Thursday 19 April 2018

'I thought we had brought my daughter home to die' - mum opens up about life as a full-time carer

Rianna Dempsey and her mother, Lorraine Dempsey. Photo by tony gavin
Rianna Dempsey and her mother, Lorraine Dempsey. Photo by tony gavin
Pictured - Mark Fitzpatrick, (Family Carer Advocate. Founder of Our Childrens’ Health), Lorraine Dempsey ( Family Carer, Founder and Chair Special Needs Parents Association), Liam O’Sullivan (Care Alliance Ireland), Jack Renton, aged 12, from Galway, who presented a selection of his own family photography, David Dunne (St. Michaels House) Paul Sherwood

Daniel O'Connor

Lorraine Dempsey has been a mother and carer for 13 years, but when she first gave birth to her daughter Rianna she believed she had "brought her home to die"

Nowadays, Rianna lives with cerebal palsy and severe mental disabilities, resulting in Lorraine having to constantly care for her daughter.

However, Lorraine explained to that from the moment that she was born, Rianna had complications, and she knew that her and her husband's lives would be changed dramatically.

“She was born into trouble,” Lorraine said. “She had lost a lot of blood at birth. We knew instantly we were in trouble.”

“She wasn’t able to breathe by herself, she had a lot of complications as an infant. We didn’t think she was going to make it to 13 and half years”

“We knew from birth we weren’t going to have the happy baby shower or anything. We knew the path we were on. We brought her home to die”

Now 13 years later, Rianna is now able to attend a special needs school, which Lorraine explains gives her the needed time to do necessary things during the day, but a large period of her time is still dedicated towards caring for her daughter.

“The average day starts at 6:40," Lorraine explains. "She needs full help washing and dressing herself. Your typical dressing could take 15 to 20 minutes, and that’s just getting out of bed at the morning”

“She requires care you wouldn’t normally be giving to a regular 13 year old girl, but that’s just the way the life is.”

A lot of care is needed due to Rianna’s physical condition, but her mental disability also affects the way in which she able to communicate with others.

The family recently secured funding to obtain a hi-tech ‘Grid 3’ assisted communication tablet, which Lorraine says will hopefully better help her communicate with others outside her family.

“It can be difficult for people who don’t know her to understand her. Sometimes you can have a conversation, pick up a few words to hold a conversation because we know her”

“Certain type of seizures though can interfere with her speech though, or when she’s very ill her speech goes very unclear even for us."

Speaking duirng National Carers Week, seven days dedicated to acknolwedging the work of Ireland's 360,000 carers, Lorraine believes she has lost “a sense of identity” through the amount of work carers are required to do with little recognition.

She gave up a career in nursing due to the workload involved in caring for her daughter. 13 years after her birth, she says she’d still find it impossible to return to the workforce.

“I had no option but to give up a career to care for my daughter. There was no question of going back to work. She’s a teenager now, but all I can do is voluntary work”

“I don’t think I can go to an employer who would only let me do ‘X,Y,Z’ or if the school rang, whatever it is that you’re expected to do and drop everything. ”

“That’s the role of being a carer. That’s always there in the back of your head, that loss to your personal self and identity.”

“I don’t even know what to fill in for my occupation because I am not a housewife or a homemaker. I am so much more than that.”

For Lorraine, National Carers Week is about recognising the hard work and contribution carers.

She says that she would prefer people to thank her, and reach out as a neighbour, rather than speaking through what she describes as “useless” platitudes.

“Too often when we talk about carers it’s about aspiration and saintly figures,” Lorraine says.

“I am not blessed. This is our normal life in which I have no option to be a carer and a parent. I don’t want adulation. I want to be valued and respected for the role. ”

Lorraine is now asking member of the public to reach out to carers in their community to help them with the smallest of things, as opposed to simply praising them or wishing them well.

“Knock on your neighbour’s door. See if you can do anything at a practical level. If the grass is two feet high, offer to mow the grass. They might simply not be able to do it.”

The week is being run in conjunction of a number of groups such as the Alzheimer Society of Ireland, MS and Ireland and the Special Needs Parents Association; a charity set up by Lorraine to provide support and information for parents in a similar position to her own.

For Lorraine, she insists that work is being done throughout the country to make lives easier and more accessible for those like herself and her daughter, although more can be done.

“There are a lot of levels here and Carers Week will shine a light on that to make the lives of carers better, which will make the lives of the people we care for better also.”

“If there is anything that can be done during Carers Week, just be neighbourly.”

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