This Carers Week, Gemma Hampton tells us how asking for help has been a lifeline since she became a carer following her husband’s brain tumour diagnosis…
Andy and I had dreams. To expand our family, to travel, to go on adventures, to grow old together.
But our dreams have been stolen by an incurable brain tumour and I’m now a full-time carer for my husband, as well as having two young children to raise, three dogs to walk and a home to run on my own.
Andy’s glioblastoma (GBM) diagnosis, in May 2023, came at the end of a long year of bizarre behaviour, with my dependable, devoted partner becoming distant and apathetic. Once such a hands-on dad to our daughter Isabelle, now four, he fell asleep at the birth of our son, Henley, in May 2022. As things hit rock bottom, Andy, now 54, lost his job and became so paranoid, he accused me of having an affair.
Nothing can prepare you for receiving the news that your husband is going to die. He underwent debulking surgery, and six months of radiotherapy and chemotherapy followed as we prayed for more time together.
But our life as we knew it was already over. The tumour and the treatment had changed my husband forever, leaving him with terrible short term memory problems, fatigue, no peripheral vision and balance issues.
I had no choice but to give up my job as a personal banker for NatWest and now, Andy relies on me for everything. His symptoms are almost like that of someone suffering dementia. He can’t remember things and the more confused he gets, the more agitated he becomes. It’s like his mind is frozen in time before his diagnosis. Henley is two now, and though Andy knows who he is, if there’s a baby in the same room or in a photo, he’ll often think the baby is his son. I no longer correct him because it makes him so upset.
Every day, I have to write down what is happening hour-by-hour in Andy’s diary to help alleviate his anxiety. Even then, he’ll want to go through the list again and again. We’ve been through it 10 times already today and it’s only 10am! And if anything changes, if I suddenly need to pop to the shops after picking Isabelle up from preschool, that’s a huge deal for Andy and he’ll call me in a panic.
Andy no longer has any concept of time – day and night means nothing to him. So, I might find him in the kitchen having cereal at 3am like it’s completely normal. And though you have to laugh and try to find the funny in these moments, his nighttime antics often wake the children too.
Physically, Andy is very slow and because he’s lost his peripheral vision, it means he falls over the kids’ toys. It’s a constant juggling act between letting the kids be kids and making sure I run around tidying up after them to prevent Andy tripping up.
I know Isabelle and Henley are his world but I can see how difficult it is for Andy to be a father now. When they’re loud and bouncing around, it makes him fatigued and grouchy.
We’ve stopped trying to go out anywhere new as Andy gets lost or he might pick up something in a shop and walk out without paying because his brain can’t manage these simple processes anymore. At least in our village, everyone knows Andy and what he’s like now.
Being a carer isn’t something you train for. It’s thrown upon you, usually in the worst circumstances, it’s 24/7 and it’s hard.
For a long time, I tried to hide the fact I wasn’t coping. We are lucky to have wonderful family and friends who have given us lots of support. But there are so many demands on me all of the time, so many people relying upon me, that I even stopped having a glass of wine or a bar of chocolate because I need to be alive and healthy for everyone else.
The best thing I did was reach out to my health visitor who rallied a whole support system with the preschool, GP, Andy’s oncology team, local hospice, and social services. They have arranged an assistant to take Andy on some days out, Isabelle is having pre-bereavement counselling, I’ve joined a carer support group, and Homestart is supervising a weekly trip to the park with Andy and the kids. It’s just one hour but it allows Andy to feel a little independence and gives me time to enjoy a cup of tea in a moment of calm.
Being a carer can feel incredibly lonely, but you don’t have to do it alone. Saying “I’m not coping” has brought me much-needed support. I’ve can’t stress this enough to other carers. Sometimes it’s about how loud you shout.
If you are caring for someone with a brain tumour diagnosis, our sister charity brainstrust can offer advice and support. Please visit: https://brainstrust.org.uk/
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