Click
here to take part in The Times care home survey
A faded hand-tinted wedding photograph and a painted porcelain plate are all
that remain to remind George of the life he once had. The plate, hanging
above his bed in a Cornish nursing home, depicts a farmer silhouetted by the
setting sun guiding his plough behind two giant shire horses.
That is how George's son Martin, one of many Times readers who contacted us
about care homes, likes to remember his father. George is now in his
nineties and lying in a cot motionless, his mouth open to reveal a few
remaining teeth - as helpless as a severely disabled child.
“I remember him with thick black hair, very handsome, running the farm
virtually single-handed,” says Martin, 59, a former social worker. He has
invited us to meet his father because of his concerns about the treatment
that he is receiving. Martin is able to make only occasional visits as he
lives a seven-hour drive away, which adds to his guilt and anxiety about his
dad .
“He was a very capable man; he had to be, looking after the horses,
maintaining machinery, caring for the livestock, repairing buildings.”
George is one of more than 440,000 elderly people living in “God's waiting
room”. And it is becoming increasingly crowded. This year one person in
three among the population will reach 50 and over. By 2051 the over-85s will
reach four million, so a nursing home will be the ultimate destination for
many more of us.
Charities insist that long-term care must become fairer and that elderly
people should not be penalised by saving throughout their lives, only for it
to be snatched away in old age. In the spring the Government will publish a
Green Paper on long-term care for the elderly, which will look at how to
make it more accessible and equitable.
Meanwhile, families and the elderly - many of whom are often suffering from
dementia and have to pay for their care, the so-called self-funders - are
battling against boredom, crippling fees, overworked staff and dirty rooms.
And they have no system of redress - they have become a generation that
society has forgotten.
Today, after two strokes, George cannot even hold a child's plastic drinking
cup. He is unable to reach the buzzer to summon staff and when he reminds
them and they place it in his hand he complains that no one comes when he
buzzes.
His room at the home is clean, tidy and bright. But there is nothing to occupy
his mind as he cannot see or hear well enough to read or watch the TV and
conversation is difficult. His only stimulation comes from family visits,
but they can be days apart and upsettingly brief. He shouts and cries as his
frustration surfaces, which only adds to the family's feelings of guilt and
helplessness and a desire to cut the visit short.
George wakes with a start as visitors arrive. His eyes are a piercing blue but
see little. “Is that Martin?” he asks. There are two cuddly toys on his bed
and a vase of flowers from the grandchildren on the window sill. Asked if he
has eaten, he becomes distressed and replies in a voice that is part-shout,
part-sob: “Yes!” Did you like it? “No! No! I didn't like it!”
Martin is one of the few who can hold a conversation with his father. Many of
the staff are foreign-born and struggle to understand the elderly, let alone
one recovering from a stroke. Once Martin, who is divorced, hoped that his
father would be able to leave the home and return to the bungalow that they
had shared. But he sees no prospect of that without therapy, which the home
seems unable to provide.
Martin says: “There is no stroke chair, no physiotherapy. I brought in his
sticks, not because there is any prospect of him walking, but because he
asked for them. They represent freedom for him. When I put the handle in his
hand he held it. He thinks he is unable to grip but I saw him do it. Why
can't someone at the home do that? They just tell him that he can't do
things rather than trying to help him do them himself.
“He looks dehydrated to me and should be drinking a lot more than he is, but
the staff seem too busy to check his fluid intake. I have tried making a
fuss but no one seems bothered and social services won't let me move him.”
George gets regular visits from others in his family, including his daughter,
who lives near by, and Margaret, a widow who became a friend ten years ago.
Margaret took me into the home, pointing out the lounge where a group of
residents were enjoying a natter and a joke with members of staff. George is
paying £775 a week for his care and accommodation. Even that buys him little
dignity, says Margaret, a former hairdresser. “His toenails badly need
cutting and when you run your hands through his hair it feels lumpy and
dirty. He often smells unwashed and although he has a clean shirt on today,
it's not his,” she says.
