrieking "TWANG YA BASTURD" and waking the room.

Dad blustered into wakefulness and asked me if I'd seen his pen because he needed to finish the crossword to catch the post, then immediately fell asleep again.

30th September 2007 - I'm not racist but.....

Remember when you were wee and playing tig or something similar you could shout 'keys' and that meant you were immune? "I'm not racist but..." "I'm not being cheeky but..." "No offense meant but...." even "Far be it from me to cast aspersions but " - as soon as you hear one of these verbal 'keys' you know that something racist, cheeky, offensive is in the offing or an aspersion is about to be flung.

Tweedle greeted me as I came in with a loud whisper "Thur's a new staff nurse. Canny miss her - she's anither paki - sorry - mind my french, I mean Asian. I'm no racist like but it's turning intae Little India here - or mibbes the Eurovision Song Contest wi all they Poles. I dinnae mind the Poles, at least they wurk, but oor Asian friend's are lazy fur one and I cannae understaun them fur anither. An' thur aw liars. Lie til thur black in the face - eh did ya hear me there - lie til thur black in the face! You couldn't make this up - whit am I like, I crack mesel up sometimes! But they ur though but, lazy , liars and cheats - see thur shops - the prices! Nae wunner they're aw sending money hame and got aw the flash cars and fancy schools." I wondered what I should say. I didn't agree with her but I smiled and rolled my eyes "Karen's a gem" I said and she agreed with "She's ok aye, she's like us though, you forget she's Asian half the time". Should I have said that I think she's wrong, that she is being racist? I suppose I should.

Just inside the day room I meet the new staff nurse. She comes over to talk to me about Dad but - fuck it - I can't understand what she says. I saw Tweedle mouth "See, tellt ye" as she passes.

Dad was sitting in a comfy chair in an arc of comfy chairs in the conservatory bit - where it really was like Little India because it was stifflingly hot. He was sitting beside Molly on one side and Cecily on the other. Molly was tapping her false teeth on the food infront of her and appeared bemused that they weren't eating it. Cecily was speaking to Dad - when I got closer I could hear her "You're a disgusting old man. You don't know who I am, you are disgusting. I'll be glad when you are dead you old bugger". She was pushing and poking him as he looked in bewilderment at her. Directly across from them one of the carers - Agnes - was reading the Daily Record. When Dad saw me he tried to get up. Cecily shrieked "Get away you disgusting old man!" to which Agnes responded without looking up "Leave him be Cecily, he's a harmless old man". I helped Dad to his feet and spoke for the first time saying to him "Come and we'll get away from Cecily and sit up at table. I'll make you a cuppa". Agnes looked up at the sound of my voice "Ohh, it's you Jeanette, I've jist sat down, you wouldn't believe the morning I've hud. Dinnae mind Cecily, she's harmless." Harmless huh? So I didn't just see her poking Dad, and Tweedle doesn't regularly complain she gets beaten black and blue by her? From somewhere I develop a bit of backbone "I'd rather she didn't poke my Dad though, all the same" and she says "Of course, but that's a one aff tha'. She's usually ok and yer Da's no often wi' her". I don't know for sure that Dad doesn't harass the hell out of the other residents but I'm sure all it would take to avoid residents being bullied, badgered and harangued is for the staff to be more numerous, more vigilant and more aware of the need for residents to be treated with dignity and respect. And this home is a good one.

13th September 2007 - Your Dad's bigger than my Dad

When did Dad become so small? He looks so fragile. He is so fragile, in so many ways, but so relentlessly, pointlessly robust in others. His eyes are sunken, his cheeks too. The whites of his eyes are snaked with red, clumpily cloudy, and his once rich, Cadbury velvety brown irises, ringed with milky blue. And his teeth seem blackened too - but maybe that's a side effect of his anitbiotics. I must remember to ask Karen next time I see her. He used to have lovely eyes, now I think of it. He always wore glasses, NHS ones at that, and he was never seen without them. His eyelashes were like a cow's,or giraffe's, or llama's - or any other animal that has straight eyelashes really. I suppose he would have been quite a handsome man had it not been for his skin, which was always a problem.

