My name is Pat, I live with my husband, and grown-up son and I have been his carer for 43 years.
My son was diagnosed with a malignant brain tumour in 1979. He had an operation to remove the tumour, followed by radiation to the brain and spine.
The Unseen Daily Challenges of a Carer
There are so many challenges to being a carer, some that are seen but mostly unseen. There is so much stress caring for a loved one, seeing them struggle on a daily basis, the treatments and medication and the worry for the future.
Being a Carer can be a Lifelong Role
My caring role began when my son was two years old. Yes, I know that caring for children is a hard job, but imagine caring for a child who cannot walk, does not speak, even though he was perfectly capable of both before his brain tumour.
I did not know at the time whether he would walk or talk again and the possibility of learning difficulties, because of the injury to the brain, was hard to come to terms with. This was even more challenging as I had a five-month baby to look after as well.
The Lack of Provision for Adults with Acquired Brain Injury
Thankfully my son did walk and talk again. The walking took one year and the speech came back fairly quickly. Special school and foundation college course followed. But after the age of 19 what provision is there?
My son went to day centres, some were really unsuitable until I found Headway Essex. My son started some 13 years ago after having a stroke in 2005. He is happy at Headway Essex thanks to the wonderful staff and volunteers who understand brain injury.
Facing New Challenges as a Carer
The challenges now are different. My son has deteriorated health-wise over the last two years requiring constant help.
I sometimes have the feeling of living my son’s life and not my own. I have to fit everything I need to do around hospital appointments, blood tests, eye tests, GP appointments. In total my son is under five different consultants. The disturbed sleep having to get up 4-5 times a night to see to him. The fact that my age and own health issues are now a problem.
When my son is at the Headway Centre, in Colchester, I get some respite from my caring role. It has been a joy to see my son cope so well with all his problems. He doesn’t complain just gets on with life but the pain I feel for him is constant and makes me sad.
Support from Other Carers
It has been positive for me to attend the Carers groups. I would recommend this to anyone just beginning their journey of living with someone who now has a brain injury. It is so good to meet with people that really understand the problems and frustrations. We all have a different story but have the understanding. Together, we can laugh and cry about our lives. We are not judged or given unwanted advice.
To sum up, Headway is a brilliant Day Centre in Colchester and carers are supported too. My son is happy there and I know he is well cared for, but above all understood.