It was hard coming to terms with the changes in the family dynamics. All the things Sarah and I had spoken about and dreamt about – settling down, retiring, going on holiday, watching the kids grow up – we lost all of that. I felt robbed of our future.
Amy and Chloe with their parents and dog
Every day was a new challenge
Amy: Mum went into a care home for respite for 10 days. One day, Dad came upstairs bawling his eyes out with the phone in his hand. I took the phone and the carer told me that Mum had passed away of a sudden brain haemorrhage, aged 51. It was so unexpected. Our whole lives had changed to look after Mum – we all thought, “What do we do now?”
Caring for Mum was overwhelming at the time. Every day was a new challenge, but Dementia UK’s website and emails were a great source of support and gave us a lot of information on frontotemporal dementia and how to look after ourselves as carers.
We decided to raise money for Dementia UK at Mum’s funeral. I want to make it easier for young families living with dementia. It’s so important for the whole family to have support and that’s what dementia specialist Admiral Nurses offer. It can be hard to reach out for help when you are in the thick of it, but there is support out there.