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 The man she married has been replaced by a stranger who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

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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