Yes, another one, this time
for Nick.
It’s all packed – favourite
shirts ironed and folded in his case, socks and boxers for the week, jeans and
shorts, pyjamas, handkerchiefs and dignity bibs, an outfit he’s chosen for
today hanging up and labelled on his wardrobe door, just the toiletries to pack
this morning after he’s showered.
We’ve got his clock, his
radio, phone and toothbrush chargers in a separate bag, even a pair of trunks
in case he gets the chance for a dip.
Travel insurance certificate
printed out in a folder, and – unlike your average holiday perhaps – his care
plan and full medical details including dietary guidelines for a soft diet to
prevent choking.
I’m picking him up in an hour
after his morning carers have helped him wash and dress, and we’re setting off
for the seaside!
A week at Sandpipers in
Southport which is one of three specialist respite facilities run by Revitalise
– a brilliant charity helping disabled people have a break like anyone else.
If you don’t know, then it’s
hard to imagine the enormity of this. It’s not just about using a wheelchair.
When you can’t sleep in a normal bed, when everything you eat has to be pureed
and fed to you spoon by careful spoon, when you can’t be in one place for long
without knocking something over or pulling a door off its hinges, the very
thought of going on holiday is the opposite of relaxing. Unless it’s somewhere
designed and run especially for people like you.
He went to the same place last
year and it felt like a miracle. He absolutely loved it, just being in a new
place (though this is not always easy for people with HD who can find a change
of routine very frightening), being cosseted by the staff and chirpy young
volunteers.
He was by no means the most
impaired person in the room, for once. And everyone is just treated like the
human being they are, not just a service user with special needs.
So I think it’ll be great for
him and he’s really looking forward to it. While he’s away I’m going to
a) do nothing (probably not as
I have a million things to catch up on, all the things that back up when you’re
running around trying to get things organised for someone who can’t do it
themselves. But maybe an indulgent morning in the garden reading a book!!!)
b) deep clean and sort out his
flat, including the boxes in the cupboard that we stashed away when Nick moved
in 18 months ago. There’s just never been time to get to them, there’s always so much going on in the day to day.
Also, knowing that he’s in
such a good place and was so happy and well looked after last year has put my
mind at ease; I feel we both know the ropes now.
It was a very close to the
bone thing as we weren’t sure until ten days ago if funding would be approved.
There’s no way we could have afforded it ourselves, especially as Nick’s care
needs have increased and with that, his level of support. These things don’t
come cheap, and when I saw last year how carefully staff looked after the
residents, it’s not surprising, but it does make it hard to afford – living
with a long term disability is expensive and disposable income tends to
dissipate as care needs increase. But then, hence the need for a break, and
hooray for Revitalise.
And hooray for our Huntington’s
Disease Association advisor, Diana, who organised a grant at the last minute to
pay for a big chunk of the fee.
When so many things seem so needlessly
difficult (yep, looking at you again Sheffield City Council and we’ve by no
means finished with the Ross Care saga after a thrilling Part Two last week) it
is a wonderful feeling to have a door opening for you thanks to some of these
guardian angels.
So I can’t thank the organisations
who have helped us enough.
Meanwhile, it’s a sunny
morning and we’re going to pack some tunes from Nick’s CD collection and go off
on a road trip, just the way we used to. Even if there is a wheelchair in
the back.
