Living with a loved one’s dementia

By Meg Hill

According to Anne Fairhall, whose husband of 60 years is living with advanced dementia, the one thing most people need to understand about the disorder is that you can live well with dementia, but the person living with it cannot change – so the people around them have to.

“A lot of people, even when they get to the point of having their loved one go into care, don’t understand that,” she said.

Anne lives in a Southbank apartment, where she moved after a long period home-caring for her husband Geoff had come to an end. Geoff had entered a residential aged care home because of Anne’s own health burn out.

The couple had lived together in an apartment in the CBD for more than two decades. Geoff was an academic, spoke many languages, flew light planes and loved offshore sailing.

But 30 years ago, aged 51, he began developing frontotemporal dementia.

“He maintained functionality for quite a long time until he eventually deteriorated very badly and needed more support than I could provide, going into care nine years ago,” Anne said.

“But he was going through behavioral changes that whole time. It was really very hard for him because he had a brilliant mind. He experienced a gradual whittling down, a reducing of what he was capable of, and lost a lot of what he loved.”

Geoff and Anne had what she described as a very fulfilling life together, but Geoff – who had always been kind and calm – became harsh and temperamental. He began lashing out as he gradually lost capacity to function in the ways he’d always been able to.

And none of it was helped by a lack of proper diagnosis for more than 10 years.

“He had an early onset of frontotemporal dementia, which is not so much about memory loss, but loss of executive function, anger, frustration, control, behavioral and personality change,” Anne said.

“The person they really are never fully goes away, their core persona is always there to find, but it can be very difficult.”

Anne’s recollections of Geoff’s changes follow the loss of executive function, on the one hand, and his changing, out of character behaviours, on the other.

When they visited their country home once, Anne was pleased that the man she once knew to teach himself new languages, fly planes and sail on his days off could still manage to pick lemons from their lemon tree.

But after asking him to help rearrange the garage, she was met with an outburst and locked inside.

“It was too complex for him and I didn’t realise that at the time,” she said.

“He would do something he would have never done in his life before, out of frustration or anger. I’ve now heard from so many other family carers of stories like that, too, but at the time I felt very alone when that happened to me.”

Although Anne said was unavoidable that if your loved one developed dementia, you must change for them – and make sacrifices in the process – her second lesson seems to be one about independence and maintaining interests of her own.

It’s what led her to her apartment in Southbank and, along with Geoff’s wellbeing, has guided most of her decisions over the past 30 years.

“We’ve experienced a huge amount of grief related to loss, because we had a really good marriage. It was anticipatory loss, and it was about loss on top of loss, without actually losing the person you love. But Geoff is well cared for and calm now where he is.”

As for Anne, she’s spent the better part of the last year as a member of a new Probus Club – a social club for older people – where she became vice president.

“I’m just on 77 so looking ahead on the next 20 years until my mid-90s. I just want to be able to be independent and stay connected, regardless of what happens with my husband.” •

For more information: dementia.org.au / bearbrassprobus.org