It began, as this heart-breaking condition so often does, with little things, recalls best-selling author Cathy Kelly. The first signs came when her parents Paddy and Gay embarked on a long-anticipated, leisurely holiday abroad.
When they returned, Gay confided her worries to Cathy, then in her 20s and working as a journalist in Dublin – her two siblings lived and worked abroad. During the holiday, Gay reported, Paddy had become oddly obsessed with managing the different currencies the couple encountered during their travels.
“Mum and I talked about it,” Cathy recalls now. “We both felt there was something wrong about that, because my father was very clever man and he wouldn’t have had any difficulties calculating in different currencies.
Baffled, they initially attributed Paddy’s unusual behaviour to stress. “I think people don’t want to face what they think they might have to face, and of course, it was still quite subtle.”
Next, however, Paddy began to experience problems at work.
“Dad worked in the insurance industry and he’d come home and write up reports with his fountain pen. He worked as a burglary surveyor and would go in and assess the burglary risks for commercial premises.
“He produced meticulous drawings as part of his reports. He loved his job, but he gradually began to have problems writing up the reports – he didn’t seem to be able to organise the information,” Cathy recalls.
Not long afterwards, the 52-year-old, an enthusiastic reader of non-fiction, began to report experiencing difficulty with reading. “He thought there was something wrong with his glasses. He said he couldn’t see the words. In retrospect, this was very frightening.”
Now Cathy thinks the difficulty was nothing to do with Paddy’s spectacles – his brain was simply becoming incapable of processing the information on the page.
Eventually, her father opted for early retirement because he felt he could no longer do his job.
However, he still continued to pick Gay up after she finished work for the day – until that began to go awry as well.
“Dad’s sense of time began to go – he started coming in to collect Mum at lunchtime or in the morning. It became obvious that he had an issue. The thing is, that with someone in the early stages of dementia, there is this horrible mix of the condition encroaching, and being a sentient person who knows what is happening. The person knows something’s wrong, yet he or she can hold a conversation or listen to the radio.”
Gay started to drive herself to work and, as Paddy began to display increased levels of anxiety, the family debated what to do. “We kept our fears from him because we didn’t want to frighten him, but he knew he wasn’t right. He was frightened already.”
The situation began to escalate. Gay reported that she had begun to find Paddy in a very distressed state when she came home from work. “Dad had no sense of time anymore. He sometimes thought Mum had been gone for days and he’d be very distressed when she came home.”
Because Paddy was still only in his early 50s, recalls Cathy, they had difficulty getting him assessed for what they increasingly suspected was early-onset dementia. “At that time, we couldn’t get him assessed for it because he was not a geriatric. He was still quite a young man. Back then, if you didn’t fit the geriatric bill you couldn’t be assessed for dementia other than at the GPs.”
Their family doctor suspected that Paddy had early-onset dementia and suggested a cognitive ability test.
“Our doctor was wonderful; an amazing man,” Cathy says, adding that bringing her father to the GP for that test was one of the hardest things she has ever had to do.
“My father was still aware enough to know that there might be something serious wrong – so it was a reversal of the parent/child relationship and he felt it keenly. It was agonising. I was acutely aware of the pain of this and I couldn’t let my mother do it and my brother and sister were abroad so I had to do it.”
‘A waiting game’
The tests results showed there was a problem, but the question was what to do next because they still faced the same problem – Paddy Kelly, fit and in his 50s, did not fit the profile of the ordinary dementia patient. "At the time, no specialist would look at him because he was too young – that was the reality. It was a bit of a waiting game."
Over the years, the problem increased. Paddy saw a number of doctors and at one point was even diagnosed with Obsessive Compulsive Disorder. “He was put on Prozac and advised to get therapy for help with the OCD. He did this for a while, but it was like handing someone a woolly sweater on a really hot day – it wasn’t the right answer.”
Every time the family got a diagnosis of something other than dementia, she recalls, “we were relieved”.
“Dementia was the bogeyman. Our GP believed Dad had early-onset dementia, but he couldn’t provide the services himself.”
