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.
