'It's only looking back that we realise what the warning signs were'

A day came five years ago when Marcella came home early from work. “She walked in the door at 3pm. We thought it was stress related and that she just needed some time off,” says Kieran. It was, in fact, the last time Marcella went to work.

In early 2009, she was referred to a neurologist. “I asked that day what was the possibility of her going back to work. The answer was, ‘I don’t think so’,” says Kieran. “We didn’t get the formal diagnosis until later that year . . . I remember walking down the corridor in a daze.”

There were decisions to be made as a family, and adjustments in their lives. But on one thing, they were all united: “Marcella asked us to keep her at home as long as we could, and that is what we are doing,” says Kieran.

Role reversal

“We were always close as a family, and this has brought us closer,” says Michael. “The hardest thing for me around it, is that it’s a role reversal. Now I have to do things for mum, instead of her doing things for me. It has also made me question my faith. Do I believe in God? How can he let that happen to mum? It has cemented dad’s faith, though.”

Maurice O’Connell at the Alzheimer’s Society says that stigma around diagnosis can make it harder for families to get help, and access services they need. While the onset of dementia cannot be stopped, it can be delayed, thus reducing societal stigma around a diagnosis is crucial.

“People with dementia belong to the community, just like anyone else,” he stresses. Next year [2013] will be key for policy, as the National Dementia Strategy is due to be published.

For Kieran, as head of the household, he had to tackle the issue of stigma immediately, for the benefit of the whole family. “Marcella didn’t want me to tell anyone else, but I had to, to keep sane,” he explains.

In the spring of 2011, the family realised Marcella could no longer be left alone, when she arrived unexpectedly at Michael’s school one day during his Leaving Cert year, looking for him. He brought her home, and discovered the front door had been left open and the oven on.

The family now receives 2½ hours home help care a day, via the HSE and an additional two hours from a carer from the Alzheimer’s Society.