Sheila running for dementia charity close to her heart

10 June 2020

WITH every kilometre Sheila Bailie has run on her 500-kilometre challenge, she has thought about a day when dementia can be cured or at least held at bay for the many sufferers of this progressive neurological disorder.

The Ballygalget woman has been taking part in the Running Down Dementia challenge to raise money for Alzheimer’s Research UK.

A keen runner, Sheila has already raised more than £1,600 since Easter by chalking up 518 km in a series of runs and walks at home.

As the carer for her 58 year-old husband, Martin, a former chairman of Ballygalget GAC, who lives with dementia, Sheila is often on her feet as she practices what she preaches in terms of an active and balanced lifestyle.

The founder and manager of Peninsular Health Living, an Ards peninsula charity based in Kircubbin which aims to address the gap in provision of certain health and wellbeing provision in the community, Sheila is only too aware of the importance of good health.

She and her husband are parents of former Sinn Fein councillor, Naomi Bailie, who was the first chairperson of the newly formed Newry, Mourne and Down District Council in 2015, and two sons, Shane and Caolan.

While her daughter’s sudden and very serious experience of meningitis in 2016 and her battle to recover made headlines, people were unaware that the early stages of her husband’s diagnosis of frontotemporal lobe dementia were happening at the same time.

“Martin looks physically very well and strong but the disease has taken its toll and when we are out walking local people can see how broken he has become, certainly from the person he was,” said Sheila.

“It’s very difficult for everyone, for Martin and me, the family and our friends. Some people have filled up with tears when we meet as they don’t know how to deal with seeing Martin as he is now.

“We don’t know why we are sent some trials but it’s important for us to remember that Martin fully understands everything while things are muddled and confused for him, he is still a person with feelings so we all try and be as upbeat and normal as we can.”

Martin, who celebrated his birthday at the weekend, used to play hurling for the Ballygalget club and Down — he was an All-Star in 1998. Friends and neighbours organised a cavalcade of cars past his home to celebrate with him as he enjoyed a low-key birthday under the Covid-19 lockdown.

The former trade union rep began to show signs of dementia in his early fifties, which is one of the indicators of frontotemporal lobe dementia.

Sheila explained: “Even though we didn’t get the diagnosis until 2016 when my husband was 54, I think we knew before that something was very wrong.

“I struggled to be listened to for two to three years within the medical system in order to have him seen by the right people before Martin was diagnosed.

“Everybody put down the signs to mental health illness or depression and yes, while all those things do come with it, there’s a root cause for the changes, particularly in personality.

“Initially, we noticed that Martin’s co-ordination went, also his ability to read and understand traffic and road signs. He would have gone up one way systems, got confused at road junctions, tried to run a red light, etc.

“There is also paranoia associated with the symptoms and Martin would have become very suspicious of people and he became quite disinhibited with the things he said, all of which is in keeping with this condition but was completely out of character for Martin.”

It was around the time that Sheila was getting close to a formal diagnosis for her husband when her daughter’s health tragedy also struck the family.

She said: “We went to see a consultant when Naomi was in surgery for one of the multiple surgeries, she needed in hospital to try and control the fluid in the brain as a result of her meningitis. She was still very much in danger at that time. Martin could not handle the pressure of what was going on with Naomi and his behaviour was becoming increasingly strange.”

Sheila’s family rallied around to help Martin and support Naomi through her later recovery. However, she admits being the sole carer for her husband is challenging.

“It’s great that people know more about dementia and can emphasise better these days with others who have a granny or grandfather with dementia but it’s completely different when it is somebody younger like your husband or partner,” said the grandmother of four.

While she had achieved her target for the charity, she aims to do the equivalent of 80 10k runs, around 500 miles, as a means of helping herself while she copes with caring during the lockdown as she also works from home.

“When I saw the challenge coming through, I thought that I needed to do something for me. I knew that even if I was running around the garden or on the treadmill, it was important for my wellbeing and sense of achievement and to keep me motivated as well,” said Sheila.

“It does definitely lift your mood, but when you are the only carer, living at home in isolation with someone who has dementia, it has a huge impact on your mental and emotional wellbeing.

“I find every day is very challenging and tough, every day brings different issues. On the days when I do get for a run, it does give me a natural buzz and I feel more energised and able to deal with any circumstances that life is bringing at the minute.”

To donate to Sheila’s cause visit https://run.thetreblechallenge.org/pages/running-for-my-husband

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