David cares for his son Andy, 23, who has muscular dystrophy. Andy requires constant support and care, which for many years David and his wife were happy to provide, and between the two of them they also ran their own business.
Despite living with this debilitating disease, Andy has a very active and enjoyable social life, which his parents always did their best to encourage and support.
How David’s caring role became overwhelming
In 2007, Andy complained of pains to his chest. Later that night he had a heart attack and was rushed to hospital. He remained there for more than four months, having caught pneumonia. Because of his muscular dystrophy, Andy is now permanently on a ventilator.
David managed to convince health professionals that he and his wife were able to look after Andy at home, who in the meantime had already demonstrated he had no intention of remaining in hospital, having already been out with friends, ventilator in tow.
Andy returned home, but required 24-hour care and supervision in case of problems with the ventilator, resulting in him being unable to breathe. Just six weeks after Andy had retuned home from the hospital, David’s wife was diagnosed with cancer. In May 2010 she died.
After his wife’s death, David had to look Andy for 24 hours a day, with only a few hours of help from a professional carer. He was unable to continue working with his business and was struggling financially.
Getting help and support
The local authority social services arranged a package for David and his son for more than 160 hours of carer support a week. But following his wife’s death, financial support stopped. This prompted David to contact the Carer’s Direct helpline on 0808 802 0202.
Following the call, David managed to get his benefits and package reinstated and backdated. Through the support of Carer’s Direct and social services, David says that the quality of his, and Andy’s life, has improved immeasurably.
David says: “I’d never have known what I was entitled to. Before, I couldn’t even get a bottle of milk without someone being around to supervise Andy. Now, with the amount of care support we get life is so much better and it’s an enormous relief.”
We know that every carer will have a different story, different needs and different problems to overcome. That’s why our helpline is free and confidential on 0808 802 0202.
