Amy, Chloe and Rob’s story

March 15, 2023

Amy was only 21 when her mum Sarah was diagnosed with young onset frontotemporal dementia, aged 47. Amy, now 26, shares how she, her younger sister Chloe, and their dad Rob cared for her mum.

Amy: Mum was a bubbly and outgoing person. She was a primary school teaching assistant and everyone loved her.

I first started to notice something was wrong with Mum when we were on holiday in the Dominican Republic. She wanted jelly for dinner and kept checking on us through the night. When we got home, she would go to the shopping centre four times a day, but wouldn’t come back with anything.

Rob: A friend suggested that it could be dementia, but we didn’t even consider it because Sarah was only 47. But after seeing a GP privately, she was referred for tests and diagnosed with frontotemporal dementia.

Our roles totally reversed

Amy: Mum’s dementia progressed very quickly. She went from being outgoing and independent to fully incontinent and unable to dress herself. She had always been very slim, but she started binge eating, and went from a size 10 to a size 18 – we had to put locks on all the cupboards.

Mum became like a child and our roles totally reversed. My sister and I washed and dressed her every day. It was really tough. I had just started a job as a legal secretary and I was always asking for time off to care for Mum. It was difficult getting through each day.

Chloe: I was only 14 when Mum was diagnosed, and I found it difficult to concentrate in school. Sometimes I would work in a room on my own just so that I could focus a bit more. I also started seeing a counsellor every week so I could talk about how I was feeling, and the school was supportive.

We felt isolated as a family. It was just the three of us looking after Mum, but we made it work.

Rob: It really upset me to see my children caring for their mum and having to shower her and get her dressed. It wasn’t fair and they shouldn’t have had to deal with that at their age. I’m disabled which meant that I couldn’t help with that side of things. It was really challenging.

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.

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.

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