Caring but not coping

Thousands of people regularly care for an older relative around the
UK. Although it is often a demanding task it can also be a
rewarding one. But three recent cases of carers of older people
have turned this perception on its head – and for all the wrong
reasons.

Bernard Heginbotham was charged with killing his 86-year-old wife
Ida earlier this month. Ida, who suffered from dementia, had been
admitted to a nursing home after falling and he is accused of
stabbing her in the neck during a visit. He was expected to appear
before Preston Crown Court earlier this week and at 99 is believed
to be the oldest person in British legal history to be charged with
murder.

Last month, Susan Cayton was sentenced to life in prison for
stabbing to death her 75-year-old housebound disabled mother.
Cayton cared for Winifred Robinson on a daily basis in her St
Helens home before the attack in September 2003. During the
incident Robinson pressed her panic button connected to social
services and the attack was recorded. Andrew Menary, QC,
prosecuting barrister, told Liverpool Crown Court that Robinson
“was not always grateful and the defendant seemed to be resentful
of her”.

Then last August, 81-year-old Audrey Hingston stabbed her
83-year-old husband Eric to death as he slept at their home in
Plympton, Devon. At a news conference the following month she
claimed burglars attacked him and appealed for witnesses. She later
confessed to her son that she had killed him because she “could not
take any more of his illness and having to care for him”. Last
month Hingston was jailed for two years for manslaughter.

While other factors may have been at play, of course such action
can never be excused. Imelda Redmond, chief executive of charity
Carers UK, says although caring for someone can be challenging, it
is a mistake to blame the pressures of the caring role for these
deaths. “It’s not good enough for the carers’ movement to say the
people who killed those they cared for were ‘under stress’. It does
everyone a disservice because murder is murder.”

Murders of older people by their carers are fortunately rare
occurrences. But what pushes a carer to the point where – although
they do not harm their relative – they feel so desperate they can
no longer care for them? Redmond says it can be a gradual process
as carers find themselves increasingly isolated as they are forced
to stay in their own homes more and more.

Such isolation can be exacerbated when a carer does not have access
to support or training. Action on Elder Abuse chief executive Gary
FitzGerald says: “It can happen when carers don’t have a place to
go and say ‘I’m not coping’ without it being construed as a
failure.” He adds that callers to AEA regularly tell him they are
frustrated with having to fight their corner. “Lots of carers feel
they can’t make services understand what their family is going
through and people feel they have to beg for help.”

Another problem is that when an older person is caring for someone
of a similar age there can be confusion regarding who is the carer
and who is being cared for, says Age Concern England community care
policy officer Stephen Lowe. “It is not clear within the
relationship and nor is it clear for services looking in on the
relationship.”

Anne Roberts is chief executive of Crossroads, an agency providing
support to 35,000 carers a year in England and Wales. She believes
some carers reach breaking point when their own needs, such as
their health, change and impact on their ability to care. In
particular, she says, this can affect carers who are old
themselves.

One barrier to support services is whether someone actually
identifies themselves as a carer. Roberts says many people believe
they are looking after their parent or partner because they should
do. It is not until something specific happens such as a crisis and
they come into contact with social care agencies that they realise
they are a carer. Health and social care professionals can add to
the melange by not always recognising the carer’s role. Roberts
says: “People can find themselves caring for someone without the
appropriate support.” In order to have a carer’s assessment she
says carers need to be informed enough to know such help
exists.

Support services are often targeted at the most able or most
confident carers, which makes it difficult for those who aren’t
aware of their rights or who are less prepared to speak up for
themselves to access them, says Redmond. She adds there is not
enough recognition of the diversity of carers and this often leads
services being “aimed at a stereotype of a carer”.

To gain access to support services a carer has to be assessed by
their council. However, although social services have a statutory
duty to meet the cared for person’s needs, this is not the case for
the carer’s own needs. Many believe the carer’s assessment is
geared towards identifying who the carer is rather than looking at
their situation holistically and providing for both
individuals.

Financial assistance exists in the form of the carer’s allowance
for those looking after a person in receipt of attendance allowance
or disability living allowance for at least 35 hours a week. In
October 2002, the rules for carer’s allowance were changed and for
the first time carers aged 65 and over could claim it. This was
supposed to lighten carers’ loads but some are not eligible because
of the amount of pension they receive.

Social care professionals can help carers of all ages by removing
some of the pressure of caring, says Redmond. This includes
considering whether carers wish to continue to work or study:
“There shouldn’t be the assumption that they will give up
everything because they are now a carer.” Redmond recommends staff
help carers contact their local support network, be that a carers’
group, church or a branch of Alzheimer’s support.

FitzGerald advocates introducing the concept of person-centred
care, much like person-centred planning adopted by the learning
difficulties field, into caring for older people. He says: “If we
start to look at older people as individuals rather than just cases
it will create more flexibility in services.” Carers, he adds, must
be considered part of the support system needed by an older person,
and not external to it.

The growing shortage of care homes offering suitable respite is
also a problem. To address this, argues Lowe, local authorities and
government should make funding available for more respite care in
the home.

Carers were given a boost earlier this month when the government
announced its support for the private member’s Carers (Equal
Opportunities) Bill. The bill gives carers new rights to
opportunities for education, life-long learning and work.
Commenting on the bill, community care minister Stephen Ladyman
said that carers should be able to take up opportunities which
other people “often take for granted”.

Now is the time for more carers’ support services to reflect this
drive. Perhaps this could prevent some carers being driven to
breaking point.