Thursday, 16 October 2008

Wee'll Meet Again

You may feel this blog has strayed from the disability issues theme, what with parties, sick children and elephants of late. Well never fear, the disability factor is back. You may want to cross your legs for this.

Polly, as you know, has recently been accepted to train as a Clown Doctor. This involves a training schedule that would stretch your average neurosurgeon and which started this week. From Tuesday she has had to be in Islington or at Great Ormond Street Hospital for Sick Children by nine o'clock each morning so has had to leave by 7.00am and does not get back until 7.30pm. This has involved some pretty fancy childcare arrangements and a great reliance on family and friends to get the boys to school (particular thanks to Andi, Emma and Pam) and to cubs, swimming and what have you.

I feel I should say at this point that on more than one occasion Polly has been assured that if she wants to work full-time then she most definitely can. The whole social-care system will facilitate her to fulfil her destiny and will step in to help provide care for me should the need arise. Her needs are every bit as important as mine. Thus reassured Polly and I feel that a bit of Clown Doctoring is well within the realms of feasibility and a not unreasonable ambition. Polly wants to do it and I want her to do it, too.

Kalepo and Godfrey come and get me up and can hang around until about 10.30am, so the last time I can go to the loo is at about 10.00am. Polly therefore dutifully rang my care manager and told her the situation, giving her the dates and asking if it could be arranged for Kalepo and Godfrey to pop in mid-afternoon over the course of the 4 days to give me a hand. No. Since I've been transferred from social care to medical care it would be cheaper if the district nurses came instead. Okay. Two of them came around one afternoon and Polly and I explained the procedure. All well and good.

Tuesday came and my mother-in-law Pam came over to take the boys to school. As it turned out Sam had been sick again and was off for the day so she kindly stayed here to look after him. The hours passed and there was no sign of any district nurses. Pam had been supplying me with a steady flow of coffee and so by late afternoon I was beginning to really feel the need for the loo. Eventually, I had to ask Pam to help me. She graciously and with good humour pulled legs and passed bottles and generally helped me get sorted.

You may be wondering why I didn't phone the district nurses and simply ask where they were. This would tell me you have never had dealings with district nurses. They are akin to the gold at the and of a rainbow, forever just out of reach. You can't call them directly and so have to rely on messages and answer machines. Or, just as effectively, ESP and smoke signals.

That evening Polly rang, left messages, released carrier pigeons, and so on. Wednesday would be sorted. A good thing too as there would be no Pam around today.

You can probably guess what happened. Nothing. Without Pam around I had been able to severely restrict my fluid intake, but, even so, nine and a half hours is an awfully long time. To make matters worse I had to take the boys out to tea and take Sam to his swimming lesson. Splish splash. I made it, but if there are awards for iron will and endurance I deserve one. I was relieved in so many ways when Polly finally came home.

That evening there was an extensive, frank and comprehensive phone exchange between Polly and someone at the district nurses administration. Finally, everything was sorted.

Which brings us to today. At 1.00pm two nurses arrive. I hardly need to point out that 1.00pm is not mid-afternoon. Still, only six and a half hours 'till Polly gets home. Fingers (and legs) crossed.

1 comment:

  1. I've been reading your blog for a while now. I have MD too and it's really helpful for me to read your stories.

    One thing that gets me though - why don't you use live-in care? I have used 24 hour live-in PAs, directed by me, for ten years. I would never go back to having to go to the toilet and go to bed only when the care staff turn up. OK, so it's a bit weird having someone around all the time, but you get used to it. And the point is that you can ask them to leave you alone if you want to because you are in charge.

    Your care needs are far higher than mine so I don't understand why you don't have a 24 hr package. Is this postcode lottery at work or do you just not want it?


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