Cavan TV presenter Áine Duffy talks about her late mother’s struggle with dementia, and her family’s understandable difficulties in coping.
“I did most of my crying when minding her. Going home and leaving her, that was the hardest because I knew she was changing. I knew, in part, I was losing her. I didn’t cry so much then at the funeral. Because of her bewilderment near the end, I knew she wasn’t suffering any more.”
For Áine Duffy, the death of mum Mar (Marion) Duffy (née O’Brien) in December 2018, after years living with dementia, was bittersweet solace, a paradox of two diametrically opposed emotions - love and despair.
“I grieved while I still had her,” begins Áine, for whom the daily losses, were the hardest for her to deal with. The merciless advance at which this quietus progressed only compounded that anxiety, and the tragic anticipation of her mum’s inevitable death.
Dementia and denial
Dementia is the widely used umbrella term for a range of conditions that cause changes and damage to the brain. There are many conditions, with Alzheimer’s disease among the most common.
According to the Alzheimer Society of Ireland, the number of dementia cases in Ireland is expected to more than double by 2036, from 55,000 to 135,000.
Dementia is a progressive condition, for which there is no known cure.
Watching a loved one succumb to the not-so-slow associated descent, mired in confusion and forgetfulness, is harrowing. Perhaps understandably it’s why Áine was so reluctant to believe it was happening to her mum.
Mar from Marahill
Áine grew up thinking Marahill, the townland where the four Duffy children were reared, was named in honour of her mum. “She was a great lady, a great character,” Áine describes blissfully.
Mar’s family had moved from Dublin to Cavan in the 1940s. She never lost that city swish of confidence, standing out from the crowd, a sense Mar wore with a graceful and modest pride.
Her family ran what is today known as ‘The Hatch’ bar in Ballinagh. But instead of following her sisters into the pub trade, Mar married Paddy Duffy, a local farmer.
Paddy died in 1995, at the “relatively young” age of 71 years, and just after Mar herself had been given the ‘all clear’ from cancer.
She had developed a condition called squamous cell, an aggressive form of skin cancer that attacked her lip. It led to Mar undergoing, and indeed overcoming major surgery to her face, followed by intensive radiotherapy after the cancer briefly returned.
Life for the living
Some 12 years younger than her late husband, as a widow Mar still had “plenty of living yet to do”.
“She loved being in the heart of everything. She was a great mum, hands on and there for all of us. So she just got on with life.”
Of particular pride to Mar, who always had a playful glint in her eye, was her ability to drive. She loved her “little car” and delighted in bringing people places, recalls Áine.
“It kept her going,” she adds, slowly turning a small and neatly framed photo of her late mother over in her hands.
Then, in 2012, Mar’s younger sister Angela died, following her own battle with cancer.
At Angela’s funeral, it struck Áine that her mother didn’t appear inherently sad, but unusually apathetic. “She was happy when people came to the house, not inappropriately, but amazingly happy even though Angela had just suddenly died. Part of us thought, it was just her way of dealing with it, but really, that’s when we began to realise there’s something up with mam.”
A habit of repeating things also presented itself. Ringing at odd times, the comfort of buying the same foods daily, while considered curious behaviour, still didn’t set off any major alarm bells.
It was not long after that Mar was acknowledged as being “a bit all over the road” when driving.
After a doctor took blood samples, it was discovered her iron levels were “very, very low”. She had effectively been starving herself, having lost all interest in eating.
“She still appeared compos mentis, still buzzing, still going good, still the same ol’ mam, she knew everyone. But there were subtle changes in her.”
Then the anxieties started to appear. Mar feared someone would take her beloved dogs - two little terriers, and a Cocker Spaniel named Ruby.
Áine, who works at Cavan General and is a host on Cavan TV, began spending more time at home.
“It was the day-to-day stuff that seemed to be going askew,” Áine now recognises. Mar hardly seemed to notice.
When neighbours found Mar up the road looking for her dogs in a disoriented state, things really began to “hit home”.
A busted clutch meant Mar could no longer drive. The garage mechanic was of course clued in on adjourning any accelerated fix. The cruel twist was Mar’s quickening deterioration spelt an end to the one outlet that gave her so much independence.
Mar also smoked John Player’s cigarettes. The classic purple pack was an enduring presence. Her lips would purse in delight at the first pull, the perfumed smoke wafting gently from the burning tip and through her fingers. It too, a life-long dedication to addiction, was overtaken by the dementia towards the end.
When Áine started looking at how to access nursing home care, Mar was already becoming more forgetful. She’d refer to Áine as ‘Kathleen’, the name of her favourite sister, who passed away in March 2018, having also had dementia. Sadly the death didn’t register with Mar, who’d began calling her son John, ‘Tom’, the name of her only brother.
