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'A Fair Deal it may be, a cheap deal it sure isn't' - the trauma of putting a relative into care

TheJournal.ie spoke to three people with recent experience of negotiating the HSE’s Fair Deal nursing home scheme.

shutterstock_150773027 Source: Shutterstock/Lighthunter

THE PROSPECT OF a loved one going into permanent care is one that many of us have possibly never even contemplated.

Unfortunately, it is something we should be thinking about collectively. Ireland’s population is getting older – in 25 years time, more than a fifth of Irish citizens will be aged 65 or greater.

The issue of nursing home care versus home care for the elderly came front and centre earlier this week via a powerful documentary on the subject, We Need To Talk About Dad, which featured RTÉ presenter Brendan C0urtney and his family struggling to cope with the care needed by his father after suffering a sudden stroke.

One of the key aspects of the programme was the protagonists having to come to terms, both emotionally and in terms of understanding the complicated process involved, with the State’s Nursing Home Support Scheme – the Fair Deal.

That scheme sees those who take it up (or their loved ones in cases of mental capacity such as dementia) contributing a percentage of their income and assets towards their own nursing home care – which would otherwise be prohibitively expensive.

Criticism of the scheme stems from the fact inheritances and family businesses such as farms are taken as means-tested assets – in theory making the passing down of a farm for example from one generation to the next more precarious.

Several reports in Irish media last week in fact suggested that farmers, in particular, were ‘bed blocking’ in hospitals – that is keeping relatives in hospital beds to avoid having to match the family farm against the Fair Deal.

Meanwhile, with a poll last week suggesting that 85% of Irish people would prefer to be cared for at home in their old age, Minister of State for Older People Helen McEntee confirmed in the aftermath of the documentary’s broadcast that she is committed to establishing a new statutory homecare scheme, with an initial public consultation concerning the scheme to begin in the coming months.

The Fair Deal however can be something of a perfect storm of emotional trauma and financial turmoil at a family’s most vulnerable moments. TheJournal.ie spoke to three people who have experienced the scheme at first hand in recent times. All names and locations have been changed.

Mark

Mark’s mother, who suffered from a chronic cardiac complaint, had lived with his brother for “five or six years” in the midlands before the family of seven siblings felt they could no longer meet her care needs. She died recently after a year-and-a-half in a local nursing home, aged 76.

“The home was about six miles out the road,” he says. “Right from the start she didn’t want to be there. But we had no choice, only half her heart was working. There was nowhere we could mind her.”

It was a fine old place, the home, an old agricultural place. But people weren’t lasting in there. In the television room it was either Daniel O’Donnell, or mass. You had women there playing with dolls, their whole head was gone. That wasn’t right for our mother really, there wasn’t a book she hadn’t read.

“She did know she had to go, because we simply couldn’t look after. But the way she looked at me. I’d never seen her look at me that way before. She had asked me to let her die, but that was something the family couldn’t do.”

Mark’s family had already lost their father to cancer aged 67. “My dad just wanted to come home and that was it. He was awkward and very, very sick. We had to do things, like is dignity went out the window.”

His sister dealt with the Fair Deal process on behalf of the family in the case of their mother. “She never complained of it,” he says of the scheme. “It was covered well with our mother’s pension. It only went up the once and the second time it did our mum was already dead.”

Of the home itself: “It was clean and tidy. But I didn’t like the look of the food, never did. There wouldn’t be a lot of food on the plate either”.

brendan Brendan Courtney in a still from We Need To Talk About Dad Source: RTÉ Player

Kevin

Kevin’s mother moved last October to a nursing home in Cork. All told his family went through a seven-week period between that and funding approval for the Fair Deal. She remains in the home, aged 92.

“I took early retirement from work in Dublin about ten years ago, so I was in a position to come down and live with Mum more or less full time,” he says.

She had been getting progressively worse, the dementia was becoming more obvious, she was incontinent and had a very bad hip that should have been done years ago but was basically beyond repair. So caring for her was a full-time job.
Last August she got an infection and was hospitalised, and that brought it to a head. And the medical staff said we had to think about whether we could really take her home again. It got to a stage where we couldn’t move her anywhere, not into a commode, a chair, a bathroom. Because of her dementia she wasn’t cooperating and it became impossible.

Kevin and his sister thus placed their mother on the waiting list for the Fair Deal. Given her dementia, it was necessary for him to go to the local Circuit Court to be appointed as a care representative on her behalf. That meant having her dementia assessed by two geriatricians.

