Nick’s
birthday seemed to come around again very quickly after Christmas.
I was still recovering from a second bout of the horrible flu and still not quite right –
weak, exhausted, fuzzy headed and feeling utterly thrown by the smallest thing.
Hadn’t spent much time with Nick, not wanting to pass on the lurg.
I’d got his
presents already – chocolates, a new clock and some Velcro fastening slippers -
but the thought of having to organise a celebration just felt absolutely one
step beyond.
The trouble
was, Nick had been talking about this year’s birthday since around June last
year. I’d been pushing him in his Red Cross wheelchair on one of the first days
of the glorious heat-wave, celebrating a perfect summer morning, and he’d
started talking about January and the birthday party he wanted to have. Nothing
like thinking ahead, I quipped. But for a few weeks, while most people were
thinking about ice lollies and sunscreen, Nick was inviting anyone he met to
his party – six months in advance.
Well, in
the end, most of the people from out of town couldn’t make it so early in the
new year and so soon after Christmas. But somehow, despite me not having my eye
on the ball and then Simon going down with the flu himself, and despite him not
using the phone anymore or ever going out unaccompanied, Nick’s invitations had
hit the bulls’ eye and LOTS of people turned up.
Another
lesson that sometimes I don’t have to it absolutely all. Admittedly, there
wouldn’t have been any food without me, and Simon had heroically staggered to
the supermarket and bought a load of drinks. And I had been fielding texts all
week about the logistics. But a lot of the actual inviting was down to Nick.
And it was
such a lovely evening. Another swell party that was. We couldn’t have wished
for more.
One friend
had made a fabulous chocolate birthday cake with sparklers on top, another had
made a quiche at Nick’s request, everybody brought him presents and cards and
he spent the evening surrounded by well-wishers and friends – and surprise
guests of honour his ex-wife and children, coming all the way from the north
east on a school night. Ok, well that was
my doing.
But it all reminded me to keep giving Nick more credit for acting independently, and to
give us both more breathing space.
It is so
easy to flip into permanent emergency mode when there is constantly so much to
be done, and Nick can do so little of it himself, or half the time even
understands the need. I know realistically that none of those people would have
been there the other night without all the back up that Simon and I give, all
the time.
But the
flu, not being available or hands on, having to ask for more help, has altered
my thinking.
First of all, Nick still does have an independent life to a higher degree than I might see, even if it is mostly internalised.
Secondly, I really cannot do it all and the only person who expects me to is me.
I’m still trying to figure out how other people can help, because many
friends have said they’re willing, it’s just that I can’t quite summon up the
brain power to put it all together.
Maybe send out a weekly or fortnightly list
of tasks and social spaces, time-tabled to fit in with existing appointments
and the carers coming in? It’s worth a try.
Has anyone else tried this? If you’re
a carer yourself, what do you do to get more support when you need it? Please
get in touch. I'd really love to know how other people manage. It's not going to get easier. We need to put our heads together and find more breathing space.