A stroll along the corridor reveals other elderly men and women in the home
slumped in their beds. The sound of laughter from the residents' lounge does
not reach this far. In this wing the residents breathe, they eat, they
exist, but that is about it.
But this is not a hospice. These people are merely old and because that is a
condition from which they will never recover, they have been made
comfortable and left to wait for death. It could be a long time coming. They
have been spared the release of illnesses such as pneumonia, once described
as the “old man's friend”, thanks to flu jabs and the antiseptic gel with
which every visitor is asked to clean his or her hands. But they are given
little or nothing to fill their time. Malcolm Cowley, the American novelist,
once wrote: “They tell me that you'll lose your mind when you get older.
What they don't say is that you won't miss it very much.” For many people
that is not true. The confusion of losing things, of unfamiliar surroundings
and unfamiliar faces, of not knowing who or where you are, is immensely
distressing. The Government's watchdog, the Commission for Social Care
Inspection (CSCI), estimates that 2.5 million older people need some form of
care and support. Of those, 850,000 have high levels of need. But councils
now restrict care to those with critical or substantial needs, so that more
than 280,000 older people in need receive no services or informal care at
all.
Dementia most often amounts to critical need, but even then sufferers who own
more than £22,250 in property and savings will find that they must finance
most of their care themselves.
More than one third of us will suffer from dementia before we die and that
figure is proportionately higher in nursing homes. Dementia does not just
affect its immediate victims, it is disturbing for other residents forced to
share their final years with sufferers. And it places a huge burden on staff
who have to look after their most intimate needs. As a result, the cosy
traditional view of an old people's home, as a place where merry widows and
twinkly eyed old men could exchange glances over a hand of whist, has long
gone.
“More people are living long enough to suffer from dementia so it is a growing
problem,” says Leon Smith, chief executive of Nightingale, a Jewish charity
that runs a large home in South London. “Two thirds of our residents are
suffering with dementia at some level. The vast majority of people who move
into residential homes these days do so not for social reasons, they do so
because they are unable to cope at home.”
He claims that new rules make homes harder to run than before. “We have gone
from being a sector with relatively little regulation to a sector where
virtually every aspect of our activities is regulated, perhaps
over-regulated, from staffing levels to the size of the rooms to the
temperature of the water.”
At the same time, care homes have become big business, generating billions of
pounds. One carer, who wrote to The Times and worked at a home for more than
30 years, says that her original owner's interest in the welfare of
residents and staff was replaced by the need to generate profits once it was
sold.
“The original owner believed that it wasn't fair to the residents to mix them
with dementia sufferers. Now we have a mix of elderly people in full
possession of their faculties and a quarter of the residents who suffer from
dementia,” she says.
“Before, the home smelt clean with the odd waft of the old ladies' perfume.
Now, through no fault of their own, the dementia residents defecate and
urinate as and where their body demands. The new owners find it easy to fill
vacant beds with dementia sufferers, so the living standards of all have
gone downhill.”
In addition to the guilt felt by children, who find themselves with no choice
other than to put elderly parents in a home, there is a widespread fear
among self-funders that their treatment is dependent on good behaviour and
not complaining. Almost half of the 440,000 care-home residents in Britain
are self-funders and have nowhere to turn when disputes arise with care-home
managers. The Government has promised a tougher inspections regime and new
complaints system, when the CSCI is replaced in April by a new body called
the Care Quality Commission, which will have an enhanced range of
responsibilities.
Vivian's 94-year-old mother Dorothy was given notice to quit after she
complained about the executive's dog, which kept leaping up at her. Dorothy
is frail, has restricted vision and arthritic limbs and she is unable to
dress or clean herself. She has been paying around £4,500 a month for care
at the home, but her daughter was not satisfied even before the arrival of
the dog.
Vivian says: “Service was not brilliant, cleaning and washing being undertaken
only once a week, but we covered these shortcomings by performing services
ourselves or by asking staff to attend where the hygiene aspects had become
unacceptable.”
However, the real problems began only when the executive adopted a dog. “The
dog was very boisterous and seemed to have free run of the home. It
scavenged, drank from cups in the bistro, ran into people and seemed out of
control. It kept barging my mother's arthritic hand and she became terrified
of it. My daughter witnessed it being called and it ran past her while she
was carrying hot cups of coffee,” Vivian says.
