"Our second family": Cork wife misses lifeline of dementia care centre

The Covid-19 pandemic has forced the closure of vital havens for dementia sufferers, such as Bessboro Day Care Centre. CHRIS DUNNE find out how one Cork couple are having to cope without it
"Our second family": Cork wife misses lifeline of dementia care centre

STARTING LIFE TOGETHER: Helen and Michael Higgins on their wedding day — he was diagnosed with dementia in his late fifties

KILLEENS couple Helen and Michael Higgins are just two of the people who miss the familiarity, sociability, inclusion, and safe environment of Bessboro Day Care Centre.

The facility in Blackrock, Cork, that welcomes people with Alzheimer’s and dementia is closed due to the Coronavirus pandemic.

“The people and the staff there are our friends and they are our second family,” says Helen, who cares for her husband, Michael, who suffers from dementia.

“For Michael, Bessboro Day Care Centre was a lifeline. He loved it there, enjoying participating in the singing sessions, the art therapy and the social club. I loved helping out with the fund-raising events like the Tea Day, which is now postponed until later in the year.”

The event, due to take place on May 5, is a huge money-spinner for the centre. Helen says of this interview: “I wanted to give something back because they give so much to us.

“Michael can’t understand why we can’t go to the day care centre like we always did. He’s confused and upset, being out of his regular routine. He loved going there and it was a reprieve for me when he had such a great outlet.”

His friends and the staff at the day care centre love him too. “He’d be hugging all the women!” says Helen.

Everything was rosy in the garden for Helen and Michael Higgins. They have a lovely home, their family was reared and the couple were looking forward to nice holidays by the sea and spending more time with their grandchildren when Michael retired.

Life looked good. Then, Michael was diagnosed with Frontal Temporal Dementia in his late fifties, and everything changed.

“I was in bits,” says Helen. “It seemed so unfair. The diagnosis took away so much from us. We were looking forward to having a long, happy life together. Now, the whole agenda has changed. I won’t grow into old age. I can never retire.”

Helen will always remember the day their lives were torn asunder.

“Our GP referred Michael to the memory clinic after a lot of investigation. The doctor brought us into the side room and he confirmed that Michael was in the early stages of dementia. He was relatively young to have the condition, even though we know that his dad and his uncle had a similar illness; Michael was very healthy.”

Helen, though, had spotted some changes in her husband of 41 years.

“Michael used to keep mislaying his belt for some reason. He kept asking me for it. He was self-employed and when he got paid for jobs, he didn’t remember. Then he thought he might have put the money somewhere and went looking for it. It was very frustrating. Often I thought maybe he had hid it on me!”

“She might find it some day,” says her husband with a grin.

“We live very near the motorway,” adds Helen. “But Michael found the back roads more familiar. Once, when he collected me from Shannon Airport after a trip to see our daughter; he missed the exit. When we came home the food I had prepared for him before I left was still in the freezer. Michael forgot it was there.”

Things began to add up for Helen; even though Michael was oblivious to the changes in his lifestyle.

“He often forgot he had eaten his dinner, and he’d forget to shower. Then we’d argue about it.”

Amid the confusion and fear of the unknown, the couple shared lighter moments. “Once, Michael came downstairs and he had only shaved on one side of his face,” says Helen.

“I thought my eyesight was at fault, not my mind,” says Michael, as the couple share a laugh together talking on the phone to me.

“Another day I dropped him to the barber and he came out with the same haircut as our grandson; a razor three I’d say,” says Helen. “These days I cut his hair myself and shave him as well.”

The happy, easy relationship the couple had shared for four decades changed immeasurably.

“Michael constantly asks me what day it is,” says Helen. “He asks me every day; what are we doing today? I have to be creative. Sometimes it’s like getting a child out to school.”

Her husband still enjoys lively conversation and his jolly personality shines through.

“If I could remember all the good things and forget the bad things, that would be good,” he says.

He likes chatting to his pals at Bessboro Day Care Centre.

