Lest they forget: Quaid on a mission to help people understand dementia

‘What’s going on with Quaid?’ his friends would ask. Kevin Quaid was asking himself the same question. The answer, when it came, was devastating: Lewy Body Dementia. Catherine Shanahan reports.

Kevin Quaid, Kanturk, Co Cork has written a book on dementia - 'Lewy Body Dementia Survival and Me'. Picture: Larry Cummins

Kevin Quaid, of famed Limerick hurling stock, reckons he may be the first person ever with dementia to write a book explaining, with great lucidity, what it feels like to lose your mind.

Quaid, as he’s universally known, was encouraged to do so by his now deceased cousin, Theresa Quaid Myers. Theresa, who had cancer, died on the day Lewy Body Dementia, Survival and Me was ready for publication.

Quaid, aged 54, born in Limerick, now living in Kanturk, North Cork, shares this information with me when we meet in the Hibernian Hotel, Main St, Mallow, in the run-up to his book launch today.

He is a big man, smartly turned-out, and conversation is informative and enjoyable.

As we chat, he pauses sometimes, mid-sentence, and his wife Helena steps in to steer the conversation back on track. But, for the most part, he’s remarkably coherent.

For instance, he knows exactly when Limerick last won a senior All-Ireland title (1973). He knows that his uncles, twins Jim and Jack Quaid, won junior All-Ireland titles in the 1950s, and a Munster senior title the following year.

Next up was Jack’s son, Tommy, county senior goalkeeper in the ’70s. Tommy’s first cousin, Joe, was subsequently a goalkeeper, hurling into the noughties. Tommy’s son Nickie is now playing in goal. And Tommy, sadly and tragically, is deceased.

My head is spinning at this Jimmy Magee-style mastery of minutiae, not to mention the decades-long commitment to the Limerick goalkeeping tradition, but Quaid rattles it all off, no bother.

The thing with Lewy Body Dementia (LBD), as opposed to Alzheimer’s, is that the person can have “hours and hours of clarity”, Quaid says.

Helena says that’s the big difference between LBD and other dementias, and it can cause “great frustration for Kevin, as he knows what he’s missing”.

Alzheimer’s is the most common form of dementia and changes caused by the disease are gradual, slight at first, and greater over time.

Vascular is the second most common type and occurs when the blood supply to the brain is damaged, for instance as a result of stroke.

LBD is particularly cruel, sharing characteristics of both Alzheimer’s and Parkinson’s disease — in fact, Quaid says Parkinson’s was his initial diagnosis. It means he has to contend with symptoms such as muscle stiffness, trembling of limbs, and a tendency to shuffle when walking.

For a while, he was on a walking frame. The day I meet him, he’s using a stick for support. But by far the most savage aspect of Lewy Body Dementia, Quaid says, is the nightmares, a result of REM sleep behaviour disorder.

“If I was to pick one thing that is the worst part of this disease, it’s the nighttime. Nights are horrendous,” says Helena.

Quaid devotes a chapter of his book to this topic.

He knows it makes for upsetting reading but he wants to lay it out.

He wants to lay bare all aspects of his illness, because if there is one legacy he wants to leave, it’s that families affected by LBD will have it as a reference, to know where the disease is going, to not panic, to plan for the future, to put safeguards in place, and most importantly, to let people see what can be achieved by talking about their illness.

“I can guarantee you that there are couples like us out there, who can’t talk about the husband or the wife having LBD,” Quaid says.

Helena says she knows a woman with early-onset Lewy Body Dementia who won’t let her husband tell anyone.

“It’s so isolating for him, as well as for her. People call, and they think he’s a cranky git,” Helena says, because he’s focussed on keeping his wife’s illness hidden and callers feel unwelcome, and no-one is benefitting.

She says that, since Kevin was diagnosed, they’ve met a few other couples where one partner has the same diagnosis and they’ve told no-one “until it came to the stage where they had to”.

Openness has been the hallmark of Quaid and Helena’s 18-year marriage, an ability to talk about everything and anything, and it’s been their saving grace since the diagnosis.

Quaid encouraged his family to contribute to his book and, heart-wrenchingly, to outline how his illness has affected them.

In her chapter, ‘Keep hope alive: Take care of the carer’, Helena says the only way to deal with an LBD diagnosis is to “live one day at a time, accepting what the day or night might throw at me to the best of my ability, and the best of my ability can be different on any given day”.

