Losing the living

    It is bad enough that carers witness the decline of the person
    closest to them, but to have to attend to their every need and be
    on the receiving end of their anger and frustration is worse. Jane
    Otto explains how one care home has helped her mother cope with her
    living loss.

    When a loved one dies we grieve. Grieving is a process that
    helps us come to terms with the loss. Friends and family are
    supportive and offer sympathy and over time we accept life without
    them. But what happens when the person is suffering a prolonged,
    terminal illness? As the Alzheimer’s Society’s publicity material
    says, “Alzheimer’s disease can make a wife feel like a widow”.

    Millions of families throughout the country are experiencing the
    living grief of caring for a loved one with dementia. There is
    little support or assistance offered. Many of the primary carers
    are elderly and have no one to turn to. They don’t know about
    support networks available to them – or are unable to use them
    because they don’t drive, can’t access public transport or are
    unable to leave the person they are caring for.

    What happens to them? What happens to the woman whose husband
    has a degenerative brain disorder and goes on a rampage in the
    night, threatening her or wandering out of the house? My mother has
    no one to call for help. Neighbours shut their doors; the community
    psychiatric nurse works 9-5pm Monday-Friday; the GP advised her to
    double his medication or phone the police.

    If she tried to give him medication he accused her of poisoning
    him. She wouldn’t call the police because he was “a sick man, not a
    criminal” – and she loved him. This is a common scenario.

    Tens of thousands of people are living this nightmare every day.
    They are lonely and frightened. They are placed in situations that
    they have no expertise to deal with. If you woke in the middle of
    the night to find your husband standing over you with a golf club
    threatening to kill you what would you do?

    They are offered respite care for one week in four. When my
    father went for respite my mother got no relief – just a chance to
    grieve. The man she married has been replaced by a stranger who
    could be angry, depressed, hysterical, manic, tearful, frustrated
    and, sometimes, himself. The emotional strain of caring for a
    person with dementia is intolerable, but there is the physical
    aspect too. The practical concern of making sure that they are
    safe, and the endless round of jobs including cleaning up,
    dressing, eating, using the toilet, visitors. Most carers are
    retired themselves and should not be expected to cope alone.

    Eventually, my mother was no longer able to manage my father’s
    care and we had to consider permanent residential care. By this
    time my family had lived for years with the daily grief of losing
    my father. Instead of having come to terms with the loss, we
    grieved again because he was removed from the family home. We felt
    that we had let him down. Friends and family expected my mother to
    be relieved because she didn’t have to worry about his care. Could
    they understand what it was like to visit her husband each day and
    leave without him?

    When this time came my mother was so isolated and bitter towards
    the people who have rejected my father throughout his illness that
    she withdrew even more from social life.

    When do you stop being a carer? Technically the “caring” stops
    when your loved one is not living in your home. The attendance
    allowance stops; the help and support are unavailable. This is
    replaced by loneliness and prohibitive transport costs to visit the
    care home.

    There are a lot of residential homes. Not all take Alzheimer’s
    patients. In many cases patients have been moved outside their
    local authority area, making it difficult for families to
    visit.

    Regular contact with family is vital for people with dementia.
    Without this contact they forget who their families are, they are
    not stimulated to talk about their past, they do not see
    photographs or hear their choice of music – all the things that
    make us people.

    Many residential facilities cater for the physical well-being of
    their “clients” but do not have time to cater for the emotional
    needs, to sit and talk, dance with them, hold their hands.

    There are, thankfully, some models of good practice which do
    cater for all of these needs.

    St Mark’s Hospital (part of the Heatherwood and Wexham Park NHS
    Trust) is a model of good practice. We found that this centre,
    which is staffed by a combination of general and psychiatric nurses
    and care workers, treated the whole family and for us they became a
    community in its own right.

    The facility appears clinical on first sight but the warmth of
    the staff and the patients overcomes this. It offers the whole
    package from day units to short-term care. The patients are able to
    walk around freely without being sedated. They can take part in a
    range of activities or sit with staff for comfort.

    The staff at St Marks looked beyond the illness, found the man
    we all loved and loved him too. They welcomed my father and his
    family into their community and offered us a sense of belonging
    that long-standing friends and family were unable to give. They
    gave my parents the chance to be married.

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