'I’d go down to bed at night and be bawling for an hour' - Former builder on how his life changed the day his mum was diagnosed
The day Seán Dónal O’Shea’s late mother Debby was diagnosed with early-onset Alzheimer’s disease, his life changed profoundly in more ways than one.
The former blocklayer from Kerry was 24 years old, preoccupied with socialising and football, and as he admits himself, had never told his mother that he loved her.
But soon after Debby was diagnosed at the age of 50, Seán Dónal became her full-time carer, and he and his mother grew ever closer, and he eventually decided to study applied social studies in social care at Limerick IT.
“I put out my back around the time that my mam was diagnosed so I was at home and without realising it I became a carer. I would never have been very patient, I was like all young lads: my main priorities were going out at night and football matches. So being a carer was something that I grew into.”
“My mam, every night when we were growing up she would say to my brother and I, ‘good night, God bless, I love you’ and we’d just say ‘ah, good night’.”
“But the shackles came off and I said ‘to hell with this, I’m telling her how I feel’. So every day I told her that I loved her. And we used to have very serious chats about things that I wouldn’t tell anyone about. She was the first person to know that I was going to propose. I went to college at night and she’d be the first person I’d tell my results to, she wouldn’t be able to speak back, but I’m so convinced that until she took her last breath, she knew.”
Looking back, there were early signs that Debby’s family were unable to spot that she might have Alzheimer’s Disease.
Some mornings, Debby would leave two hours early for work and it wasn’t uncommon for her to come home with a fresh dent on her car. Seán Dónal recalls her cooking lasagne with potatoes on top, and phoning him several times a day while he was in work. Eventually, a lucky escape in the car was the final warning sign to the family that something serious was wrong.
As the disease progressed over the next 12 years, Debby lost the ability to walk, speak and swallow, and she became incontinent.
Seán Dónal, now 36, recalls: “If I wasn’t holding her hand on the beach she’d walk into the water because she’d be so disoriented. She used to call me her boyfriend as well, and of course then I’d ask her how many boyfriends she had," he jokes, "She’d always tell me ‘seven’, that was her lucky number.”
“She would have wandered,” he adds. “When I was caring for her I’d be in my room and she’d walk in and you’d know she didn’t have an idea of where she was. Or if I’d notice that she was a long time in her room, as soon as I’d go down and open her door, she’d get up and get out because I don’t think she knew where the door was.”
“I remember the first time bringing her to the bathroom, it was never something I’d done before. She’d soiled herself and she kept apologising and it nearly melted me, I just said ‘you don’t need to apologise for that’. If the shoe was on the other foot, she wouldn’t have given it a second thought.”
Seán Dónal, who now works as services manager at Family Carers Ireland, says that while he was caring for Debby, who died in 2016, he was also simultaneously mourning the person that she once was.
“You’re mourning someone that’s [still] there. I might be happy out when people would visit and be the strong man but then I’d go down to bed at night and be bawling for an hour – because of something I’d done that day, maybe a reaction I had to something and you’d be guilty of how you felt, or if you couldn’t go somewhere because you were caring. But then if I did go out, I found that I couldn’t because when I was there my head was always at home.”
Alzheimer’s Tea Day takes place on Thursday, May 2, 2019.. This year marks the 25th Anniversary of the Tea Day campaign and the ASI is aiming to raise €500,000.