With devastating honesty she writes: “There are days when I grieve the personality change in Kevin and I grieve for the man I met, fell in love with, married and have shared my life with for 18 years.

In those times, I find myself barely holding on by my fingertips to the few positive thoughts that are left, but I am determined to enjoy life as much as LBD allows us to, in the time we have remaining.

They really are determined, the pair of them, to make the most of life.

In a chapter entitled ‘They said it was impossible’, Quaid outlines how they flew to Sydney in late 2017, despite his diagnosis in May that year.

He had a hairy few days in Perth and ran a seriously high temperature, but his sister-in-law Julie, a nurse, saw him through. They managed a seven-week stay, travelling on to visit family in Melbourne and Sydney, and Quaid is delighted with himself for making the trip.

“On good days, I would enjoy myself, and on bad days, I would just relax and take care of myself. It’s a very good idea to know your limits,” he writes.

Quaid, on the day we meet, is pretty clear knowing on his limits, including recognising that he is no longer in a position to drive.

“If people don’t face this head-on, they are putting themselves in danger and they are a danger to others,” he says.

If I crash into you or your family, then my LBD becomes your problem. And that’s not fair.

It was a tough call, but he had to make it.

He outlines in his book how he gradually relinquished the wheel to Helena. They started talking about it after his Parkinson’s diagnosis: “We realised the time would come when it was going to happen.”

Instead of becoming a passenger overnight and cancelling his insurance, he “slowly, but surely” started taking the back seat, allowing him to feel that not driving was his choice.

About a year after the Parkinson’s diagnosis, Lewy Body Dementia, his actual illness, was confirmed.

“That day I made up my mind never to drive again,” he writes, a decision he made for himself and his family, as well as for other road users.

He doesn’t pretend not to miss the independence — “even just going for a drive on my own, listening to Joe Dolan” — but he is glad the decision was his.

“It is a discussion you need to have with your loved one, and my advice is, the earlier the better,” he writes.

Because hallucinations are a feature of his illness, he has at times seen cars that aren’t there coming towards them and roared at Helena, causing her to swerve.

So, in a way, his illness also impacts on Helena’s driving. He is keen to make the general public aware of this.

Jimmy Guiney, a dear friend of Quaid’s for the past 20 years, has witnessed some of his hallucinations. He recalls a day when they were leaving a pub and Quaid moved aside to let someone pass by. “There was no-one there,” Jimmy says.

A change

Quaid asked Jimmy recently if he could see a change in him. Jimmy says if you go back a few years, Quaid was “one of the happy-go-lucky guys”, always up for a ball-hop.

He says back in the day, a gang of them would hang out in Freemount, North Cork, a kind of localised version of the Rat Pack. Because of Quaid’s height and size, he was known as King Rat.

“He’s always been the leader of the gang,” Jimmy says.

Quaid’s friends began to notice a year or so ago that something was not quite right. He would leave the pub and his friends would ask: “What do you think of Quaid?”

The thing was, he could stand by the bar with a pint in his hand and still be the life and soul of the party. But then his mood might drop.

“Still, it took a long time to convince the pack,” Jimmy says.

It took a long time, too, for Quaid to finally get the correct diagnosis.

His health had been a cause of concern for a decade at that stage, starting with the stress brought on by the closure of his building company, and then a furniture fitting company.

He took stock of his life and decided to move to Sydney with Helena, where both already had family, and off they headed in 2010.

By and large, they had a good life during their five years in Australia, although Quaid had a number of serious health scares. He contracted Coxsackie-virus, which can mimic the symptoms of a heart attack. He was hospitalised with viral meningitis.

He was diagnosed with Paget’s disease of the bone, which interferes with the body’s normal recycling process, in which new bone tissue gradually replaces old bone tissue. He was hospitalised with bird flu.

Eventually, illness forced him to stop working — he had been playing a blinder, project-managing 54 apartments and three shops at one point, later selling kitchens. However, ongoing ill-health led himself and Helena to the decision that it was time to return to Ireland.

The day of his discharge from hospital following bird flu is engraved forever in his memory.

“The doctor said, and I thought he put it well, that for peace of mind, and he hoped that he was wrong, but when I get back to Ireland, I should have myself checked out for Parkinson’s or dementia,” Quaid says.

I was in shock, only 51 years of age, and I felt like I was beginning possibly the biggest fight of my life. I looked at Helena and I knew by her expression that she felt the same.

