'We have cried together, we have laughed together' - mother-of-two (57) on telling her children she had dementia
“Just the other day I stopped myself recently from taking something out of the oven without gloves on.”
“Another time, I parked my car and in the space of two or three minutes I got an email, I got a text, and someone phoned me, and I suddenly looked up and didn’t know if I was in Thurles or where I was.”
“That day, I don’t know how long I was there but no one approached me and asked how I was. A guy bumped into me and that was a jolt for me.”
“It was one of the most frightening feelings when I realised what had happened.”
Kathy Ryan (57) has early-onset Alzheimer’s disease. She was diagnosed after she noticed she was forgetting words and had problems with short-term memory.
Six months after she was diagnosed, she took the difficult step of telling her two sons, now 21 and 23.
“They were both still in school when I was diagnosed. They would have seen dementia first hand because my Dad has vascular dementia. I didn’t tell them for six months and as time went on I told them and we’ve talked about it.”
“They’ve even gotten as far as to asking me what flowers I want on my grave. My son who went to London in November found it hard to leave because he had been there in the house for two years, but I’m quite happy for the guys to do their own thing and to go into a nursing home. When I get to the stage that I can’t mind me, because there could be years left after that.”
“I know I’m dying. My bladder doesn’t work anymore. My bowel doesn’t work anymore. I know there’ll be a day I won’t recognise my children.”
“We have cried together, we have laughed together, they’re very involved. I try not to let them worry too much. But we love each other and you don’t not worry about someone you love.”
“There are things they recognise that I can’t do. I’m always saying to them, tough things happen to all of us, but you’ve a choice every day to either sit on your backside or to try and get on with it.”
“They have seen me become overwhelmed. And before I didn’t know what was going on, I got very cranky, until I researched what was going on, and I told them if I walk away or switch on the TV, just recognise that I’m a bit overwhelmed and need to be on my own for a bit.”
“I’m independent; I’ve always been independent; I hope I’m a good role model for them.”
Kathy will walk part of the Camino Way, a 115km trek from Sarria to Compostela, with TV3 presenter Deric Ó hArtagáin and the Alzheimer’s Society of Ireland in September.
“This challenge shows that people with dementia can still do the things that other people can do. I am looking forward to following a training programme over the coming months and getting ready for the challenge,” she said.
Kathy will follow this training programme in spite of the fact that she can feel her dementia worsening.
“Yes absolutely it’s progressing. There’s days I can wake up in the morning and think I’m fine and then something happens and you know you’re not ok.”
“I’m noticing day to day living is becoming more challenging. I try to put things in place to make sure I stay as well as I can
“If I’m going up or downstairs I need to hold on to the handrail. Everything is preparing ahead of time. Everything seems to take me longer. Now, I make sure I know the route and print out a Google Map before I go somewhere.”
“I make sure I’m concentrating on things like notes on the front door that say is the heating off, have you got your phone with you?”
“I’ve started a diary. If something isn’t in the diary anymore, even if I’m meeting a friend for coffee, I find I don’t remember it now. Often, had I not looked in my diary, it wouldn’t have entered my head.”
“It really is about planning around that. It could be a meeting in Dublin. What time is my train and making sure I’ve money for parking.”
The Tipperary woman speaks at conference on dementia. She spoke in Bulgaria a few months ago, and will speak at a conference in Italy in March, and is a member of a post diagnostic steering group with the HSE.
“These are all things that keep my brain challenged in different ways,” she says.
“When you’re diagnosed you’ve a right to signposting of information. It’s one of those abysmal black holes when you’re given a diagnosis without any information.”
“It’s going to take rocket science to find a cure but it’s not rocket science to give people information.”
The Alzheimer Society of Ireland National Helpline is open six days a week Monday to Friday 10am-5pm and Saturday 10am-4pm on 1800 341 341.