I had planned so meticulously for the eight weeks’ summer holiday after my son Alistair’s first year at college.
 I spent the first week training our two new carers, Katy and Jacques, the idea being that, by week two, they would be confident enough to be left on their own. I’ll never know whether it really was the dreaded swine flu or not but, on the Wednesday of the second week, Alistair woke up with a temperature of 104° and a raging headache. The doctor prescribed Tamiflu. At the time we had no idea that this drug can have side effects for young people that are worse than the flu symptoms themselves. The first pill prompted a day-long marathon of vomiting. We stopped the pills, and three days later he completely recovered, with no symptoms at all.

But, thanks to the ‘suspicion’ of swine flu, no carers were allowed near the house for five days, and his first respite weekend was cancelled. So, there I was – flung back into full time, single-handed caring again. By time Alistair had got better and re-energized, I had almost succumbed to fatigue and despair.
However, the original care plan has now swung back into action. Our wonderful Slovakian carer, Agnes (who lives handily up the road) comes in to get Alistair up, dressed, breakfasted and exercised nearly every morning – which takes about three hours. Then either Katy or Jacques take him on an outing, once or twice each a week. Alistair’s main problem is boredom – he needs to be kept occupied, which takes a lot of one-to-one effort; he doesn’t want to surf the internet, listen to music and watch TV interminably.  So far he has, on the rare days when it has not rained, been charging across the countryside in his all terrain power chair with a picnic; he has been to a concert, the cinema, a museum, an art gallery and the pub. Katy, who is an art student, intends to spend two days making a film with him, while Jacques is teaching him a bit of French.

Both of them, like Agnes, are beginning to decode Alistair’s dysarthric speech. So far so good.
Direct payments meant we could advertise for – and choose – carers independently. It was tricky finding the right people – young, intelligent, conscientious, sensible and above all, fun – but, in the end, we did.
I have been able to spend time applying for work for the autumn, as well as seeing to the endless ‘appointments’ – physio, OT, wheelchair service, and so on. I have also been able to spend ‘quality time’ with Alistair – minimizing the tiring, physically draining parts of the care and therefore able to just relax with him and take him out to things that interest both of us. Hurray!
The only downside, apart from the flu, has been the impossibility of going away. A friend had offered us her cottage, but I suddenly realised, during the flu week, that I just couldn’t get by without the hoists and ramps and equipment that we have at home.   Alistair is suddenly too heavy to lift, even with a willing friend – I have found it hard to acknowledge this. In future, holidays will have to be in accessible holiday homes with roll-in showers, ramps and hoists. I know that these are expensive – usually larger than we need and not necessarily in the wild parts of the country that we love.
However, to end on a hopeful note, I just had an email from the matchinghouses.com website, which matches up disabled people all over the world. Someone has a fully accessible flat in Islington which they would like to swap sometime for our ‘semi’ in Oxford. Alistair and I both love London but, due to his needs, have not been able to stay down there. So, let’s hope this might be just the thing for half term!
And is Alistair looking forward to his second year at college? “Kind of,” he says. That’s good enough for me.

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