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

Sat, Dec 29, 2012, 00:00

The O’Malley family shoulder the burden of responsibility for their mother’s care, writes ROSITA BOLAND

“I was very upset when I heard mum had Alzheimer’s. I was upset for mum: I wasn’t really worried about myself. When we were little, we used to go to a childminder whose mother had Alzheimer’s. From seeing another person with Alzheimer’s, I saw where it was going to go with mum. It was upsetting, I won’t deny it. What made it worse was that when mum found out, she felt she was useless and worthless.”

Michael O’Malley (20) is talking about his mother, Marcella (52). The O’Malley family, Michael, his parents Kieran (50) and Marcella, and his 14-year-old brother, live in Douglas, Co Cork. Marcella O’Malley started to display signs of early onset of dementia when she was 44. She was formally diagnosed three years ago.

There are some 43,000 people in the State with a diagnosis of dementia. Ten per cent of them are diagnosed with early onset, which means diagnosis is given under the age of 65. To the knowledge of the Alzheimers Society in Ireland, the youngest person on record at present in the State to receive a diagnosis was 36. Thousands of others, like Marcella O’Malley, are diagnosed in their 40s or 50s.

Reduce the stigma

“It’s only looking back . . . that we realise what the warning signs were,” recalls Kieran. Father and son are sitting at their kitchen table in Douglas, going over the last decade of family life together. They’ve agreed to be interviewed because they are anxious to reduce the stigma around a diagnosis of dementia: a stigma that Maurice O’Connell, chief executive of the Alzheimer’s Society, suggests is akin to what “cancer was 25 years ago.”

Kieran and Marcella have known each other for 30 years, and have been married for 21 years. Some eight years ago, Marcella started to change her behaviour around certain routine things. “She didn’t like to drive any more. She was nervous. She’d ask dad to drive instead,” says Michael. “She had always liked solving word puzzles. She could still figure them out, but she got me to write in the answers.”

“Initially, I put it all down to stress at work,” explains Kieran. Michael was 12 when his mother started to display symptoms of early onset of Alzheimer’s. His brother was then seven, and has recently admitted to the family that he cannot recall what his mother was like prior to onset of the condition.

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.

Alzheimer Foundation

Margaret El-Mahdi is the home help who comes twice a day and whom Kieran describes as “one of the family”. She helps to shower, dress and feed Marcella, who is now unable to use the bathroom unaided or to manage a knife and fork.

From 10am to 3pm, Marcella attends the Cork Alzheimer Foundation in Togher, which can take a maximum of 10 people a day. On most days, she is brought home at 3pm by Caroline O’Grady, a carer with the Alzheimer’s Society, who stays with her until 5pm, when El-Mahdi comes again for an hour. After that, as well as during weekends, the family and extended family are wholly responsible for her care.

“At times you get wistful for normality. But an awful lot of this is accepting what comes your way. I don’t dwell too much on the future. It has made me more patient as a person. I’d be less fearful of what people think now,” says Kieran.

They made a decision as a family to protect their youngest member from having to take on responsibilities around care of his mother and he is never left alone with her. “The boys still have their mother at home with them,” Kieran stresses.

Michael is now in his second year at CIT, studying nutrition and health science. He did not apply for any colleges outside Cork, as he wanted to continue to live at home and help out. “I decided to stay in Cork,” he says. “A lot of people thought Dad was making me stay . . . [but] it’s my choice to do this.”

On the day I visited the O’Malleys, I went with Kieran to collect Marcella from the centre in Togher.

Marcella finds it difficult to speak much these days, but as Kieran carefully buckled the seat belt for her, she looked at him and said distinctly: “I love you.”

The Alzheimer’s Society marked its 30th anniversary in Ireland this year.

alzheimer.ie

Alzheimer's and dementia early signs

Memory loss, particularly for recent events

Problems with language, difficulty finding the right word

Changes in mood and behaviour

Becoming confused in familiar surroundings or situations

Difficulty in following conversations, TV programmes or reading

Difficulty managing money and everyday tasks

Difficulty solving problems or doing puzzles

Repeating a question or story without realising