Paddy and Maureen tell their personal stories as part of the ‘Dementia: Understand Together’ TV, radio and online advertising campaign to increase understanding and support for people living with dementia. These are their stories:
When Paddy found himself becoming more and more forgetful, he had two choices: try to hide it or face up to it.
The Kilkenny man knew that he had to be honest with his family and his friends for his own good.
“I just thought, ‘Do I hide it or be straight’. I went with straight because what was I doing trying to hide it? I knew it would just make matters worse. You have to go out and do what you have to do, do everything as you used to do it before.”
Paddy was finally diagnosed with Alzheimer’s Disease. “I would tell everyone with Alzheimer’s to just keep going. For me, that was going for my walks or going up to Dublin for the matches. You have to carry on and live your life,” he says.
“Now walking down the street, more people talk to me now than when I was alright. Lots of people say hello to me, I’m just one of the lads again. We talk about the hurling and the football, nobody has started talking to me about my illness or asking me how I am. It’s great because I don’t want to be talking about my troubles.”
His wife Lindsey explains that the first symptoms in Paddy were panic attacks.
“He started getting these panic attacks and was getting very confused. Like when we were painting, he would go off to get a paint brush and come back with a sweeping brush,” she says.
Paddy reveals that it was very difficult to deal with the changes he was feeling and the confusion the disease was causing.
“At first I didn’t know what was happening and was afraid of meeting people I knew out on my walks because Kilkenny is so small so I started to walk further, walk more, determined to keep myself fit. There was one day I was talking to someone for five or ten minutes and I had no idea who he was. It really was crazy,” explains Paddy.
The couple admit that it took some persevering before they eventually got a diagnosis after having his fears initially dismissed by his doctor.
“One minute life is grand and then something starts happening to you. So I went to a doctor and I said there’s something wrong with me. He said there wasn’t,” says Paddy. Eventually, he was hospitalised and his Alzheimer’s identified.
Now Paddy is continuing to get on with his life as normally as possible, with Lindsey by his side.
“He’s still Paddy and I’m still Lindsey. It’s about respecting that space and respecting Paddy’s space to be his own person, that’s the best support people can give,” insists Lindsey.
“He’s not an eejit, he just communicates a lot differently than he used to. He might understand a conversation differently and his response times are different but he’s still the same person.
“For a while, I was very protective of people’s reactions to him. But now that people know, I don’t feel as protective. People need to take their own responsibility to how they react to a person with Alzheimer’s and to respect it.”
She admits that there is still a long road ahead for the pair.
“There isn’t just one big awakening. I am still figuring stuff out for myself. My responses to Paddy are not always hunky dory and there are lots that we both have to figure out,” adds Lindsey.`
Though it does make for some limitations or down days, Maureen also feels that her dementia diagnosis has also opened up new opportunities.
“It has given me freedom I never thought I would have,” says the former physiotherapist and keen hill-walker. “I’m in my fifties and I’m retired while I am still physically fit and can indulge all my pastimes. I’m not in pain, whereas people I worked with as a physio were in constant pain, they couldn’t move around by themselves. I can get out and about, I can go where I want to.
“I have great hillwalking friends and lots of links within the local community – I’m very connected with people around me.”
She admits that giving up driving hurt her but she happily recalls that she is ‘saving a fortune’ by swapping her car for her regular hour-long walking loop from her Kilkenny home.
“I have a pair of legs that don’t stop moving and my BBB - big blue bike - is in the hall so I can go wherever I want, within reason.”
Her adult children Mark and Toni continue to be her rock and she reveals that her daily texts to them have almost turned into a diary, much like the ones she kept in her youth.
“The kids insist I text them every night at 8pm, just to let them know I’m okay, but I can’t resist giving them a full rundown of the day. That’s almost like a little diary. I kept diaries as a child, which I still have and have been looking back over recently. It’s almost as if I knew something was going to happen to my memory. So fair play to younger Maureen for giving me back memories that were lost to me.”
Maureen’s positive attitude to her diagnosis has been helped by her interaction with other dementia sufferers through Dream Ireland, a group run by people with dementia for people with dementia.
“I think people would expect us to be very serious and solemn rocking in our chairs. But really it is like school days again, everything usually turns into a bit of a joke. It is full of information and tip sharing, but we all just like to have a chat and a laugh about everyday things too,” reveals Maureen.
“Any problem I come up against, I can find a solution or ask somebody who can help me to find one. There’s always a way.”
Her calendar, she admits, helps keep her together. “I don’t hold information in my head anymore,” she laughs.
She urges people not to be apprehensive about approaching and talking to her or other people with dementia.
“Just act normal, don’t be afraid to greet me as you usually would. I might not remember your name but I will remember faces and I will remember a feeling of being with you. I’m always upfront with people and I don’t think anyone has ever been offended by it.”
Maureen insists that she no longer allows herself to stress about the things she can’t control, such as not remembering a person’s name or not being able to find something.
“I don’t like wasting time, I like spending time and enjoying time. I don’t get stressed anymore - I probably stress the people around me but there’s nothing I can do about it,” she says.
The understand Together campaign aims to increase understanding and keep friendships, community and family connections alive, so that more people can live well with dementia
A new TV, radio and online advertising campaign to increase understanding and support for people living with dementia was today launched by the Minister for Health, Simon Harris TD, as part of the 'Dementia: Understand Together' initiative. The launch saw the unveiling of two new TV adverts telling the stories of Maureen O'Hara and Paddy Butler, both from Kilkenny, who have generously shared their experience of living with dementia for the campaign.
Read the Understand Together Press Release
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