Dementia robbed us of future with loved ones

CHRIS DUNNE talks to two Cork families which have been affected by Alzheimer's disease
Dementia robbed us of future with loved ones
Jerry O'Sullivan with wife Freda and daughters Geraldine and Edel for Alzheimer article

TRACTON GAA club, founded in 1888, four years after the founding of the Gaelic Athletic Association, is on track for its second annual cycle, Tour De South Coast.

This year, the club are donating part of the proceeds of the cycle to The Alzheimer Society of Ireland.

“We thought about what charity could benefit from the cycle which was a great success last year when we raised funds for equipment for the Juvenile Club which looks after kids from age 15 to 18,” says Chairman, Con Kelly.

“We decided that there was a link to our former Chairman, MJ Nunan, who lost his wife, Lal, to Alzheimer’s. Many families had to deal with a loss due to Alzheimer’s and our community is no exception. So we decided that the Alzheimer Society should benefit.

“We plan to support the Alzheimer’s Society’s work in the Cork region, in Blackrock and Bandon,” says Con.

“We are blessed with a vibrant committee who do excellent work in the parish. Again this year they have rowed in behind the Tour De South Coast Tour cycle, volunteering to be stewards along every junction along the route. Cycling enthusiasts who are on the committee planned the route and got involved in organising the catering, making sandwiches and home-baked cakes for the cyclists,” says Con.

“Tea, coffee, sandwiches, lemon cake, fruit cake, cup cakes, Rocky Road and jelly sweets are some of what is on offer for the participants.

“The feedback has been great and there is a great sense of community spirit after the success of last year’s cylcle,” says Con.

“Everyone came up trumps. It makes things much easier when everyone rows in.”

There are 55,000 people in Ireland living with dementia. Half a million of us have family members with dementia. The number of people with dementia will more than double over the next 20 years.

Two thirds of people living with dementia are women.

Lal Nunan was one of those women. She passed away on May 8 last year at the age of 65, after suffering from Alzheimer’s disease for 10 years.

“It is a wonderful gesture on the part of Tracton GAA Club,” says MJ. Nunan, who was Chairman of the Tracton Juvenile Club for more than 15 years and who has had an association with the club for 25 years as well as his sons, Jason and Stephen.

“For four or five years, Lal wasn’t that bad,” says MJ, speaking about his wife’s condition.

“She was happy enough. But then it got aggressive and she suffered seizures. One Christmas, 10 years ago, Lal never knew it was Christmas. She never got up. For six months, she would be OK, then she would have a seizure,” says MJ.

“We had no clue what to do. When we went to CUH, we were told what to do.”

The seizures that Lal suffered were frightening for herself and for MJ, and for their two sons, Jason and Stephen.

“The second time she got a seizure, she bit her tongue and she was bleeding,” says MJ.

“Dr, Hynes in Kinsale, was brilliant,” says MJ. “We could ring him any time, on Saturdays and Sundays too.”

Lal Nunan, wife of MJ Nunan, ex chairman of Tracton Juvenile Club.
Lal Nunan, wife of MJ Nunan, ex chairman of Tracton Juvenile Club.

Every seizure affected Lal and they eventually weakened her heart.

The family got great support from K-CoRD, a community based, patient-centred response to Dementia, aiming to improve the quality of life and addressing the needs of those with dementia.

“For us, they were brilliant,” says MJ. “They would come out to the house and take Lal out for a spin or to their place in Kinsale for a coffee morning. She really enjoyed those little outings. It is a pity that the facility is no longer in existence. The girls at K-CoRD were second to none,” says MJ. “They couldn’t do enough for you. We also had two great home-helps from Douglas and Blackrock.”

Lal was happiest to be in her own home, in her own familiar surroundings.

“She thrived better at home,” says MJ. “She loved music. Her face would light up with music and anything associated with it.”

She also enjoyed going to all the matches.

“She was a great supporter of Tracton GAA Club,” says MJ. “She would rather go to a match than go on a trip to Killarney.

Lal pitched in.

“She took her turn washing the jerseys,” says MJ. “And she really enjoyed doing that.”

Stephen is planning on cycling a stage of the Tour De South Coast.

“I hope to cycle 50km,” says Stephen.

Jason is stewarding.

“My daughter, Ellie, used to sit with Mam in the wheelchair,” says Jason.

“Poppy, Ellie’s sister, was too young. Mam was unsteady on her feet, so the wheelchair was safer for her.”

MJ had plans.

“We never went away on holidays,” says MJ. “I had plans for us to do that. But Lal was always happy to be at home.”

The Tour De South Coast Cycle takes place on Sunday, May 14 from Minane Bridge. See www. tourdesouthcoast.com for more information.

Head of Advocacy and Public Affairs of the Alzheimer’s Society of Ireland, Paula Leonard, says the society is grateful that the Tracton GAA Club is raising funds for it.

“We are so thankful that the Tracton GAA Club is raising funds for us, doing this cycle,” says Paula.

“People’s efforts serve to raise awareness in the community about Alzheimer’s and Dementia. It all starts in the community."

"With support and help, people who suffer from Alzheimer’s and Dementia can live well at home to varying degrees and in their own community.

“Support, like that of the Tracton GAA Club, says to families and carers that we hear you and support you. Raising funds is so important to what we need to do in order to deliver essential services to the community.”

The Centres offer information, advice, personal support, daily living support, and family/carer support.

