Stuck in the middle

Twelve years ago, Catherine Burke invited her mother to stay for a long weekend. “She had reached a stage when she couldn’t cope on her own,” the mother of two recalls. “I said, ‘Try it and see if it works.’ She’s been here ever since.”

As a parent who is also caring for a parent, Burke is a member of what’s sometimes called the sandwich generation, a class of squeezed-middle carers looking after both older and younger family members. “I never felt resentful,” she says. “She’s an easy woman to look after. She has a mild nature and an easy personality, and she gets on very well with my husband; they have a bit of crack together.”

Burke considers herself lucky for other reasons too. Her mother, Bridget, who is 90, goes to a daycare centre three times a week where she gets "lunch, physio and company; she absolutely loves it". The family also gets 16 hours of home help a week, partly through the HSE and partly the Carers Association. "If we were starting off now I expect we wouldn't get any of those services."

In the past five years, home-help hours have been cut nationally by about 15 per cent and, according to advocacy groups, the HSE is adopting a two-tier system of assessment.

“It seems that to minimise the risk of an outcry they’re cutting existing people just a few hours, but if you’re applying for home help for the first time you’re in trouble,” says Sean Moynihan, chief executive of Alone. “While it’s not stated policy, it seems everything is aimed at putting pressure back on the family and the community.”

For members of the "sandwich generation", the options for dealing with an ailing parent appear to be narrowing. In practice, the choice is often a stark one between upturning your existing life by taking up caring duties or admitting a loved one to a nursing home. Either way the strain is not just financial.

'Huge stress'
"There is huge stress on the family, and there can be huge feelings of guilt," says Jean Manahan, head of national development with the Third Age advocacy and support group. Adult siblings can fall out over an uneven spread of the workload, and marital relations can suffer. "There is typically a sense of panic," she says. "People are trying to juggle different responsibilities – rearing their own children and looking after their parents. It's a terrible pressure."

For Manahan, the root of the problem is bad planning, at both micro and macro levels. Families tend not to think about a parent’s ageing until it becomes a crisis, while the State is continually kicking the issue of our ageing population down the road.

It is estimated that people aged 65-plus will increase from 11.7 per cent of the population in 2011 to 15.4 per cent of the population in 2021. Yet services are dwindling, not expanding.

“It’s a debate that needs to happen publicly. It’s not that all of us are going to end up physically frail, but we do, as families and communities, need to look at what keeps us healthy and what physical environment will help us as we age.” This stretches from whether your home is isolated from the community right down to whether your house is fitted with a bath or a shower.

Although Manahan is not opposed to nursing homes, and notes that “they get a raw deal in terms of image”, she says “the preferred option for many people is to stay at home”.

This truth, she says, is being lost in the current debate about the future of the Fair Deal scheme, and whether nursing-home care is best provided through public or private operators. “We want to cut through the debate about public and private and try to give people a real choice. At the moment that choice is not there, and unfortunately people end up in institutional care way before their time.

“One of the big problems for families is very little information. You are in a crisis, and you don’t know where to go. You might go down to A&E and sit there for days or months and then the only option seems to be the nursing home, and very often all people are looking for is support.”

Advocates for older people say the health system assumes that a family member, typically a woman, will take up the caring role. But this is becoming more unrealistic because of social and demographic changes, Manahan points out.

“You find situations where the husband is unemployed, where women are at work, where people have emigrated or are travelling long distances to work. All these societal changes make it more difficult for the ideal where we have intergenerational care. My intuitive sense is we need to go back to that.”

Not, she stresses, to a situation where responsibility falls back on the youngest or eldest daughter but to one where the extended family and community are involved – a “third way”, she calls it.

“The situation of women is very much changed.” Previous generations didn’t tend to look for help, or complain about being put upon, but “I think the generation coming up will be much more demanding”.

The Ombudsman, Emily O’Reilly, captured some of the frustration of families recently when she spoke of the lengths people had to go to in order to get very meagre homecare packages. Criticising the “warehousing” of elderly people in private nursing homes, she warned that society was unprepared for the “increasing pervasiveness” of dementia in the years ahead.

Sean Moynihan says waiting lists are now being formalised for the Fair Deal scheme, so even those approved may have to wait months for a suitable place. “In every other area of the health service there are targets of reducing waiting times. But in the case of nursing homes there is an ever-increasing waiting list.”

Some homes will cherry-pick patients with more manageable conditions, which means families often have to beg and bargain, he says, citing the example of one Alone client who needed the intervention of a junior minister to get a patient with Alzheimer’s into a home.

“The relationship families have with the nursing home is like with the local school; you have to be quite delicate. The individual is minding a relation of yours. If you become too demanding they can ask the person to leave.”

Power imbalance
This power imbalance also worries Eamon Timmins of Age Action. "I don't think anyone would openly admit they are accepting substandard care for their loved ones, but people have no way of knowing short of going down unannounced to see what standard of service is being provided. Even then you have to know what you're looking for."

He recommends families read the Hiqa reports into nursing homes that have been closed down, as “they give you a good insight or a feel for what they are about”. While nursing-home standards have improved dramatically since the Leas Cross scandal, he warns that home-help services are still completely unregulated. “Just because you are paying a high price for home help, it doesn’t necessarily mean you are getting quality.”

For many people feelings of guilt linger long after a parent has died. One woman who doesn’t wish to be named says she now regrets putting her father into a nursing home alone, which meant separating him from his wife.

“My mother would go to see him, and she’d always say, ‘I wish I could stay with you,’ and I suppose I didn’t fully recognise that because you’re older it doesn’t mean you don’t need intimacy.” It was, she adds, the most stressful period of her life. “I was doing a day job and looking after my children. It was absolute hell.”

Burke is grateful she has avoided the nursing home, and emphasises the role of home help in making it possible. “Without it, we would never get a break.” If you can get the support – and that’s a big ‘if’ nowadays – looking after an ageing parent “can be a very positive thing,” she adds.

“We never felt we missed out on anything important. To me, it’s like going back to how it was with extended families looking after one another.”

And there are benefits for her children. "They would go and sit with her for a while and chat with her, and they'd even watch DVDs with her, Father Ted and that," she says with a laugh, "inappropriate for them both."

You can find i nformation for families
about caring options for an older
person at myhomefromhome.ie