"We were quite belligerent," says Ray Cregan, talking about the the time his late father Paddy was in hospital after a catastrophic fall followed by surgery. It was several years after his father had begun showing signs of vascular dementia at the age of 77. "There was lots of guilt-tripping," he says, as the hospital tried to get the Cregan family to take Paddy home, or move him to a nursing home.
The Cregans had determined that Paddy would move home to his own house: however, they refused to bring him home until they'd got a homecare package – entitling Paddy to some hours of care a week – and a grant so they could convert a garage into a wetroom, with a wheel-in shower. They paid privately for an OT's assessment and it took six months before everything was fixed so Paddy could move back into his house in Crumlin.
Most people say they want to live in their own homes until they die, and it’s Government policy to encourage this. But it’s hard to overestimate the level of determination family carers may need to make this happen; it’s astonishing that it can be so hard for families to get the supports they need to do so, given that family carers save the State money.
Ray, his mother and sister cared for Paddy at home for 10 years. In that time, they resisted turning a room downstairs into a bedroom until near the end, installing a stairlift at short notice at one stage that was useful for a few years, in spite of an occupational therapist’s insistence that it wasn’t the right answer. He admits: “At times you don’t like the OT because they’re telling you things you don’t want to hear. But generally, they’re right, they have a lot of valid insight.”
Eventually, a hospital bed was installed downstairs “in my mum’s good room”. Paddy died about a year-and-a-half later, in November 2015. Ray, who’s now part of the Alzheimer Society of Ireland’s Dementia Carers Campaign Network and currently campaigning for dementia care at home, has no regrets, although the 10 years weren’t easy. “It’s over now, but I’m pretty sure I’d do it again.”
It’s not just the Government that pays lip service to its policy of enabling people to stay at home rather than go into a nursing home. Given that most of us say that’s what we want too, you might expect sixty- and seventysomethings to to do some advance planning.
Yet many of us know fit older people who have downsized, say, to a second-floor apartment in a block with no lift, or to a house with lots of stairs. Nobody wants to turn their house into a nursing home – but can we future-proof our homes unobstrusively? Yes, says architect Fionnuala Rogerson, explaining the concept of a "lifetime adaptable house": this can simply mean that early on, you could make a downstairs toilet big enough to add a shower later.
Architect Neil Murphy of the CEUD (Centre for Excellence in Universal Design) agrees: the centre was established here by the National Disability Authority more than a decade ago to promote the design of buildings "that can be accessed by all to the greatest possible extent, regardless of their age, size or disability".
Anyone doing renovations should think of things like levelling access into their house, widening doorways. You don’t have to put in grab rails, just make sure the walls are strong enough take grab rails. The CEUD recommends that homes have “flexible or open-plan layouts with some ‘soft-spots’ like internal walls that can easily be removed for cost-effective adaptation as the family expands or contracts”.
Most of us actively avoid considering future disability, even though a future-proofed house looks pretty much like other homes. We wait until accident or illness forces us to make decisions, under pressure and in a hurry, scrambling to find the money to pay for the changes.
There are all sorts of devices and “assistive technologies” available to adapt your home for the needs of someone with a disability but when push comes to shove, the principal concern for most people will be having reasonably easy access from a bedroom to a safe-to-use bathroom/shower room. The biggest decision is often whether or not a person can still get upstairs.
It can cost anywhere from € 500 to €2,000 up to €30,000 to €40,000 to make your home disability-friendly. This may range from putting in grab bars and extra rails on a staircase to putting in a stairlift (€2,000 to € 6,000), adapting or creating a new toilet in the house (€4,500 to € 6,000) or building an extension to house a downstairs wetroom (€30,000 to €40,000).
If you have the money to pay for this yourself, the work may take only a couple of months to do. If you need a means-tested local authority Housing Adaptation Grant (or one of two other similar grants) to pay for the work, you might be waiting for months. The maximum grant available is € 30,000 and critically, you cannot start work until you have approval. Although the Government gave local councils more money this year for these grants, almost 5,000 applicants around the country are still waiting for approval – and at least one, Co Louth, has closed its scheme for new applicants this year.
"We've come across situations where people applied for a grant and were dead by the time it was approved," says Catherine Cox of Family Carers Ireland. "It is a big challenge for families when a member goes into hospital and can't come home until adaptations are made. The two things most families need are adaptations and a homecare package." The adaptations are, she says, often about a person not having to go upstairs.
The adaptation made and the cost will of course depend on why it’s needed and for how long: someone with dementia may have similar but additional needs to someone with simple mobility problems; someone with motor neurone disease different needs to someone with failing vision.
Occupational therapists are the experts who advise people how to live as normally as possible when faced with illness, injury or disability. An OT will do a full functional assessment of someone who needs it, looking at “how they participate in the home environment and what their priorities are”, says Mary O’Kelly, vice-president of the Association of Occupational Therapists of Ireland.
“You might like a shower twice a day and I might be happy with a strip wash. Family members often feel that a client must have x, y and z – and it’s not the client’s priority at all.” OTs try to provide solutions focusing on preserving what a person has always done, and on their dignity.
