Bernie – Motor Neurone Disease

Being diagnosed with a life limiting disease such as Motor Neurone Disease is devastating, especially when faced with the prospect of no longer being able to live in your own home. This was a very real prospect for Bernie as he waited in hospital for funding.

Luckily a suitable package was arranged for Bernie to return home with live in personal assistant care delivered by Active Assistance.

Having live in assistants has enabled Bernie to have stability, and despite his physical deterioration, to remain fully involved with every aspect of his care and the decision-making process.

Active Assistance has built a close working relationship with Bernie’s medical team and worked together to establish care interventions in order for Bernie to remain at home. A Care Service Manager regular visits him to manage all aspects of the care package and offer real support in advocating for him, when he is no longer able to effectively communicate his wishes.

There have been times when Bernie found his lack of ability to move and verbalise, extremely stressful and he started to experience low moods. Having a dedicated manager and regular live in 24/7 support has kept Bernie engaged with social activities and family events.

Communication aids have been tried and tested to accommodate the disease progression and environmental controls were put onto his wheelchair in order for him to be able to access the outdoors independently.

Bernie relied heavily on the communication between his Care Service Manager and his Funder in order to keep his package of care running smoothly.

There are many occasions where Bernie will cry with laughter with his personal assistants, poke fun at his Care Service Manager or be purposely stubborn with his wife – but this is Bernie’s true character and its marvellous to see! Live in care has provided a solution for Bernie and his family to be together despite all the odds, and to be able to function daily and live a normal family life as possible.

Bernie has said “Having live in carers means I can stay in my own home. If I had had to stay in hospital, I don’t think I would still be alive. Being at home means I can have my own life, see friends and enjoy the things I like to do, whenever I like to do them.”