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.

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