A
visit to the dietician this week. She has a wheelchair scale like a treadmill that allows
someone who can’t use a standard scale to get weighed accurately. Different
wheelchair since the last appointment, so that got weighed first and then again
with Nick sitting in it.
We
hadn’t thought that he had lost any weight as his trousers seem to be fitting
well and not falling off him, and his belt is at the same notch, but alarmingly,
the scale says that Nick has lost 8 kilos since his last weigh-in in June.
That’s over a stone.
It’s
a lot for anyone to lose in six months, but for someone with Huntington’s it’s
very serious indeed. He just can’t afford to lose weight like that; any more
and he’ll be in real trouble. It’s one of the key signs of the disease
progressing. At risk of infection, pressure sores, respiratory failure and
pneumonia. A lot of people with Huntington’s die from pneumonia.
How
has this happened? Two reasons, I think: one, his incessant involuntary
movements have got worse, and it must take an awful lot of energy just to sit
in a chair. Even with his pureed soft diet, it takes a lot of effort to eat. So
for Nick, the most routine activities are fraught with hazard and use up more
calories than he’s been taking in.
We’ve
already requested a medications review to see if a higher dose can calm his
movements a bit, though I don’t hold out a huge amount of hope because short of
horse tranquilliser, there isn’t yet any drug that will actually stop the
chorea.
Second
reason for dramatic weight loss: meal timings. Despite my ongoing calls to the
office to complain, shout and plead, the timings continue to be all over the
shop.
Breakfast
has always been in the care plan at a time specific 9.30 – 10.30am.
I
used to get cross when I found that Nick hadn’t had his breakfast until way
after 10, but now that seems like a Golden Age.
Over
the last month or so, carers have been coming to get Nick washed and dressed
and give him breakfast between 11.30 – 12.00. Then he gets lunch about an hour
later, when he’s not really hungry yet.
Bear
in mind that he is not able to prepare his own meals and relies on a carer
sitting with him and feeding him with a spoon. If this is happening when he doesn’t actually want it, he
has no say in the matter.
Meals
are supposed to be spaced several hours apart but not too far apart. But having
had lunch at 12.30, on the days when I'm not doing his evening meal he may not get dinner until almost 9pm.
I
do believe that this is verging on abusive. It’s certainly on the spectrum of
neglect that you hear about when more extreme cases come to light in the
press.
When
I complain (frequently) I’m told that it’s because there’s been an emergency
with the person before Nick, but I’ve stopped buying this; they’re doing house
calls, not A&E, and even in this roller-coaster world of adult social care
there are only so many actual emergencies. They know I live nearby, and that if
there’s a reason they’ll be late to Nick, they are supposed to let me know so
that I can step in. But they don’t.
People
with HD need routine so that they can make sense of the world; waiting for the
carers to come makes Nick very anxious and of course then as well as being
hungry, his spasms get worse. He could help himself to a banana but he simply doesn’t
have the initiative, and that’s the illness too.
I
am so cross and frustrated about it and it didn’t have to take a visit to the
dietician to show that it’s not good for Nick’s health, but nothing is
changing.
My
complaints have now been passed to the contracts department at the council but
I’m beginning to think that’s going in the same direction as my complaints to
the care company. Nowhere. Even Tommy Cooper is disappointed (aka Cath, our
lovely social worker, who up to this point has listened to my woes and then
gone “just like that” and magicked some result out of the hat)
We’ve
got a meeting next week with her and one of the care agency admin staff – the
manager doesn’t even bother to reply to me any more and I wonder how many other
people are complaining and if he’s gone into hiding – and my finger is itching
to press Send on the howler I’ve drafted to the Care Quality Commission, but
I’ll wait until we’ve had this meeting and perhaps this will force a change.
Otherwise, we have to find a new provider, and this is the old mulberry bush
that we‘ve been round and around before – none of them have the capacity to
take Nick on.
So
let’s get Christmas over, and think about it all in the new New Year. We have
to build Nick up and get some weight back on, which shouldn’t be too difficult
in the festive season!
Porridge
made with extra milk powder, cream and honey; a mid morning hot chocolate with
extra milk powder and a chocolate flake; omelettes and mashed potato with
lashings of butter and cheese. He’s not supposed to have crisps or crackers or
anything that can catch in the throat but I can make him peanut butter on soft
toast dipped in a thick soup. I’m going to be cooking like Nigella this
Christmas, by the look of it.
The
dietician also suggests that I up his portions so that like an expectant mother
he is eating for two.
All
of this I can do, but it’s going to take some time to get all the carers on
message with this when they have only just understood the absolute basics and
can’t even keep to their contracted hours.
And
also – Nick is only barely making ends meet as it is and Simon and I have
stopped even keeping a tab on how much we’re subbing him, just to get by. And we're not exactly rolling in it.
He
doesn’t have enough income to live on. So how are we going to afford all this extra
food? The spectre of
the foodbank looms. We can manage, I know we can, but it will take more planning
and more time and energy. A lot more planning and energy.
I felt
really frightened at first, but my inner Jewish Mother has thoroughly told off
my inner whinger and got to work on the Nick-build up programme, and instead of
Nigella we’re thinking Jack Monroe as our guiding star.
Meanwhile,
Nick has taken his build-up programme very seriously too. He likes a chocolate
bar in the evening and I’d bought him four packs of soft chocolates and some
cake bars that I thought would last him a week. He scoffed nearly all of them
overnight.
“I thought the dietician would be pleased
with me”
I’m not
sure if the dentist will, though!