Immediately you see him now, you feel sorry for him. He shuffles, staggers, and slumps. I remember the first time I really felt deeply sorry for him. I was in my sister's house and I was trying to persuade him to come back to live in a care home. I had to tell him he had multi-infarct dementia. Moira, Colin and, to some extent, I had decided he should be told. I wasn't really convinced he should know, but I've never been very good at standing my ground, I usually assume that I'm wrong, that everyone else's opinion is more valid than mine. I told him about the tiny strokes he was having in his brain, that he needed help in day to day living and that he couldn't live alone anymore. He took in all in, he tried to keep himself together. His eyes - much brighter then - filled with tears but they didn't spill. Mine did, although I desperately tried not to let him see them. I didn't want him to know how serious it was, how awful his future was, but I need him to know it was something we couldn't ignore. Moira joined in and Dad listened more to her, and took it in better. Poor Dad. He tried, quite understandably, to come up with alternatives, but we didn't have any. I spend hours looking back, thinking what we could and should have done differently, how we could have prolonged his quality time. Horrible thing hindsight.

Careless Carer

Mostly, due to my liberal use of the 'f' word, the people who visit my blog ( you know who you are! ) are searching for something very different by way of content that what they find. And mostly - judging by what they where searching for that I see in the web hit tracker my lovely husband pointed me towards - it serves them right. They visit, realise that it's not porn, and off they go.

But, earlier on in the week I had a visitor who was a carer. She opened a whole new blog world for me to read via the portal of her's as she's linked to lots of other people who have relatives and loved ones who are ill. I've put her blog in my links and thoroughly recommend anyone that's here because they are interested in any aspect of caring to go there.

I am not a carer - I don't put in the hours, I don't have the grinding slog, the wearing down, the tedium, the seemingly endless burden of care. But loads of people do, and they have my genuine profound admiration. The job they do is awesome.

11th September 2007 - Are you dying?

Cecily sat with us today. Lily too, and Amy almost joined us. She pulled out the chair from the table, angled it and squatted to sit but her compulsion to move on kicked in before her arse even hit the cushion and she was off on another circuit. It's no wonder she's thin. As she was leaving I noticed two rice crispies stuck to her chin. Yesterday there was one rice crispie. I wondered absently if tomorrow there would be three and that one of the two was yesterday's.

I was surprised by Cecily - for months now I hadn't seen her walk of her own accord. She's been sat in an easy chair and then hoisted into wheelchairs and wheeled to 'the lav' or sometimes to the hairdressers, only to return with a glistening grey silver helmet of set curls. All the women come back looking exactly the same. Cecily used to be a doctor. Her flashes of self bring with them a deeper realization of what's happening to her than most. Her husband used to come to see her. He was in a wheelchair and cranky as hell. He used to get cross with her because she couldn't understand or wasn't communicating with him. She'd be so pleased to see him, she'd pat her hair into place and smile like the sun rising. He doesn't come any more. I don't know if he's alive or what. She still smiles these days but is a rigor smile - a demented smile that isn't warm, it's a baring of teeth and it's fixed. It doesn't reach her eyes. She's very difficult. Screams and shouts at the carers and 'batters them black and blue' according to Tweedle. But today she was using her zimmer. Walking round the residents having what looked like a nice wee chat with each of the waking ones. When she reached our table she sat down and asked Dad, Lily, Ellie and I "Are you dying? I'm not dying. I've got a wheelchair. I'm not dying. Don't believe them. I'm not dying. Are you dying". Ellie didn't like this - she's tenatively over the last few weeks been trying to get her head round death and what it means. "I'm not dying - am I Mum? And you're not dying are you? You're not going to die ever are you?" Thanks Cecily. "No, Mummy's not dying and neither are you. Nobody here is dying and we're not going to" I tried to reassure her. Dad's brain decided that this was an appropriate time to have his lucid 5 minutes and ventured him into the exchange with a blustery scoff "Of course you're going to die. Every one dies. Even you". Thanks Dad. Today couldn't be a day when he said nothing but elephants could it. Today couldn't have been a "We're on the Queen Mary sailing to Largs" day could it?

Lily diverted us with an enormous belch, one which shook her tiny bent frame. "Oh, pardon me hen, that's awfy rude of me - and infront of the bairn too. Canny take me anywhere eh? Still, I'm glad that came up the way - would of be a bastart if it came oot my ither end".

Ellie giggled at the burp - she does appreciate a burp - and was cheered for the while but she won't forget what Dad said. She forgets nothing.

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.