Dementia, Mum and Me

Dementia is cruel. It takes away more than just brain cells, it takes away the person. It turned my kind, funny, gentle and loving mother into an obstinate woman who doesn’t even know who I am most of the time. I’ve lost my best friend, the person I could tell anything to. I miss going shopping together, popping round for a cup of tea – I miss having a conversation with my Mum.

I’m in my thirties and Mum was only 66 when she got officially diagnosed with dementia. She had been suffering with symptoms for years so I really lost her from about 63 onwards. It was too young, too soon. I know it sounds silly, I’m a married woman with a career and busy life, but I still need my Mum and I miss our relationship terribly.

She’s 71 now and I know that if she didn’t have dementia she’s still be colouring her hair blonde, wearing fashionable clothes and looking like she was in her mid-fifties. Instead she’s in a care home with a hair-cut that my Dad gave her because she wouldn’t let the hairdresser do it. She wears odd combinations of clothes, refuses to wash, brush her teeth – everything is a battle. She used to work in a clothes shop and loved fashion, it’s heart-breaking to see her now in odd shoes, clothes that don’t match, greasy hair.

You’re probably thinking; why don’t you just wash her hair for her? Colour it? Help her to dress? But, unless you’ve experienced advanced dementia, you have no idea how strong and wilful the person becomes. They don’t understand that you are trying to help them; they just think they are under attack and fight back with surprising strength. Everything becomes a battle, even putting on her shoes to take her for a walk.

People think dementia is just about losing your memory. But people like my Mum lose everything. Her memory was ok in the beginning; it was the lack of comprehension and language skills I noticed early on. Words were invented because she couldn’t think of the correct ones and she would get angry because we didn’t understand her. She couldn’t express herself properly and became withdrawn, not wanting to socialise. She said the telly and washing machine had broken but actually she just didn’t understand how to use them. Tablets she’d been on for years were suddenly ‘poisonous’ and she refused to take them.

Now she is in a care home and we can take some comfort from the fact that her dementia is so advanced, she has no awareness of where she is or that she is ill. Unlike some who constantly roam the corridors trying to escape, Mum is very settled and has a degree of happiness in her own world. It’s a world that no one else understands or can share with her, but to her it makes sense. We even see glimpses of the old Pam every now and then, like when we take a ball and play catch – she runs off with it laughing and making mischief just to make us smile.

In those moments, I get her back - the fun, outgoing person who wanted to make everyone happy. It’s all about adjusting expectations; it’s the best way to cope. Conversations and days out are impossible, but cuddles and laughter can still happen if you try. I’m grateful for that and for the wonderful person she was - something that will always live on in my memories if not in her own.