We
seem to have reached a point of equilibrium where, when people ask after Nick,
I can say, “He’s OK”
His
new medication seems to be helping to calm the involuntary movements and there
is a subtle increase in his mental alertness, somehow he is less foggy. I have noticed
that his drinking has stepped up a bit though, and he still isn’t sleeping
well; I think he was expecting miracles and with this bastard illness there is
no miracle.
But
generally speaking, things have been fairly calm lately.
He’s
got the new meds and a review appointment booked in with the specialist to see
if they need a further tweak.
We’ve
had his hearing aid repaired so he’s not quite as deaf as he was.
Carers
are coming in three times a day and it’s almost always the same people so he
can have a bit of a crack with them all and I know that he will be safe and
dressed and fed – well, most of the time as he still tends to tell them not to
worry, they don’t need to do it as I will be coming in to cook him dinner or
change the sheets – even when I hadn’t made any such arrangement.
He
has somehow managed to unpack and untangle all the wires to set up his CD
player so he can listen to music as well as the radio, and although it takes
almost a week, slowly turning into a frayed rag, he’s been reading the paper
rather than just sitting, drinking.
And
it feels good to have a brother again. Last night I realised we were having a
normal conversation; he asked about my day at work and I told him some funny
but unprintable ancedotes about my client and we heard a song on the radio that
no-one else would really get in quite the same way. I had been to my book group
at the library and come back with six books that I don’t know when I’ll get
time to read, and we talked about those too. We decided to try some of the
library’s audio books and I’m going to read to him (remembering how much we both used
to love to read a bedtime story to our kids, doing all the funny voices and sound
effects, though Nick says he gets enough of those with The Archers and I can probably
leave them out)
On
the other hand – the social worker is pressing for a more permanent care
arrangement as the carers currently coming in to him are only supposed to be as
a short term service. She wants a definite start date asap but the providers I
want (an agency I know have a great track record for sympathetic working with
Huntington’s patients) can’t offer anything for at least another month. It
feels as if we are on borrowed time with service provision as well as in life.
He
has not been able to have a shower for two months as the bathing equipment
issued by the OT didn’t work – even with two sturdy and experienced carers, he
slipped off the bath seat and banged his head so it was declared too risky to
use. They won’t even let him stand up in the bath on a slip mat and have a
shower that way. The down side of being in the system at last is that they have
umpteen rules, regs and Health and Safety policies and even when it’s his
choice they will not do anything that constitutes a risk. I can understand that
but he’s a man who loves a shower and it’s a terrible shame for him.
So
the bath seat got taken back to the Red Cross and it’s been a strip wash with a
bowl of water and a flannel ever since. The carers are good but even so, after
a random conversation with Nick about how things were going, I had to have a
word about heating the flannel up beforehand so it wasn’t cold and soggy.
And
then this morning I got an email from the landlord to say that they were giving
Nick a month’s Notice to Quit.
