Early-onset Alzheimer’s is a frightening illness, as ex-bank worker Kathy Ryan tells Colette Sheridan
“The stigma, ignorance and rudeness out there are still at horrifying levels,” says Kathy Ryan, age 57, who was diagnosed with younger-onset Alzheimer’s disease in January 2014. This mother-of-two grown-up sons, who lives in Cashel, Co Tipperary and is the vice-chair of the Irish Dementia Working Group, received her devastating diagnosis having noticed that she was forgetting words and had problems with short-term memory.
She is one of 5,000 people in Ireland, aged under 65, diagnosed with younger-onset Alzheimer’s disease.
There are an estimated 55,000 people with dementia in Ireland although Kathy says the real figure is much higher.
International Alzheimer’s Day is tomorrow.In a pre-budget request, Kathy wants the Government to expand home-care services, to introduce a dementia advisor service and to fund communities of care.
What annoys Kathy is the insensitivity of people when she tells them of her diagnosis. “I’ve been tutted at when I’ve asked to be given a moment at a till so that I can figure out my money. I explain I have Alzheimer’s but the response is often, ‘ah sure, we all have a bit of that.’ I actually find it disrespectful. You might have memory issues but you don’t have Alzheimer’s so please don’t say that.”
On a practical day-to-day level, Kathy accepts her diagnosis.
“But there are times when I get up and I’m flying and I think, ‘not at all. It’s nonsense. I don’t have this horrible disease. I’m fine.’ And then I have an issue that trips me up and I realise Alzheimer’s is part of my life.”
About six months ago, Kathy had what she calls a scary experience.
“I drove from Cashel to Clonmel. Within a few minutes of getting out of my car, I got a few messages on my phone. But I looked up and realised I didn’t know where I was. I walked a few steps and then realised where I was. I can’t imagine that it lasted for more than one or two minutes but 60 seconds can be a very long time when you have no idea where you are.”
She takes annual tests to be deemed capable of driving. Kathy, whose marriage broke down, has a 23-year-old son and a 21-year-old son, who live in Waterford where they are studying and training.
“I want them to live their lives. A pretty crappy lot has gone on in our lives and for them to be watching me deteriorate is hard,” she says.
However, she is doing her best to stay active, volunteering in a nursing home and undertaking advocacy work for Alzheimer’s disease which sees her travelling the country, addressing communities and making radio and TV appearances.
“On a Monday morning, there are only so many times you can clean the house and walk the dog. The hours in the day can be very long,” she says.
Kathy’s last full-time job was in a merchant bank in Dublin. Before her diagnosis, she was a part-time mentor. She now lives on disability benefit. “My absolute dream was that when my guys went to college, I would get a degree. But I never got there. There is a massive side of me that is deteriorating. My reading at this stage is practically gone. Reading would have been a big part of my life, something I enjoyed. Sadly, it has become a frustration.”
Kathy is not throwing in the towel. She takes on board advice to people diagnosed with any type of dementia.
“I try to keep to a Mediterranean diet and I walk away from any processed food. If I have two pieces of processed food in a day, I’d be in a brain fog. I exercise and I try to stay socially connected,” she says.
Being so young to receive her diagnosis, Kathy describes it as “walking into a warzone. You don’t know what’s going to blow up in your face and what bit of your brain is going to work”.
Living on a low income means she can’t afford evening classes. “For those with younger-onset Alzheimer’s, there’s a massive disconnect. We should be offered cognitive stimulation therapy. But it’s just not there.” However, Kathy says being on an HSE panel, working on post-diagnostic support, keeps her going.
“It’s a rare month when I don’t have three or four places to go. I speak to carers and GPs, different professionals and business people. I have the privilege of listening to people all over the country. But there are lots of horror stories. We don’t even have a register in this country for people with dementia.”
Kathy is adamant the Government needs “to wake up to carers of people with dementia and the long-term impact of caring for a wife/husband or parent of someone with the condition. Families are struggling because they haven’t enough support.”
Kathy’s “biggest passion” is the need for a person to walk the path with the family of the person with dementia. “The diagnosis is not just for the person; it’s for the family. A link worker is needed for support.” There are just eight dementia advisors, supplied by the Alzheimer Society of Ireland and paid for by the HSE, for 13 counties. “If you don’t happen to be in one of those counties, then tough. It’s horrifying. It’s disgraceful.”
The Alzheimer Society of Ireland’s national helpline is 1800 341 341.
© Irish Examiner Ltd. All rights reserved