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'My dad had a brilliant mind but then couldn't read or do crosswords and would ask me to take him home when he was already there'

As she and her partner prepare for an 80-mile walk along the Camino in Spain to raise awareness and funds for a local dementia charity, Caroline Pinkerton tells Stephanie Bell how the condition affected her dad who died a year ago

Caroline Pinkerton with her husband Peter in Hillsborough
Caroline Pinkerton with her husband Peter in Hillsborough
Caroline with her late father Seamus
Caroline Pinkerton with her husband Peter

Watching her dad succumb to dementia was particularly heartbreaking for Hillsborough mother-of-two Caroline Pinkerton because of his lifelong love of learning.

Seamus White, a well-known school teacher from Belfast, had a thirst for knowledge that never waned in his 79 years making the gradual loss of his memory all the more shattering for his loved ones.

Now to mark the first anniversary of his death and to raise awareness of the disease as well as funds for Dementia NI, Caroline and her partner, Lurgan dentist Peter Lamont, will walk 80 miles along the famous Camino. It will be a poignant week-long trek starting on the first anniversary of her father's death, April 4.

Caroline (45) who works as a long-haul air stewardess with British Airways and lives in Hillsborough is a mum to Polly (17) and Johnnie (16).

She says: "I'm reasonably fit but this will definitely be a challenge.

"I have been training and walking St Patrick's Way (an 82-mile walk between Armagh and Downpatrick connecting sites associated with the saint) to prepare for it. It has been difficult but the money we are raising is making it very worthwhile and the fact that I am doing it for dad."

Her dad Seamus was a head teacher at the former St Augustine's Catholic College in Belfast and was also Northern Ireland chair of the Irish National Teachers Organisation.

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He was devoted to sticking up for the rights of his colleagues and regularly appeared on TV news bulletins.

He was enjoying retirement with his wife Elizabeth (76), a retired nurse, when he was diagnosed with terminal vascular dementia in 2014.

The disease slowly progressed and Caroline is thankful that her father never reached the stage where he couldn't recognise his family. The youngest of six children, Caroline says that outside of reading and learning her dad was devoted to his wife, children and 13 grandchildren.

She adds: "Dad was a very intelligent man and very well known. He had a brilliant mind. He taught maths and during his teaching career he also studied through the Open University for a further two degrees.

"He also wrote two educational books which I didn't know anything about until he died. He retired early at 54 and was very much a family man and spent his time with us and his grandchildren.

"He did The Times crossword every day and was always reading, he would have read a full book in one day.

"He was very active in the teachers' union and would have been on TV a lot in the 70s and 80s. He was pretty outspoken."

Caroline says the family first suspected all was not well when her father's behaviour changed around four years before he died.

He was becoming forgetful, particularly struggling with his short-term memory.

Caroline accompanied him to his GP and was quite stunned when her father was diagnosed.

She says: "There was just something unusual about his behaviour and he was acting a bit differently. Alarm bells rang when he started repeating himself.

"He would ask the time and then 10 minutes later would ask again.

"He was a diabetic and on a lot of medication and when I went to the GP with him, the doctor discovered that he was taking medication that should have stopped six months earlier. This was not him at all as he was so strict and exact about everything.

"We were told he had vascular dementia and that it was terminal.

"I asked the doctor not to tell dad initially as I wanted to keep it from him.

"I think I was in denial as I wanted to have him for another 10 to 15 or 20 years."

The progress of the disease was slow at first and life continued very much as normal for the family.

It was only in the last 12 month of his life that Seamus's condition started to deteriorate to the point that he could no longer do simple everyday things that he once enjoyed.

Caroline says: "There wasn't a big change in him at first and if you didn't know, you would have thought there was nothing wrong with him and he was fine.

"It got to the stage when he couldn't read anymore which was something he loved so much that one of the rooms in his house was like a library.

"He would just stare at the first page of a book and not turn the page.

"He was super at crosswords and suddenly couldn't do them anymore.

"It was tough in the sense that he was saying things like he wanted to go home and yet he was at home.

"I remember he rang me at 2am one morning asking if I could go down and pick him up and bring him home. It was heartbreaking.

"It was the worst thing that could happen to him because he was so sharp and a go-to man for anything. No matter what it was you needed, you could rely on dad having the information.

"While he started to forget a lot of things, he never forgot us which is apparently quite unusual and something I am very grateful for."

Caroline decided last October that she wanted to do something special to mark the first anniversary of her father's death and raise funds for Dementia NI.

Today, it is estimated that there are 20,000 people across Northern Ireland living with dementia. Dementia is an illness that affects every person differently. Anyone can develop dementia at any age.

Dementia NI was set up in 2015 by five people with the illness to provide a voice for people who are living with a diagnosis and to reach out to others who have the condition.

Today the charity is led by people with dementia who are developing empowerment groups across Northern Ireland, with support from staff and volunteers.

The charity aims to challenge the stigma of having a diagnosis by raising awareness of dementia and promoting the rights of people living with the condition as well as influence policy, practice and service delivery across Northern Ireland.

Fionnuala Savage, income generation manager for Dementia NI said: "I'd like to express my admiration to Caroline and Peter for taking on the Camino.

"I would like to encourage people to show their support by sponsoring them on their JustGiving page.

"The lives of people are dramatically changed by a dementia diagnosis and Dementia NI is here to ensure everyone living with dementia in Northern Ireland will receive an accurate and timely diagnosis, have access to appropriate services and will live well with the right support.

"Caroline and Peter's support in this year's Camino means we can continue to raise awareness, educate the public, challenge the stigma of dementia and support those living with dementia and their families".

Caroline is delighted to be able to support the charity.

She says: "It is quite a new charity and it has members who are in their late 50s and 60s which shows just how common it is getting and it shows that you can live a reasonably normal life after a diagnosis.

"A lot of people think that life stops when you have dementia but it doesn't and dad continued to enjoy life right up to the end.

"I hope people become more aware of it and of dealing with some of the challenges that people face in everyday life.

"I am really delighted that so far Peter and I have raised around £1,000 for the charity which is amazing and we hope to boost it further and maybe get up to £1,500."

Caroline says she will find the 80-mile trek a real challenge physically but is looking forward to marking her father's anniversary in such a beautiful setting.

Pilgrims from all over the world have walked the Camino de Santiago trails across Europe for centuries, making their way to Santiago de Compostela in Galicia, in the north west of Spain.

Today, more than a pilgrimage, the Camino is an unforgettable experience and offers unique trails in Portugal, France and Spain.

Caroline adds: "I thought that the Camino would be something different and it is quite a spiritual walk and for me it will be cathartic as I miss my father terribly.

"We are doing the last bit of the walk which is supposed to be very beautiful and people are saying it is going to be tough but we are very excited about it."

÷ To support Caroline and the work of Dementia NI go to www.justgiving.com/fundraising/caroline-white-pinkerton. ÷ For more information on Dementia NI, visit www.dementiani.org or call the charity direct on 90 68 67 68.

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