But one of the hardest parts during that time was knowing that Christmas in 2015 was going to be the last they would spend together.

"My mum was diagnosed with motor neurone disease, and at this time five years ago, it was unlikely she would have another Christmas, there were tell-tale signs that symptoms were worsening," Ms Gillard said.

"The sicker that mum became, the fewer people she wanted to see, and she was normally an extremely sociable person, but towards the end, she narrowed that in to immediate family only, and that was important to her."

That final Christmas was spent together as a family unit on the South Coast, before Lesley died just after the new year.

Now the chief executive of Palliative Care ACT, Ms Gillard said for many people in a similar position, Christmas can be one of the most challenging times of the year for palliative carers.

She said her own experience as a palliative carer has helped to provide advice to others who may be facing a similar situation this Christmas.

"Christmas can be stressful in any circumstance, and when someone is at the end of the life, you need to be extra kind and extra understanding," Ms Gillard said.

"Many people are pretty stoic at Christmas, and one of the things I would encourage people to do is to accept help from others when they offer it.

"It is a time of year when people do become more thoughtful."

For palliative carer support service CarerHelp, the organisation said the lead up to Christmas can often be some of the busiest times of the year as family members prepare for what could be a last Christmas.

A CarerHelp spokesman said often carers try and put extra pressure on themselves to make Christmas more special for the person they're caring for.

"Never feel shy to ask family and friends for help or support," the spokesman said.

"This is what the festive season is really all about, family and friends being there for each other.

"Also, consider ways that you can keep your family traditions going and include the person you are caring for in the celebrations."

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Ms Gillard said each Christmas since the death of her mother has been difficult, but traditions that were started during Lesley's final Christmas have still been kept alive.

"We did a lot of things that were traditional that year," Ms Gillard said.

"But during her last Christmas, she wasn't able to eat a lot, but that year we made a wreath pavlova just for that day. That's very much become a Christmas tradition now."