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Sean Mackell writes about his advocacy work and the importance of being open about diagnosis

Friday 18 October 2019

I am a partner, a father, a grandfather, a brother, an uncle, a cousin and a friend. Life was good to me. I thought when I couldn’t remember things that it was just normal ageing. But in November 2018 that all changed when dementia stood up and punched me in the stomach. I didn’t see it coming. I had always been active. I walked, I debated, played golf and enjoyed the Craic and enjoyed a glass of wine now and then.

My working career was in the Irish Trade Union movement. When I retired a few years ago I had served for over 40 years. 40 years of negotiating, representing members, doing deals, supporting members and doing what was right. It was tough at times, but I found it rewarding.

I was settling into a happy retirement but a visit to the consultant knocked me for six. I was diagnosed with dementia. “You have Alzheimer’s, it’s a terminal condition and there is no cure. Do the difficult things, like making a will, sorting Power of Attorney, whilst it is still easy.” I was stunned to my core. However, I responded the only way I could. I resolved to do the very best I could for as long as I could.

Since then, I have been completely open about my condition, with our families, our neighbours and our friends. Being open has brought only good things for my partner Mary and I, people are really kind and supportive. My golf buddies now keep score so that I can concentrate on playing golf badly!

I lost no friends but gained help and support from those who knew me. So, whether it’s in the bank, the post office or the supermarket, I would encourage other people living with dementia to be open. Once you tell people, they are willing to help, allowing you to continue to be independent. If people don’t know, they can’t help and support you.

My partner Mary attended The Alzheimer Society of Ireland Family Carer Training so that she would know what helps and what hinders. Then I became involved in The Alzheimer Society, joining the Irish Dementia Working Group, which has opened up a whole new world for me.

I’ve participated in the launch of the Pre-Budget Submission – “Still Asking, Still waiting, Still Struggling” and lobbied our politicians ahead of the budget to allocate resources to support those living with dementia. We made some progress with the Irish Government funding 10 extra Dementia Advisors.

I took part in a Policy Café and have participated in a number of research studies that wanted to hear the voice of people who had been recently diagnosed with dementia.

I was recently elected on to the steering group of the Irish Dementia Working Group. They are good people and committed to try and help those of us who are living with dementia. I’m inspired by those who have been diagnosed for much longer than I have, who are continuing to lead fulfilling lives. I’m looking forward to the Steering Group induction day and to getting stuck in to the work of being an advocate for people living with dementia.

The Alzheimer Society of Ireland invited me to undertake an examination of how dementia-inclusive Croke Park, our largest sporting stadium, is. I am glad to say that they were very helpful and are committed to supporting people like me who want to attend games. Well done, Croke Park!

On another occasion, I joined a number of others living with dementia on the stage of The Abbey Theatre for an insight into Dementia and the Arts. It was an interesting attempt to shine a light on dementia and to hear my new friends’ testimonials. It was quite a buzz to stand on the National Stage, where so many Irish actors had stood before.

Dementia will be conquered someday, as were AIDS, TB, Polio and many other illnesses. I look forward to that day. In the interim, I will do my very best to continue being healthy as best I can.

Sean Mackell, living with dementia