My husband Sam was born with spina bifida and hydrocephalus. In May2015 he had a blocked VP shunt.Following surgery to replace the shunt, Sam suffered a massive bleed on his brain resulting in emergency surgery. Sam spent the next 3 months in intensive care and high dependency, needing five more operations two of which were shunt replacements which didn't work. He had numerous infections, drains in his head and I was told to prepare for the worst four times. Sam spent a further 3 months on a neuro ward as he was medically unfit to move.Then he transferred to a Neuro disability centre where he didn't communicate or move and expectation was low state awareness at best.. Whilst there he had numerous infections and hospital admissions with sepsis. In Feb 2017 the shunt blocked again. Following this operation Sam began to talk, the feeding tube was removed and he began eating and he came home in Sept 2017.
A year on, life isn't easy. Sam lost his sight due to the bleed and his memory is VERY VERY poor, he literally can't recall anything twenty seconds or so after he's discussed it or done something. This is frustrating for him and me and puts a strain on us both.
He has to have 24hour care, 7 days a week. He relies on me totally for personal care. He needs assistance to get up/sit down using equipment and uses a wheelchair for transportation. He has very limited walking ability using a frame in the house and needs supervision constantly as he tries to stand up, forgetting he can't walk.
He suffers from anxiety and needs a lot of reassurance which places a lot of stress on both of us. We have sought advice from Headway and Notts mental health team but we have to take each day as it comes, there is no solution to how to overcome his problems as one compounds another.. A break would give him new stimulation however it needs to be somewhere adapted for his needs.and not too far away due to his anxieties on journeys.Thanks for reading.