Real stories

"Dementia isn’t just for ‘old people’" - Katrina and her mum's story

Life with mum before dementia

I’ve never written a story, but this isn’t a story. It's real life and I’m living it.

It was always mum and me. From a young age she provided me with a good life, sometimes working two or three jobs a time to make sure I got everything I needed. I have great childhood memories going into Leeds every Saturday, treating me, taking me to Wendy's, and getting the bus home; to growing up through my teenage years and not wanting to be seen with her in the pub as she would embarrass me by dancing on tables; to my adult years, supporting me through marriage, birth and general adulting. 

My mum was always my queen and my best friend, she always will be. 

Getting a dementia diagnosis

I thought my mum would be a huge part in my current life. However when my mum turned 57, just a year ago, she was ill and become rapidly unwell - never in a million years did I think the role of parent and child would be reversed almost overnight. But here we are. 

My mum got diagnosed with advanced dementia at 57, who knew you could get so ill from it at that age? Not me nor most people around me. She doesn't have dementia - she's too young. Why is this happening to us? 

My mum should be living life, seeing her grandchildren grow up and working and socialising, but instead she’s just a shadow of the independent woman who brought me up.

What can prepare you for this? How do I tell my children their nana is so unwell? How do I live without her? 

Making difficult decisions for a parent with dementia

As a daughter and only child, I had to make some incredibly difficult, quick decisions without processing and coming to terms with what was happening. I had to make sure my mum would be safe, well looked after and respected. 

My mum was a carer for over 25 years so I had a lot to live up to by choosing the correct home for my mum to live what life she has left. 

You deal with feelings, emotions, resentment and guilt you never knew was in your body and the anticipatory grief is something that is not talked about or did I even know existed, I guess it’s a level of ignorance towards these kinds of diseases. You don’t know until you need to know! 

Dementia affects younger people

If I can do anything for my mum, children and the future generation it is to help raise awareness to this terrible terminal disease that is affecting younger people, they shouldn’t be left forgotten about or be ignored when they approach doctors with their symptoms as they're 'too young'. 

There needs more awareness and younger families need to be able to navigate this illness without feeling like they shouldn’t be talking about it.

Whilst my mum is clearly not the woman I deeply know and love dearly, we still enjoy our visits together, whether that's watching TV, walking and talking or playing loud music and having a silly dance, I leave and she smiles - for which I am grateful.

Dementia isn’t just for ‘old people’ - it isn’t age biased!