The speech
and swallowing therapist came to see us today. Despite all the excesses of Christmas, Nick has been having another
phase of not eating.
Too often
lately I’ve come in during the morning to find last night’s dinner still plated
up in the kitchen or a soggy ready meal taken out of the freezer the night
before but not touched.
What has he
had to eat, then? As if we couldn’t guess. No food, but on the counter there’s
an empty wine box alongside the uneaten dinner.
It’s not
just about the wine, though – he says that he’s been finding it much harder to
chew or swallow food, and this is alarming.
So with the therapist we look
at what sorts of things might be easier for him to eat. Goodbye, couscous salad
and coleslaw (too many little bits or rogue pieces that could catch in his
throat and make him cough) hello mushy peas and mashed potato. No more satsumas
to give him the pip, tinned mandarins or peaches instead. I am adamant that he needs fruit and veg, it’s just going to require a bit more thought and
preparation time from now on.
Nick will
also need some help spooning or cutting up his food as even with the good grip cutlery it's getting harder for him to manage. On a good day it's OK, on a bad day he needs someone to help him.
The
therapist said that she would contact his social worker to recommend that
carers have more time allotted in order to help him to prepare and if necessary, feed him his
meals.
However, the mandate for extending the current timings in the care package may take a
while so she will write directly to the care agency manager to make sure carers
understand and can take extra care when preparing food for him.
The manager
himself seems really on it and quite understanding about the problems around
eating; he says he’s had lots of experience with HD.
The carers themselves though
are another matter.
Today I
popped in at lunchtime as the carer was writing her notes. We chatted briefly, then,
“Did you do him any lunch?” I
asked. Sometimes Nick tells them not to bother because “my sister is coming to do it” (even when I’m not)
She
gestured to an unappetising looking pasty on the counter. Just slapped onto a plate on
its own, straight out of the freezer and still a bit icy.
"Is that it?" I said. (Like, Seriously, dude?)
She looked at me with surprise and utter incomprehension.
You know
those times when you just have to rein in your exasperation because
the person really hasn’t got a clue what the problem is? One of those. Because
on the whiteboard opposite and on a dayglo post-it note stuck in the care plan are reminders to carers to chop food up into
small pieces, and please include fruit or soft veg (all ready prepared in the
fridge) to make it appealing and nutritious. How hard can it frigging be??
