Help and support
“Sleep was a luxury
item in our house...
The environment just
wasn’t conducive to
anyone getting sleep” in caring if they’ve never
been involved themselves.
Isolation is one of the worst
things about it. You can feel
that no one around you
understands what you’re
going through.
Sleep was a luxury item in
our house. My husband’s
seizures are mobile, noisy
and there’s a lot of banging
around. The environment just
wasn’t conducive to anyone
getting sleep. There’s also a lot of
negativity in the media
surrounding people on
benefits that has hurt
carers, too. People will
look at us and because
my husband isn’t in a
wheelchair they don’t see
a disability and they think,
‘Why aren’t you at work?’
People don’t realise I have
a full time job, it’s giving
medication, it’s putting
someone in the recovery
position, a lot of the time
it’s physical nursing. I don’t
think most people in society
realise that carers are
working hard and are really
struggling financially just to
make ends meet.
Ten years ago everything
came to a head when my
husband got really poorly.
We had a six-month period
where he had 30 seizures
a day. We were in a cycle
where he would sleep, seize
and wake over and over. The
hospital didn’t know what
was wrong and they’d tried
all of the available drug
therapies.
We were both totally
exhausted and we realised
we couldn’t carry on working.
The kids were at secondary
school and they were
struggling. My daughter has
said that some days she
would go out and she didn’t
know whether Colin would be
alive when she came back.
We moved to be near my
parents and they gave me a
hand, but there was no other
support. Colin was eventually
diagnosed with a serious
infection.
It was around this time
that I recognised myself
as a carer. While we were
trying to get my husband’s
6
invalidity benefits sorted,
social services gave me a
leaflet about being a carer.
The first paragraph said, ‘Are
you caring for somebody?’
I thought, ‘Hang on a
minute.’ I read the rest and
recognised straight away
that I was a carer. Up to that
point I thought I was just
looking after my family and I
just had to deal with it.
Social services quickly
started to help with a self-
directed support package.
I felt supported from the
minute the forms were filled
in, but I hadn’t realised how
burnt out I was until it got
better.
It’s important to identify as
a carer, people in our family
were suffering – my children
were young carers and we
just didn’t know. We didn’t
even know there was help
available. There was a carers
centre in a neighbouring
town that we had no idea
about.
It’s hard for people to
understand the pressure
and real hardship involved
The financial strain makes
everything so much more
difficult. There are added
expenses that you don’t
even think about, such as
extra laundry or additional
heating and equipment.
We were burning through
washing machines because
we had a continual cycle
of washing. Every time
“My children were
young carers and we
just didn’t know. We
didn’t even know there
was help available”
carersuk.org