The effects of a brain tumour diagnosis are devastating, sending shockwaves through the families of those affected. The impact can be life-changing for all.
Today, during Carers Week, 9th-15th June, we honour the family and friends of brain tumour patients who are propelled – unprepared and ill-equipped – into the role of an unpaid carer.
Becoming the carer of someone living with a brain tumour, tackling physical and logistical challenges, alongside complex health requirements and medical red tape – all while dealing with the emotional fallout of watching a loved one in turmoil – can be an intensely stressful experience. The ramifications on all aspects of life – from relationships and health to finances and work – can be significant.
As the parent of a brain tumour patient, becoming a carer can mean juggling the anguish of having a sick child alongside a busy timetable of hospital appointments, work commitments, and other family responsibilities.
When an elderly parent is diagnosed, it may also mean having to abruptly change your living situation, to offer round-the-clock care.
While, for the partner of a brain tumour patient, becoming a carer can bring up even more complexities – when, suddenly, your relationship feels off balance and the responsibilities of the entire household now fall on one set of shoulders.
It's an experience that Julie Ward, 50, lived through while caring for her husband Michael, before his death from a glioblastoma on 7th September 2024.
“Nothing prepares you for suddenly becoming a full-time carer,” said Julie. “At first, Michael could manage on his own, but when things started to decline – his memory, his mobility, his speech – everything changed so fast. I couldn’t leave the house at all, not even to go to the shops, because I was constantly terrified he might have a seizure while I was gone. I had a baby monitor set up so I could watch him from downstairs and try to have some peace of mind.
“We had no warning that he would become bedbound. It happened almost overnight and we weren’t prepared. I had to order everything myself, from incontinence products to medical supplies, rushing to get things delivered online just to keep up. We didn’t even have a hospital bed at home at first and our only bathroom was upstairs. It was exhausting and incredibly stressful, just trying to make the house safe and manageable for him,” added Julie, who took on our 10k Steps a Day in February challenge to help our fight to find a cure for this devastating disease.
“The hospice provided a carer for three hours a week, which was meant to give me time to rest, but I spent most of it running errands, doing shopping and picking up medication. I didn’t want to leave Michael’s side, but I had no choice. Everything fell on me.”
But support is there. Our Member Charity, brainstrust, exists to help brain tumour patients and their families feel less afraid, less alone and more in control. Its Brain Tumour Hub allows users to enter a postcode to filter for more local support, with the aim of helping them turn over every stone in the search for the best brain tumour support services.
“Towards the end, Michael couldn’t talk anymore,” Julie said, “but I could see it in his eyes that he still recognised me. That’s why I was there every single day. It was the hardest thing I’ve ever done, but I wouldn’t have done it any other way.”
Click here for more information about brain tumour support services across the UK.