A DEMENTIA carer from Limerick has said it was lonely to “find out your parent had an illness you couldn't talk about”.
Rachel McMahon, from Limerick city, shared poignant personal testimony at the Alzheimer Society of Ireland's AlzTalks event at the Hawk’s Well Theatre in Sligo.
AlzTalks was developed to help shatter the stigma and misconceptions that often surround dementia and Rachel spoke about the loneliness, the uncertainty and the profound shock that her family experienced when her dad, Tony, was diagnosed with dementia.
Rachel was in her first year studying Journalism in Dublin in 2005 when her father Tony was diagnosed with Early Onset Alzheimer’s at the age of 58.
She assisted with the care of her father for several years as she worked as a broadcaster and later, as a social media strategist. Tony passed away at the age of 66 in 2012 in a nursing home facility.
Rachel became interested in advocacy work in 2014 and began to share her experiences of living with dementia as a young carer through writing, radio and social media. In 2017 she joined the Dementia Carers Campaign Network (DCCN), which is supported by the Alzheimer Society of Ireland, to lend her voice to a dedicated advocacy group of carers.
She took up the mantle of caring again this year when her grandmother was diagnosed with mixed dementia.
“Lonely is the only word to truthfully describe what it was like to be 19 and find out your parent had an illness you couldn't talk about. I didn’t know how I was allowed to feel so I retreated. No one hugged me. No one knew what to say. I didn't know what to say. College was over after that, my heart had left the night I learned Dad had Alzheimer's,” she explained.
“As hard as life became on this meandering path that took us deep into an undiscovered country those of us who loved my father realised we had a finite amount of time with him. We made everything of it. When I recall the hardest parts of our journey I balance them with the memories we made or that I was a part of – for example, I remember our trip to Wales for the Heineken Cup final to see Munster beat Biarritz and lift the trophy.
“My mother once said Alzheimer's changed everything. It changed the trajectory of my life. It challenged my fear because I had no choice but to learn what it was and learn its language, so I could understand what was happening to Dad and more recently my grandmother who was diagnosed last year. Alzheimer's changed me as a person, and sometimes I don't know how to feel about that. Who might I have been if Dad was never diagnosed? Yet 13 years on, I don't think so much about what I was lost. I think of what I was given. A voice. A voice that is finally heard.”
Other speakers on the night included members of the IDWG Jacinta Dixon (Dublin), Kevin Quaid (Limerick) and member of the DCCN Helena Quaid (Cork).
There are over 2,000 people living with dementia in Limerick and the Alzheimer Society of Ireland Head of Advocacy & Public Affairs, Tina Leonard said: “We are very excited to launch these videos which detail the very personal stories of each advocate; from those who have dementia and those who have cared for a loved one with dementia. The general public needs to hear about the personal stories of people with dementia and their carers to help bring the subject of dementia, which is often not spoken about in Ireland, into the public domain.
“All of the presentations from our event in Sligo have now been uploaded to our AlzTalks YouTube channel which has been created to bring dementia out of the shadows and enable the many different voices of dementia to be heard all over the world.
“We hope this will provide a platform to allow awareness-building and perception-changing of dementia, given that a lack of understanding and stigma is still rife. Having people speak about their own lives and experiences creates a better understanding of the unique experiences of people living with dementia.”
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