The long goodbye – designer Deborah Veale on her father’s dementia

When someone is suffering from some form of dementia it can be hard to spot the signs. If that person is an older adult, the onset of a certain forgetfulness, even the occasional out-of-character behaviour, can be easily ascribed to age. Who, after all, wants to broach the possibility of this most awful of diseases? For Deborah Veale’s family, there was a whole other, terrible reason for not really clocking the first signs of the disease in her beloved father Ken Meehan. In 2000, Deborah’s younger sister, Alacoque, a mother of one, was diagnosed with cancer which would eventually claim her life at the age of 42. When you are dealing with a terminal disease, existence shrinks to the effort of getting through the days, to holding yourselves together in order to do everything for the person you love.

“During my sister’s illness, when she was really ill in the UK, we didn’t have the time to really look at what was happening (with dad),” recalls Deborah. “And without being light-hearted about this in any shape or form, it was something that wasn’t an immediate danger. But luckily I think Dad never had to really process losing my sister.”

Ken Meehan is an architect by profession, a creator of what Deborah describes as “dream homes”. He practised in Arklow, the family lived in Avoca. “It’s why I love the smell of paint and glue and concrete,” Deborah, whose manner is always gentle, says with a smile. “Because it was an adventure; a big treat would be to go out on a Saturday morning measuring.” Retired, he was in his seventies when they got the diagnosis.

“Poor Dad wasn’t doing so well. And it was very slow,” she recalls. “We had our dad for a long time. The thing that you really feel about this is you’re just terribly sad that at this stage of life he should be relaxing, he’s happily married. That’s been a big loss, to my mum, Anne. And it’s the long goodbye. It’s heart-breaking, but within that, you cope.”

Getting a diagnosis proved difficult, she says. “Because dad is a very smart guy. I’m not sure if the tests that they give you to define what this is are up to the scale of how complex it is. So it’s difficult to diagnose it, especially when someone is elderly. And such a gorgeous, happy human being. He wasn’t showing any signs,” she reflects.

“To be honest, the most confusing it got was he gave me my coffee in a little soup bowl one day. I mean there were certain things, but nothing that was significant.”

Taking someone suffering from dementia from their home and placing them in full-time care is a desperately hard decision. For whomever is their full-time carer, already ground down from the stress and anxiety of constant 24-hour vigilance (cookers left on, attempting to leave the house in the middle of the night, walks taken unannounced, keys left inside, possible aggression), there’s the guilt, at having somehow failed them, the idea that you are abandoning them.

When things came to a head for Deborah’s family, Ken was already a day care patient in Saint Joseph’s Shankill, Ireland’s first dementia village.

“My mother lavished love, care and attention on him, willingly,” says Deborah, “but she began to get very worried about security. We would have had two or three scares.” Coincidentally, on a day they had what she recalls as a “very bad scare”, where her father wandered off, Saint Joseph’s rang offering a live-in place.

“It was a bit of a gift for my mum,” Deborah says, adding that the progression of his dementia has been helped by getting such thoughtful, specific care. “It’s gentler. But gear changes happen incrementally. I mean you are only going one way with this. It’s not like any other illness where perhaps there’s some hope about it. It’s about being able to be present, and, I just feel you’re better to face into it.”

Saint Joseph’s Shankill is a dementia specific nursing home, which has created a world that is safe, but also a real home, for its inhabitants. It places them in small groups, rather than large wards, according to the stage they are at.

“We put up walls to create a cosy, homelike environment,” explains Siobhan Grant, their fundraising manager. Their aim, she says, is to look after people socially as well as physically. To look at each person individually and figure out what matters to them, to try in any small way to connect with each inhabitant. “How can we make them feel like they matter, to know they are still alive,” says Siobhan.

“When you are in the other side, this is their world, and it can be a very nice world for them,” explains Deborah. Inhabitants live in lodges, grouped according to the four stages of the disease. Each lodge has its own kitchen, living room and dining area.

“Just recently they built a bar,” Deborah smiles. “I mean it’s not really a bar that’s going to be used very much but it’s the idea of socialising. I’m not saying there aren’t very disturbed people. Repetitive stage for example literally means repetitive. Chanting non-stop, 24 hours.”

Saint Joseph’s Shankill, which has been awarded the Butterfly model of care Kitemark by Dementia Care Matters, also includes a garden shed and a shop. Efforts are made to provide specific comforts for each person; Deborah’s father has a small work desk at which he still sits.

“My dad is a creative person. They get what each person’s comfortable with.”

Another patient, formerly a seamstress, sits by her sewing machine, measuring tape about her neck. Doll therapy is encouraged, with female patients often tending to their “babies”, feeding, clothing, pushing them in prams. Where possible, inhabitants sit down together for dinner, do the dishes, hoovering.

“What happens slowly is that you leave your own life at the front door and you learn to go in and see life through the person who is living in there. And that makes it a lot easier,” Deborah explains. “And I’m not saying you can do this all the time. The disease is tricky, with emotions, and also there are so many different types of dementia.

“You can have locked-in syndrome. They can be high as a kite, they can be low. Fear; fear is the biggest problem for people with dementia because they’re afraid of the unknown in the moment.

“Imagine if you forgot how to pick something up, how to sit down. It’s a completely discombobulating sense.”

Taking the burden of the day-to-day care away, the endless troubleshooting and putting out of immediate fires, allowed for some room to start to process what was happening, but acceptance isn’t something that happens overnight.

“Seeing him in there, immediately you just go ‘OK, security’. You’re really not happy. You want it to be the way that it was, and yet you have to know that it’s never going to be like that again.

“Some people go in and the decline can happen quite quickly, so I’d imagine some families don’t have a lot of time. For us maybe, the goodbye is long, but you leave kind of grateful that he’s still there, selfishly.”

