It’s a week for
carers, apparently. I’ve had a raft of letters relating to care sail across the
letterbox into my tired hands. One of the letters seemed to be a bill, but it
was letting me know that there’d be a maximum level to any care bills that
floated in.
What should I talk about? The endless
changes to routine that don’t even resemble changes? I tired of pizza, and
replaced pizza with different pizza. Still eating pizza now and again.
Different pizza, mind. Better pizza. I make a point of heating meals in the
oven. Just to feel that I’m not living that carer lifestyle.
In the world of caring, instant food is your
friend. The microwave is convenient. So is the one-cup kettle that provides hot
water in half a minute. Into the packet soup that hot water goes. Yet I make time
to slam a pizza in the oven and keep a watchful ear on the smoke alarms.
Letters come in. I formulate responses.
Letters. Telephone calls. There’ll be a text message to deal with. Any old
time. Early morning to around 5.00 in the late afternoon, I am a prisoner of
routine that isn’t routine at all. And outwith those hours, my time might be my
own. Wouldn’t bank on that, though.
What does it mean to be a carer in a week
devoted to carers? Nothing changes. The hinge goes dead on the electric bath
chair. I phone a helpline and ask for the number. Stores. Phone call hunting
for a phone number. The guy in stores checks the part-list, confirming the make
of chair. He can have someone come out in five days.
I improvise a repair until then. A whole
section of the chair has to come off.
Then it’s on to the next thing. The shopping
is delivered. An e-mail tells me everything is on the way. Except the milk. No
strawberry milk. Only chocolate. That’s no good. The cared-for binged on
chocolate when she was a wee lassie, and went right off it after puking her
guts out.
I knock back the chocolate milk. As soon as
the delivery guy leaves, I head to town, to the supermarket, to buy the
strawberry milk that I know is there. Of course it is. That’s just my luck. The
stuff isn’t there when they pick it and load it onto the van. I stuff it into
my big bag, and I buy two new towels.
My trip into town replenished the cash
supply. I cash notes in for low-cost items and make change. The world of being
a carer is an electronic world. But the electronic world doesn’t go far into
the woods of the cash-only transaction. There are still enough cash jobs
floating around to be annoying. My rescue of the strawberry milk carries me
past the weedkiller place. I buy weedkiller there. That doesn’t go in my big
bag. I carry it.
Beyond the druggies I go, hoping I don’t
have to defend myself against them. My weapons are a large bottle of weedkiller
and a massive bag full of strawberry milk bottles. The druggies stop abusing
someone who darted around the corner. They go back to investigating the ground.
It is of extreme interest to them. They look as if they are going to lie down
there and die together alone.
Just along the way, two near-druggies wonder
what the fuck the police are doing walking around there at that time. Policing,
I’d guess. The police don’t walk around anywhere at any old time on the
off-chance that there’s a welcoming picnic about to burst into action.
Were the first druggies hurling abuse at the
second druggies, before I arrived late to the scene?
Traffic mayhem costs me a bus by ten
seconds. I blame everyone who stood in my way on that long street. It was the
traffic mayhem that caused the pedestrian mayhem. I sit on the pavement and
wait for another bus. There is no way I can be arsed walking home with heavy
bags.
Can’t even be arsed standing, so I plant my
arse on the ground.
I look back down the street, at floor-level,
and take in life from a different perspective. A few people look me up and
down, wondering if I am okay. I see a lot of harassed people, trying and
failing to deal with awkward parcels and packages. But I gave up that life when
I sat down. I’m not harassed or struggling with packages at all. I’ll only
struggle when I am waiting to step off the bus.
Rain hovers, but doesn’t fall. I brace
myself on the bus as the machine slows and deposits me at my destination
seconds before the rain falls. My trip from the stop to the house is endless. I
make it back inside and I dump the bags. Coffee saves me.
Somewhere along the line, after
administering pills and before crashing to bed for the night, I see it is
CARERS WEEK. There’s no real reaction to this. For years, being a carer was
unofficial. When I spent the last year making it official, everything seemed to
get harder and not easier. That was down to progression.
Progression is slow, though it is still
progression. Dementia grows randomer. The troughs are deep in the sea, and
threaten to overturn you. And the peaks only serve to show you how far you will
fall back into the troughs. I have many amusing moments. Help comes from a
multitude of sources.
You have to switch off, being a carer…though
you never switch off, being a carer. It’s a permanent Twilight Zone that had me
up at 5.00 in the morning dealing with the disease. Battling the disease.
Fighting the randomness. Persuading the cared-for to get back into bed, and
then climbing the stairs to find my way back to my own interrupted slumber.
Sleep is fucking magic.
CARERS WEEK doesn’t mean anything to me.
It’s an event on the internet. In the kitchen, passing through the garden,
emptying the bins, making a coffee, repairing the blinds, every item relates to
caring and every week is CARERS WEEK.
All this caring, earlier in the month,
delayed my usual blog post. I like to post a blog on or near the 1st
of the month. This month, I was busy with the notion of being busy. A million
things cluttered my day. And the day after. The day after that. Here I am,
finally blogging. And I won’t post this entry until tomorrow.
I return from fucking brilliant sleep and
demolish a coffee before I get to the end of this post. For unknown reasons,
the last few paragraphs are double-underlined. I remove the blight. And here we
are, almost half the month gone.
What does it mean, when caring gets to you?
It always gets to you, so it’s hard to say. Things go undone for that little
bit longer. This blog post. There’s laundry lying on the floor in the kitchen,
but that’s by design. When the carer comes in to assist with bathing, I am
elsewhere, folding towels. Letting things go undone for a while is part of the
routine. I need to have a few towels there to fold when other things are done.
Just over a year ago, I was the only carer
and I was making the transition to being an official one. Then the bathing
carers came in for a few days a week. Daily, now. I had so much help, so much
assistance, come in over the year. What changed?
Ups merged with downs and came out roughly
even. Doing this alone now would demolish me. There’s so much that I do that
would demolish other people. Luckily, I have the patience for it. That’s not
enough. This is why coffee was invented.
But I don’t do enough. That’s the nature of
the ailment. At first, you shouldn’t do enough. I was determined to preserve as
much independence as possible when the problem farted its way into our lives.
And for four years, I fought that slow battle to keep independence going.
Don’t take all the decisions away, right at
the start. That hastens the problem. Year five was about making things
official. Bathing assistance was three days a week. Now it’s seven days a week.
It’s likely that we’ll go to three days a week for daycare – a trip out to a
centre in a minibus and a few hours off for me.
Twice I’ve been called by telephone, to end
the day out early. So…potentially…a few hours off for me. I must struggle.
There’s no room for complacency. The smallest random change can throw a
concrete block into your plans for that day, week, or even month. It’s
important to struggle. Always be ready for the most ludicrous turn of events.
And I’ve faced plenty of those plot-twists.
I’m only here to complain to myself that I
should have had this blog post up a fortnight ago. As complaints go, it’s a
mild irritation. I’ll live.
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