Just Trying to Help
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.