Daily Life with a C4/C5 Spinal Cord Injury

For the first time since dads been out of hospital (3 years 1 month) both mum and I are away from home for the day. Taking a rare day trip out of Plymouth together. Normally one of us is around, at least in the local area.

A last minute invite to a garden party at Buckingham Palace and I invited mum as my plus 1. Thought we both deserved a treat. It’s a tough call always being mindful about dads care planning and overall care provision, so a day off sounds great.

Being the employer for all dads Personal Care Assistants gives us all the flexibility to plan a rota that works for dad, for all of us and for the PA’s too. We have such lovely and flexible PA’s that it was not issue covering the entire day from 0700 to midnight. 

With dads condition, he shouldn’t be left alone and, although he likes his freedom and doesn’t want someone watching him or sitting with him 24/7, it’s important that help and support is around when he needs it. At least once an hour dads catheter bag will need an empty forms start! Other than that a paralysed wheelchair user is alway going to need someone around for practicalities like food preparation, drinks, shopping and general company too. Dad can’t eat alone due to the risk of choking. With a high SCI, the lungs are also affected, which in turn will have a negative impact on his ability to cough or shout for help. Someone is always around. With the other health conditions associated with a spinal cord injury, he cannot be alone. Something it’s taken all of us time to understand, especially dad. Imagine when you’ve been so independent, working etc and then all of a sudden, life as you knew it, is taken away from you and your whole life is in the hands of others.