The anxiety
doesn’t go away though. It levitates me out of sleep in the early hours,
shooting straight up in bed like Linda Blair in the Exorcist and nearly as
crazed.
What if,
what if, what if…?? But the fear is not even as formed as that, it’s more like
a deadly gas that suffocates all optimism and all reason.
So the NHS
care has begun. So far, so good, and I have met two sets of evening carers and
been hugely grateful for their cheerfulness and calm. Do they even know how
heroic they are in my eyes? I keep half expecting to catch a glimpse of their
halos.
Apparently
a pharmacist will visit today to talk over the dose of medications and their
optimum timing – something I’ve been worried about ever since Nick came to live
here. Even at his most out of it, he has religiously taken his tablets morning
and night but over the last few weeks I’ve noticed that he’s begun to spill or spoil or even forgotten to take the night-time ones.
I have been
giving them since the accident and now the care team will take over, but I feel
very sure that the dosage is no longer right; Nick’s movements are worse, his
sleep and appetite are worse (from experience, a sure sign that he’s either
missed meds or they’re no longer strong enough) and something is off. I’ve been
around him and HD for long enough, I can just tell.
But the GP
can’t prescribe these meds, they have to be ordered by the genetic specialist –
we have been waiting since April to see him and still a month to go. Five
months. I’m wondering if the pharmacist might see the urgency and have the
authority to tweak the Olanzapine, or at least escalate the case to the
specialist. Five frigging months! How can that be right? In the northeast they
would see you within a week if there seemed to be an urgent need.
So I want
to see that pharmacist and Nick has strict instructions to call me if they
suddenly turn up. The Active Recovery team have been arriving unannounced on
his doorstep and only getting in touch with me if they can’t gain access, so I’ve
stressed to him that he’ll need to let me know when they come.
Around
midday I text him to see how the morning call went – did they turn up as
planned and hope it wasn’t too early – he is a bit of an owl by nature and it
will be a shock for him to have someone waking him up at 8am. And don’t forget
to let me know if the pharmacist comes.
I get a
reply:
“I had a nice shower and she dressed me and
then I had two visits to check”
Me: “Check what? Not your tablets?”
Nick “I think so. I’m not sure”
Me: “But you were supposed to let me know when
anyone else came!!”
Nick: “Sorry. I forgot”
He can’t
help it. It’s the illness. The bloody illness. But I’m so infuriated I can’t
speak.
I don’t
reply. I can’t do any more of anything to do with him for the next few hours; he’s
safe, he’s clean and dressed and fed, he wasn’t expecting to see me til later
anyway. I have to change gear, find something to smile at, get my life back
into perspective until I can see straight again.
Does it
even really matter, says my husband. Yes!! No. I don’t know.
I just want
to make things right for him when so many things are so very much not alright
and he has so little luck on his side. Over the last few turbulent months it
has felt like an ongoing, constant fight to get any support at all and now
suddenly we have some – I’m not quite used to it.
Are we finally
in safe hands here? Time will tell. But Nick seems happy and that is what matters
most.
