Tipperary Carer of the Year accuses successive Governments of failing carers

A Tipperary woman who lost her fourteen-year-old beloved son Alex last October after she and her family cared for him around the clock is in a good position to evaluate what successive Governments have done to support families in desperate need of assistance.

Killenaule woman Maggie Butler was named Tipperary Carer of the Year in 2015 and again in 2025.
Reflecting on the level of support provided to carers by successive Governments over those years, Maggie said nothing had changed.

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“The problems for carers we were talking about in 2015 are the very same problems that exist today, ten years later. It is absolutely shocking,” she said.

Making an impassioned plea for more practical supports to be put in place, Maggie said every day continued to be a battle for carers, with nice platitudes from Government representatives every now and again amounting to nothing.

That glaring lack of support and the knowledge that so many people are struggling as carers is the motivation behind her decision to return to education.

Maggie intends going back to education to enable her to provide invaluable help to carers who feel forgotten about.
After devoting the last fourteen years to full-time care for Alex, it is remarkable that Maggie would want to pursue a career in caring.

“I know how difficult it can be every day for carers. They need help, and they need people who understand what their needs are and how to access services,” said Maggie.

Maggie and Michael, who live at Ballintogher, Killenaule, cared for Alex until he lost his life after a courageous battle against serious illness all his life.

Alex was a twin brother to Adam, and they have three older children: Dillon, Caoimhe, and Megan.
Because of the challenges they faced as a family,Maggie has an innate understanding of what carers are faced with every day and how frustrated they are by the bureaucratic obstacles that prevent carers from getting the help they need.

OBSTACLES
Both Maggie and Michael have plenty of experience in confronting those obstacles that drain the energy of carers who need practical support.

Maggie highlights one example to illustrate how practical intervention could make a huge difference to carers and their families.
She remembers the constant battle they had to get help with soaring electricity bills at home, where Alex was cared for by a caring, dedicated, and professional team.

“We were basically running an ICU unit from the bedroom. The electricity bills were enormous. The week Alex passed away, we received an electricity bill for €1,000,” she said.

“There are so many families like ours that are struggling. Carers are expected to live on nothing; everything is a battle. The Government just sits back to allow carers rely on Hospice, Laura Lynn, and the St Vincent de Paul.

“Without people in those organisations, we would not have survived as a family,” said Maggie.
Maggie said that successive Governments were to blame. She believed there should be somebody in the system that carers could go to so they can access support.

“At the very start of a carer’s journey, there should be somebody in the system who would go and sit down with that carer and ask them what they can do to help.

“That should be the starting point. I would love to have met somebody like that when Alex was born. Nobody came to us and looked at the situation we were faced with,” said Maggie.

“The Government should be making it easier for carers to access the services they need, so that it is not a battle every day to get what you need,” she said.

BORN PREMATURELY
Alex and Adam were born prematurely on April 25, 2011, at 28 weeks. At the time, their concerns were mainly about Adam, as he had meningitis and chronic lung disease when he was born and weighed 1.14, with Alex weighing 3.8.
Subsequent scans, however, showed that Alex had massive left and right side damage to his brain.

Heartbreakingly, Maggie returned home from Holles Street, where the boys were born, without either of the twins.
Alex left Holles Street 70 days after he was born, spent one week in Tipperary University Hospital in Clonmel before going home, where he received full-time care at home.

Alex had a range of disabilities and required round the clock care.He had cerebral palsy and also suffered from epilepsy and he was non-verbal and had to be tube fed.

Adam is fourteen years of age now and is doing well, enjoying his time in school in Scoil Ruain in Killenaule, and is very interested in woodwork and metalwork.

“We spent fourteen years watching them lead different lives. The milestones, like birthdays and Christmas, were different experiences for them,” said Maggie, pictured below receiving her Tipperary Carer of the Year Award from Richie Molloy of Family Carers Ireland.

Maggie said they had learned over the years that not only was it important to be there as a carer but it was vital to be an advocate for the person they were caring about as well.

SECOND HOME
Temple Street had become a second home to Alex throughout his life.He was admitted there as a result of complications with a virus when he was experiencing difficulties breathing in 2023. He was ventilated and there was a lot of discussion about his future care as issues arose when trying to take Alex off the ventilator.

Maggie said it was suggested to the family that they should look at care and comfort for his future care but she strongly felt that Alex should be given a tracheostomy.

“We had to persuade them to carry out the tracheostomy. I asked them to give Alex a chance and argued that if he was not given the chance that the family would always regret that he was not given the chance,” said Maggie.

“I really believed the tracheostomy was the right thing to do for Alex. Thankfully they went ahead with it and we all got to spend two more wonderful years with Alex that we might not have had,” said Maggie.

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She has called on carers to go with their gut feelings about what is best for the person they are caring for and not to be afraid to express that opinion with medical teams.

Maggie’s decision to be vocal and to advocate on behalf of Alex gave her and Michael, Dillon, Caoimhe, Megan, his twin brother Adam and the extended family more precious time to spend with Alex, two years of memories they will cherish forever.