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"My mum doesn't remember who I am"

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Helen Bester, 40, from Cambridge, shares what it’s like to have a mother suffering from Alzheimer’s disease

"It was Mother’s Day 2004 when I finally plucked up the courage to ask Dad about Mum’s increasing forgetfulness. Over the past few years, Mum had reached the stage where she’d stopped driving, wouldn’t go to church, stopped cooking and would forget who wanted which cup of tea. So when she left the room I asked Dad quietly, ‘Does Mum have Alzheimer’s?’ He looked at me and simply said, ‘Yes’.

Mum was 75, but what I didn’t know, and didn’t find out until much later, was that she’d been diagnosed with Alzheimer’s five years before that. Mum had an aunt who’d had the disease and when she saw the signs in herself she went to the doctor right away. However, she’s an incredibly private person and had asked Dad not to tell us. But when I finally confronted him he couldn’t lie.

My relationship with Mum was always good. I’m the youngest of five, and we grew up in the countryside, a big happy family. Mum was a role model to me, hardworking, independent and funny. I could tell her anything.

As this previously ultra-capable woman had begun to change, my brothers, sisters and I would joke about her ‘getting old’. Looking back though, I think we all feared that something was really wrong. Mum had always been a fantastic baker but at Christmas in 2003, Dad said that she’d tried three times to make a Christmas cake, couldn’t do it and never did it again. A few months later, at my brother’s 40th birthday party, my mum, who was sitting next to me, looked over at her daughter-in-law of 12 years and asked me quietly, ‘Who is that?’ I felt a flash of shock, then spent a moment trying to rationalise it. Perhaps she can’t see her properly? But I knew that Mum really didn’t recognise her. I replied to Mum with a slight laugh, trying to make light of it, that it was Sharon. She laughed a little and said, ‘Of course’. I felt such a wave of protection towards Mum at that moment, I just wanted to shield her from any embarrassment.

Soon afterwards Dad confirmed my suspicions, but had no idea what lay ahead. It was only when I mentioned it to a friend, who is a nurse, and she said, ‘Oh that’s terrible,’ that I started to acknowledge that it was going to be very, very hard.

Things started to get really bad a year later. My parents moved from Norfolk to the village next to me because Mum was deteriorating, and Dad needed our help to care for her. I soon realised Mum was much worse than I’d thought. I was staying over one night when she tried to make a cup of tea on the hob and started a small fire. She had trouble sleeping, and I would often open my eyes in bed to see her standing over me. I’d jump out of my skin, but in the dark she didn’t know who I was. She also started to wander around, leaving the house, looking for her old home. We soon realised that if you have Alzheimer’s, the longer you can live with familiarity, the better.

To have the roles of mother and daughter switch was incredibly difficult. This was my fiercely intelligent mum, and all I could do was watch her slip away. The hardest thing was not being able to help her. At first I read and Googled everything. But there was nothing I could do to stop the progress of the disease. She was so scared of what was happening to her and for her children, left to deal with the situation. But she would never discuss her fears, not once. She was being strong for us.

Watching my dad deal with it has been heartbreaking. They grew up together as neighbours and have known each other for 70 years and been married for 56. He remembers her as a young woman, he knows all her hopes and dreams. Now she doesn’t even know who he is. Before Mum got ill I’d seen him cry once… in the past few years I’ve lost count.

The worst moment had to be the first time Mum didn’t recognise me. We were at a funeral of a family friend in July 2005 and Mum was in unfamiliar surroundings. We were sitting in a pew waiting for it to start when she looked at me and said, ‘When is Helen getting here?’ I bit back the tears and quickly replied, ‘I am Helen.’ She said, ‘Please don’t tell anybody.’ The initial sadness was quickly followed by acceptance. There was an inevitability that this day would come, and suddenly it was here.

Last summer Mum had a stroke and it was clear that living with Dad was becoming impossible. Being a 24-hour carer was going to kill him and she didn’t know where she was any more. But she seems content at the home we chose for her, even though we are all filled with guilt. We kept Dad busy and made sure he wasn’t on his own but the woman he’s shared a bed with for 56 years is gone and is now living with strangers.

Having a parent with Alzheimer’s is like grieving for the living. Last week we were going through some of her things, it was as if she’d died. We looked at photos she’d kept, the old exercise books filled with her notes of how much we weighed when we were born, when we first walked.

This Mother’s Day I had to remind her that her mother had died 19 years ago. She was so upset and thought no one had told her. Alzheimer’s is cruel; it’s stripped her of her abilities, her memories. What is there left to take?

When I look at her now I see glimpses of how Mum used to be, especially when she laughs. But the person who brought me up, my wonderful Mum, has gone.”

For information and support contact Alzheimer’s Research Trust at alzheimers-research.org.uk

She had trouble sleeping, and I would often open my eyes in bed to see her standing over me

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