Gay eventually gave up work to care for her husband. "Mum got great support from the Alzheimer Society of Ireland," recalls Cathy. "People don't know how to help. It's a very difficult thing to deal with. Visitors call and tend not to come back. My mother was my father's sole carer with me as back-up for years."
By the age of 59, Paddy's dementia was very advanced. As part of it, recalls Cathy, he experienced a burning desire to revisit his childhood home in Cabra. "He would get up at any time of the night and just walk out of the house."
Eventually, the family found a specialist who diagnosed dementia and had Paddy admitted to hospital until a suitable medication regime was devised for him. “It apparently takes a while to get the correct dosage. The patient has to be monitored, so that the drug regime can be tweaked until its fits. It was devastating for my mother to see Dad in there, but it was the right place for him – he needed it.”
The family were advised that Paddy needed nursing home care. “We found a nursing home for him. It broke my mother’s heart – this is a huge step but it is an inevitable one.”
Paddy died about 18 months later, shortly before his 61st birthday, in 1999. “It was nine years of pain,” recalls Kelly, now married, in her early 50s, and a mother of 14-year-old twins, Murray and Dylan.
"It's always difficult talking about it," she says, adding, however, that the depiction of how the character Séamus is treated in the Leap of Faith Nursing Home in her latest book The Year that Changed Everything, draws on her memories of her own father's time in a care facility.
Séamus’ experience in the book reflects the great care and kindness that Paddy Kelly received during his time in the real-life care facility where he spent his final months.
“There was a team of people watching my father, and a great sense of warmth and kindness there. It was lovely writing about that,” recalls Cathy. “There was the relief of my father being in a safe place and that is what I was thinking of when I was writing the book.”
Health is a major issue in this latest book, Cathy acknowledges – alongside dementia, she also tackles the issues of menopause weight and older first-time mothers. “As a writer, you’re always looking for new things to write about and as a former journalist I’m interested in things that are current. I’m interested in exploring things that are current and there is a lot going on about dementia at the moment.
“One of the things that struck me is that the way that dementia awareness is now being managed so much better than it used to be. We have an ageing population and issues that were not a problem when people were, on average, dying in their 60s or early 70s, are becoming more of an issue now, particularly because neither our health service nor our community support services are able to cope with it.
“Our ageing population means that dementia is becoming an even bigger problem for us all than it ever was before. I know people who are dealing with it now in a loved one, and it brings back to me how hard those years were when we were trying to help Dad, and how lonely carers so often are – and what love they show to their loved ones. Society doesn’t know how to deal with it and people do tend to stay away – you have these amazing carers who look after someone with dementia and it’s a spectacularly lonely job.”
Cathy on . . .
. . . becoming a first-time parent at 40:
"Sam, one of the main characters in my new book, has her first baby at 40. Babies are un-knowable beings and your first baby is tricky, so I wanted to reflect how different it can be when you have that first one at 40, as opposed to 20. I was 37 when I had my twin sons, Murray and Dylan, which meant I was an elderly primagravida – an elderly first-time mother – which made me roar laughing. I guess I must have been more tired than a younger mother and instead of being gloriously sure of myself and confident, I was anything but. Still, once I got the hang of it – which takes quite a while – I finally began to use the extra knowledge that comes with being 37. I was still shattered, though! But being older does not necessarily make you wiser, trust me."
. . . on menopause:
"I had great fun writing the menopause stuff because there's this wonderful belief that at menopause you are coming into your own. But, and this is a big BUT, you are also dealing with a whole series of things like hormonal change, exhaustion, anxiety, hot flushes, foggy brain, spreading middle. You find that you're saying to yourself, 'where is this Goddess person I am supposed to be becoming!'"
. . . on weight:
"The fact that people are judged on their weight is a central theme in the book – you can be healthy and not look like an exquisite Ukrainian model, but it's as if advertising and social media say that it's not allowed, especially if you are a young women. It's a very bad battle to fight and a very hard way to live your life and I wanted to write about someone who has to deal with this and that's where Ginger comes in. I didn't want the story to be a '. . . and suddenly she's thin', sort of tale. I wanted Ginger to be real, so in the end, there's a change, but it's not the one you might necessarily expect."
