Thursday 24 August 2017

'I'm only doing what any mother would do' - Meet the Carer of the Year, Limerick mum Dorothy

Dorothy Meaney is devoted to looking after her daughter Zondra, who lives with a complicated, genetic disorder. She tells our reporter that it's not easy being a carer. However, she believes Zondra's journey is much, much harder

Dorothy Meaney with daughter Zondra and grandson Carrick. Photo: Brian Gavin Press 22
Dorothy Meaney with daughter Zondra and grandson Carrick. Photo: Brian Gavin Press 22

Joy Orpen

Caring for a loved one is surely the most unselfish thing anyone can do. It means putting the other person first, and accepting that your own life is on hold, usually for an indefinite period of time. Someone who knows this only too well is Dorothy Meaney, from Limerick, who has effectively been caring for Zondra, her daughter, ever since she was born, 32 years ago.

There were problems from the beginning. "Zondra got stressed during the birth, and afterwards they diagnosed a heart murmur, but they said she'd grow out of it," Dorothy says.

That was just the start of a whole range of puzzling ailments that would beset Zondra over the years. "Her hips used to click in and out," says Dorothy, who worried that hospital staff would point fingers at them. The little girl also had recurrent stomach problems which could be so severe, she would scream in agony, but doctors were unable to identify the cause.

With the onset of puberty, Zondra began having blackouts. It was suggested that panic attacks were responsible, so she was advised to blow into a paper bag until normal breathing resumed. "That's how I started school," Zondra says, "with a brown paper bag in my pocket."

"In desperation, I took her to all sorts of doctors," says Dorothy. "One of them told me to let her push herself to the point where she would have to be admitted to hospital. Then the doctors there would have to find the cause."

Dorothy passed on that particular piece of medical wisdom. So Zondra plodded on as best she could. She was a bright child, so even though she missed so much schooling, she got a good Leaving Certificate. Afterwards, she went on to study beauty and body therapy. But it emerged she didn't have the physical strength to perform therapies properly.

Then, one day while working in a salon in Limerick, she collapsed. Dorothy dashed to the salon, bundled her daughter into the car and got her to A&E. There, a condition which caused muscle weakness was identified. But yet again, doctors were unable to explain why she had that condition.

When she was 22, Zondra gave birth to her son, Carrick. Afterwards, she was so unwell, she had to give up work. She then began a science degree and rose valiantly to the challenge of academia. But after three years, ill-health forced her to put the degree on hold. When she was 25, she was diagnosed with postural tachycardia syndrome (PoTS). This can cause an abnormal increase in heart rate, when sitting or standing up, which can result in dizziness and fainting. So, finally, there was an explanation for the blackouts. But Zondra was still left wondering why she had so many other aches and pains, and why she continued to suffer from awful stomach problems.

When she was in her late 20s, she was advised to see a rheumatologist. As there was a three-year waiting list, she went to a private consultant who suspected she was suffering from Ehlers-Danlos syndromes (EDS).

In 2014, Dorothy and her daughter travelled to the Hospital of St John and St Elizabeth in London where Zondra was officially diagnosed with EDS. According to the NHS, this group of syndromes comprises rare, usually inherited, genetic conditions that affect connective tissue. Zondra says the symptoms can vary enormously from one person to the next, making diagnosis difficult. "In my case, EDS affects my skin, joints, tendons, ligaments, bowel and blood vessels." So finally, she had an explanation for the many, very difficult ailments that have stalked her over the years.

As if all that weren't enough, Zondra's skull is misshapen, causing part of the brain to press on the spinal cord (Chiari malformation). "This happens in less than 20pc of EDS patients," says Zondra. "It causes problems with my eyesight, it affects the strength and feeling in my legs, and causes intense headaches. I can only stay upright for two hours at a time."

Zondra goes to London every three months, where she is seen by specialists who prescribe various medications, and give her a number of injections in her head to dull the severe pain. Fortunately, friends and family help her to raise money for her various treatments and travel expenses.

Their help is even more essential now that the UK specialist has said surgery is absolutely necessary to deal with the problems caused by the Chiari malformation. However, the procedure is risky and needs to be done by a team that also understands the intricacies of EDS. It would appear that expertise exists in Spain. Zondra fervently hopes it will be covered by the Treatment Abroad Scheme.

In the meantime, family and friends continue selflessly to support Zondra, who, in turn, does her utmost to remain positive and cheerful in spite of her huge physical challenges. She does so for the sake of 10-year old Carrick, who is the apple of her eye. And she does so for the sake of her mother, who strives so valiantly to help her out. "She thinks of us the minute she wakes up," says Zondra, "and texts me to see if we need anything. I do try to be as positive as I can be, but who doesn't take out their frustrations on their loved ones? Yet, she never, ever complains. So, that's why I nominated her for the Family Carers Ireland award."

Dorothy says it's not easy being a carer. "Even when I go to bed at night, my phone is switched on. So, it's all-consuming. But I also know Zondra would much rather she didn't need to be cared for by me, or anyone else." Three years ago, the HSE agreed to give Zondra three hours of home help a day. "It really is comforting to know there are people with her we can trust," says Dorothy, who says she values the opportunity to rest when the HSE carers are with her daughter.

Last November, Dorothy was standing by her recently deceased mother's grave when they heard that she had won the Carer of the Year award. Zondra had an appointment a couple of days later to see her consultant in London. But even though she was still in deep mourning for her own mother, Dorothy picked up her travel bag and accompanied her beloved daughter to England. "Zondra's journey is so much harder than mine. I'm only doing what any mother would do," says this most deserving winner.

For information about Family Carers Ireland Freefone (1800) 24-07-24 or see familycarers.ie. For details abut Zondra Meaney's fundraising drive, see gofundme.com/60ban8

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