CT scans showed no abnormalities, other than the decline of any average now 78 year old person.
“We didn’t contradict her, that wouldn’t have been right. She didn’t deserve that, and sure the next time you might be Áine again.
“In a way you go along as best you can. There were times she’d start looking for her mam and dad. They were dead, and she’d cry and say ‘nobody told her that’. So you’d just tell her ‘we’d see them soon’. She’d be happy with that, and then soon forget about it.”
Mar’s father had also suffered early onset dementia. Aged in his sixties, with little supports back then, he lived out his days sitting at a table “chewing at his gums. Just chewing and nodding his head ‘yeah’. What ever dignities mam had left, I wanted them respected.”
Then the call came. “‘We have a place for your mother’, they told me. We weren’t ready,” says Áine.
The guilt of putting Mar in a nursing home was very real. Áine and her siblings spoke at length to other family members.
They heard from several the judgemental hard line ‘there’s no way I’d put my own mother in a nursing home’.
“I thought the same,” Áine acknowledges.
“But really when it all came down to one thing, I knew, even between us, we wouldn’t have been able to give her the nurturing care she needed.”
Áine, as eldest, took on the assignment of bringing Mar to Esker Lodge herself. “It was my last duty of call, I said ‘leave it with me’.”
She still remembers the day vividly - a Friday afternoon sometime in July. The weather was downcast, as if reflective of the prevailing mood.
“Mam said as we drew up in the car ‘I don’t like this place’. But I said to her, ‘come inside and see what it’s like’. [The staff] knew how to deal with it. They knew her name, and sure her eyes lit up at that.”
One of the toughest decisions, Áine remembers, was leaving the nursing home that first time.
She sat in her car, hands on the steering wheel, with the engine turning over just staring at the sand-coloured facade for what seemed like an age.
“It was the end of an era, because I knew mam would never come out of there. But I felt I had to do it for her. She needed to be in a place that could care for her and care for her properly.
“Our decision wasn’t a cop out, far from it. We made that decision, hard and all as it was to do, with mam first in our mind.”
Mar quickly became comfortable at Esker. The young staff took to Mar’s unique character instantly.
“They had hats, and she’d find them on the wall and of course she’d put them on. She would never let them put her shoes on, so she’d always have two odd feet. That was still the essence of mam, the ‘I’ll do it myself’ attitude.”
There were times, Áine believes more of the mum she thought she’d lost came back once Mar entered the nursing home. Some of her past sparkle and attractiveness returned, as a structured routine, stable meals, and regular human contact relieved unnecessary burden. She loved visits from her grandchildren and great-grandchildren too.
For Áine, most importantly, the “fear” in her mum was gone. “She wasn’t worried. She wasn’t scared. That’s what upset me the most. That’s what scared me the most.”
Áine encourages anyone facing the same difficult juncture to consider all circumstances carefully, and act in the best interests of person involved.
There are difficult decisions to be taken at every stage caring for a person dealing with illness, she states. In Mar’s case she wasn’t able to swallow, and was nil by mouth before her passing.
“We had to watch that,” says Aine. “Despite every urge of your being, we had to listen to medical advice. There are plenty of hard decisions people have to make, and that is the end tale of dementia.”
‘Mam I love ya’
Sitting in the comfort her sister Denise’s Crossdoney home, Áine divulges what she now misses most about her mum being gone.
The notion, as espoused by some mourners, that Áine and her siblings had “lost” their mum long before she died, still rankles. However much is taken by dementia, Áine thinks something always still remains.
“You might feel it’s futile, you might see them do crazy things, or no reaction at all, but it will actually help you when that time comes and they pass away, you’ll know you did everything you could. Make use of that time together because you’ll regret it if you don’t. Tell them you love them, and go in even more often if you can. It’s never too late.”
Áine would tell her mum ‘You know mam I love ya, you were the best mother’, and she’d laugh. “Because she’d get me at that. ‘Oh indeed I wasn’t’ she’d say back. Yes there were days she didn’t want to see me, yes she was beginning to forget me. But she was still there. She was still my mum. I’d always say that to people. We could still tell her we loved her, we still could touch her hand, feel her hair. We could still hug her. That’s what I miss most now she’s gone.”
Mar Duffy died Thursday, December 27, 2018.
Her funeral took place at St Michael’s Church, Potahee, followed by burial in the St Felim’s Cemetery, Ballinagh.
For anyone affected by the issues contained in this article, the Alzheimer Society of Ireland’s National Helpline Service is open six days a week- 1800 341 341 or email firstname.lastname@example.org.
A Cavan Town Support Group meanwhile meets at the Bridge Street Centre, Bridge Street, Cavan Town. Meetings take place on the first Thursday of every month at 8pm (excluding July and August).
For more details contact: 087-224 0963 / 087-9002603.