We went back to the dietician today to check on Nick’s weight and blow me down, not only has he put back all the weight he’d lost before Christmas, he has gained another 20lbs. Actually, more. He weighs over 13 stone now, which is a good four stone heavier than I am. No wonder he is such a bugger to push in the wheelchair.
And no wonder his shorts didn’t do up when we tried them on the other day to go out on our picnic in the nice bank holiday weather. I noticed he was getting a bit of a paunch but just thought it was the result of all the feeding up and that it was better for him to have a bit of extra weight on him – well, the feeding up has clearly done the trick a little too well, especially as Nick is now taking three different fairly heavy duty meds to calm his movements, and they are definitely working. His spasms are much less pronounced and he is sleeping a lot. I don’t really like this, the fact that he is on the super heavy-duty knock-out pills, just like Ma.
But given the choice between the motionless flat-out slumber I see him in now, and the awful constant jerking and flailing and inability to get comfortable anywhere, anytime, ever – I guess that’s the way it has to be. At least his sleep is peaceful. So he isn’t using up anything like as many calories by just being alive.
We need to keep his weight stable, says the dietician, it’s always better for anyone with HD to have a bit of extra ballast, but that’s a lot of weight to gain in a short time and he needs to be healthy too.
So it’s back to semi skimmed milk instead of full fat, just banana with his porridge rather than cream and honey too, and although he’ll continue to have an extra tea time visit from the carers to make him a milkshake, he’ll just have that now and not the potato cakes or syrup pancakes to go with it. Job done. We have fattened him up like a prize bull. Now to put the brakes on a little.
Actually, I feel the same. After being so ill at Christmas and New Year, and then hurting my back and for two months not being able to exercise or walk for miles the way I normally would, I have gained weight too. I’ve not even been swimming as much. It has made me a bit depressed. I’m annoyed with myself for it, but at the same time, a slice of toast or two is sometimes the biggest comfort.
Now summer is coming and my back is much better and I want to be able to wear my nice dresses again and fit into my jeans without having to undo the top button.
So we’ll both be watching our weight, which makes me smile really. For the first time in our long and colourful history, I will be my brother’s Diet Buddy.
We always like going to see the dietician as she’s in a health centre in a part of town we don’t have any other reason to go to, and the shops there remind us both of Consett.
After leaving the clinic we went to the cool charity shop where Nick has always found new clothes, and bought him a pair of light trousers with a drawstring waist ( very handy) and to Poundland for a bucket and washing stuff so the carers can soak his clothes and bedding when he’s had an accident. Happening increasingly frequently although Nick is still either oblivious or not admitting it - I can’t tell yet. Then we bought a load of food to make some calorie conscious meals to kick off his new regime. Semi skimmed milk, lower fat cheese and houmous, yoghurts… at the counter, paying, Nick suddenly barked at the cashier,
“Where is your toilet?” Like a six year old, he’d sworn to me that he didn’t need to go when we were back at the health centre. Now suddenly he was desperate. The cashier looked blank. Not the sympathetic type.
Nick, I said, This is Poundland, not a public convenience! We’ll go back to the health centre and use the loo there. It's not far.
The kerbs in that area are not graded so not very good for pushing wheelchairs or prams. When that happens I might normally go round to the next chamfered kerb via the road, but this one is a dual carriageway ring road, the kind where the traffic never stops, so no. I braced myself to heave Nick up the last step onto the pavement, aware even more of his weight now that I knew exactly how heavy he was. It was the first time I had taken him out since I’d hurt my back, too.
I thought I could do it but, “I need the toilet, Sis!,” and he suddenly gave one of his unpredictable backward lurches and his arm flailed out, taking us both a bit off balance, and reader, I couldn’t hold on to him and the wheelchair tipped right over backwards, Nick landing with his legs in the air and his head in the road. I’d had a small bag of shopping over my shoulder and I must have dropped that as I tried to grab him to stop him going over, and all I could see was a smear of red on the black tarmac next to Nick’s head and I screamed.
“PLEASE! Can somebody help us!”
Two women in tabards came over from a café. Together we managed to right Nick and get him sitting up and then somehow, by the grace of God, manoeuvre him back into the chair, which now had a broken handle, one of the brakes snapped clean off by the force of his weight and strength.
“Are you all right, Nick?” I checked frantically for the source of the blood. Realising with relief that a bottle of tomato ketchup was smashed and dripping from my bag. Not blood, but good old Kensington Gore.
“I’m fine” – and he really did seem to be. As we’ve said before, he rolls like a paratrooper. But I felt horror and deep shame to have put him in that position, with his head in the road and cars whizzing past at 40 miles an hour. The bucket was broken, I’d had it hanging by the handle onto the wheelchair. Our shopping was squished. My hands and knee were grazed where I'd tried to get between brother and hard ground as the chair tipped over. But Nick was fine. Not only that but he had managed not to wee himself, which is almost more than you could say about me under the circumstances.
Anyway, thank goodness we were right next to the health centre. Mission accomplished, toileted, wiped down and checked over, we drove back home and installed Nick in his chair with a drink while I unpacked the remains of the shopping. I made him some lunch. Omelette and mashed veg, followed by banana and ice cream. He yummed it all.
He insisted that he felt fine and I went back later to check and make sure that he really was, and he was happily watching rugby on TV and asking me to hang up his new trousers. He was also looking forward to trying the low fat yoghurts we’d bought, miraculously unscathed after their adventure, and now washed clean of tomato ketchup and pumpkin soup.
The wonder of the decreased cognitive awareness and poor short-term memory!
Thank all our stars he was OK and no bones broken or any trauma as far as anyone could tell.
But I was in a state of shock for the rest of the day. Once again, I see that I can't do some things on my own any longer and need to recognise that. But I'm not sure where we go from here.