Today, as National Carers’ Week draws to a close, we are honouring the carers of those affected by brain tumours – our unsung heroes.
Having a brain tumour is all too often life-changing and life-limiting. A complex organ, the brain controls thoughts and decisions, memories and emotions, motor function including balance and coordination, perception of various sensations including pain, speech and language functions, the regulation of organ function and automatic behaviour such as breathing, heart rate, sleep and temperature control. Having a tumour in the brain can therefore have a massive impact on the patient, so much more far-reaching than a patient with a tumour anywhere else in the body.
Early on in a brain tumour patient’s journey, often before diagnosis, families may have to contend with personality changes, coping with seizures, balance and movement issues and caring for their loved one’s mental health, let alone addressing the mental health of those caring for them.
Because brain tumours affect a high proportion of young people, a child’s diagnosis can mean that parents have to deal with caring for their sick child and all their hospital appointments, while juggling other family responsibilities and work. A parent’s diagnosis often means they have to relinquish their driving licence meaning that a loved one becomes not only a carer, but also the taxi driver for the brain tumour patient and the children.
End-of-life care brings about even more extreme challenges as the progression of the tumour slowly but surely shuts down every one of the patient’s functions, leading to a time when the patient is bed-bound and totally unable to communicate.
We know that carers often find themselves exhausted, overwhelmed and anguished, with little or no support. Our Member Charity brainstrust offers coaching and personalised support to brain tumour patients and their carers, as well as providing downloads and printed resources. Its Brain Tumour Hub allows users to enter a postcode to filter for more local support. Our website gives information about brain tumour support groups across the UK. We also help to raise awareness through sharing stories of brain tumour patients on our website and in the media.
If you would like to share your story please send an email to [email protected]