Help and support
A Carer’s Guide to:
Positive thinking
Sometimes it’s hard to stay positive when we’re caring, and we’re
confronted with the reality of life not going to plan. Carers UK member
Steph Nimmo has had to work harder than most at finding the positives.
Her daughter, Daisy, born with a rare genetic disorder, passed away last
January, just over a year after Steph’s husband, Andy, died of cancer.
Still caring for her two sons who have
autism along with another teenage
daughter, Steph has managed to turn the
most difficult of stories into a book which
is both life-affirming and uplifting.
We parents of children who were born
to be different in some way are always
being told we are amazing, we are so strong,
we are told that you couldn’t do what
we do – well guess what? Sometimes we
want to turn around and instead of smiling
angelically and saying something like ‘Well
you just have to get on with it, they are my
child no matter what’ we want to tell you ‘It
sucks, I hate it and quite frankly I want to
run away!’
There are days when the Glad Game,
famously played by the fictional character
Pollyanna, just does not work for me.
How could I be glad when my work load
just kept increasing, when I saw constant
deterioration in my child’s health, when
her bedroom looked more and more like a
hospital room every day? How could I, when
every hard won battle for independence
and time off got taken away by yet another
medical curve ball?
Caring is rubbish at times. The times when
you’ve just changed the bed for the millionth
time and then her stoma bag leaks all over
it. The times when she hit you as you leant
forward to kiss her goodnight because the
seizure activity going on in her brain made
her confused. The times when your other
children were on the receiving end of your
stress and didn’t deserve to be shouted at
22
“With Christmas just around the
corner this will be a hard time of
year for many of us”
for the smallest of misdemeanours. The
times when the nurse agency messed
up the care rota so by day three of being
awake most of the night you are incapable
of stringing a sentence together let alone
caring for four children.
With Christmas just around the corner this
will be a hard time of year for many of us.
It’s supposed to be a time of thanks and
gratefulness. Last year, Christmas came
after the year from hell, which began with
my husband’s funeral and ended with
Daisy’s health in a desperately worrying
decline.
I’m so glad I gave in to Daisy’s demands
to put the tree up in November and went
all-out to make it super-special. I’m so glad I
trawled the internet trying to get hold of the
carersuk.org