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Shelley Yourn doesn’t get out much any more.

Most of her time is spent caring for husband Mark, who has motor neurone disease.

Mark was diagnosed three years ago. He has now lost control of his body below the neck. His speech is soft. He can still swallow, but he relies on a ventilator to breathe.

Despite the challenges, Ms Yourn is caring for her husband at home. She is not alone, with support from Warrnambool and District Community Hospice and volunteer Carole Howlett. Ms Yourn credits their weekly shopping trips to Warrnambool with keeping her in touch with the “real world”.

“It has been hard because you go from being normal to having a parade of medical and tradespeople coming in and out of your house,” she says of her husband’s illness.

“There is no way that I could have dealt with it with as much grace as Mark. There’s never ever been a time when he’s said ‘why me?’, or has been bitter. For him it is just what’s happened, and we’ll deal with it.

“Mark was always the outgoing one, but I’m a fairly private person. People do overwhelm me sometimes, so it helps that Carole is sensitive to that. You just click with some people.”

Ms Howlett is one of the many volunteers with Warrnambool and District Community Hospice’s hospice in the home program that provides trained volunteers to fill the gaps in existing services with extended daytime, weekend, and overnight care to support the terminally ill and their families.

As Ms Howlett discovered, the job is often more about supporting carers, or giving them a break, rather than a hands-on role with the patient themselves.

“I would come and sit with her husband Mark while Shelley had a bit of a break, but then Shelley wanted to go into Warrnambool for shopping. The first time we drove, we felt comfortable to be really honest with each other, knowing there was no judgement. There was no need to hide things after that, and our relationship has been able to grow,” she said.

“If we’d met at the garden group or somewhere like that, we would have become friends. We have similar interests and it has just been lovely to get to know each other.”

Ms Yourn agreed that a firm friendship had developed.

“I really look forward to Thursdays when I see Carole. It’s nice to get out. For a few months there I didn’t leave Port Fairy,” she said. “It’s like going in with a friend, and I get to feel like I’m part of the real world too.

“I feel comfortable talking about Mark’s illness, but I am terrified about what’s going to happen... I can talk about it with Carole. I know that further down the track, Carole and I will continue to be friends.” Ms Yourn said she felt it was important to care for her husband at home.

“I want to have done everything I possibly could for him,” she said. “In a way, we’ve had this really precious time together. We still have lots of lovely days and it’s brought us even closer.”