My mother was left in limbo (Filed: 02/10/2001)

Christine Doyle recounts an emotional journey

 MOST elderly people passionately wish to remain independent: the prospect of living in a residential or nursing home fills them with dread. But very few of us do any planning, so a move, when it comes, is emotionally highly charged and financially brutal. The cost of care is a huge burden for individuals and the Government. Most people want nursing and personal care (much of which amounts to nursing care) to be free, as it is in Scotland.

 About 450,000 people are in a residential home and about 70 per cent have some or all of their care paid for by the Government. From this week, nursing care for the 42,000 old people who pay their own fees will be "free". But they will still have to pay, on average, 200 a week for personal care and accommodation. Furthermore, the extra money for nursing - patients will get "allowances" of 35, 70 or 110 - will be paid directly to the home. Critics fear that patients will enjoy little benefit as the new allowances will be "absorbed" in rising fees.

Many experts think the entire system of how we pay for care of the elderly needs to be transformed, not just reformed.

 Practical help on all fronts is essential. Today, we start a comprehensive three-day guide to getting the best advice, choosing homes, financing the care, and assessing whether elderly people are able to stay at home.

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.

 

 Reprinted with kind permission of The Daily Telegraph