Bessboro Day Care Centre Blackrock: 021-4972504/5/6 Day Care Centre Bandon: 023-42743. 087-9060767 Westgate Foundation, Westgate Village, Ballincollig. 021-4873648. Alzheimer’s Care Programme every Wednesday.

The Alzheimer’s National Helpline is on 1800 341-341.

Jerry O'Sullivan with wife Freda and daughters Geraldine and Edel for Alzheimer article
Jerry O'Sullivan with wife Freda and daughters Geraldine and Edel for Alzheimer article

ANOTHER FAMILY’S STORY

A quiet spoken man, Jerry O’Sullivan achieved a lot in his life.

At just 21, Jerry, who is from a farm in Rathbarry in West Cork, travelled abroad as a Legion Envoy to South America.

“He had that quiet, West Cork charm,” says Freda who later travelled to South America as a member of Viatores Christi, an offshoot of the Legion.

“I had met Jerry in Dublin. We were both the same age and we had a lot in common.”

Freda admired Jerry’s traits.

“Jerry had an incredible rapport with young people.”

The couple embarked on an adventure of a lifetime; during which Jerry achieved a Doctorate and three Masters Degrees from Stanford University. In 2005, Jerry was bestowed the Order of St. Gregory — the highest honour that the church can bestow on a layman.

“He knows every country in Latin America,” says Freda.

The couple came back to live in Cork after 30 years abroad. Jerry, 78, and Freda should be looking forward to their retirement, enjoying their time together and with their two daughters, Geraldine and Edel.

“I wanted Jerry to retire at 70,” says Freda. “So that we could have time to ourselves. He kept going until he was 73. He was dedicated and he helped thousands of students. He was totally motivated and inspired to continue his work.”

Sitting out on the balcony of the pretty house in Eagle Valley, watching the world go by, Freda says life turned out to be a lot different than she and Jerry envisaged.

Jerry has Alzheimer’s disease and Freda is her husband’s main carer.

“When it comes down to brass tacks, it is just Jerry and me,” says Freda.

“He had a golden life, he was a bit of a gem; a man for all seasons. Now things are never to be the same again. Jerry is a very different person now.”

Freda is a positive person.

“I find human nature great,” says Freda. “People always find the opportunity to be considerate. Our daughters are great. They come regularly and take over things to give me a break. The back-up is more than good from family. My sisters-in-law are a great support too. Jerry is very friendly and sociable. But he doesn’t remember their visits. Jerry lives in a very reduced world and he is a total responsibility.”

Freda saw the change in Jerry when he suffered an accident walking back to his class at the university.

“He crossed the road and a car hit him full pelt,” says Freda.

“Then another car rammed him. I am convinced that a tiny part of his brain suffered an injury, hampering development. It was the beginning of the end. He began to be forgetful. I used to leave him notes to put water/ oil in the car. I told people in his office to keep an eye on him.

“We sold up our home abroad to come back to this place that our daughter had in Wilton. Jerry doesn’t remember the sale of the house.”

Freda and their daughters recognised that Jerry was not the man he was.

“He was confused the first year we came back to Cork,” says Freda. “He was always a serene person. Now he was agitated.”

Freda had lost the man she married. The quiet-spoken man from West Cork had gone away. Alzheimer’s had claimed him.

“Most carers go from day to day,” says Freda. I do everything myself. I rise him and feed him. I shop, cook, and administer his tablets. He can dress himself and tie his shoe-laces. Jerry goes to Westgate twice a week and to Bessboro twice a week. The people there are totally dedicated. The Alzheimer’s Society brings out the best in people.”

But it’s lonely.

“There is no conversation,” says Freda. “It is terribly difficult to have to keep repeating the same question. I ask Jerry does he like his soup? No answer. Then I say; You like your soup, Jerry, don’t you? I can say that three or four times before he answers. If we go out to eat and the food doesn’t come straight away; Jerry gets agitated. He can’t understand, why the wait.

“Jerry is not a TV man. Maybe he’d watch the odd slap-stick comedy because he likes listening to the laughter. I read to him sometimes. Often a paragraph from Alice Taylor. I find things to stimulate him. He’s not into jigsaws. So we arrange bricks in patterns of shapes and colours. Variety is a great thing. He can read the headlines in the newspaper but he won’t retain them. Jerry is very ordered. Look at his corner of the living room and look at mine!”

Freda understands that things will never be the same again.

“It can be heart-breaking,” she says. “Jerry can be irritable. I have to be patient. Every minute is like minding a vulnerable baby. I try to be always positive. I open the curtains and say; what a nice day!

“When Jerry can’t sleep at night, we play the cloud game, watching the movements and the shapes of the clouds. It distracts him and stimulates him.”

What stimulates Freda?

“I am an avid reader,” she says. “I knit. I love the theatre on a rare night out and I’m interested in politics. I love the countryside. I fit in what I have to do.”

What of the future?

“My biggest concern is that Jerry would be institutionalised,” says Freda. “But I try not to think about that and I look to going from day-to day. I’ll meet that when it happens.”

Does she get down days?

“I never saw it coming,” says Freda. “And sometimes I ask myself; is this it? I say; why did this happen? Jerry achieved so much in his life. He wrote eight books. Before his accident; he was a brilliant person; a people’s person.

“Yes, there are days I will cry. I miss most the man I married. We were good at team-work. We had each other’s backs. Now I prepare a meal for myself and I eat alone.”

Freda and Jerry are still a team.

“We are in this together,” she says with a smile.

And Jerry is still the man Freda married.

“He is a gentleman. He always will be that.”


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