'I was in denial about what was happening, at the age of 54 it never crossed my mind I could be living with dementia'
The last thing Davie McElhinney expected at the age of 54 was a diagnosis of dementia. As Dementia Action Week begins today, Davie, who lives with his wife Alison in Fermanagh and has two grown up children, tells Stephanie Bell how he found hope in what seemed a desperate situation
Dame Barbara Windsor is said to be thrilled that speaking out about having Alzheimer’s Disease is helping people. The former EastEnders actress, who is 80, first learned she had the disease in 2014, but kept it a secret until now.
In an emotional interview, her husband Scott Mitchell revealed details of her illness because of rumours in showbusiness circles about her deteriorating health.
While everyone has the right to make that personal choice, too many people living with dementia face the condition alone and feel excluded from society.
This week is Dementia Action Week and organisations and individuals throughout the UK are taking steps to improve the lives of people affected by dementia.
Northern Ireland man Davie McElhinney has made the decision to take a stand by speaking up and taking action.
Davie, from Fermanagh, was only 54 when he was given his devastating diagnosis last May.
He had been experiencing regular forgetfulness and believes he was in denial for some time before finally going to the doctor.
Davie, a retired civil servant, is married to Alison and has a daughter aged 21 and a son, 25. The family lives just outside Enniskillen.
He says: “A few years before my diagnosis things were beginning to happen which my family were noticing more than I was.
“My wife began to really notice that I was doing strange things which were less obvious to me.
“I lost my car in the Asda car park and at the hospital, and thought it had been stolen. I was doing things like putting sugar in the fridge instead of the cupboard and losing keys and tools.
“I was forgetful, I was forgetting where to put things back, in my own home and workshop. This should be second nature to me, but I was forgetting.”
The turning point for Davie was a day when he forgot about an event his daughter was having at school. He was so upset about missing it that he decided to go to the doctor.
He said: “When I look back now I was really in denial, about what was happening to me and what was going on.
“At the age of 54 it never even crossed my mind that I could be living with dementia. I honestly believed I was developing a brain tumour and I was keeping all of this to myself, I was scared.
“In hindsight, keeping it to myself was no good. There was a big pressure on me to hide what was happening, from my family and the community.”
After an initial test by his GP that indicated something may be wrong, Davie was referred to the memory clinic.
“When I got my letter to attend, I didn’t show it to my wife or family, I didn’t want them to be upset, or to worry that this could be more sinister.”
He then had an MRI scan and a CT scan and it was an appointment with a consultant psychiatrist in May last year, some six months after seeing the memory nurse, that he was given the news that he had dementia.
Although he was very worried by this stage, dementia was the last thing on his mind — because of his age.
“I just didn’t make the connection,” he says. “Arriving at the hospital I was convinced I was going to be told I had a brain tumour. I was shocked and numbed when I was told ‘you have early onset dementia’.
“It was such a blur. It is a day I will never forget. It was the day that my world fell apart.
“My wife and I left the hospital room in total shock — I was unable to speak, and my head was in turmoil.
“I had just been told I had dementia. I was numb, I thought my life was over, I thought I had months to live.”
Like most people, a distressed Davie turned to Google to find out more about the condition. What he read frightened him even more.
He says: “My wife and I had so many questions.
“We didn’t get to chat to anyone following the diagnosis as it was a Friday. I then spent most of the weekend Googling what I had, what was going to happen to me, self-diagnosing, and this was a complete disaster.
“I was very angry, in complete denial and did not want to accept my diagnosis. I became very introverted and depressed and could only think of the worst. I knew people who were living with dementia, but in the advanced stages and this also scared me.
“I told my children I had dementia, I told them this and no more. I didn’t know anything else, apart from the things I’d read on the internet which were not good.
“The sadness began to kick in, as I started to think about all the things I might never get to see, like my daughter’s graduation this year.”
Then, Davie was visited at home by a community psychiatric nurse (CPN) who initially was able to reassure both him and his wife that he was “very lucky” as he’d been diagnosed early.
“I now know this is very important,” he says.
However the fear was crippling for the first few months following his diagnosis despite weekly visits from the nurse who was a great support.
He says: “I was terrified of the implications for my future, what would happen to my family and children.
“Little things really began to scare me, like missing out on my children getting married, milestones that most people in their 50s never give a second thought too, like seeing grandchildren.
“The fear and anxiety about my future kicked in, things like, paying for care later, can I afford this, and will I need it?
“The words of the consultant the day I was diagnosed rung very loudly in my head: ‘Get your affairs in order.’ I was so panicked that I was going to die.”
Davie says he had hit rock bottom — due to a combination of medication changes and fear of the future — when on the advice of his CPN he contacted the local support group Dementia NI.
Dementia NI is a membership organisation specifically for people living with dementia. It was set up by five people living with dementia, who wanted to ensure that the voice of those living with the disease was at the core of policy, practice and service delivery across Northern Ireland.
The charity has established Dementia Empowerment Groups throughout Northern Ireland to provide a place for people to come together, share experiences, reflect and provide peer support.
It was in November 2017 that Davie first made contact with the charity.
He says: “It was the best call I ever made. I was quite emotional, everything just spilled out.
“The local empowerment officer, Paula, contacted me and invited me along to their next meeting in Irvinestown.
“I was very nervous and didn’t know what to expect but as soon as I walked into the room I was immediately put at ease.
“Two people introduced themselves — they had also received a diagnosis of dementia and they put me right at ease.
“I got so much out of that first meeting and I finally realised I was not alone anymore. We had our Christmas dinner and I met one of the founding members of Dementia NI, John, who also lives with dementia.
“I spoke to John briefly that day, and from our chat I knew my life was not over and that I had so much life ahead of me.
“John is an inspiration to me and he gives me the power to carry on.”
Davie leant that living with dementia does not have to be negative.
His life has changed dramatically since joining the group.
Through the charity he has been helping deliver awareness sessions to students, care workers, the public and anyone who wants to know about dementia.
He is more active and has started exercising with a personal trainer and has taken up swimming.
He says: “I do puzzles daily with varying degrees of success, but nonetheless I do them. It is all about keeping the brain as active as possible.
“I have met some incredible people all living with dementia, normal people getting on with their lives and making the very best of it.
“I really believe Dementia NI has saved my life.
“I am no longer angry and in light of Dementia Action Week and joining the local Empowerment Group in Irvinestown I have now made it my goal to make things better for people living with dementia.”
He has also found a new focus and wants to change the way people are diagnosed with dementia.
He says: “Following our own experience, my wife and I discussed how important it is that there is a trained nurse available outside the consultant’s room.
“We went home feeling so lost, so numb and had so many questions.
“Had there been a nurse there we could have had our minds put at ease and been able to ask questions instead of spending the whole weekend on Google.
“I am trying to make sure this available for everyone, so they don’t have to feel the way we did.”
And he adds: “Understanding my illness has left me better able to face it head on. I now take it day at a time.
“I don’t think about yesterday and tomorrow has not happened yet. I live in the moment and set myself one goal to complete every day.
“I initially struggled with telling people and wanted to hide my dementia.
“That was holding me back and it was becoming a great burden, so I decided to tell my friends and my parents. This was a very big thing, but I felt a great relief and I didn’t have to live a lie anymore.
“I would urge anyone who suspects memory problems or other symptoms to go to your GP. It may not be dementia, but it’s better to have it checked out.
“And yes, I am going to my lovely daughter’s graduation later this summer and I am really looking forward to it.
“I have plenty more milestones to see.”
To receive more information, provide feedback or make a donation visit Dementia NI at www.dementiani.org