Into the twilight zone

In another world, where grey deference is dead and ageism is an outrage, a stylish, funny, straight-talking older woman such …

In another world, where grey deference is dead and ageism is an outrage, a stylish, funny, straight-talking older woman such as Ann O'Dwyer might have a slot on television. She has been a nursing-home locator for 13 years and, day after day, her work takes her into one of the last hidden corners of society: private long-term care for older people.

Does anyone choose to live in a nursing home? O'Dywer wouldn't. And it's not because she thinks they are pits of hell. She has great sympathy for the owner-operators who are deeply involved with their residents and, in times of staff shortages, work months without a break.

She also defends a couple of places that may look "half shabby" to the visitor but excel at creating cheerful, caring atmospheres, and she has scant time for the kind of family that demands occupational therapy "24 hours a day" for their mother when what she needs is a loving arm around her and the kind of relaxed, pottering-around routine she would have developed were she still at home.

"The reason I wouldn't go to a nursing home is because you lose control. That's the hardest thing of all - you're the boss of nobody. All of a sudden, the young one who gives you the tray is calling you Mary; you're a non-person, you're Room 23; you can't make a cup of tea or even give your family a cup of tea. Everything stems from that lack of control.

READ MORE

"I'd be attached to things; I'd like my own bed, a desk, a chair with me, but in most places, if what you want to bring doesn't fit in the wardrobe, forget it. In America, many places have a basement in which everyone has a big locker, so they don't have to get rid of everything; here, they'd be looking on that as another space they can make money from.

"Now, that's a generalisation, of course: there are places here that let you bring your own furniture and some have tea and coffee points, for example. These things are possible, but what's needed is the will."

So why would a relatively healthy person commit herself to a nursing home? "I find that what makes many people throw in the towel and leave home is not because they can't cook any more or even that they're too lonely. It could be something as simple as the fact that their garden, which was once their pride and joy, has become a wilderness and they can't get anyone to maintain it."

Take the woman who was living alone, existing happily enough on her pension in her modest old neighbourhood. She refused to be fearful, even when thieves stole the lawnmower. Then the neighbourhood suddenly went upmarket, with houses such as hers going for silly prices to beneficiaries of the boom.

When a delegation of new neighbours knocked on her door, she happily invited them in. They were there to tell her that her unkempt garden was letting them down. She explained about the mower and the difficulty of maintaining a garden. No problem, they said. "In the old days," says O'Dwyer, "those neighbours would have sent in a couple of their idle young lads to mow the lawn for her." Instead, they sent around a garden-maintenance company, which charged her £110 - more than a week's income - for the work. "That's when she threw in the towel."

Some 80 per cent of O'Dwyer's clients live on a pension and can barely find her modest £45 fee. "They're of a type who have never had dealings with government agencies and have no sense of entitlement or rights. They wouldn't even know what questions to ask." Finally, the price of peace of mind is the sale of the house and their independence.

The few sheltered-accommodation developments have five-year waiting lists. Residential care is still confined almost exclusively to nursing models of care. Clonmannon remains a byword for disaster.

Public-private partnerships, such as Kilmainhamwood retirement village, near Kells in Co Meath, with its mix of private and social sheltered housing, a day-care centre and a beautifully designed nursing home, may be a start. The venture was spearheaded, partly funded and continues to be run by the community; as such, it's a model worth investigating for others.

But on O'Dwyer's beat in Dublin, the biggest challenge is when a high-dependency client comes knocking. The scarcity of such beds at any price has resulted in people being left in acute-hospital beds for eight months or more. "We're talking staff-resident ratio all the time in these cases," she says.

In a family-run home such as Tara Winthrop Private Clinic, near Swords, Co Dublin, the ratio is 1:1. Mary McCormack, one of its owner-managers, can maintain this ratio only with the help of nurses and care assistants from the Philippines and other countries outside Europe; they comprise a third of the staff.

"Only for the Filipino nurses, we would be out of business." Staff shortages and wage increases have sent fees soaring by 30 per cent in the past couple of years. "Between expenses and hospital training, it costs £3,500 just to put a Filipino nurse on the floor."

Almost every staff member is involved in a training programme. Some are qualified in oncology and palliative-care nursing; Catherine Dunleavy, the director of nursing, was an intensive-care nurse; McCormack is part of a small team working on an EU-sponsored project to produce a definitive manual on care for the elderly and children.

