For Fiona* it has been a slow process, a long, drawn out journey which is only now beginning to bring the pain and grief she had been told to expect. Her mother was diagnosed with dementia over five years ago and, at first, it appeared as if the condition was having little impact on her day-to-day life.
“We were flying for a long time but over the last six months it’s changed a lot,” Fiona says. “In the early stages, if the person isn’t progressing quickly, you’ll almost have days where you say ‘I think they got that wrong’, but then something would happen where she’d forget something or she’d start talking about something from years ago as if it was yesterday. It’s a scary journey.”
Yet in hindsight Fiona admits the signs were there even before the family received the diagnosis.
“For years nobody knew she had it, because it just wasn’t talked about, when we look back now we realise it had probably been there for a while and we just didn’t know what it was,” she says. “But that can happen, because someone living with dementia could get up today and be absolutely normal, and then they could get to 5 p.m. and be wanting to go home, even though they are home. Even in the course of a day you can have all those experiences.”
Underlining the prevalence of the condition, Fiona’s mother is not the only person in her life struggling with dementia.
“My partner’s mother has dementia too and over the past year she hasn’t recognised him, but she was able to disguise it, any time he’d go in she’d ask ‘oh how’s all the kids, and everyone?’ She still had the chats, but she’d never mention names. For him it was horrific, it was really hard. Watching him go through it was awful, ‘how can the person who gave birth to me not know me?’ You’re always living on the edge because you don’t know what the next day is going to bring.”
With four siblings, Fiona has someone to share caring duties with, but even so she opted to equip herself with additional skills from the outset.
“Very early on I did the family carer training and still, to this day, things happen which they told us about during that. I would advise anyone with a diagnosis in the family to take the course, it will give you the courage to deal with what’s ahead of you. We can talk to the staff at the Alzheimer’s Society of Ireland (ASI) and they might say ‘somewhere down the line this is going to happen’ and then when it does happen you’re like ‘oh, that’s what they were talking about’.
“Mam stayed the same for years and years, with only a very slight deterioration, then a couple of months ago there was a slight drop and then all the family carer training kicked in; things like labelled doors, having a clock which tells whether it’s morning or night, we got all these things, we were kind of ready, or we thought we were.”
Perhaps surprisingly, Fiona says the journey can have both peaks and troughs and doesn’t maintain a one-way trajectory throughout.
“She’s recovered a bit again. That can happen, they can go down and then up again. So I would say to people, ‘don’t panic, they can come back from this’,” she says, adding that the support of the ASI has proved invaluable to the family.
“We have the ASI services coming in and that carer is now like another member of our family, it’s such a relief to have someone coming into the home who understands what the person is going through, sometimes through their experience they might even understand it better than the family members in the initial stages.
"The supports in Wexford are very good, we’re very lucky, we were referred to everything we needed straight away. When there’s a diagnosis of dementia, it not only causes fear for the person living with the condition, it also causes great fear for all the family members because you don’t know what’s ahead of you.”
*Name has been changed to protect individual’s identity.