Why
do I find it so hard?
The
other week, when our freezer broke down and we suddenly had half a supermarket
full of rapidly melting food, I went straight into sort-it-out mode, mentally
calculating who we knew with a big freezer, who might be prepared to give us
some shelf space, who lived locally enough to transport it all and who wasn’t
on holiday or having their own nervous breakdown.
Underneath
that, calculating who, when the oven chips are really down, I could turn to for
unconditional support. It was frightening, because I couldn’t think of many.
Being
a carer for the past year and a bit has made me insular. My focus has been so
much on Nick, and outside that I’m often too tired or too preoccupied to
socialise much and try as I might my world has shrunk to a tiny core of family
and friends, many of whom I hardly get to see either.
If
we need help, the first point of call is usually some kind of organisation -
even though these are often hard to access, lengthy in process, unavailable,
unhelpful, or altogether useless.
But
the thing that has shaken me and left a lasting scar, is the loss of trust. We
had so many people offering to help before Nick came to live here, many of them
his old friends; where are they now? I have written about this before but the
hurt is deep. People who saw Nick once and then backed off. At least one friend
was honest when he said he was scared, but the rest just voted with their feet –
and their silence. A lot of people don’t know how to deal with Nick – this
adult, twitching and dribbling in an adapted chair with an alarm pendant round
his neck. They can’t understand what he’s saying, and on a bad day he won’t
seem to know you’re there or be able to talk much at all. We have friends who
are brilliant with him in company but I know would feel uncomfortable being on
their own with him because they don’t know what to do. It’s all very well for
me to say, “Oh, you don’t have to do
anything, just be there”, but I am used to it and even then it never really
stops being shocking, and difficult.
So
I have learned to be untrusting, to believe that there is very little support
and that in the end it is all down to me.
It’s
impossible to do it all alone though. Having a break while Nick was on his
holiday gave me the room to see things a bit more clearly.
He
had a marvellous time, by the way, completely delighted with it all, and I
think the time away really did him good.
But
we came back from our lovely holidays to find the merde really hitting the fan
at high speed. Now Nick has not just one nutty neighbour, but two. I’ve said
something about this on Twitter already and am not going to go into any more
details right now, but things are weird. I am feeling a bit out of my depth, and
this morning I rang a couple of friends just to talk to someone and ask for
their advice.
They
couldn’t help with the situation except to listen, but both offered practical
support – a bit of shopping, calling in to see Nick at a time when I won’t be
around, taking him to the optician - that will actually be a godsend.
I’ve
been quite amazed by their responses, and it has taught me this: that the voice
running round in my head telling me that no-one cares, no-one will help, I can’t
bother them, everyone’s too busy, etc etc, may have a point, but it’s not the
only truth.
I
have to keep asking for help and support – it’s not easy when someone says no,
or doesn’t answer your call, but you can only try and it’s worth a try.
Oh,
and the broken freezer – I clenched my guts and did a little round robin on
Whatsapp, and four people immediately offered space in theirs, including
someone who was on holiday but said they’d arrange it with their neighbour.
None of these people are close friends, but having the courage to ask does seem
to inspire a connection and has made us that little bit closer. My sense of trust is
still wounded and a bit wobbly, but our fish fingers and veggie burgers are
intact, and I remind myself to keep opening up and not trying to do every
little thing on my own.