“We try to drill down to the least level of complexity, to provide what a person needs without compromising their environment,” says O’Kelly. Adaptations should start simple – grab rails in bathrooms, an extra rail on the stairs, raised toilet seats, shower seats, portable ramps are all standard. Then there are assistive devices, for example, one that lifts a person up and down in the bath. Age Action has a “care and repair” team that will do small jobs for older people, including installing grab rails, shower seats and the like in a home where needed.
Other devices available are “through floor lifts” that link two floors, going up through a ceiling, or shower/toilet cubicles, easily put into the corner of a room and taken away when no longer needed. The latter, that can be plumbed in and installed for about € 5,000, might, for example, be suitable for someone with a terminal illness who has maybe six to nine months to live and an OT may recommend that a downstairs room be turned into a bedroom, with a shower loo cubicle.
A through-floor lift that accommodates a wheelchair is expensive – costing € 15,000 to € 20,000 – but could be the right solution “for, say, a 40-year-old mother with a progressive condition who needs to put her children to bed upstairs”, says O’Kelly.
“People often want to fix things, build a big extension, but often, time is not on their side, and doing that can be hugely stressful. If we know that someone has a diagnosis that means they’re not likely to live for more than three to six months, we’d make a recommendation for an adaptation based on existing available space. For someone else, we might advise that while a stairlift might help in the short-term, a family will need a long-term adaptation plan.”
The important thing, says O’Kelly, is that one size doesn’t fit all, and decisions should be made in light of the specific needs of the individual, who should be consulted about what’s most important to them. An assessment by a HSE OT will be needed if you are applying for a grant, but if you don’t want to wait for an appointment with one, you can hire an OT privately to do an assessment. If the person for whom a home is being adapted has dementia, you may need to make other quite simple, cheap but important adaptations – and the Alzheimer Society of Ireland can advise you on this. Dementia isn’t just about memory loss, explains Tina Leonard, head of advocacy and public affairs with the organisation. It can be about problems with how your brain reads your environment. Some people with dementia develop difficulties of perception, cannot distinguish between a plate and the colours of food on the plate: it may therefore be important to make sure the food and plate are different colours.
People may also have difficulty differentiating doors from walls, so it’s important to paint them in contrasting colours. In the kitchen, signage is also important – labelling an oven, for instance, warning the person to put on oven gloves. One interesting suggestion is to create a circular path in your garden if you can afford to: disorientation is a huge problem for people with dementia, but if they like walking, they could walk on the path for hours without getting confused.
Ideally, our houses will be designed to be “flexible, safe, cost-effective and adaptable over time”, as the Centre for Universal Design recommends. A home built to universal design (UD) principles would suit both young parents with say, a double buggy and someone in a wheelchair; suit someone with a temporary injury or an older person with mobility problems.
HOW ONE HOME-OWNER FUTUREPROOFED HIS HOME
When Des McMahon was looking for a house a few years ago, he wanted it to be near shops and all other amenities and when he renovated it, he wanted to take into consideration his possible future needs, should be become disabled in any way. “I’ve seen the mistakes friends of mine have made, moving to very unsuitable houses.”
The Regency villa built in 1834 that he bought on Sandymount Road is within 200m of shops, a chemist’s, supermarket, three pubs, four doors from his GP “and if I get religion, the church is 50m away”. There’s a bus stop just 5m from his door and the sea is just 200m/300m away. He had lived in Sandymount before, knew the area and when he goes out, meets people he knows.
McMahon, who lives mainly on his own, is a very fit 76: he still runs his own overseas civil engineering consultancy, and recently swam the 6km-wide Hellespont that separates Asia from Europe in Turkey.
Architect Fionnuala Rogerson planned the renovation with that in mind. There is level access to the house – “I wouldn’t have bought a house with steps”. The double gates into the parking area – just 2m/3m from the front door at the front – have been widened and electronic gates installed so McMahon could easily drive out onto busy Sandymount Road “when I’m not so adept at getting into and out of the car”. A path to the front door has been widened so it could accommodate a wheelchair.
At hall level, there were two bedrooms on the right which have been turned into one guest suite, a bedroom with a bathroom that has a separate entrance from the hall. It has a bath with a shower but could be easily converted into a room with a walk-in shower, says McMahon.
There are six steps up from the end of the hall to his main bedroom, which does have a walk-in en suite shower. There are six steps down to the extended kitchen/diningroom/livingroom which opens into the back garden. A hand rail has been installed on the stairs, and a stairlift could easily be added if needed says McMahon. Other new features include slip-resistant parquet flooring; an intercom with controls at seat level from the front door to the bedroom and kitchen; light switches positioned low down; two WCs, one standard height, one high “in case I ever have hip or joint problems”, both douche toilets with a hand-operated spray ; an intercom with controls at seat level from the front door to the bedroom and kitchen; light switches mostly low down; electric sockets reasonably high, easy to reach down to; good colour contrast between doors,walls and floors in the garden, raised plant beds enclosed by a stone wall where you can sit while working on the flowerbeds
The renovation and extension was expensive, but McMahon reckons the extra cost of incorporating most of these features was negligible, perhaps € 1,000 to € 2,000. “The choice of house was the starting point.” And very importantly ,“my house doesn’t look anything like a nursing home.”