“Staff and residents seemed concerned, so I went to have a word with the
executive. I quickly found out that the dog was ‘not negotiable'. My
mother's problem was dismissed as nonsense and I was subjected to an
aggressive verbal attack.”
Later her mother fell and became trapped between furniture in her room. She
spent 18 minutes in agony despite pressing the emergency buzzer on her
pendant. When Vivian's brother wrote a letter of complaint, the response was
a notice for her mother to leave the home.
“It seems incredible that a frail, blind and entirely innocent old lady can be
treated in this way simply because relatives have been concerned at some
endangering aspects of her treatment in care,” says Vivian.
Unable to find anywhere to take her mother at such short notice, Vivian was
then banned from the home for her “divisive” action in reporting the matter
to the Social Service Inspectorate and the local council. Eventually, after
an appeal through her solicitor, the home's owners relented and allowed her
mother to stay until alternative accommodation could be arranged.
The standard of care has since deteriorated, Vivian claims, and she fears that
her mother is being punished for her family's complaints. “My mother is now
often to be found in a filthy room in dirty clothes without her bed made for
half the day and with old plates of food on her table. As she is virtually
blind and can walk only a very small distance to the loo on a wheel frame,
there is little she can do about this mess herself.”
Even well-run homes have difficulty providing more than basic care. Alison's
father Edward has been in a nursing home since suffering a stroke, but
instead of helping him to get better, staff have little time to do more than
ensure that he is fed and given something to drink.
She says: “Nursing homes are not set up to help to improve the patients'
lives. We mistakenly thought the home would provide the physio, a wheelchair
for someone who is a tall man, mental stimulation and trips to the toilet,
despite my father being ‘hit and miss.
“Instead, more than 18 months later, my father is in pads, on a restrictive
puréed diet and we buy-in the services of a physio and a reflexologist. We
have no contact with social services. So instead of continuing to improve he
has levelled out and in some ways degenerated.
“I take my dad out several times a week and he comes to life then. Instead of
being ordered to sit still, eat quickly, go to bed, sit up, he is consulted,
he is considered and he is cherished. His personality reasserts itself.
“The residents are left in a large room with the TV just beyond their sight.
There are no communal papers to read. The food is poor and mass-produced and
often it is oven chips for tea with a slice of spam or tinned tomatoes. And
always cream cake for pudding. Try that night after night.”
Charities such as Counsel and Care insist that older people are “baffled by
the care system” and that much of their frustration and confusion would be
removed if the system was simplified, with nationally defined entitlements,
which would ensure that everyone who has a care need would be able to acess
the support he or she lacks, wherever the person lives.
But the elderly have little pulling power with politicians, so for years these
pleas have fallen on deaf ears. Now the Government is promising that a new
system will mean at least that everyone will be entitled to an assessment of
need, proper advice and information about residential care options and legal
protection for appeals, even if they have to pay for the care themselves.
That way no council will be allowed to abandon those living in its region as
soon as they find out that their savings are above the minimum threshold, as
local authorities frequently do at the moment.
However, it will be a steep mountain to climb. Charities describe the care
system as being in “crisis” and one that will be dealt with head on only
when society accepts that the needs of the elderly are as important as those
of newborn or disabled children.
All the names have been changed.
Tell us about your experience of care homes by clicking
here
Click
here to sign the care homes petition
Where to get advice
FirstStop advice for older people (firststopcareadvice.org.uk;
0800 3777070)
Counsel and Care (counselandcare.org.uk;
0845 300 7585)
Anchor Trust (www.anchor.org.uk;
020-7759 9100);
Saga (saga.co.uk/ltc;0800 0566101)
Help the Aged (www.helptheaged.org.uk/en-gb/AdviceSupport/;
0808 8006565)
NHFA Care Advice Line (www.nhfa.co.uk;
0800 998833)
Commission for Social Care Inspection (www.csci.org.uk;0845
015 0120)
Age Concern (ageconcern.org.uk;
0800 009966)
