Sean's story

At Christmas 2015 Sean relocated back home to the UK after more than a decade abroad. Within a year his mum was diagnosed with motor neurone disease and then his dad died suddenly.

He has been struggling since to make sure his mum gets the best care possible.

Linda sadly passed away in July, just a few weeks after we launched MND Costs. We continue to share her story with kind permission of Sean and his family.

Sean grew up in South London and his hard-working parents Bill and Linda worked long hours running transport cafés. He left home aged 19 and in 2004 moved to Australia with his future wife.

They stayed, his career as a project manager took off and the family grew. Sean’s parents visited to spend precious time with their three grandchildren.

But by December 2015 they had decided to call the UK home again and settled in Surrey. When Sean was away on business Linda was rushed to hospital – after waking up unable to speak. After many tests she was given a diagnosis of MND - which the retired couple struggled to come to terms with.

In February, just days after a family visit to his parent’s home in Norfolk (see picture), Sean’s dad Bill died suddenly. Sean said:

“The first thing mum wrote down when I saw her after my father passed was ‘can I come and live with you?’ and I said, ‘that’s a fantastic idea’ but little did we know how quickly things progress and that she would need full time care.

In April whilst Sean was visiting, Linda had a bad fall at home and she went into hospital.

“I don’t think she has come to terms with losing dad so suddenly on top of the diagnosis. Still today she writes down that she misses my father. He did everything for her, all the financials... everything.”

MND Costs - Sean's family
MND Costs - Linda and children
MND Costs - Linda in Water park

Sean fought to move his mum closer to his home and arrange the right care for her.

“It shouldn’t be that difficult. I understand that there are financial constraints but it’s very clear when you have a terminal illness and you are really, really progressing really rapidly you need help. You need access to the specialists and you shouldn’t have to wait for things to be processed. Having my mother wait in the hospice for an extra two days because the Clinical Commissioning Groups for two areas couldn’t agree between themselves who should make the next assessment was terrible.……. It just shows you it is all about the money and nothing else and that is understandable to a certain degree but it needs some humanity around it too..”

Linda is now in a nursing home near Sean and his family, and he visits her every day.

“Mum has some savings - about £3k - but that will start to tick down, so where I can I am helping out but there will come a point when that money runs out and we just hope we sell her house by that time and we can plug the gap [primarily in care home costs] with that money."

“Just over a year ago we came home to spend more time with my father and my mother and to let them get to know the children again. But now my father has passed away and my mother is unrecognisable really. It’s heart breaking."

Life with motor neurone disease is tough enough without being pushed into financial hardship.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262