Real stories

Mum has dementia and recognises my face but doesn't know my name

My Mum was diagnosed with Alzheimer's Disease in her fifties. The signs were there for a few years prior. Her memory was foggy, her personality was changing.

I married my best friend when I was 25 and I remember her being distant, anxious and edgy the entire day. This is now one of the main things I remember about my wedding, as though it's been tarnished by dementia.

She was fragile and vulnerable and I was sad but also angry.

Although her memory issues started off trivial, they soon escalated to the point where she lost her car, locked herself out, accidentally stole from Tesco (and was held by security) and would buy tens of the same item she didn't need within just a week.

I have two wonderful sisters, and we rely on each other so much. We've had to. Mum lived alone and our Dad lives in the states. It was just the three of us, trying to come to terms with this terrifying future that was so uncertain.

Was it going to be like it was in the films? Was she just going to stop knowing who I was one day? Would she wander off to find her childhood house, believing she was still a child? Would she become violent?

It's nothing like you see in movies or on TV. Nothing.

It's a gradual burn, a 'death in slow motion' with really, really low moments and surprisingly positive ones.

Even now, as she sits in a care home, she still recognises my face when I walk in, yet doesn't know my name and can't hold a basic conversation.

Just recently I looked her in the eyes and I said 'I'm your baby' and she said, with attitude in her voice 'I know!' - It was the Mum I remember, annoyed that her little daughter was being so obvious and condescending.

I've lived for these moments for years. When she rolls her eyes at me, tells me to stop being silly and gets in a huff. It's the Mum who raised me.

I also live for the moments she scoops me up in her arms and gives me 'Mummy hugs' because they truly are the best. I always feel so safe from harm, so loved.

For almost two years I was her carer. A time in my life that was both positively magical and horrifyingly scary.

I kept her safe, made sure to risk assess her home every time I left her alone inside. I cooked for her and made sure she had no access to the oven or hob as it was too dangerous. We went walking but I also grabbed a hold of her to guide her the right way. I changed her clothes, took care of her toilet needs, showered her and always stopped myself from crying even though my heart was aching every minute of the day.

Sometimes she'd be mad at me for choosing the wrong pair of jeans and other times she'd stare into my eyes and say, 'thank you so much for what you've done' and in those moments I would stop breathing, because all of the pain, tears, stress and sleepless nights felt worth it.

My Mum raised three girls on her own. She's my superhero. She taught me how to love and how to be a compassionate person. She encouraged my creativity, sense of humour and unique qualities. She gave me two incredible big sisters who I look up to every single day.

Her unwavering example of love brought the three of us closer over time. Now we're all in our 30's, we understand each other more and have patience with one another.

We remind each other to look after ourselves and have the best life possible, because so many of our years have been spent caring, worrying and trying to come to terms with Mum's disease and our loss.

Get support and advice

If you are looking for information, support or advice about dementia you can talk to one of our helpful advisers on our Dementia Connect support line.

You can also join our online community Dementia Talking Point where you can discuss your experiences with other people affected by dementia.