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Neil's Story

"The Hospice is a club no-one wants to belong to but once we join, we all want to be in it."

Neil had Motor Neurone Disease (MND) since 2013 but Amanda, his wife, only discovered this after his death, when clearing out the garage and found an old letter from his GP. Neil was in fact diagnosed in 2017 age just 51 and died just 1 year later age 52, after living with a rare form of the neurological condition, which in Neil’s case had the added element of dementia."Life for a while before Neil’s diagnosis was hard for us as a family. His personality changed and his behaviour was erratic and antisocial. He became a man we didn’t know and we thought he had depression. We now know it was the MND taking hold.

One of the first pieces of advice we were given at the time of the diagnosis was to contact Isabel Hospice. I was surprised as I thought Isabel was just for cancer sufferers. Neil started to attend the hospice Neuro group which was weekly and held in Welwyn Garden City and it became our lifeline as Neil deteriorated. The group gave Neil comradeship, something to do and somewhere to be, a focus and place to go to feel understood and where he could get support with people going through the same thing.

Neil loved the Thai chi and used to come home and teach us what he had learnt. Neil joined the Feel Good Singing group too, although he could never sing and had a shocking voice he loved itJ! It was the same for the whole family. We all went along to the neuro group and had someone to talk to, someone who once a week asked how we were. We could go off with one of the staff, have a therapy session, have a little cry and then go back into the room with brave faces on. They helped us understand and made us feel part of a really important group. We made some lifelong friends. Without Isabel, all our lives would have been so much harder.

Up until the week he died Neil was fiercely independent. One time, before his illness, I bought him a t-shirt with the word ‘Stubborn’ on. It suited him perfectly! In all the time he was ill he never let me help with his personal care, even when he was in a wheelchair. A few days before he died we went as a family to see War Horse in Milton Keynes. Neil wasn’t feeling great that day but he wanted to go. Just two days later, he took a turn for the worse. We went to hospital and it turned out he had double pneumonia and died in A&E that night much to our absolute shock and devastation.

Life after Neil’s death has still involved Isabel Hospice. For quite some time after he died, both the girls and I, Katherine and Stephanie, went along to the neuro group on a Thursday. We talked to the friends we had made and got support from the staff and volunteers. It was still a place we wanted to be. As the time passed new families came along. They asked me what my involvement with the Hospice was and it was then I knew it was time for me to leave. I didn’t have the heart to tell them that I used to be like them, coming along with my husband and family and friend.

Now I receive support from Teresa, the bereavement counsellor at the Hospice. As a child I was always scared of dying but I am no longer, obviously I want to live as long and healthily as I can but I am not afraid and think that is because of what we have been through and how Isabel Hospice helped us. The Hospice has shown me what a hopeful and happy place it is because who knows what is round the corner for any of us."