When her mum Irene was diagnosed with dementia, Jo was worried about the impact the illness might have on her daughter Jess, 33 who has learning and physical disabilities. How would Jess understand what was happening to her beloved nan? Would dementia spoil their close relationship? Here Jo explains how they all managed to cope
Mum and Jess were always the best of friends. When Jess was born, she needed a major heart operation at 12 days old and we were warned she probably wouldn’t survive. She did of course, but from that moment on Mum was a huge support. If Jess was ever ill, Mum would drop everything and jump on a train to be with us – and she was still doing that when she was in her seventies!
But it wasn’t only practical support she gave. Jess and Mum genuinely understood each other, they enjoyed each other’s company. When Mum came to stay, they’d both go off to line dancing classes together, with Jess sporting a red Stetson! When Jess stayed with Mum they’d go out on bus trips together singing Gene Kelly and Frank Sinatra songs.
Mum was fiercely independent, still living in her own home at the age of 92. But there were signs all was not well. When we visited, she was often asleep in the living room (luckily, I had a spare key) and we’d have to wake her up. The house was getting dirty and her memory was definitely going…After quite a struggle, we persuaded her to have a Lifeline alarm, the same sort that Jess has, but she wasn’t happy about it and refused to wear it. It wasn’t long before we had to start considering the possibility of a care home.
My brother David and his family were fantastic and took on most of mum’s care. ‘You have Jess to look after,’ David told me, which was true but it didn’t stop me feeling guilty. I visited as often as I could, but I was still very conscious that I wasn’t there as much as the others. Like most mums (especially ones with disabled children) I’ve learnt to live with guilt.
Aged 93, Mum was moved into a care home where she was finally diagnosed with dementia. At first, Jess took it in her stride, she has a very caring nature and loves elderly people so she coped well with the early stages. She doesn’t have a great memory herself so she and Mum could chat away quite happily and repeat themselves without anyone minding!
But it was difficult to see the Mum I knew slipping away and our relationship changing for ever. Mum, Jess and I used to love watching Strictly Come Dancing and we’d spend ages discussing the show the next day too. But when Mum went into the care home she stopped watching TV. She simply refused. It might sound silly, but I found that very sad.
It was funny to see how contrary Mum became too; Mum always had a thing about her weight and followed a strict diet which included only one egg per week…in the care home she ate scrambled eggs for breakfast every day! She always used to say she hated Abba… but was happy to dress up in a sequins and dance to their greatest hits when the care home held an Abba night! The care home didn’t bother Jess at all. She’d chat to all the other residents, help the carers giving out tea and generally became very popular with everyone, her caring nature simply shone through.
But as Mum’s dementia progressed a few unsettling things began to happen that Jess couldn’t understand. Once, Mum became really nasty towards me when I handed her the wrong glasses by mistake. Jess was horrified. Then Mum started being rude to her carers, especially if they were a little overweight, and Jess got so upset. Hardest of all though was when Mum was in hospital and made a racist comment about a nurse. Jess’s face filled with horror. To be honest, so did mine because my lovely Mum was the least racist person I’ve ever known.
Dementia is hard enough for anyone to cope with, but for a person with learning difficulties it’s even harder. Jess and I talked it through many times and I tried to explain it. ‘Your nan’s brain has stopped working properly,’ I said. ‘The bits that aren’t working properly are the bits that are making her be so horrid.’ ‘Why don’t you shout back when she’s horrid to you?’ Jess asked. ‘Because there’s no point…your nan is still there, she’s just finding it hard to come out.’
Gradually, she came to accept it. As for Mum, Jess was the only person she always recognised, it was as if she was making an extra special effort to remember her, for as long as she could…
Mum died in March at the grand age of 97. I felt so lost. I still haven’t cried properly, though I suspect that might happen soon because Jess and I have written a book together She’s Still My Nan to help children of all ages understand more about dementia and disability. When the book comes out next month I have a feeling I might finally have a good cry.
Mum’s dementia has taught me so much about myself. I’ve learnt to be very patient and I’ve learnt that people with dementia are all different, just like people with disabilities. I’ve also learnt that we need to do so much more to help them. And I know Jess agrees.
She’s Still My Nan by Jo Allmond and Jess Hiles is released on July 22. SilverWood Books LTD £9.95