I have been
pressing for ages for Nick’s care provider to have Huntington’s awareness
training for their staff. They can have free specialist training, the council have said
they’ll foot the bill for the staff time, it’s professional development, surely a
total no brainer?
It’s been
recommended all along by the speech and swallowing specialist and the NHS neuro
team, and they said they’d willingly do a free session for the carers any time
they like. Diana, our regional advisor from HDA, has also offered to do a session
for a minimal cost, but the care manager has been dragging his feet.
Meanwhile,
I’ve continued to wring my hands over their constant misdemeanours: kitchen
surfaces awash with spilled wine and the bathroom floor unspeakable after the carers have just left;
microwaved meals heated up on “Defrost”; food I’d put out for Nick and labeled
going ignored: forgetting / not bothering to give Nick a pudding or gravy as
requested, to increase his calorie intake and make it easier to swallow; presenting him with an entire chocolate cheesecake for dinner; feeding him while standing
over him looking bored, spoon in one hand and checking their phone with the other.
Good
nutrition is one thing but basic common sense is surely the most crucial thing
of all. I’ve been a carer myself and you do need to be on the alert all the
time, checking your client's signs of well-being from minute to minute like a cut rate Sherlock Holmes, with eyes in the back of your head for an ongoing risk assessment. But
they simply don’t seem to notice the glaringly obvious.
Anyway, to
my amazement they finally had the training this week and all the carers who
Nick currently sees were there.
Afterwards
I got a memo telling me that I am not buying the right kind of food for Nick as
he shouldn’t be eating pasta at all (his favourite) but needs soft, fork-mashable
foods that are easy to swallow. And a high calorie diet with lots of added butter and cheese, so please make sure that they are available.
Oh, right! I was quite indignant that they
should have two hours of HD awareness and suddenly they’re the experts. But at
the same time I was really pleased that at last perhaps they get it, and that
they want to be involved more directly in Nick’s care. We’ll see how things go
from now on, but I do have some hopes that these niggles will start to improve.
I’d like to think we can work together rather than me always having to tell
them what to do, and them feeling wrong footed.
It also
reminded me that I don’t actually know it all, and in my quest to protect Nick
and look after his health and nutrition, there will be things that I’ve missed
too. Sometimes it takes a fresh eye, or someone fresh from training, to see
these things and point them out. They’re right about the pasta – I’ve been
noticing for a while that it is getting much harder for him to eat it, and it’s me
who’s been resisting giving him a diet of mashed potato and pureed food because
I can’t bear its implications. There’s no looking back from the puree, is there,
not unless you’re a baby.
With this
in mind, I had to laugh today. Nick went for lunch with one of the friends who
occasionally takes him out, and they went to a pub. She is sensible and knows
all about the importance of nutrition and what not to feed him in case of
choking. She has seen his struggles to eat and doesn't flinch at having to help him.
“What did
you have to eat?” I asked him later, when he was telling me what a good time
he’d had.
“I had ham,
egg and chips” he said.
“Goodness,
darling!” I said. “Did you manage that Ok?”
My friend
later confirmed that he had eaten the whole lot, and all on his own, every
bite. It took him half an hour but it's just what he wanted. Where there’s a will, there’s a way, I guess, and it looks as if it’s not
all just mashed potato quite yet.
