Respite in 2019 took seven
months to set up, given the randomness of dementia care. It was always a card
to play from the bottom of the deck, at the last second, with a flourish,
hoping you could pull off the illusion of not playing the card from anywhere.
Magically, I made respite appear out of thin fucking air.
And that air was very thin air indeed.
So much had to be in place before we could
even start, but start we did. Recap. The initial respite is for two nights,
just to see how the cared-for copes with a different routine that contains many
elements of regular routine, in a strange place.
To get there, we had to get there. You visit
before you visit, to sort out lists of pills and the underlying ailments that
the dementia specialist tells you are the worst things when dealing with
dementia.
He’s fucking right about that.
Mobility is one of the hardest things to
deal with. But we made it down the longest fucking hallway my mother’s
encountered in a building in years. This was ghost story infinite hallway levels of spookery. And we survived
the interview.
The job then was to arrange the two-night
stay and we got away with that. Magic. Respite phoned up after, to do a
miniature check-up. No complaints? We misplaced one piece of clothing – the awkward
piece I didn’t photograph for posterity. Luckily, it was one of the least-loved
pieces of clothing in the arsenal, and I can’t say it’s been missed since.
Some other little old lady gained the
benefit of it, I’m sure. Or a little old guy with an adventurous sense of
style.
What happened this time
around, with a slightly longer visit? I hauled this lengthier respite stay out
of the thinnest fucking air in the history of the thinnest fucking air. Weekly
daycare passed something on to us, like an evil occult professor passing his
satanic runes inside a Christmas card.
Yes, we were ill. Under the weather at the
same time. And the pressure you feel, the howling gale from your ears to your
ankles, whispers its roared message. You
will be too ill to deal with respite. Too ill for a break.
Supreme fucking irony there.
Timing was absofuckinglutely everything. We
were hit by this illness at just the right time to recover in time for time
off. And that was with extra steps taken. I cancelled one last daycare visit
before the respite, just so we could both keep our energy up.
No distractions. Minimal fuss. We were on
energy-saving mode…for two. The usual trip upstairs to the shower was
cancelled, and the carers made do with the facilities downstairs. I called this
training for being away. Respite has no stairs to speak of.
On the day, we had a keen carer who thought
it best to risk the shower and the stairs to it, once again. We could cancel at
any step of the way. This shower ritual, climbing Mount
Everest , is important exercise for retaining what mobility there
is.
You don’t want a fall at any time, and you
certainly don’t want it from the top of the stairs a few hours before going
away for a proper break that has nothing to do with bones. Top hat. Check.
Tails. All present and accounted for. Magic wand. Yes. Dramatic flourish.
Rehearsed to infinity and beyond.
Rabbit, for pulling from hat?
The magic act went ahead, more or less as
planned. No ice on the path. And no rain in the face. There is a great routine
for getting into the car, and we almost use that. Our driver hired for the day
is stockpiling his patience like a saint.
We sail through traffic to Abba tunes, and a
very tired dementia sufferer finds time for a sing-song. And then we reach the
lair, the secret base, the hideout. We tackle the long hall, and take a turn
into the lounge.
This is my magic act. Making sure this part
of the trip doesn’t lead to a trip. I’m asked a random question, but deflect it
by insisting on reaching the nearest sofa. One of the workers leaves that sofa
and repositions it to so we can reach it far more easily.
Bags must be checked in. I’m left in the
company of my mother and of two little old ladies who keep popping in and out
of the room. This categorises them as spry.
For any age.
I drink in the room’s details
as my mother slumps semi-conscious on the sofa. Christmas lights. Comedy,
playing out on the TV. Workers going to and fro, and throwing on a smile for me
as they see I’m trapped in the amber of waiting to go.
Eventually, the woman dealing with the pills
materialises…her own magic act, I suppose. I’m trying to disappear, of course.
We clear up a point about one of the pills, and I am golden. My mother sits up
for this part of the chat.
And I am good to not quite go. My driver
isn’t back from his coffee, yet. I could phone him at any time. During the
return from the first respite, I somehow managed that as I was in the car with
him. One of those phone moments sent to bug you.
I was his mystery caller from the back seat.
So, I’m allowed out to the foyer. There, I
struggle to locate a bin for wrapping from a packet of mints I am demolishing
as I walk around the empty room. This is not great. I can watch from the door
but not sit anywhere, or sit around the corner and not see anything.
To solve a host of problems, I turn and walk
to the toilet way at the back. This is a comedy. The lid won’t stay up unless
you hold it, and then the push-button flusher pops out on its shaky spring
after I press boldly.
I think it is best to make a hasty retreat
from this disaster zone, and I walk through to the foyer to discover my driver
has completed the vital coffee run.
That’s it. I am officially on
respite. It comes at exactly the right moment. I am recovered enough to enjoy
the break. For a few days and nights, I have no carer routine. And that is
amazing.
It doesn’t sound like much. Sitting having a
coffee and eating festive chocolates. But it is a world off your shoulders
unless the telephone rings at an awkward hour of the night. And I don’t take
any calls like that at all.
I had plans. Respite was
based around those. They fell through. I quickly made other plans. Those came
to pass. Overall, how was it? Patchy, in the run-up to the break. That part is
unaccountably stressful, as you KNOW it’s all going to be cancelled.
I was too busy and too ill and too busy to
complete the Christmas cards. Usually, those are done in two phases each
December. There’s the early phase, getting cards to the organised people who
treat Christmas season as starting on the first of the month.
And then there’s the last gasp, sending out
cards just before the post shuts down. But I was too busy with preparations for
a break, and feeling low on energy from illness. I made an executive decision.
That decision was…fuck it.
By coincidence, this year, the number of
incoming cards fell sharply. So I was in good company all round.
The stress of getting my mother into respite
on Boxing Day was considerable. I came back from the trip to see the Christmas
tree lights winking at me through the window. Respite was real, it turns out. I
cooked a massive Boxing Day dinner and enjoyed it beyond belief.
Yes, the flavours on a plate spoke to me.
All those ingredients, telling you that winter is a time for stocking up
against the dark times, in the cold.
Respite seemed impossible. I made it
possible, and had a break that didn’t involve bones. And the reverse trip? I
picked up a little old lady who was happy to see me, and we struggled into the
car.
Strangely, full routine didn’t kick in until
the next day. Even then, for a few days, getting back into routine, I still
found time to go first-footing. I was out in the cold, marching past luxurious
Christmas trees in cold windy weather come the New Year, after staying up until
3.00 in the morning with some very traditional shortbread.
This is the law in Scotland
For a time I was laughing in good company,
with not a care in the world. Respite was done, but it still felt like it was
running on for a few days after. With the weight off my shoulders, I felt I
could take any weight on. And when the time came to take that weight back on, I
did so with barely a shrug.
In my head, I am still on respite. Oh, it
won’t last. But this is enjoyed while it lasts, and that is the point.
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