Tuesday 23 January 2018

Caring for the carers

Marie and Dave share a kiss at the Shelbourne Hotel where Marie was presented with her long-time carer award
Marie and Dave share a kiss at the Shelbourne Hotel where Marie was presented with her long-time carer award

National Lottery helps provide relief for dedicated army

Ireland has a hidden army of over 187,000 dedicated carers who devote their lives tending to the needs of the chronically ill, the disabled and the elderly.

Carer Marie Magennis with husband Dave relaxing at home. PHOTO BY STEVE HUMPHREYS.
Carer Marie Magennis with husband Dave relaxing at home. PHOTO BY STEVE HUMPHREYS.

Together, they provide 900,000 hours of care daily, saving the State an estimated €4 billion every year in services that would have to be provided without them.

The work can be physically difficult and emotionally draining but what carers do isn’t so much a job, it’s more a vocation of unconditional love. And it’s often a position that’s thrust upon them by unforeseen circumstances.

Carers don’t look for financial reward, but they would like more State recognition for what they do, and support so they can stay healthy enough to continue their selfless work.

National voluntary body, The Carers Association, delivers what services it can for carers within its limited budget. And National Lottery funding allows the organisation to expand these services so it can provide essentials like vital respite so carers can rest and recharge before returning to duty.

Marie helps Dave into their specially adapted car.
Marie helps Dave into their specially adapted car.

Marie Magennis is a long- serving soldier in the carers army and has been looking after husband Dave who suffers with Parkinson’s Disease for the past four decades.

Born in Dublin and raised in London after her family emigrated there back in the ‘50s Marie first met typesetter Dave at an aunt’s house during a return visit to the Irish capital.

The couple hit it off and started writing to each other, exchanging letters for years, which was how long distance relationships were carried out in the pre-internet era.

Dave  eventually went over to London, living with Marie’s brother in Watford, on the outskirts of the English capital, and the relationship blossomed.

Marie collects her long-time carer award from President Higgins, watched by Mary Kennedy and Marty Whelan.
Marie collects her long-time carer award from President Higgins, watched by Mary Kennedy and Marty Whelan.

The couple returned to Ireland in 1969, got engaged and then married in 1971. Within two years the couple was a family of four thanks to the arrival of sons Brian and Simon.

The future looked bright, but the happy family’s world was about to come tumbling down around them.

“Dave wasn’t feeling good and complained of falling,” explains Marie. “I had noticed, even when we were in London, that when he was walking one leg sounded heavier than the other when it hit the ground.”

Dave, then only 27, began falling more frequently and suffered with headaches. His GP referred him to Baggot Street Hospital where medics determined he had Multiple Sclerosis (MS).

“It was an absolute shock,” recalls Marie. “I hadn’t heard of MS before so I didn’t know if he was going to die or what.”

Dave bravely continued to work but often complained that his two legs felt as if they were encased in a bucket of cement.

“He just couldn’t get the movement in them because they felt so heavy,” explained Marie. “But he’s a fighter and was determined to keep working so he kept plodding along. Some days he’d actually crawl on his hands and knees to get to the front door to get out for work.”

Caring for Dave wasn’t what Marie had envisioned or planned for life but when it became necessary she didn’t give it a second thought.

“You just go along every day and you think nothing about it,” she says. “It’s like a mother looking after a child that’s not well, you just keep going.”

Dave never gave up and the Magennis family was even blessed with the birth of a beautiful daughter, Anne, in 1982 as they continued to cope with their circumstances.

After 13 years of medication Baggot Street Hospital closed and Dave began to be treated in Beaumont Hospital where neurologists questioned his MS diagnosis.

An MRI scan confirmed Dave didn’t have MS, and that his symptoms were caused by Parkinson’s Disease, an incurable progressive disorder of the nervous system that causes increasingly severe tremors.

Medication used to treat the condition can result in a side-effect called Dyskinesia, a difficulty or distortion in performing voluntary movements.

Dave was referred to Frenchay Hospital near Bristol for surgery to try and reduce the tremors.

Dave has had significant brain surgery twice. The first was a subthalamic nucleotomy operation, which is carried out under local anaesthetic so Dave was awake during the process as the surgeon drilled into his brain.

The second treatment involved deep brain stimulation, a neurosurgical procedure involving the implantation of a medical device called a brain pacemaker.

The procedures worked for a while, but eventually the falls began again, became more frequent and Dave had to use sticks to aid his walking and later needed a wheelchair.

After three decades caring for Dave, Marie joined the Carers Association around ten years ago, and hasn’t looked back since.

“It was the best thing I ever did because you’re meeting other people who are carers too,” she says.

“I’ve made lots of nice friends and you can talk about your own troubles to them and they’re talking about theirs and I can share tips with other people caring for partners, parents or children with Parkinson’s.

“But I often think, when somebody is sick, who cares for the carer? Carers are saving the Government an awful lot of money. I really honestly feel that the carers should be looked after better.”

The Carers Association provides Marie and others like her with information, training, support groups, respite care in the home and a national helpline.

The organisation also lobbies on behalf of its members and has successfully applied for badly needed and much appreciated funding from the National Lottery.

“Funding from the National Lottery enables us to extend the services we offer to family carers,” says Catherine Cox, Head of Communications.

“It is invaluable to us and allows for much greater flexibility in providing vital respite care to help family carers at nights and weekends.”

The respite care is essential for carers, who often have little time left for themselves when providing constant care for loved ones. It allows them to take a break, even for short periods so they can get out for a bit of shopping or to meet somebody for a cup of coffee.

Sometimes the carer will just need a couple of hours to lie down and rest but thanks to the National Lottery funding longer breaks can also be provided.

“The National Lottery gave us two nights in An Grianán in Co Louth last Christmas and it was absolutely brilliant,” says Marie.

“You could join in lots of different activities. I was in the cookery demonstrations and other carers were making Christmas Tree decorations or Christmas cards, things like that, and everybody loved it.

“You came back totally rejuvenated.”

Earlier this year Marie was one of 20 carers who received a long time carers award from President Michael D Higgins during a ceremony in the Shelbourne Hotel hosted by Mary Kennedy and Marty Whelan.

President Higgins presented the group with a commemorative piece of Penrose crystal in recognition of their love, dedication and many sacrifices made in providing long-term care.

Describing them as “unsung heroes” President Higgins said: “In our society we acknowledge and reward achievement, whether in business, sport, the arts or other endeavours.

“We are here now to celebrate achievements, which are born of a spirit of giving to others. Unlike others, family carers work is done quietly and in the background, and they neither seek nor receive any fanfare.”

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