In one spotless wing, the high-dependency residents range in age from 20 to 97. In another, where many of the residents are frail or suffer from dementia, beautifully groomed men and women wander to and from the in-house chapel or therapy of various kinds. There is a married couple who have their own double bed, and next door a bedroom has been converted into a private sitting room for them; she's off at therapy, he's in his armchair, sipping a whiskey, surrounded by newspapers. Come lunchtime, they'll be padding off to have lunch in a spacious, bright dining room.

Fees here are not low, but by Dublin standards they're average: £550 per week for a single en-suite room; those with high dependency pay an extra £45. Some are clients of the health board, which pays their fees in full.

Tara Winthrop Private Clinic is not unique. There are other homes with equally dedicated staff who try to make them seem less like antechambers to death. But without guidance of any kind, the stress on families who have to make this journey for themselves, often at the height of a family crisis entailing heart-breaking emotional and financial decisions, can only be imagined.

A colleague seeking to transfer her father to Dublin from a nursing home 200 miles away began, as usual, with the health board's list of approved homes; it lacked even a rudimentary price guide or information on accommodation. "There is no map, either physical or metaphorical," she says. "It's uncharted water and you head out there pretty much on your own."

In a couple of months, she visited 22 places within a 15-mile radius. A state-of-the-art building would have been nice, though rare. In the end, the three she put down his name for made up for what they lacked in design and convenience with caring atmospheres. But the exercise was draining and upsetting.

While some of the things that disturbed her were small - rooms that were dark and pokey, and chairs which were without armrests (unhelpful for people with mobility problems) - they were indicative of a certain mindset.

"A few more serious things stand out, like one of the staff in a home giving little slaps to some of the residents. Affectionately or patronisingly, who knows? It shouldn't have happened. Or seeing people prevented from moving by having tables screwed in front of them, but left with nothing to do. Doubtless, there might be good reasons for this sometimes, but it seemed that having more staff might have made this restraint unnecessary."

She learned to look for certain things: numbers of staff on duty and how they behaved towards patients; an owner-manager - "usually a sign of better control"; places that allowed residents' GPs to visit; sample menus; a mechanism for feedback; liberal visiting times; some predictability about fees and how often they were reviewed. Overall, she found a huge variation in levels of physical and emotional care, with the highest standards not necessarily commensurate with the highest fees. On average, the weekly charge in the Dublin area is £500-£550, climbing to £700.

For her, a template for a good nursing home would feature a publicly stated charter, an exercise and physiotherapy regime, regular visits from schoolchildren and others in the area, bingo and social outings, a varied menu, good washing facilities and a pleasant, cheerful, caring environment.

"The last of those things is probably the most important. In the end, my father died in such an environment, but 200 miles from his family. Although I had put his name down for a place in three homes, he died before any of them had a vacancy."

Although nobody could have made the decision for her, a locator such as Ann O'Dwyer could at least have narrowed down the choices and provided some much-needed practical guidance.

Which of us, at such a time, will remember to ask if incontinence-wear, hairstyling or certain types of laundry are considered extras in terms of charges, for example? Or if there is regular access to a garden? Or if the resident can bring a desk or things they hold dear? Or if they might be eligible for a subvention, or whether a covenant is a good idea to help ease the burden of nursing-home fees?

Paul Costelloe, secretary of the Irish Nursing Homes Organisation and joint owner-operator with his wife of Tara Nursing Home in Bray, while agreeing with many points made in yesterday's article, is anxious to point out that there are "many private nursing homes who are very dedicated, very open to the needs and the dignity of the individual.

"The more the family gets involved, particularly at the beginning, the more the operators can come to understand the needs of the individual . . . and the more the person will benefit."

O'Dwyer is realistic about what lies ahead. "Part of our problem when we go into these places is that we expect to see the person as they were - but usually they are there because they are not as they were."

It's worth noting that depression is the great unrecognised, untreated problem in the elderly, according to Dunleavy.

But how are we to know? It all goes on in a kind of twilight world about which most of us are fearful and wilfully ignorant - a world which, in one form or another, awaits us all.

Ann O'Dwyer is at the Retirement Home Information Service (01-2691832)

Information on dementia and dementia care is available from the Alzheimer National helpline at 1800 341 341