Two years ago, Patricia was diagnosed
with dementia. An accident four years earlier broke her back and since then she
has been disabled, doubly incontinent and using a wheelchair.
"I have given up my life,"
says Sue. "I used to sail a lot. I used to do so many things. I'm a very
outward-going person. But I take care of my mother. And that's it.
"Love is something that drives
you to give up those things. You'll give up anything."
But she's struggling. She cares for
her mother 24 hours a day. Even taking the time to speak to us was difficult.
Her mother calls for her constantly.
She can't spend very much time away from Sue before becoming agitated.
There are professional carers who
come to the house to help, but none lives with them full time and it seems a
big part of what Sue does is to manage them.
More than 20 professional carers have
come and gone over the last few months because Patricia's behaviour can be so
difficult.
"She has a lot of challenging
behaviour," says Sue.
"Screaming, hitting out. It's
horrible because dementia strips the person of their personality."
Her eyes fill with tears as she
talks. The physical exhaustion of a life with little sleep is obvious.
But the emotional strain of watching
her mother deteriorate is pushing her to breaking point.
"I've lost my friend. My best
friend. She's there - somewhere inside. But the person I dearly love and dearly
want to talk to about so many things has left me already.
"And the thought of losing her
fills me with complete dread. Because my life is very much her," she says.
I ask her what it's like when her
mother hits her.
"It's heartbreaking. It can make
you feel useless. As she's saying that, it can make you want to run for the
hills and just run into the night.
"And there have been many
occasions when I've wanted to run off, thinking I was a useless carer."
It costs more than £2,800 a week to
keep Patricia at home. That money is paid by local care services.
But the authorities have twice tried
to stop the money. Sue says it is an attempt to force her to put her mother in
a home.
That is something she is adamant she
will never do.
"I've seen what goes on in those
places. It would kill her," she says.
She feels hounded by the authorities
and says it's taking valuable time away from her and her mother. She's says she
is sometimes up through the night replying to emails, while still caring for
her mother.
"It's been absolutely
devastating. The hours that have been stolen from me - email after email after
email - chasing and phoning," she says.
"The government wants to
encourage people to stay in their own homes and nurse people in their own
homes. And say there's support out there. But there isn't.
"It's the most isolating
situation anyone could find themselves in," she adds.
There are more than 6 million people
in the UK who look after sick or elderly relatives full time. Those numbers
have been steadily increasing. But so have the pressures on people like Sue.
UK
Homecare Association this month said 900 carers are quitting
the industry every day.
Government ministers say they will
spend an extra £2bn on social care over three years.
And earlier this week, Luke Hall, a
Conservative MP on the Commons Work and Pensions Committee, said carers made
"a huge contribution to society".
"It's only right that we do
everything we can to support the selfless work they do," he said.
"That's why we already increased
the rate of carer's allowance, meaning an additional £450 a year for carers
since 2010."
'Occasional
laughs'
For Sue, her dedication to her mother
has meant she has sacrificed her own happiness. Her husband left her six years
ago when she decided to look after her mother.
"You find that having any kind
of relationship is very difficult. It would take a very understanding man to
understand my situation."
Life has become increasingly lonely
for her. Yet she tries to remain positive.
"It is worth it. There are
occasional little laughs. Not often these days, but they're there. It's love.
It's what you do. It's deep."
SOURCE: BBC News, James Longman
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