Wednesday 29 August 2012

This Bitch, MND!


I’m crying now, most everyday
This MND won’t go away
It crept along at a slow pace
But now affects me from toes to face
The latest aspect to appear
Is loss of arm strength, and I fear
With it goes my independence
Inability to feed myself makes me tense
Increasing need to rely on others
Makes me feel like a child and its mother
My husband now has to spoon feed me
But with his bad eyesight he cannot see
He’s constantly feeding my chin, nose or cheek
I spend much of each mealtime trying hard not to shriek
‘Higher, right’, or words like this
God, when I fed my children it was ‘a piece of p**s’!
My OCD doesn’t help the situation
It only adds to my severe frustration
Can’t blow my nose or scratch an itch
I can assure you that MND is a ‘bitch’!!

Thursday 16 August 2012

Carers and........stuff!

Having just read Steve Evans post in which he commented about carers I thought I'd relate what happened to me this morning.

When a person has to accept care from unknown persons due to disability it is a hard pill to swallow. Accepting the indignity of someone other than your family seeing, let alone touching your most private 'areas' is extremely stressful and adds to the turmoil of an intolerable decent into total dependency. So, getting to know these carers and having a relationship is as important as them understanding your complex requirements. I completely empathise with Steve when he finds constant changing of his carers particularly stressful. Not being able to communicate verbally only compounds the issue.  I spent months speaking to the agency which provides my 'continuing care', trying to ensure that I had my two favourite carers as much as possible. Things were fine except for weekends when I'm only allowed one of them and another carer accompanies that one -she's not at suited to caring and after 2 months still stands around and has to be told what to do. Bad enough. But this week one favourite was on holiday and 2 days running having, last week ,sent a rota with a carer I knew listed along with my favourite, they sent 2 different people, one one day and another the next!

(I am trying to avoid a hoist for as long as possible and since my ridiculous OT service refuses me a standing hoist I use  a walker to stand up and have shower chair and wheelchair wheeled up to and away from me. Complex and scary? Yep; so, do I sue the OT for putting me in this position due to their shere bloody mindedness?).

At least for those 2 days with 1 favourite carer things weren't too bad. However ....... now, both carers away till Monday and this morning  I had one of the new ones and 1 who'd been 2x abot 8 mths ago. It was pretty grim culminating in me being run over by the wheelchair and then, with the wheel caught on my ankle, me nearly dragged to the floor! I must admit that the wheelchair driver was trying to avoid my daft cat, Harry, who's socialising includes watching my daily ablutions! But the problem was that the carer couldn't control the chair. It was like giving a 16 year old a Ferrari!

Apart from a few very choice words, mostly beginning with 'eff' and a sore, bruised ankle, it was terrifying and exhausting. How I managed to get part of my bum on the seat of the wheelchair was a miracle. I was lucky that I could converse with the agency and tell them that I refuse to have 2 complete novices coming to do my care - Steve can't.

For me, it's 'roll-on' Tuesday when things will revert to 'status quo', until the next holiday, or one or both leave. It's ridiculous how my days are ruled by the stresses of which carer will come, how long do I fight for a standing hoist (2 years so far), how long do I wait for a comfortable cushion to sit on and a wheelchair to go with it so that I can successfully access the outside world ..........................and so on and .........