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Rachel’s story: "Dementia can happen to anyone"

Rachel shares how caring for her mum, who has young onset dementia, has impacted her life.

Rachel and mum Brenda

Rachel and mum Brenda

I am 30 years old, living at home with my mum and caring for her full-time. I miss the freedom of being able to do what I like. I met my partner last year but because of my caring responsibilities, we’re not able to get a house together. I feel trapped.

Mum is dependent on me and there’s now a role reversal. It feels like she’s my daughter and going through her teenage years. Mum experiences a lot of mood swings and is not good with change. Sometimes she will swear at me and slam doors.

I feel like I’m constantly grieving for Mum’s old self whilst trying to get to know and love the new her.

It really gets to me, but I’ve learnt it’s dementia and not my mum. She’s such a sweet, kind, caring, and quiet person. I still get glimpses of her when a song comes on the radio and she lights up – we just dance in the living room. There are times when she will randomly hug me and say, “I love you very much” or, “I’m very proud of you.” I really appreciate those small moments.

Brenda with her sister Pat

Brenda with her sister Pat

My Admiral Nurse, Rachel, is an inspiration

In all of this, I have learnt that I must make time for myself. I’ve struggled with anxiety and depression since I was 18 years old and I really value the importance of self-care in my life.

It was our dementia specialist Admiral Nurse, Rachel, who encouraged me to start focusing on myself again. She talked to me about the honest reality of living with dementia and reminded me that I need something to fall back on when Mum eventually passes away.

I found Rachel so inspiring that I enrolled in an Adult Nursing degree at the University of Huddersfield and am now a first-year student. Rachel has been so encouraging and supportive and has made me see that it is possible to have my own life too.

Dementia can happen to anyone

Before Mum got her diagnosis, I didn’t realise you could get dementia so young. You usually hear of people’s grandparents having dementia, but I don’t know anyone my age with a parent with the diagnosis.

I sometimes get embarrassed when I am out and about with my mum because to an outsider, it looks like I am being rude to her when I am speaking to her. Her illness isn’t visible. I think more awareness needs to be raised of young onset dementia and what a young carer looks like. Dementia can happen to anyone.