Real stories

Doing Memory Walk with my children to talk about their grandma with dementia

Jane’s mother, Beryl, has always been kind and caring towards others. But after noticing changes in her mother’s behaviour back in 2015, Jane knew there was something more to it than age.

Here, Jane shares her experience of finding the right care for her mother and encourages people to take part in Memory Walk to help raise awareness.​

My mum worked as a model in the 1960s. She began by winning Miss Fairfield, then went on to win Miss Yorkshire! Aged 19, she met and married a family doctor.

Once married, Mum spent her life raising children and helping out with her husband’s medical practice. She stayed dedicated to doing good: raising three children, working in hospitals, children’s homes, care homes and charities.

Mum’s first symptoms of dementia

My mother has always been very funny, creative and imaginative, and more comfortable playing with children in a fantasy world than with reality. So when things started to go downhill in 2015, at first we thought it was just her age.

But over time, there were a few incidents that made us begin to suspect that things were not quite right. Mum began telling us that whatever she was watching on TV had been on before. She’d try and tell us what would happen at the end, get it wrong, but still be adamant she was right. She started to get cross about these delusions.

At one point, for weeks on end, Mum kept insisting that my husband had stolen her spectacles and sold them on eBay. (I was amazed she knew what eBay was!)

She was also obsessed with a supermarket check-out assistant. She would tell me this woman had accused her of having an affair with her husband. Perhaps this was something she used to deal with more as a model! But it certainly wasn’t happening to her now, confused and physically impaired, aged 74.

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Jane's mum, Beryl, in her modelling days.

A worsening condition

Things got worse when Mum fell, and her hip popped out. She had a general anaesthetic, which took weeks to recover – and afterwards, her memory was worse. Mum had to stay in hospital for several months, because she was very confused and lived alone and there was nowhere for her to stay permanently with the specific facilities she needed. She needed somewhere with a bed and toilet downstairs.

Eventually, she improved and she went home, with arranged meals and daily respite care. But this went very badly. Mum was crying and lonely, and didn’t know where she was. She didn’t know who the respite carers were and was convinced they were stealing her things and trying to get into her house as strangers. She liked the man who brought her meals, though!

Struggling at home

My brother and I visited my mother at home regularly, but it was very hard. Mum was forgetting to eat, and to take her array of pills, some once, some twice and some three times a day. We kept waiting for another diagnosis from social services, but they were so slow. (I know it was due to under-funding; they tried their very best.)

In the end, my kids helped me pack up her things and move her to a care home five minutes from my house. Initially, Mum was terrified and sick with nerves. She struggled to understand what we were doing, despite many, many repeated conversations.

When we arrived, she cried and screamed because she thought we were putting her into the mental hospital. When she finally understood, she calmed down and said she’d give it a go. She’s been very happy since!

Mum’s social care experience

I couldn’t fault the care home. The staff are wonderful, patient and kind people and work for practically nothing, I have nothing but admiration and respect for all of them.

The care home staff all know Mum as Miss Yorkshire. She has a picture of herself from her modelling days next to her Marilyn Monroe calendar!

Mum does get confused, but feels safe. My daughters and I can pop in and visit several times a week. I don't know what will happen next. My parents divorced and Mum never bought a house. She has little money left (her work over the past 25 years was mostly voluntary) and this care home is not a dementia care home. But she looks after the others and makes them laugh and join in with things so I'm trying not to worry about it. For now.

Some days are good, some are bad. She’s getting more angry, and a bit resentful of some people in the care home. Most recently she's refusing to have a bath and swears very aggressively at me when I get firm about it. Then as soon as the care assistants come in, she’s sweetness and light!

She often feels faint, and complains of back-ache – but she gets confused about her symptoms. She’s put on a lot of weight very quickly as she never used to eat much at all. Her model days left her quite body-conscious. I just see it getting much worse. It’s very upsetting – I go to the care home with flowers, feeling positive, but mostly I leave feeling guilty and miserable and sad and cruel.

Living with dementia

When I think about the future, I feel sad. Alzheimer’s is such a terrible disease. But there are misconceptions about people with dementia, too. They’re not mad – they can be quite well for much of the time.

If they are kept in the present, playing or creating, they can really enjoy themselves. I think children are the best company for people with dementia. They don’t worry or judge. They just sit, living in the present, and joke and play.

My children go to visit after school and paint her nails and get her to try on different clothes. They take her magazines and they go through photo albums of her when she was a model.

My Memory Walk

I’m taking on Memory Walk on 22 September at Temple Newsam House in Leeds. It’s a place that means a lot to me – Mum and I used to go there sometimes when I was a child.

I’m hoping to do the 6km walk with my children. It’ll be a good time to talk about their grandma and how things have changed, for better and for worse, since her days here. I love to show my girls where I grew up and the beauty of Yorkshire. With a bit of luck, we’ll raise money for Alzheimer’s Society and I might learn more about the condition. I may even get some ideas for the future with Mum.

I’m grateful these Memory Walks are organised to raise awareness of this sad, ruthless disease. I hope people from all over the UK are inspired to take part to raise as much money as possible.

If Mum was here walking with me, no doubt she’d be doing nothing but chatting and meeting people and trying to put their fears at ease. I can hear her saying, ‘Don’t worry about me, I’m fine – I was a model, you know!’ Mum is just that kind of no-nonsense, warm-hearted Yorkshirewoman.

Even if I have bought her 14 mascaras over the past two months, as she keeps thinking they’re empty and throwing them away…