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Lizzie stands in a crowded city area

Let’s talk about guilt – Lizzie’s experience

Lizzie talks about the guilt she felt caring from a distance for her dad, Rob, who was diagnosed with frontotemporal dementia at age 58

Lizzie’s dad, Rob, was diagnosed with frontotemporal dementia at age 58. He died in May, 2024.

When Dad started showing signs of dementia in his 50s, I felt like I was living in two places at once. Physically, I was in London, starting my career, but my mind was always anchored back home. No matter where I was or what I was doing, there was this underlying pull – the feeling that I should be there, that I wasn’t doing enough.

Lizzie's dad holds her with his right armEach trip home made that guilt heavier. I’d see how much he was changing – the way he struggled to keep up with conversations, how tasks that were once second nature became confusing. Each goodbye left me feeling awful. I’d go back to London, throw myself into work, and then feel guilty for not being there more.

It’s hard to explain the constant push and pull. The pressure to be present for someone you love while also trying to build your own future. I still don’t know if I got the balance right. But I do know that guilt is an easy trap to fall into and the reality is, there was no perfect balance. Looking back, I was doing my best in an impossible situation. And I’m trying to accept that being torn between two places didn’t mean I cared any less – it just meant I loved him, and I was struggling to find a way for my future and his present to coexist.

 

Chief Admiral Nurse and CEO of Dementia UK Hilda Hayo

"Lizzie highlights the difficulty when a family member is diagnosed with dementia under 65yrs of age and you are just embarking on your life as a young adult. Frequently when I have worked young people whose family has been impacted by young onset dementia, they have grappled with putting their own life on hold to be there for the family."

Hilda Hayo, Dementia UK’s Chief Admiral Nurse and Chief Executive Officer, reflects on Lizzie’s experience.

Hilda Hayo, Dementia UK’s Chief Admiral Nurse and Chief Executive Officer, reflects on Lizzie’s experience.

“Lizzie highlights the difficulty when a family member is diagnosed with dementia under 65yrs of age and you are just embarking on your life as a young adult. Frequently when I have worked young people whose family has been impacted by young onset dementia, they have grappled with putting their own life on hold to be there for the family.

“When working with young people I usually ask “What would your parent expect of you?” and the answer is usually, “They would want me to live my life.” My role then as a nurse would be to listen, support them to do this and help them to manage their feelings of guilt in carrying on with their life and plans.

“From experience, the young person needs someone independent of the family to talk these feelings through with and a specialist dementia nurse (Admiral Nurse). The nurse can listen and help the person to come to terms with their feelings and ways they can engage with their parent when they are able to be present.”