My
mother was left in limbo (Filed: 02/10/2001)
Christine
Doyle recounts an emotional journey
Many
experts think the entire system of how we pay for care of the elderly
needs to be transformed, not just reformed.
This
year, at the age of 88, the health of my mother, Dora Doyle, took a
dramatic turn for the worse. So did the relatively even tenor of our
lives, as I or my husband drove many times up and down motorways from
London to Lancashire to be with her. That was the least of it. It was
the choices that had to be made about all aspects of her life that made
me sleepless, anxious and guilty.
Until
this year my mother, although frail because of heart trouble, had managed
to live on her own, with some help, in her large Victorian house. She
took taxis, had food delivered and tried Meals on Wheels, though she
was not a fan.
Staying
in charge was important to her, and she was energetic, with a spirited,
occasionally wicked, sense of humour. She had driven ambulances during
the war, wrote articles and short stories, and ran the modest family
business when my father died. Then, never having been abroad, she began
to travel widely, writing and making new friends. She continued to write
poetry - she was adroit at catching a place and fixing a memory.
In
February, she fell and broke her femur. She was at high risk of not
surviving the operation for a half-hip replacement, but she realised
this and accepted her fate. She sailed through - only to be laid low
by two strokes as she recovered in hospital, adding to problems caused
by a first mild stroke years before.
The
strokes severely impaired her mobility and functional skills, though
not her mind. Her voice was slurred, which distressed her, and hesitant
brain cells caused her to lose concentration and left her unable to
deliver the right word on time. Have you done "the etcetera?"
she would ask. I usually knew what she meant, but she was frustrated.
She got about with a frame, but was at high risk of falling.
Throughout,
however, she clung to the hope that she might get home again. The growing
feeling among doctors and occupational therapists at Ormskirk and District
General Hospital was that she would be safest in residential care. I
started to look at care and nursing homes - a dispiriting task. The
best had waiting lists, the worst had dreary decor, and people sat around
in depressing circles saying little except, perhaps, to shout out "help
me". Even on a sunny day, this world seemed grey.
It
was difficult to make a realistic decision while my mother was on an
acute orthopaedic ward. The nurses and assistants were unfailingly helpful,
but I felt she needed a breathing space.
She
was eventually given a place in a rehabilitation unit, a joint NHS and
social services venture that was contracted out to a nearby care home.
Patients stay there for a maximum of six weeks and pay about £50 a week
towards the subsidised fees. Such relatively new units, known as intermediate
care, are a plank of government policy and are to be encouraged. The
idea is that most patients will be able to go home in due course, and
in practice about 85 per cent do so.
Staff
to patient ratios are good. Patients are taken on home visits and encouraged
to take an active part in their case conferences. This helps relatives
to feel that they are not solely responsible for making decisions.
It
became clear to my mother that she would not be able to manage at home
without substantial help, including at night. She was horrified at the
prospect, and at the cost - more than £600 a week for 24-hour care,
beside the cost of adapting her house.
Even
so, she would sometimes threaten to call a taxi, go home and "engage
someone". This was unrealistic, considering she could not even
make a cup of tea, but once the threat seemed so real that I cancelled
a trip abroad and hurtled up the motorway to see her.
We
also considered whether she would be better off in a residential home
in London, closer to us and her grandchildren. There are many arguments
for staying where you feel familiar and have local friends, and we rehearsed
them all. And there are many emotional and practical arguments, too,
for being close to your family.
Finance
increasingly became part of the equation. The only London nursing/care
home that three of us - myself, my husband and sister-in-law - said
we might contemplate for ourselves cost about £700 a week. We calculated
that if she lived the average four years that people survive in nursing
homes, she could afford it.
A
place came up at Springfield Court Nursing Home in Aughton, Lancashire,
which has a good reputation and costs £410 a week - much less than its
equivalent in London. We examined her finances and put her house on
the market.
I
wished I had heard earlier of the Nursing Home Fees Agency (NHFA), the
care fees specialists based near Oxford, and approved by Help the Aged.
It drew up four different ways to provide the required income over a
number of years, and lifted my anxieties.
It
began to seem that my mother might settle into her new environment.
We even took in her typewriter to inspire her. But no, it wasn't to
be. It was nothing to do with the Springfield care. It was her own insight
into her condition. She had begun to seem stronger, both mentally and
physically. We talked many times. "I am in limbo," she said.
"I think this is what is meant by the term." One day, she
said to me over the phone: "I feel as if I am in the House of the
Dead." I could not sleep that night, feeling I had to respond to
this overwhelming drive for independence.
The
next day, I called the NHFA and asked my adviser to calculate a fifth
option - round-the-clock care for my mother at home. Logistically, I
knew it would be a nightmare, but the agency was unfazed.
I
told my mother the plan. She paused - then said I would be giving her
back her freedom. She so loved her house, its "wild" garden
and the succession of birds that visited. For the first time in months,
I stopped worrying.
That
weekend, four weeks ago, my husband took her home for the day and cooked
her lunch. She podded the broad beans, the first domestic chore she
had tried since her strokes. "I am much happier when I have something
to do," she said. She seemed full of energy, as if truly alive
for the first time in months. She walked from room to room on her frame
and took the stairlift - nicknamed the "Bombay Express" -
upstairs, as if making the house her own once more. "I'll be home
the next time you come," she told my husband. It was as if she
had completed a cycle.
That
night, she died peacefully in her sleep, as she had always wished. We
are sad, but comforted to know that during the last few days she had
felt happy once more.
Everyone's
story is different. Some people are happy in nursing or residential
homes. But my conclusion at the end of a difficult year is that we need
to pioneer more imaginative ways to satisfy the deep wish of many elderly
people to carry on living at home.
