After months of testing Vince O’Rourke’s first wife Margaret, at just 59, was diagnosed with Young Onset Alzheimer’s disease.

The shock of the diagnosis turned to grief when Margaret was informed she had a terminal illness.  It was heart-wrenching to tell their three adult children.

Loss became the central theme as Margaret lost the ability to talk and abilities to dress, shower, toilet and feed herself. 

Vince’s six-year journey of caring, became a time of isolation. Family members and friends who couldn’t cope with the changes “left them”. It was difficult to go out as Margaret was incontinent and noise disturbed her.

Fatigued and needing time-out, Vince realised he had to place Margaret in respite and later in a nursing facility. 

The decision and separation spiralled him into guilt and grief. Margaret died nearly a year later in 2006.

Now Vince and his second wife Lorrae draw strength from their personal experience to help those going through similar journeys by hosting carers for well-earned breaks at their Nambour home — Carers Outlook.

“I had a mum with dementia and worked at Alzhiemer’s Queensland facilitating the carer support groups and education programs,” said Lorrae. “I met Vince when I invited him to speak at a conference and at other events. We married in 2010 and this house found us ... our first home together that we could share with family carers for respite.

“We’ve since hosted over 450 respite stays here at Carers Outlook.”

Vince said carers appreciated being able to stay and talk with people who understood their situation. “As we understand the struggles of people with dementia and their carers it is a privilege that we can help them along the way.”

Vince and Lorrae also facilitate, as volunteers, the Sunshine Coast Dementia Network and organise information sessions and catch-ups at Nambour RSL and Nambour CWA Hall.

They operate on a shoestring budget through donations from the carer organisations and nursing homes.

The couple says carers need more assistance especially with an advocacy service since Carers Queensland lost funding for carer programs this year.

“Carers Queensland Sunshine Coast lost its team of staff.  It was Carers Week recently and there wasn’t any Sunshine Coast event. Carer Support Groups facilitated by Carers Qld staff are defunct. The model operated by Carer Gateway is more online and peer supported.   Carers tell us they are too tired to operate a support group and liked it when a staff person could take responsibility and guide the discussion as professionals.”

• Information:  carersoutlook@gmail.com or 0418 298 183. www.scdementia.com.au. The next Sunshine Coast Dementia Network events are Cuppa at RSL Nambour, 12 Nov and meeting at CWA Hall Nambour, 10 Dec from 10 am. Email or text to register.   www.carergateway.gov.au