Final farewell

People caring for terminally ill relatives or friends are often
more distressed than those facing death. But support services are
available, reports Katie Leason

Caring for someone we love who is dying has to be one of the
hardest things that any of us will ever have to do. But health and
social care services often focus on the needs of the person who is
dying, and overlook those of their carers.

In some cases, the carers are in more distress than the dying
person. Not only will they be struggling with the emotional turmoil
of seeing their loved one dying, but they may also find themselves
exhausted by their caring duties. There may be financial problems
too if they give up work to care.

But this role is increasingly common:  there are 400,000 carers of
terminally ill people in the UK – and the figure is set to
rise as the population lives longer.

One of the hardest things for carers to deal with is the huge
uncertainty they face, often without any warning. Emily Holzhausen,
Carers UK policy manager, says: “Caring is not something
people plan for or expect to happen. One of the biggest problems is
the difficulty in planning your life. People give up work and
expect it to be only a few weeks but may find themselves in the
same situation a few years later. It’s wonderful that their
relative is still with them but at the same time there can be an
enormous impact on their health, well being and financial
situation.”

As a result, carers need access to clear information, not only
about the person’s condition and how it will develop, but
also about their rights to benefits and other services. Studies
have suggested that as many as three-quarters of carers were
unaware of voluntary sector services and more than half did not
receive financial help.

But even when a carer knows where help can be found, bringing
themselves to ask for it can be an entirely different matter.
Holzhausen says: “It’s difficult to ask for help as
often carers say that this means that they’re saying
they’re not coping. They want to be able to cope and
that’s what they dislike about the system – they have
to say they are not coping in order to get support.”

When carers do ask for support, it is essential that they receive a
good response from services, otherwise they are likely to carry on
the struggle alone to the detriment of themselves and the person
for whom they are caring.

Paula Smith, lecturer in the school of nursing and midwifery at
Sheffield University, says: “Carers do worry an awful lot
about pain and some studies show they are more anxious about the
levels of pain than the patients themselves.” They may be
concerned about how to manage that pain and whether they are giving
too many painkillers. Having access to the right information can
help to reassure them. Carers and patients are bombarded with data
from the moment of diagnosis and some of it, such as drug regimes,
may seem scary. Filtering it in stages can be helpful, particularly
if it is in a format that can be looked at again.

“Certainly, people need to have information repeated several
times and to be able to refer back to it. Written information about
the types of treatment and drugs is useful,” says
Smith.

Although information and emotional support is crucial in the early
stages after diagnosis, it may be that more practical support
becomes the main priority as the condition deteriorates. It may be
that help is needed for domestic chores or a sitter may be required
overnight so that the carer can enjoy undisturbed rest.

Many carers do not question their role but simply get on with it as
best they can. Smith says: “They don’t identify
necessarily as a carer. They see themselves as doing what you would
do. And it’s not all negative. Some get a lot of satisfaction
from being able to help.”

In terms of emotional support, many carers rely on their family,
says Pat Harrod, specialist palliative care social worker at the
Queen Elizabeth Hospital and Tapping House Hospice in Norfolk. But
these days, this is not always possible. “People move to
rural places once they retire and their family may live a long way
or work full time. It worries me that emotional support isn’t
covered flexibly enough,” she says.

Along with drop-in centres and the chance to talk on a one-to-one
basis, she recommends contact by phone. “Carers feel down in
the middle of the night. The person might be behaving differently
and they may want to ring up and say ‘is this what I should
expect?’.”

There may also be concerns about what is going to happen to the
carer, particularly if the person dying is the main earner. But the
carer may feel awkward, and even guilty, about discussing this
while the person is still alive.

It is sometimes forgotten that the biggest support to a carer often
comes from the person they are caring for. Many just want to
maximise the time they have left together and have as much of a
normal life as possible, adds Harrod.

“They are doing it out of love. Many of them don’t like
to be called carers but husband, wife or daughter,” she says.
Harrod recommends that any leisure activity includes the carer and
the cared-for. “They want to have time to enjoy their
relationship as they used to. Carers want to have fun with the
person they are caring for.” CC

Help the Hospices will launch “Caring for Carers” on 7
June, a support package for family carers and professionals working
with them. More information at www.timetocare.org.uk

He deserves a decent end

Jenny Bailey cares for her husband, Raymond, who is terminally
ill with cancer. Before Christmas, Raymond was given fewer than
three weeks to live but the disease progressed slower than
expected.

Each day six carers help Jenny with hoisting Raymond out of bed,
washing him and helping him on to the toilet. Jenny was a nurse for
41 years and can give Raymond morphine.

She recalls when Raymond was diagnosed. “There were lots of
people making me lots of cups of tea and giving me lots of
tissues.”
She asked whether he could go home. “I was determined he
should have a decent end. He wouldn’t have achieved that in
hospital.”

Her GP is supportive and visits every week. On Wednesdays Raymond
goes to a hospice and on Fridays a woman from the voluntary
organisation Crossroads visits. “She’s super. Every
Friday between 2-5pm she sits with him and I can have a sleep, cut
the grass or go shopping.”

Jenny says that, despite looking after people throughout her
career, caring for her husband is different. “There’s
no off-duty here. Even when the Crossroads lady is here I could get
a call on my mobile phone and have to go because I’m
responsible,” she says.

Although she has more help than she expected she says she is too
stubborn to ask for more. “I would feel that if I had to get
someone in to do the garden, I’d be questioning whether I was
even coping with that now.”

Yet she finds the caring fulfilling and Raymond never forgets to
show his appreciation. “Every night I get a thank you,”
she says.

Jenny has also thought about her own future. “It occurred to
me in the middle of the night. Who is going to look after me? I
shall have to be looked after by strangers,” she says.