In May we spoke to Ruth and Peter, who live in Hastings, about their experience of the Bereavement Support they received from the Hospice, following the death of their son Robbie in 2021. Robbie was diagnosed with significant learning disabilities and autism at 18 months old. He also had severe epilepsy, which continued throughout his life and was diagnosed with Dravet Syndrome at age 30. Robbie sadly died in November 2021 aged 37.

“We first heard about how the Hospice could help us when we were given some information by the Critical Care team at the Hospital, where Robbie ended his last few days,” said Ruth. “I remember taking the information home but it got lost amongst everything that was going on at that time. In early 2022, a few months after I first contacted the Hospice, there was a space for one-to-one counselling available.

“The counsellor was lovely and I had 12 individual weekly sessions with them. Although at the time it didn’t feel like it, by the end of the sessions I could see there was a significant shift in me. At first, I barely left the house and wasn’t sure I was up to it. By the end of my time with the counsellor I wanted to be there. It made the world of difference to have those 50 minutes with them. It was incredible support and enabled me to release of a lot of emotions.

“After these sessions, Peter and I joined a therapeutic support group for people who had lost adult children. The group gave us focus and being with people who were in a similar position as us with their grief meant we had somewhere to go where people understood. When we were in the group we were crying, it was painful, but it was so necessary to have that space to express those feelings.”

Peter said, “We felt nervous about going to the group at first, but after being there an hour we felt a shared understanding of what it was like to lose a child. We started to learn a bit about each other week after week and after the group came to an end, we continued to, and still do, meet up with most of them every three to four weeks.

“The group was facilitated by a qualified Bereavement Counsellor. It was very well structured. You were with people you could trust; they understood your feelings and what you were going through. You could say what you really felt.

“From there, we got into the Walk and Talk group at Alexandra Park. A group of us go for a walk every week and then sit in the café afterwards and chat. We’ve got to know so many people from this group. People come and go, there’s always new people, but there are also people who have been attending the group for 10 plus years.”

“Most recently we’ve joined Write Out Loud, a grief and loss support group where we spend time writing and then talking about our feelings. It’s great because it allows you to think differently about what you’re feeling from different angles. Everyone is different and the great thing about coming here and doing these activities is that it gives you time and space to focus on things and bring them to the foreground. Understanding grief helps us to support each other.”

Ruth continued, “What I find incredible and surprising about this group is just how much people are willing to share about their personal feelings and say things they trust you with. It’s a safe space. Whilst it can be incredibly difficult, it can also be very uplifting, but both those things need to happen on your journey through grief.”

“What we’d say to anyone who may need support is you don’t need to be worried about showing your feelings as everyone there is experiencing those same feelings. If you get upset that’s ok, we all do,” said Peter. “And if you’re afraid of not knowing anyone, don’t worry you won’t be on your own, there will always be someone there. It’s like anything, the first time you try to talk about it you’re in a heap and can’t get your words out but then because you’re in that environment, you just get used to it and it gets easier” follows Ruth.

“One of the things the involvement of the Hospice has given me is that it has enabled me to talk about Robbie openly without completely collapsing, said Ruth. “It’s a lifeline. The Hospice has become family.”

“We’re very grateful to the Hospice and still regulate our life by attending the different groups. We don’t know what would have happened if it hadn’t been there.” said Peter.

Our bereavement services are available to adults in Hastings and Rother and you don’t have to have had previous contact with us to access this support. Find out more by visiting our Bereavement Services page.

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