We have launched touching real life stories of people with dementia and carers that were recorded at the celebratory AlzTalks event at the Cork Arts Theatre during World Alzheimer's Month 2017.
The eclectic event, which was held on Wednesday, September 27th, looked to shatter the stigma and misconceptions that often surround dementia as people with dementia and carers presented to a packed live audience and spoke about their own personal experiences of dementia.
Sean Toomey (from Cork), Helen Rochford Brennan (Sligo) and Michael Higgins (Cork) spoke about living well with dementia post-diagnosis and Sean Donal O’Shea (Kerry) and Catherine Kennedy (Tipperary) spoke about their experiences of caring for loved ones who had dementia.
Musical acts for the AlzTalks event included the legendary John Spillane, The Lee Valley String Band, opera singer Amanda Neri and singer-songwriter Laura Elizabeth Hughes. The MC for the evening was Cork native and RTE presenter Sinead Kennedy and the Lord Mayor of Cork, Cllr Tony Fitzgerald, also delivered the opening remarks.
RTE presenter and MC for the night Sinead Kennedy
● Sean Donal spoke about caring for his mother, Debby:
“I became a carer without realising it and I took on a change in family roles, I became my Mam’s carer when she was 50 and she would want me to honestly speak about the struggles of caring for someone with dementia. I really want to send a positive message out there for carers, but we have to be realistic and give the full picture of dementia. The first time I brought her to the toilet, showering my mother, putting her to bed, feeding her, sitting her up when her swallow was gone because she was choking in front of you, is not something that I imagined doing until she was maybe in her 80s.”
● Helen Rochford Brennan spoke about the day she received her dementia diagnosis:
“There is no way I can describe the shock the day that I received my diagnosis and long lonely drive home from Galway to Sligo wondering how I was going to tell my family. I don’t remember the conversation that day with my family – but I do remember the pain. How do you tell your loved ones that in an undisclosed amount time you not be able to recognise them nor retain all the wonderful memories you’ve retained along the way? That is how I felt on my drive home that day.”
● Catherine Kennedy talked about caring for her husband Liam who was diagnosed with dementia at age 42:
“When you get a diagnosis like dementia, age shouldn’t come into in when you are looking to get supports. Because Liam was so young and was diagnosed with Younger Onset Alzheimer’s, there were literally no supports for him – no respite, no free GP, no nothing. I remember in the early days of visiting Liam [in a nursing home] I would take him for a walk every morning and then collect the children from primary school. They would go in and do their homework with Liam and sit and play with him in his room.”
● Sean Toomey spoke about being diagnosed with Alzheimer’s after a long illness in 2015:
“If you have dementia, or your family member does, my advice would be to keep active, stay a part of the local community. Join an advocate support group and don’t be afraid to speak up for yourself. I also believe that it’s good to be open about having dementia – I always tell people that I have the condition. I don’t believe in hiding it away. There should not be a stigma around dementia. We should all be open about it as a society and talk about it more”.
● Michael Higgins spoke about coming to terms with his dementia diagnosis:
“For me, when I first attended Bessboro, it was an outlet for me, because prior to that when I started getting dementia I was asking ridiculous questions at home and it very stressful for my family, but by going to Bessboro it became more clear to me what was happening and I was able to cope better with my diagnosis.”
The individual presentations are also available at the following links below:
Helen Rochford Brennan
Michael Higgins and Jon Hinchliffe
Sean Donal O'Shea
Sean Toomey with grandson, Conor
Lord Mayor of Cork Cllr Tony Fitzgerald and ASI Head of Advocacy & Public Affairs Tina Leonard
The Lee Valley String Band
Laura Elizabeth Hughes