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Leanne's story: 'Mum still recognises my face, yet doesn't know my name.'

Leanne's mum Hilary was diagnosed with young-onset dementia. Here, she shares her family's story and her feelings throughout their journey, from the initial signs that something was wrong to becoming a carer for her mum.

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.

Leanne's story

A recent picture of Leanne and her Mum, Hilary.

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.

Leanne Hen party

Leanne at her Hen party with her Mum and sisters in 2011.

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 National Dementia Helpline.

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

National Dementia Helpline
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9 comments

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That is a very moving story. It must have been so hard for you all the the worry immeasurable. I hope you are all doing well.

Leanne your experiences & feelings brought back memories of me and my sister caring for our Mum. They were the most difficult times of my life emotionally, mentally & physically (working full time also) but it was the most special and spiritual time too. What a gift to care for our Mum who cared for us. It annoyed me when Itold friends I couldn't meet up as I wanted to put my Mum to bed (which as you said involves a host of things, feeding, toileting, washing, chatting to her & holding her hand while she drifted off). They'd say We know you want to do your duty but you need a night out. It's not a duty I'd tell them. It's a privilege. This is my Mum. The word duty hurt. You are doing an AMAZING job with your sisters, thank God you have each other. One of the most precious things we get to do, care for our loved ones. Your Mum knows she is loved by you all even if she cant remember your names or has times of blankness. You don't need a good working brain to feel love. You feel it in your heart and soul. How blessed she is to have you all. Be kind to yourself you are doing great. Janine x

Well done Leanne for everything you have done for your mum.

Leanne how lovely to see such beautiful photos of you and your Mum. Your story too is wonderful and so very true and just as things were when I used to see you and Mum. You, Leanne and your sisters are so full of love for Mum and Mum so full of love and proud of you girls. When you walked in the room mum would say 'Here's my baby !' When you give Mum a hug next please give an extra one from me. Your mum is such a lovely gentle lady. My love to you all from Alyson xx

Hi leanne, what a lovely story to share with people, I know what your going through as my mum to has dementia, I have two sisters like yourself who one of us goes to see her her every day, like your mum leanne doesn't know our names but does recognise us, I dread the day when she doesn't know who we are, it is heart breaking, people don't know how we really feel inside, you and your sisters are doing an amazing job, mum's bring their children into the world now it's our turn to give something back, take care Leanne. Xx

You made me cry with your heartfelt words and I have true admiration for your spirit and how you have coped in such challenging times. Life can be cruel yet beautiful things happen at the most unexpected moments, wishing you and your family lots of love, Sarah x

i can relate to everything you say,its the most terrible illness ever,breaks you seeing someone you love so much going through this,more needs to be done,nobody realises how bad this illness is,nobody seems to care,its the illness i dread the most,big hugs xxxx

My mother is 91 and has stage 4 Alzheimers. She has lived on her own for 29 years s since my dad died. Mother is not yet in need of a Nursing Home, but she is nearing the stage where she needs Home Help. Due to her stubborn and fiercely independent nature, she has already tried and refused to benefit from this service, which we cancelled after several months. I struggle to manage her memory loss, blatant denial of her limitations and insistence that she can manage everyday tasks. Mother spends her day reading the paper and wandering round her bungalow, looking for inane tasks to perform. Mother is deeply anti- social and has an attention span of 5 minutes. She does not contribute to conversations because she cannot hear them properly and has forgotten the content before even trying to reply.
I hope that if ,or when my mother has to be admitted to a Home, I can find some compassion and tolerance which, at present, is sadly lacking and decreases each time I see her.

My heart goes out to you,my mum is in a care home now,she still recognizes me but breaks my heart to see the person she has become,she was the life and soul but now she’s just a shell.
This disease is so heartbreaking.
There’s a lot of us going through this I only wish we could distinguish this disease.

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