‘I live with dementia’ – Hannah’s story

Our whole family is living with dementia. There is never a moment where it’s not on my mind.

Hannah’s husband Neil was diagnosed with young onset dementia at the age of 51. Hannah shares the impact of her husband’s diagnosis on the whole family, including their two young daughters, aged 12 and 13.

This isn’t the life I envisaged for my 40s. It’s not the plan that Neil and I had for our lives together. I didn’t want to give up work. I didn’t want to give up holidays. Instead, every morning, I have to wash, dress and feed Neil. Whenever I want to leave the house, I have to think of how Neil will cope – I can’t even take my daughters out for the day at the weekend.

I miss doing the crossword with Neil in the morning over a coffee. I miss being able to go out in the evening without having to worry. I miss my husband.

Hannah

Our whole family is living with dementia. If Neil behaves differently with our daughters, I have to explain that it’s not Daddy – it’s Daddy’s dementia. I don’t want the girls to have to live with it. But we do and it’s frustrating and exhausting. There is never a moment where it’s not on my mind.

Hannah, Neil, and their daughters, Bessie and Milly

“I realise how much the girls are missing out on”

Neil was a very hands-on dad. He loved the kids’ birthday parties and he always dressed up – he was a cowboy on an inflatable horse once! I find it so upsetting, because I realise how much the girls are missing out on. I know the old Neil would hate how he’s treating the girls now – that’s why I know it’s the dementia, and not him.

The partnership between me and Neil and our marriage dynamic went very quickly and suddenly when he started to develop symptoms of dementia. By the time we got the diagnosis, I couldn’t cope anymore.

I now feel like I’ve got two children and a toddler. The girls are young carers and they help their dad with dressing, cutting up his food, and giving him medication if I’m not around.

“My Admiral Nurse is on my side”

My dementia specialist Admiral Nurse, Lizzie, has helped me in so many different ways. But the main support is just knowing that she is there for me.

Lizzie reassures me that I’m not being paranoid or unreasonable. She holds a mirror up to me to show me that my experiences are real. She gives insight into how Neil is behaving and why, and gives me ideas and strategies to help.

Hannah and her Admiral Nurse Lizzie

I feel like Lizzie is on my side. She is in my corner. She isn’t here just to support Neil, but to support me. She helps me deal with dementia in a way that nobody else has. She’s also been amazing in helping our two girls understand the diagnosis and has helped them to meet other children going through the same thing.

How can we support you

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It is vital to look after yourself and to try and take part in activities you enjoy. If you are not well and do not have enough support or time to recharge your batteries, you will not be able to continue.