Till death us do part

    When someone you care about dies, you feel distress and pain.
    But the experience can be much more complicated for someone with
    learning difficulties, who simply may not be able to grasp why they
    can no longer see their mother, for example. Many people with
    learning difficulties have spent years in long-stay institutions
    and have had little familiarity with death. If a resident was ill
    they would be moved to the institution’s sickbay; if it became
    clear they were not going to recover, they remained there until
    they died. Grief and bereavement were not something people with
    learning difficulties experienced. Nowadays, as people live in more
    integrated communities and live longer, death is something they are
    more than likely to face, especially the death of parents.

    A number of residents living in accommodation provided by
    Anglo-Jewry charity Norwood came from long-stay institutions and
    had never come into contact with the issue of death before. To help
    them deal with death, Norwood appointed Michael Leven five years
    ago as its cultural adviser. Part of his job is to ensure that if
    the relative or friend of a resident dies, or if they themselves
    are dying, they are dealt with in a culturally appropriate manner –
    for example that funerals of Jewish residents take place, normally
    within 48 hours of the death.

    “The cultural and spiritual side of a person is very important,
    especially for people with learning disabilities,” says Leven.
    “They should not be robbed of a rich and rewarding part of their
    culture.”

    When a person dies, some families do not want the individual told
    by staff working with them. In effect, they try to protect them
    from the truth because they cannot deal with the
    repercussions.

    David Lione, Norwood’s learning disability service manager, says:
    “Families have told us that their own coping mechanisms are so low
    that during a funeral they would not be able to support a person
    with learning disabilities at the same time.”

    Such an approach can hinder the individual’s ability to understand
    what has happened or come to terms with their loss. And when they
    are finally told, they may have delayed reactions.

    Jackie Saunders, head of education at St Nicholas Hospice in Bury
    St Edmunds, Suffolk, says: “If a bereaved person becomes withdrawn
    or angry it is seen as acceptable, but if they have learning
    disabilities this behaviour is seen as challenging and they might
    be given medication. It becomes about modifying their behaviour
    rather than appreciating that they are grieving.”

    Saunders’s 10-bed hospice also addresses the needs of people with
    learning difficulties who are ill or dying. Two years ago, the
    hospice started running short courses for professionals working
    with these clients on palliative care and how they dealt with loss
    and bereavement. So far 80 people have completed the training and
    the hospice now regularly supports people with learning
    difficulties.

    Saunders says the language people use about death – passed away,
    croaked it, pushing up the daisies – confuses people with learning
    difficulties, who find euphemisms difficult to understand. “Someone
    who is a concrete rather than an abstract thinker will not
    understand this.”

    So what can social care professionals do to help these clients deal
    with their grief? Lione recommends staff find out from the family
    in advance how they want to approach bereavement when it happens.
    “Sometimes your view is different from what the family wants for
    the person.”

    Learning difficulties services and specialist palliative care
    services should work together, says Saunders, to meet their
    clients’ dual needs. She adds that, to achieve this, both services
    need to do more partnership work.

    East Thames Care has seven registered homes and two sheltered
    living projects in Essex for people with learning difficulties.
    Learning disability service manager Janette Cuthbert has had to
    break the news of a death to a person with learning difficulties 10
    times in a 15-year career in social care. Each time she has
    approached the subject as if she were talking to anyone else. Staff
    who know the client well are best placed to provide continuing
    bereavement support, she says, adding: “Don’t be afraid to talk
    about it and ask them how they are feeling.”

    ‘Don’t bottle it up’   

    Cliff Moss had known his wife Clare (pictured) for 16 years, and
    been married to her for eight, when she died in May last year. She
    was 38 and died from a brain tumour. They both knew she was dying.
    When Clare died, Cliff says he felt sad and empty, and he still
    misses her today. “She was nice to talk to. I liked being with her,
    she was happy and smiley.” 

    More than 200 people attended Clare’s funeral wearing red, her
    favourite colour. Cliff had the song I Will Always Love
    You
    by Whitney Houston played during the service because Clare
    liked it. “I was brave at the funeral, I had to be. Clare said if
    she was in heaven then I shouldn’t be upset.” 

    Cliff, who has learning difficulties, as did Clare, recently
    held a barbecue with friends in a park to celebrate Clare’s life.
    It wasn’t a significant anniversary, just something he wanted to
    do. He also made a donation to Macmillan Cancer nurses. He plans to
    have a bench with a plaque bearing Clare’s name put in the park’s
    garden of rest. “It will be for people to sit on and think of
    her.”  

    What helped Cliff deal with his grief was focusing on his work
    at People First Swindon and his family’s support. 

    He advises people who have experienced bereavement to talk about
    their feelings to friends, family and colleagues. “Staff should not
    be afraid to ask them about it. People should not bottle it
    up.”

    Tackling the stigma  

    Last week a series of information leaflets were launched in the
    North Staffordshire area to explain and ease the process of dealing
    with death for people with learning difficulties. They were
    developed over 18 months by 15 people with learning difficulties,
    carers and social care professionals. One leaflet is aimed at
    users, another at carers and a third for professionals. They are
    free on request and a number of workshops will be held next
    February to evaluate their usefulness. 

    The group included Sue Read, a lecturer from the University of
    Keele’s nursing department who based her PhD thesis on people with
    learning difficulties’ experiences of bereavement counselling and
    support. She says the leaflets were developed because “there is a
    stigma around people with learning disabilities’ cognitive
    abilities to understand difficult concepts such as death. In our
    culture there is a double taboo of death and disability”.  

    Read used to be involved with helping people with learning
    difficulties cope with their grief through a North Staffordshire
    scheme, Supportive Help Offering Understanding to People with
    Learning Disabilities Experiencing Recent Loss and Bereavement
    (Shoulder).  

    Read wants the government to issue national guidelines on what
    users are entitled to. She says: “Valuing People did not talk about
    bereavement at all. It was all about loss and change.” 

    – For more information contact s.c.read@nur.keele.ac.uk

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