Putting my contented mother in a home was ‘the hardest thing’

Deirdre Pauley still feels “massively” guilty about having to arrange for her mother to go into a nursing home. “It’s the hardest thing I have ever done. Even now it brings tears to my eyes,” she says, sitting in the living room of her south Dublin home.

But it is a reflection of Deirdre’s dedication as a carer and the independent spirit of her mother, Eileen Crowley, that she managed to remain in her own home up to her mid-90s.

It was only this time last year that Deirdre felt she had to apply to the HSE for a home-care package for her mother. A widow since 2006, she had down-sized to a bungalow in Foxrock and was “very content in her own space”, says Deirdre. “She didn’t like going out to activities – just happy in her own place, or for me to take her out.”

However, with the onset of vascular dementia, there was a change in character, increased forgetfulness and a general slowing up. Four months after the application, her mother was judged to need 10 hours care a week – an hour in the morning, half an hour at lunch and half an hour at tea, Monday to Friday – and an agency was to deliver them on behalf of the HSE.

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But Deirdre did not feel the hours were adequate, in particular, the half-hour shifts that hardly gave a carer time to walk in and say “hello” before it would be time to leave. So she paid the agency to extend the half-hour visits to an hour, and contracted another agency to provide three hours on Saturdays and Sundays, while she continued to call in daily too.

It took time for her mother to get used to carers coming into her home – one told Deirdre she refused to talk to her for the first two weeks.

“She was a very strong character. I knew it would be a major adjustment for my mother. She said to me ‘why? I am totally fine’. They just don’t see they have moved on.”

However, after a while, Eileen seemed happy with the arrangement – until illness required her to be admitted to hospital in March. As Deirdre went about applying for extra home care on discharge, her mother was assessed and it was deemed that she now needed full-time care.

“She became immobile while in hospital; she just stopped walking,” says Deirdre, who was forced to start looking for a nursing home because paying for that level of care at home was out of the question. There is no statutory right to home care, with no equivalent of the “fair deal” scheme that funds a nursing home place.

Common dilemma

The dilemma Deirdre and her three siblings, two of whom live in the UK, have faced over what’s best for their mother are shared by many. And the lack of State support for staying at home or in supervised community accommodation is a familiar theme.

The results of a survey conducted by Active Retirement Ireland among some of its members earlier this year showed they are almost unanimous on one thing – 99 per cent do not want to spend their final years in a nursing home; they would prefer to age in their own home or in a supported community setting.

But that statistic was not the stand-out figure for the association's head of communications, Peter Kavanagh, who expected such aversion to the idea of a nursing home. However, "what is surprising, is that a third of people think they won't be able to avoid it", he points out.

That is a reflection of a system that channels older people towards this one option, due to the lack of an alternative.

Currently, the HSE’s grossly underfunded home-care service can’t hope to meet the need. Yet, on the grounds of health economics alone, there are compelling arguments for timely and flexible supports to keep people happier and healthier at home and to avoid hospitalisation, or at least minimise time spent in hospital.

The other worrying aspect for families is that there is no regulation of the home-care sector. Over the past two decades, many private agencies have stepped into the vacuum to provide services for those who can afford to pay – as well as delivering home care on behalf of the HSE, which did, in 2012, introduce quality standards for providers it uses.

But now the Government is taking one small step towards regulation and developing a statutory scheme for home-care services by embarking on a public consultation on the matter – the closing date for which has been extended from August 31st to October 2nd. This first stage of consultation by the Department of Health is aimed at people who use home care services, their families and the public.

Have your say

Catherine Cox of Family Carers Ireland welcomes the extension of the deadline and urges people to have their say. Any home-care scheme has to be for all ages, she stresses, and not just those aged over 65, to encompass those with physical and intellectual disabilities.

“It is going to be a slow process and in the short-term we need funds to be put into home care. We can’t wait two years for this to happen; there are huge pressures and challenges there at the moment.”

The HSE will spend about € 370 million on home care his year, with about 56,000 people receiving some sort of service, with another approximately 4,600 people on the waiting list, according to Department of Health figures.

While home-care systems in other countries have been examined, Cox believes Ireland is different and we need to design our own.

“We have such a culture of caring, and the majority of [family] carers want to care but can’t do it without support. You need to include carers as part of the solution.”

Ireland is at a crossroads, says Ed Murphy, chief executive of Home Instead Senior Care. The State needs to decide if it is serious or not about investing in home care after years of rhetoric and no action.

For the past 10 years, there has been much the same State budget for providing home care, yet a doubling in the numbers of people needing it. This, he says, has resulted in a “cheap and nasty” public system, with, in some cases, carer’s shifts being cut to half-hour visits, for which they might have had to drive a considerable distance in rural areas.

“In a half-hour, it’s impossible to get somebody out of bed, shower them, dress them and feed them,” he points out. And his agency, whose work is about 55 per cent for private clients and 45 per cent on behalf of the HSE, has refused to do such short shifts, unless it is just a call-in service to check, for instance, that medication had been taken.

Any move to introduce a statutory right to home care will be too late for Deirdre and her mother. “If the option had been there, I would have loved it. That would have always been her wish and you try to go with what their wishes are.”

However, she is happy to report that her mother has adjusted well to the “brilliant” nursing home. “She is happy, she is content. What more can you ask for?”

“Have your Say”, the online questionnaire for the public consultation on home care, can be found on health.gov.ie. Closing date for submissions is now October 2nd.

swayman@irishtimes.com