Quaid put off going to the doctor after his return home and started working again. Within a couple of months, he was in constant pain and went to his GP. He told him what the doctor in Australia had said and his doctor made an appointment with a neurologist.

In the months prior to this appointment, he found it difficult to concentrate, he began to forget dates, directions, and people’s names and experienced on-and-off tremors in his hands and leg. In February 2016, he was told he had what looked like Parkinson’s.

Over the next 12 months, he experienced “a symphony of symptoms”, including hip pain, blurred vision, slurred speech, deteriorating handwriting, sudden sweating, fluctuating appetite, stopping mid-sentence, confusion, noise sensitivity — both loud noises and silence — and tremors. He documented each of these for his neurologist and it was from this seed that his book grew.

“I didn’t think I’d see the book to the end. I didn’t think my mind would stay right to finish it,” he says.

In the weeks prior to his diagnosis, Quaid ended up in the Mercy University Hospital in a tortured state after 11 days of pretty much going without sleep.

His medication was monitored, he was taken off anti-depressants, and after a few days, sleep was restored.

He describes his care in the Mercy as “incredible”.

On the day of his discharge from hospital, he and Helena met the consultant and received the shocking diagnosis. Despite its brutality, Quaid took two huge positives from that meeting.

“He told me I didn’t have a mental illness and that I didn’t have depression, and that was massive,” Quaid says.

Not suffering from depression was “massive” because Quaid had considered suicide more than once in his lifetime.

The first time was in childhood, after suffering sexual abuse. The second time was on account of serious workplace bullying. The third time was after the collapse of his business.

With his illness, thoughts of suicide are never too far away. Quaid is very clear in his book that he does not regard suicide as a selfish act. He is also clear that he takes one day at a time and his focus right now is on survival.

I cannot tell you what way I am going to die, but I can’t say it won’t be suicide.

“He’s afraid it [the urge to kill himself] will take over some day and that he will just do it,” Helena says.

Quaid says the silence of the night “drives me mad” and that he could “at that moment, just do it”.

Whatever about violence towards himself, Quaid is terrified at the thought of showing violence towards his wife.

He fears this could happen during one of his awful nightmares, when he believes she is an intruder.

He is also persecuted by thoughts of being violent while awake and conscious.

If that day comes, he says, he wants to go into a home.

He has discussed this with Helena and they have already chosen the Care Bright Dementia Village, in Bruff, Co Limerick. He can’t speak highly enough of this facility or of the staff running the HSE Crystal Project in Mallow, a community dementia programme.

Forward Planning

Together with Helena, Quaid has done a lot of practical, if savage, forward planning, such as organising power of attorney, and making himself face the brutal reality that he’s likely to miss out on future family get-togethers.

One such event is the upcoming wedding, in 2020, of his daughter Noreen, who lives in Australia. He says Noreen, who edited his book, spoke of moving her wedding to Ireland, but he won’t hear of it.

“The chances are I won’t be going, because my head will be gone,” he says. “I had to have that conversation with her. But it’s been her dream to marry in Australia and I’ve told her if my head is alright, I’ll be there.”

Not letting his disease spoil his daughter’s plans is his way of not letting Lewy Body Dementia win.

He’s fighting for his mind and his life for his children Noreen, 30, Pat, 28, Kevin, 26; for his step-children Declan, Shane, and Michelle; for Helena; for his brother Tom. He’s fighting for his grandchildren, Hollie, Charlie, Liam, Victoria, “and any more who may come along”.

Hollie, he says, has exactly the right approach.

“She has a great way of asking and listening,” says Quaid. “Children are brilliant at that because they know they are talking to the person who they know and love and not the disease.

If you want to know how to treat a person with dementia, just put their grandchild in front of them.

Quaid’s book is part of his mission to help people understand this cruel disease.

He’s prepared to go further so that those with LBD can continue to function in the community. Next stop: Supermarkets.

“What I want is dementia-friendly stores, where a designated shop assistant will have a certain colour apron and people will know that’s the person to go to,” he says.

“I’m on a mission now, and I’m not going to stop.”

Kevin Quaid’s book, Lewy Body Dementia, Survival and Me is due for launch in the Park Bar, Kanturk at 8.30pm tonight.

Contact: Helena at celtichelena@y7mail.com, Quaid at kevinquaid9@gmail.com, The Alzheimer Society of Ireland on 1800341341 or www.alzheimer.ie


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