“I’d been handling all Mum’s affairs anyway so I was familiar with all the paperwork. It was difficult with the court and with having to get very busy consultants to sign forms,” he says. “But it went to a court sitting and we were approved.”

You apply locally and then it goes to national level for approval. They then tell you what your contribution will be, and what their contribution will be. Apart from the fact it’s traumatic personally, I didn’t find it that onerous.
If you weren’t familiar with the person’s affairs and the paperwork, on top of someone being hospitalised, it could be a lot worse. But I’d had a managerial job, I’d done executorships, so it was something I could understand.

While for him and his sister the Fair Deal was relatively painless, Kevin can see how it could be far more problematic for others. “I’ve read about the farmers and having to declare the farm as an asset – there were all kinds of things like that we didn’t have to deal with. And all asset transfers in the last five years have to be declared. So if you gave your son a gift, well that’s fair game,” he says.

A lot of it is luck of the draw and timing, that determines how prepared you are. I think the court experience was easier than it would have been in a less rural place. And Mum’s situation was one we had a lot of time to deal with. A stroke like – that would be a slap in the face.

He says that his mother is “fine, thought she doesn’t really know where she is”.

“The facilities are excellent. She doesn’t remember you from one day to the next which is draining. The first couple of weeks are dreadful, but then you start having to deal with it.”

Of the Fair Deal, he says: “It’s not pleasant but it’s about as simple as they can make it.”

The thing is, it can be very hard to get to the bottom of. And a fair deal it may be, but it’s certainly not a cheap deal. Mum was fairly comfortable in her own right, but now the family home is mortgaged again, it takes 80% of her pension and her assets will depreciate. It’s horrifically expensive. But only for the first three years, and it is capped.

“Look, it’s a very traumatic time for anyone, you’re in such a vulnerable place. But any staff I dealt with were helpful, and I wasn’t trying to pull the wool over anyone’s eyes either. We had sufficient assets for it. If you didn’t you’re talking your relative becoming a ward of court, a 16 week wait minimum for a hearing, a minimum of four or five grand. If you haven’t made any arrangements it gets much more difficult at what would be an emotional time anyway.”

But to say the process isn’t fair? I don’t agree with that

shutterstock_249632863 Source: Shutterstock/Suwin

Darren

Of those we spoke to, Kildare native Darren found dealing with the Fair Deal the most difficult. His mother had been caring for his father. Both were aged in their 80s when his mother died suddenly. In the traumatic aftermath it became clear his father’s dementia was far further advanced than he had known, forcing him to seek a nursing home place.

“In early November the fire officer called me to say my mother was dead. We went down and dad, who’s 86, was very distressed. His brain went that week, he just kept wondering where she was. We stayed with him for the week and it was near impossible. He couldn’t accept that she was gone. It was a horrible situation,” he says.

We had some money put away so we got him into a home. He was there a month and every day we’d get there his bags would be packed ready to go home. Then we went for the Fair Deal.

Much like Kevin above, Darren had to deal with becoming a care representative via the courts.

“You have to fill out two forms, get the geriatricians, do all the research yourself, then speak to two doctors. Dad couldn’t make his own decisions, but nothing can happen until the Court decision comes through. Onerous and confusing would be an understatement,” he says.

The house then had to be valued, all his bank accounts, which we couldn’t get until a solicitor told the bank it was ok to do so. It’s taking 80% of his state pension, 80% of his private pension, plus 7.5% of the house and savings for three years. That’s alright if you’ve never worked a day, but if you’ve worked they take everything belonging to you.

Darren’s opinion of the Fair Deal is a succinct one: “completely unfair”.

“There’s no kind of rationale for it. The middle classes are paying a hell of a lot more, that promotes fraud, the undervaluing of property, not everything being declared, like if you gave one of your kids a gift in the last five years you have to declare it. The worry is your money will run out before the Fair Deal comes through. And then you think we shouldn’t have put him in a nursing home, we should have put him in a hospital.”

What would Darren do to improve the process?

“There’s about four different organisations you have to deal with – it needs to be combined so there’s only one,” he says. “And there needs to be a State adviser who can help people through this.  The amount of time I had to take off from work, I’ve a folder bursting at the seams with all the information I’ve had to process in terms of the Fair Deal scheme,” he says.

It’s bad enough that you’re going through this dreadful time of grief. It needs to be made easier.

Read: ‘You don’t want to be mean, but it is depressing’: Brendan Courtney on nursing home care for his dad

Read: ‘It’s the lifeblood of the community’: Protest as rural post office to shut next week

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