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.