Her father has lived in Saint Joseph’s full-time for approximately two years now. “You’re losing the person, and you’re very torn by being very grateful for small things, or very disturbed, and worrying about what’s coming.

“We never let go,” she says of moving her father into full-time care. “I think what we did was we’d go to Saint Joseph’s and we’d camp there. And be very sad and upset, because we were trying to make sense of things.

“It’s a little bit like when you’re going through anything that is very challenging emotionally, whether it’s the break-up of a marriage, or somebody is ill and dying, you know the way time shrinks on you, or you can’t grasp it really, it’s a little bit like that. You’re very disorientated. And it does take you a while.”

This is the first time Deborah has spoken so openly about her father’s illness, and she was cautious about doing so. Ultimately though, she says: “I’m kind of done with the shame of it, or the fear of mental health issues.

“Because if we’re honest with ourselves, every single one of us has it, the fear of mental health issues. It could be us. We don’t know what to do with it, because it’s an imperfection in a perfect world – that isn’t perfect.

“Part of this is that it’s hidden by society from necessity. So we don’t know what it’s like until we have to go into a home, or place, where people have to be secured. Because of not knowing, it makes the fear worse for a lot of people. We should all be able to be comfortable with being uncomfortable.”

Currently, there are approximately 55,000 people living in Ireland suffering from dementia. An average of 11 are diagnosed every day, with that number increasing.

“Like anything else you’re useless to anyone if you go in there and cry all over the place,” Deborah says. “Go home and pull the covers over your head. You have to just man up.

“Now that’s not to say I haven’t wandered out of there bewildered. One wonderful gift I have from my dad, and I think my siblings have it too, is creativity, it is a wonderful escape. I used to say to him ‘how do you face into Monday morning?’ And he’d say ‘well I leave a really nice piece of work on the drawing board’. Whether it’s falling into a book that you love, whether it’s music, a drawing, that’s a gift in itself. And he had that, and I think he passed that on to all of us.”

Both of her parents were from Dublin. The bravery of setting up one’s own business, both for her and her father, came, she says, from her “inspirational” mother.

“They were a really gorgeous, glamorous couple, living a dream.” In the early 1960s, her parents moved for a time to New York, he getting work as an architect, her mother finding a job on Madison Avenue, amongst the Mad Men. About to have their first child, they decided to move home to Ireland.

“I’m not looking at it through rose-coloured glasses, all I’m saying is that if there were problems and issues and fears and worries, the things that everybody has, you were minded, and protected, and loved,” Deborah says now of her childhood.

“And that makes things very clear for you, when you’re in this situation with him, there is no shadow of any doubt of the love and devotion of all of his family. And his new family, which is St Joseph’s.”

Wandering out of St Joseph’s one day after visiting her father, Deborah was hailed by Siobhan, the centre’s fundraising manager.

“She grabbed me one day and said ‘what about a fashion show?’ I was really bewildered at this stage; it was quite early on in him going in there.” The result was last April’s 2016 show in Trinity, featuring a host of Ireland’s top designers including Philip Treacy. A second show was always a given.

Last year’s event raised €25,000 profit, which funds what Siobhan terms extras – for example a refurbishment to do away with institutional furniture. This year’s event features the work of Don O’Neill, who is coming from New York for the occasion. The whole thing happens with the help of one of Deborah’s oldest friends, PR guru Mari O’Leary. She is also the woman who introduced her to her husband, Mari’s Cork cousin Charlie Hanrahan.

“He came to Dublin for a rugby match, and that was that.” Together for almost 30 years, the pair run the business together. “You go through stages of going ‘I wouldn’t advise anyone to do this’, to ‘oh my God I wouldn’t want to do this with anybody else’. He’s a wonderful businessman.”

Maintaining her creative output, never mind managing stress levels, through all this can’t have been easy. She smiles. “Charlie would laugh and say ‘do I take to the bed?’ Yes. I take to Netflix.”

Beyond Netflix, she has happened upon Human Givens, a form of psychotherapy sometimes referred to as advanced CBT.

“It’s like spring cleaning your mind,” says Deborah. “I obviously have hit times where things have been beyond challenging, my sister, and this diagnosis for dad. It’s not hypnosis, but it’s not what I would call invasive therapy.

“It’s taking a memory or situation that you find very painful and rewinding so that you don’t lose the memory, but it lessens the pain. It’s a way of helping you clarify thoughts. I was overwhelmed.”

As Charlie proved a wonderful stepfather to her daughter Sorcha Veale, Deborah says her own “wonderful Dad” was a very involved, loving father when they were young.

“My dad was incredibly clever, emotionally very bright if you went in with a problem. He was very involved in that way. That does leave you with that wonderful sense of being cared for by both your parents. That care that you get, it’s unconscious living really. It helps promote a sense of wellbeing.”

The cruelty of dementia is that while physically a person is still here, it slowly destroys who they were, until it can be hard to remember what they were like before the disease. You lose them even though they are still right in front of you.

“It’s not even like a bittersweet thing,” Deborah says of the memories. “It is when you’re sad, but when you’re in a better place about it, it’s like, he had a life well spent. Creatively, he had a happy marriage, some melancholy, but that’s normal.”

“I remember my dad coming from work to lunch, to Brittas Bay, where my mum would have a wonderful picnic, God knows what stresses he had, and the happiness. You have to try and hang onto those things.”

Irish Fashion Collective 2017, in aid of Saint Joseph’s Shankill, takes place on November 2nd 2018, in the Conrad Dublin, for tickets see www.saintjosephsshankill.ie or email siobhan.grant@sog.ie

©  Sunday Indo Living

First published October 2nd 2018