How Come You Don’t Call Me Anymore
The thing I find hardest to watch happening to my brother is not the awful chorea - and Nick’s is really severe - not the coughing or the choking for breath or even the falling over. It’s the passivity. He still has strong views about some things, like wanting to watch the rugby on TV, or asking me to buy a particular kind of chocolate that he likes, or being very determined to send his children some birthday money. But mainly he seems content to have life happen to him.
Enviable in a way, maybe, for those of us who struggle constantly with shoulds and oughts and want to’s and what ifs – you could say that Nick has transcended all this and found his Buddha Nature.
It is infuriating beyond telling, though, that communication has ground to a halt. He keeps his mobile with him at all times and one of his tics is that he needs to have his phone and a little black cube clock always at his fingertips so he can reach out and touch them. He probably does this twenty times in the course of an hour – he just doesn’t actually look at the screen.
We have spent hours changing the ring tones, getting the buzzer as loud as possible, reminding him to check his phone every hour (and he knows what time it is because of the massive station clock on the wall and the radio programmes he listens to all day) but it’s no use. He has the phone near him as a comforting thing, but not actually a thing with a use.
“Nick, I’ve sent you three texts today. Didn’t you see them?”
“Not yet, no”
“Have you checked your phone at all today?
“I’m sorry. I forgot”
He has a specially adapted landline with a flashing light and an extra loud ring but he either doesn’t hear it or says he can’t get to it in time. If we put it too close by, he just knocks it over, so it has to be put out of immediate reach as he needs it to stay connected to the citywide alarm service.
This time last year he was still picking up the phone to call me, sending me texts or replying to mine, and generally in full communication although he was increasingly finding it hard to press the right buttons on the keypad. Texting must be really hard for him and I keep searching for a solution but the real problem is that he just seems to accept a world where he sits on his own all day and no-one gets in touch.
It is immensely frustrating on a practical level because he is effectively a prisoner. He can’t go out on his own anymore. If the carers don’t turn up for some reason (which they didn’t the other day and thankfully I popped in unexpectedly) then he just accepts it.
On busy days when I might not have time to visit, I just want to check in and say hello and see how he is, but it is one way. He doesn’t reply.
The trouble is, I’m not just fretting for no reason: the danger is real. He has accidents, drops things, smashes things and hurts himself. He’s not really safe to be left alone for long periods. How can I know he’s OK? The only time he gets in touch now is when he thinks he’s running out of wine.
At his request, I stopped hiding the week’s worth of wine and put it all in one place so he knows it is there and does not wake up panicking – but this means he has no reason to keep in contact.
It’s as if he doesn’t care one way or another and I find it so upsetting. I know he does care and is delighted to have some company but it’s the apathy and closing-in of the illness that is horrible to be around and for all the changes we’ve been through, this is the hardest to bear.
As someone who’s known him all his life, watching him change like this feels painful all the way. I can’t get used to it and I don’t want to. But it’s the way it is and I must.