It’s not something you really know about, not until it knocks at your own door,” Michael McIvor says of dementia.
In his case it was his mother’s diagnosis with Alzheimer’s which opened his eyes to the cruel and devastating nature of dementia - not only on the sufferer themselves but on their friends and family.
“They call it the long goodbye,” Michael said. “And that that is true. The person you love is still physically with you - but no longer the same person they were before. And it never gets better - there is no cure.”
For several years Michael watched his mother, Catherine, succumb to the illness. “I suppose it was like every family that I have seen through the society. We knew something was wrong - but we couldn’t put our finger on it.
“We started taking a bit more interest in what was going on and realised our father was basically going through hell trying to deal with what was happening on his own.”
When Michael’s father died of cancer, Michael and his siblings took on the care for their mother as her condition deteriorated. “We had to mount a campaign as such to look after after her. We all had jobs. We all had our children and families and mum needed more and more care.”
The McIvors turned to the Alzheimer’s Society for support during this difficult time - and Michael learned, painfully, first hand just how tough it can be, even with support, to watch the progression of dementia in a loved one. To this day, he still feels the loss of his mother deeply. “We had never taken up the offer of respite - and we did just once. We put her in Greenhaw over one Christmas - and she died on Boxing Day. That hit us very hard. I remember answering the phone, taking the call from my sister, to tell me mammy had died.
“It was very hard to get my head around.”
And yet it was that experience that prompted Michael to say yes when he was subsequently asked to offer his services to the Alzheimer’s Society.
It was a role he had never even considered at any stage in his life prior to receiving the phonecall from the local branch of the society seven years ago. And Michael has had a colourful life. In 1969 he was ordained to the priesthood and served the Creggan parish for eight year, through some of the worst years of the Troubles, before he made the difficult decision to leave the religious life behind.
“I had serious issues with the Church,” he says candidly. “The town was in turmoil. There was a lot of civil unrest. Bloody Sunday had happened. Widgery had been over and there had been a whitewash. There was a lot of poverty around. My part of the parish was from the chapel upwards - past Iniscarn. Things were difficult there.
“And I reached the position where I thought I could probably do more good out of the Church that in it.”
Michael moved on to the University of Ulster at Jordanstown where he worked in the Social Science department before moving to the Northern Ireland Office. He married Kate and became the father to two daughters. When he retired in his late 50s, the plans were simply to enjoy life.
But dementia and caring for those with the illness and their loved ones quickly became something Michael grew passionate about - not least because of his own experience.I’m not necessarily saying that if you have had experience of dementia you are better at the job - but I think it does help. I think it helps you to have more compassion and more empathy.”
As family support worker Michael would often go out and speak to famiies when they were first facing the diagnosis of a loved one. “At that stage they wanted to know what to expect, what they could do, what they needed to do.
“The tough part was I rarely had good news for people. Dementia doesn’t get better - but because of that having support there is so vital. It’s impossible to deal with this on your own.”
Over the course of his term with the Alzheimer’s Society Michael helped in excess of 600 families. He was involved in policy making for the society and worked with the PSNI and the Fire Service to train their staff in dealing with dementia patients. He recently worked with the Foyle Hospice staff to off the same training.“That is where the Alzheimer’s Society’s focus should remain,” he said. “At the heart of the community.”
The decision to retire, finally, was a tough one. “It’s hard to leave the families behind,” he says, emotionally. But for now it’s time to relax and put his family first. “I’m a granda now, with another grandchild on the way. I’ll be doing my best to enjoy that.”