When staff at NSW’s only children’s hospice, Bear Cottage, reviewed their comprehensive family support program for parents and siblings they realised there was one important group that was missing out.

Grandparents were visiting their grandchildren at the hospice, supporting their adult children and sometimes even standing in as their grandchildren’s primary carers. Yet despite this often significant contribution, grandparents’ need for support had been largely overlooked.

“Often we say the grandparents are the forgotten mourners,” said Bear Cottage social worker Liz Arnott.

“There was very little support available to them, especially around bereavement. They are often the last to get support, ask for help or seek it out.”

Moves to rectify that started with a dedicated ‘gramping’ event which will be repeated again in June this year.

Twelve grandparents from across NSW stayed for two nights in cottages at Q Station Retreat – the former North Head Quarantine Station in Manly, Sydney. They participated in therapeutic sessions, balanced with a reflexology massage and an up-beat drumming workshop.

Ms Arnott said many of the grandparents were nervous about participating in group activities and meeting new people, but connections were quickly forged once personal stories were shared.

A range of emotions were validated during a therapeutic activity which required grandparents to select a pebble to represent their grandchild, and then wrap it in layers of paper, materials and features.

“It was beautiful what came out during that time,” Ms Arnott said.

“Each grandparent spoke about what each layer meant about their grandchild and them as well. That helped them to talk about relationships and family connections and some really difficult dynamics as well.

“One grandparent said ‘I’ve lived for two years thinking no-one else feels this way, but hearing these stories makes me realise others are feeling this too’.”

Ms Arnott said grandparents commonly felt they had to “hold it together all the time” for their families, but sometimes they couldn’t. Sharing that helped them to feel that was okay.

Grandparents Gail and Pat Rafferty attended the camp and wrote about it in the Bear Cottage newsletter, acknowledging that they have struggled since the death of their grandson Aidan.

“Aidan is never far from our minds and little things, like his favourite song or a word he would have used would trigger an emotional downer. For the six years of Aidan's life, we were on this roller coaster of up and downs and then there was an emptiness that nothing will ever fill.”

While they were unsure about attending the camp, they found it both enjoyable and helpful.

“After we got home, we discussed what a wonderful weekend it was but it wasn't until a few days had passed when we both agreed that somehow we felt an inner peace and a little better.

“The thing about meeting and talking with other grandparents is that you have someone to talk to who is going through, or has gone through, the same thing as you are and understands your pain and feelings.

“Talking won't fix your pain, but it helps.”