Chantal cares for her son Harry around the clock. He is 22 and has profound learning and physical disabilities. At a very young age, he was diagnosed with a rare liver condition. A late diagnosis left him with brain damage, epilepsy, delayed development and many complex health problems and disabilities. Harry has also become a wheelchair user.
Chantal has cared for Harry all his life and now that he is a young adult, continues to support Harry at home to live as independently as he possibly can. Chantal says:
“We have some support with lifting during the day but other than that I have zero support. I’m currently waiting for a temporary hoist. We live in rural Suffolk and there really is nothing in the way of services here. There is no respite.”
When Harry turned 18, his health and care plan stopped and existing support was withdrawn. Things like his hydrotherapy and other physiotherapy which have really helped him with his mobility have all stopped. Local care and other support groups and activities nearby have closed in recent years due to a lack of funding.
Chantal gave up her gallery and restaurant businesses to care for Harry and their low income has also had a major impact on them and limited what they can access. When she does get any free time, Chantal likes to spend time making art.
After 22 years of caring, Chantal’s own physical and mental health has deteriorated. The stress, the strain, the financial pressures, sleep deprivation and physical demands of lifting Harry now he is an adult are taking their toll.
Now 66, she has had knee and hip replacements. She and Harry are, she says, always self-isolating. Chantal says she can’t take time to see a doctor and can’t go anywhere that might expose Harry to anything as he is immuno-compromised:
“The constant worry is very difficult. He is frequently unwell and as he gets older, any infections, which he picks up easily, are getting worse.”
Thank you to Chantal and Carers UK for sharing this story.