Yesterday I had
one of those “hang on a minute” moments.
The
previous evening, Nick and I had gone out for a drive into the countryside and
eaten at a nice pub with stunning views and a fat old Labrador stealing chips
from under the tables.
It had been
a week of many meetings as his NHS Active Recovery support segues into an
intermediate care package from the local authority and so he’s seen me at least
once a day, every day. To my amazement the council carers are wonderful – and
he seems to be seeing the same people every time so they can better understand
his needs and build up a relationship. They’ve even done things like feed the
cats and hanging up the washing without being asked. I begin to feel that he is
being looked after well and that I can relax a tiny bit.
During the
periods I haven’t been with him I have been occupied in phone calls, meetings
and admin on his behalf so coming to work for a long day is in a funny way a
bit of a break. I’d reminded him the night before that I’d be at work til at
least 7pm so I wouldn’t see him til evening, and had popped in first thing on
my way to work and left a note.
So when
around lunchtime I got a text from him saying, “What are your plans for the day?” my feelings were…complicated.
He needs to
have social interaction, I see that, and it is very hard in a new place with
limited mobility to just jump up and meet people and make friends. So he is
kind of stuck with us. But the fact is, I can’t provide him with a ready-made
social network just like that. I can barely provide it for myself at the
moment.
And
socialising, as we’ve already said, is tricky; with the best will in the world,
people aren’t prepared for him, his sudden lurching about, his not being able
to get comfortable, his speech often hard to understand, his deafness. It can
be exhausting trying to hold a conversation and it can sometimes feel like you
are barking up the wrong tree even trying.
He is so
lovely and I wish we had more opportunities to show people that. I should do
more myself, invite people round, make the effort, I know – it’s just that I
was gearing up to do just that but these last few weeks since his accident have
taken up so much of my puff that it’s been the last thing on my mind.
I hate the
thought of him being lonely, sitting in the flat on his own. Stuck in his own
world, lacking the physical and mental wherewithal to break out, when I can so
easily put my own plans on hold and just nip over there to say hello.
I remind
myself of all the years he lived alone and how content he seemed then without
any real social circle or intimates. But geography has changed things.
It’s as if
that self-contained bubble he had then has suddenly burst and that now he’s so
close to family, to me and all that regular interaction, he craves company
again. And of course the illness makes him increasingly less aware of other
people’s agendas and more – I won’t call it selfish, but just more inflexible
when thinking of his own. But also, the classic apathy of Huntington's Disease as the basal ganglia of his brain corrodes, makes him less and less able to initiate things himself.
So he does expect me to be around more than somewhat.
So he does expect me to be around more than somewhat.
But it is
not my absolute responsibility at all times to make sure that Nick is
entertained and it is not my job to make him happy. Harsh. But true.
The burden
of his expectation weighs so heavy and I don’t know if it’s really from him or
if it’s my projection. Maybe he thought I had this great life, full of friends
and outings and spontaneous invitations and interesting things to do – and
well, I used to. But invitations have dwindled as my commitments force me to
cancel or revise, and there are so many places he can’t access and
conversations he won’t follow, and however central he is to my life these days,
it is just not appropriate to try to shoe horn him in.
And I think
– there is a place where I have to draw the line.
