It felt
especially hard to leave Nick this time. I’ve been up to London to look at the
Queen (no, not really) for three whole days and nights and saying goodbye to
him on Sunday was a wrench. I was sure he’d be OK – he has the carers, for all
their lackadaisicalness, and Simon was going to look in – but the rest of the
time he would be on his own and increasingly I fear for his safety.
Also – it’s
a long day, as he once told me so poignantly when we talked about his drinking.
When your world has shrunk so small and you can do so little for yourself, what
else are you going to do to help the hours pass?
We’ve been
over this so many times. He can’t live with us because we haven’t got the space
or anything like the possibility of adaptations; we’ve got too many stairs and
steps in this crazy ramshackle Bohemian house. He wanted to be independent,
anyway. But that was before the illness got so much worse, and now independence
is more of a vague concept than a practical reality. At least he’s in a place he calls his own, with no one else
changing the channel on the TV or telling him what time to go to bed.
And I need
my own life. Juggling like this practically kills me sometimes and I forget how
much effort it takes just to run both of our lives, after a fashion. If I don’t
get away now and then – to walk, to swim, a little trip to see friends or just be at home
with my family, then my batteries get too run down to be 100% there for Nick.
But it’s
hard to leave him. I just don’t like leaving him on his own, so vulnerable.
Just
walking to the loo and back is getting so much harder for him, his odd
unrhythmic shuffling gait so much more jerky and unsteady. He comes back with a
damp patch all down one leg and I know there’ll be a puddle on the floor. Unlike
the song, his aim is not at all true. Really need to call the continence people
again to ask for advice – I’ve been told that they can supply a kind of padded
jockey short and I did flag this up a couple of months ago but no-one has been
back to us yet. It’s on the to-do list for today. Likewise calling
our old friends the council repairs team about the bathroom radiator. Nick leans on it for support whenever he staggers to the loo, so It’s
coming off the wall again.
How to put
all this in the PiP application form, which asks for as much information from
as many providers as possible? As usual, I’ll also send a bunch of HDA
information leaflets explaining the complexities and horrors of the illness. So
many of these that it won’t all fit in one leaflet and there are several ones
covering just some of the symptoms and issues involved. But even these don’t address
the ongoing day-to-day crises and concerns.
Nick doesn’t
really understand what’s happening when I’m sitting at his table, cursing under
my breath as I fill out forms like this or wrestle with his online banking. His
DLA payment is still coming in but has suddenly moved to a week later than it
had always been, so he is out of pocket and I’ll have to take some money out of his
savings to cover this week’s standing orders.
I tell him it’s fine to listen to
the radio or look at the paper as usual but since I’m here he wants to have his
chair moved so he can see me, even if he can’t quite process what I’m doing, and he sits
uncomfortably, getting twitchier as he knows something is happening that he can’t
quite grasp.
I explain again about
the PiP but his short term memory can’t hold on to the what’s and why’s, and I have to play down any mention of anything changing as that makes him too anxious. He twitches and keeps eyeing me nervously as I sit with the laptop at his padded table. It’s not
exactly quality time in its ideal sense.
However, at
least when I’m doing all these tiresome tasks we are at least in the room
together and he knows I’m here for love. Apart from filing this wretched form
in and surreptitiously googling incontinence shorts, I’m not sure what else I
can offer.
