‘It’s not ok, love’

It was 7.57am on a damp September day. Sybil, my carer, was due
at any minute. Hearing footsteps outside the bedroom window, my
door system buzzed into life. “Homecare’s here love, OK?” My heart
sank, it was not Sybil.

I knew the voice – but this woman had only visited me about
three times in all the years I’ve been getting homecare.

My assistance dog Rupert didn’t recognise the voice and plodded
off to investigate. Two minutes later the intercom buzzes again,
this time the voice sounded impatient: “Homecare ducks, OK!”

I wondered where my usual carer Sybil was. She is the one I have
had for five days a week for eight years, barring holidays and
sickness. She is the one listed on my weekly rota. I made a mental
note to contact the homecare service and ask yet again why I had
not been told about changes. The office knows that I like to know
ahead of time of any changes to staff or times of visits.

Rupert lay quietly on his rug, waiting for his promised Bonio.
I’d explained to him that he must not pretend to be scary to
visitors because the replacement carer may take longer to do her
work. I wondered what the next hour would have in store for me and
used the control at the side of my bed to release the door catch
and let the new carer in.

The unexpected carer advanced rapidly towards me, apron in place
and yanking her rubber gloves on. “Right then love,” she said.
“What are we doing to you today?” At the same time, without asking,
she swept my duvet unceremoniously off me and left me no time to
make myself tidy first. Again without asking, she started to lift
my legs – which was not a good idea.

My care plan includes a daily shower, which is brilliant for me
but not so good from a speedy carer’s perspective. Their favourite
tactic when you request a shower is to sigh, look at their watch
and say they would if it was up to them but “they haven’t been
given the time”. At this stage I am probably only 20 minutes into
my allocated one-hour slot and officially there are still 40
minutes left.

Doing this would also mean that they will need to stay their
allocated time and they cannot just rush in and out, make the bed
with me still in it (joke – they just pull the cover back, complete
with cold hot water bottle and crinkles), wash up in yesterday’s
cold water, sweep toast crumbs down side of cooker – and that’s if
I was lucky enough to get some toast.

Having succeeded in obtaining my shower I managed to avoid her
offer to scrub my back. I was left feeling like a muddy jacket
potato being scrubbed to go in the oven. She prepared to put my
nightdress back on me again. When I declined her offer she sounded
surprised and said: “Oh! You get dressed then?”

“Yes please”, I smiled. I had an appointment at the House of
Commons that day as part of the European Year of the Disabled and
did not think a nightdress was suitable for the meeting.

Alison Lewis has had multiple sclerosis for 20 years and
uses direct payments.

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