“He often reminisces about days gone by when he is reminded about an event,” says Helen. “Then he can have a conversation.”

Some days are better than others.

“Michael gets little dips, and yes I feel the burden,” says Helen. “Our grandson, Aaron, is a great help, bringing us shopping during the lockdown. He is our knight in shining armour! His mother, Michelle, is marvellous too.”

Michael does what he can. “I’m good with the Hoover!” he says.

Helen says it’s sad she has lost the husband she knew so well to dementia. “I have to say that the illness is much harder on the carer,” she adds.

What about the long-term?

“Nobody knows,” says Helen. “Dementia can be a very lonely disease.”

But they are both looking forward to the day Bessboro Day Care Centre re-opens.

“When we go there, Michael is king of the castle,” says Helen. “Any shyness is forgotten. He loves joining in the sing-alongs. His favourite song is Lost by Michael Bublé. The Saturday Club is very sociable and we both enjoy the outings and the company.”

Michel is enthusiastic about his friends and his enjoyable pursuits at the centre. “We do arts and crafts and I like trying something new,” he says. “I like all the staff, they are really wonderful. And there are lovely volunteers at the centre.”

Helen adds of the staff: “He feels familiar with them. They are good at coaxing Michael and bring out the best in him. And I have found fantastic support from talking to people in the same boat as me. It is good to talk to others about issues we might have in common.”

Helen says if she didn’t have the haven of the Bessboro Day Care Centre, she wouldn’t have coped.

“If I have a particular problem; there is someone to listen. I attend the carers meeting once a month where we can all share our problems.”

“The people there are now our family. We went to the centre twice a week and if I need a ‘flexi’ day, then the centre is accommodating. I have to attend the hospital from time to time for pain management for a back injury. We are lucky that Michael’s sisters are very supportive too.”

Helen says the staff at the centre go beyond the call of duty.

“On Valentine’s Day, everyone got a rose. At Easter, everyone got an Easter egg. We are always look forward to the Bessboro Alzheimer’s tea day in May. All our friends turn up and we catch up.”

That day will come again.

“We really hope so,” says Helen.

She adds that once upon a time, Alzheimer’s and dementia were taboo subjects. “At the beginning we didn’t want people to know. It is amazing how you learn to live with it.”

Michael doesn’t always get off the hook.

“I give him little things to do,” says Helen. “Like setting the table or putting the milk and sugar in the tea.”

“Then I want my wages!” Michael chips in.

Helen says that the loneliness that dementia imposes is difficult to bear.

“It is a lonely illness for both of us. But we plod along. That’s all we can do. We are still in touch with Bessboro Day Care Centre. The staff ring us up to see how we’re doing. It is great to have that connection.”

Its not all bad.

“I know I’ve lost some things,” says Michael. “I’ve lost my inhibitions too — so that is good!”

And it’s good that Michael hasn’t lost his natural sense of humour.

Jon Hinchcliffe, Southern Operations Manager of the Alzheimer Society of Ireland, says, “It is very tough on our clients and their carers in the current climate of the Coronavirus pandemic. People rely on our services for support, activities, social events and vital human contact.

“Our clients find it hard to understand why it is not possible for us to operate at the moment and the situation is a strain for carers who miss the valuable support we offer.”

Jon is out of his familiar environment too. “Working from home is alien to me!” he says. “My house is set up for a home office and I miss meeting my colleagues, our clients and their families at Bessboro Day Care Centre. Hopefully we can all be reunited sooner rather than later.”

The Alzheimer Society of Ireland (ASI) has postponed its largest fund-raising campaign, Alzheimer’s Tea Day, due to Covid-19 and launched an urgent appeal for vital supports to help them continue their work. As part of the urgent appeal, the public are being asked to make a special emergency donation on www.alzheimer.ie.

The Home Care, Dementia advisors, National Helpline and Online Family Carer Training are still running. In addition regular phone calls and activity packages are available.

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