(L) Margaret’s biggest fear was being diagnosed with dementia, after her own mother had it (Picture: Supplied) Having watched dementia take her own mother’s life, Margaret Gibson was terrified of developing the disease herself. But when, after a weekend away in 2013, she couldn’t remember unpacking her bag, it dawned on her that she might suffer the same fate. ‘She rang me up in a panic, saying she couldn’t find her bag. I lived 10 minutes away so I went around and found it in the wardrobe,’ Margaret’s daughter Carolyn Bieda tells Metro. ‘Mum realised that she must have unpacked it, but she couldn’t remember doing so. For her, it was a moment of horror, because her mother Prudence had died of Alzheimer’s, and her biggest fear was getting it too. I could see the recognition on her face.’ From that point, Carolyn, 61, realised she would have to protect Margaret from the realities of the condition. She spoke to the GP and took her mum along under the guise of the appointment being ‘a general health check’. Margaret passed the memory test she was given, but Carolyn could foresee what lay ahead. ‘There were other things. Losing her phone. Two lost false teeth which I found in a shoe,’ Carolyn, from Wiltshire, remembers. ‘Mum was very much in denial. It was her way of coping.’ Over the months, Margaret’s memory declined and a brain scan in 2015 confirmed Alzheimer’s disease, the most common form of dementia. ‘We left the meeting with the specialist and my mum said: “I haven’t got Alzheimer’s. How on earth does she know? She doesn’t even know me.” She never really acknowledged the disease.’ Carolyn and her brother Andrew supported their mother – who had been widowed in the nineties – as she went through the devastating process of losing her health, memory, and independence. There were calls to say she’d left all four hobs burning with no food cooking, or that she was outside late at night with bags packed, waiting to be picked up for imagined trips. Carolyn (R) realised she would have to protect Margaret from the realities of the condition. (Picture: Supplied) But Margaret had pleaded with Carolyn not to be put into a home, so she did all she could to keep her mum in her flat in an over-55’s development. ‘I used to have to duct tape everything down. I had a diary and I stuck it to her kitchen table, because it was the only way she wouldn’t move it,’ she remembers. ‘I would write in it every day what was happening, and then would tear a page out so that she had some idea what she was doing. I had to tape all the controls in the flat because I’d get so many calls saying the heating and hot water doesn’t work after she’d fiddled with them and forgotten.’ Eventually, while a friend took Margaret out, Carolyn had a lock fitted on the cupboard containing the controls. ‘We had taped all the sockets because she was unplugging the TV and the monitor for her trip alarm. She lost the alarm for months and we ordered a new one. Eventually I found it tucked inside a pillow case in the spare bedroom. You would never know what was happening next,’ she adds. Carolyn knew social interaction was important to keep Margaret well, so she paid someone to take her out every Friday, letting her mum believe she was going for tea and cake with a friend. These tiny deceits helped Margaret cope with her changing world, but the hardest truth to conceal was the reality of Carolyn’s own illness, after she was diagnosed with breast cancer in 2017, which Margaret had also suffered from. ‘It was really tough, because I had two lots of surgery, chemotherapy, radiotherapy, and she didn’t really know. We told her initially and she just said, “Oh, didn’t I have that?”’ recalls Carolyn. ‘I don’t actually know whether I wanted to tell her that she’d had it too. She told me once: “Oh, you haven’t got any hair”. But she could never understand. It was really tough. Caroyln’s sons were close to their grandmother (Picture: Supplied) ’In a way, there’s no point with Alzheimer’s, because they can’t understand it. It’s cruel to tell them. But you want your mum when you’re going through something like. So that was really difficult to manage.’ Carolyn endured gruelling treatment while worrying about how she would look after her mum and her then-teenage sons, Tom and Ed. The following year, she completed her treatment, and husband Kevin took her for a much-needed break at a spa hotel in Cornwall. While there, they received a call to say Margaret had fallen and was in hospital with a broken hip. The experience accelerated her Alzheimer’s to the point where Margaret needed 24-hour care. ‘That was horrific. It wasn’t a nice experience looking around care homes. One of them had a room that was like a prison cell,’ Carolyn remembers. ‘Eventually we settled on one that was really nice, brand new.’ It was expensive and a 45-minute drive away, but worth it to know Margaret would be safe and comfortable. ‘I couldn’t face moving her in. Andrew had to do it. But when she arrived, she said, “This looks like a nice hotel.” Which was brilliant.’ They decorated her room with pictures and installed Margaret’s furniture. Visiting, Carolyn brought a laminated image of Prudence in the café where she’d worked, asking Margaret to describe what was happening in the picture and watched her eyes light up at the memory. Margaret eventually needed 24-hour care (Picture: Supplied) The worry about falls and late-night calls was replaced by new challenges: witnessing the distress of other residents and dealing with Margaret’s sadness and confusion when Carolyn had to leave. ‘It broke my heart,’ she says. ‘I couldn’t work out how on earth I could leave her without putting her through this, even though the carers told me that half an hour later she didn’t even remember that I had been there.’ She found the answer on a forum on the Alzheimer’s Society website, where another carer suggested she deploy ‘love lies’. So Carolyn began leaving her coat, handbag, and keys behind when visiting and when it was time to go, she would tell her mum she was just popping to the loo and would be back shortly. She would then quietly leave while carers distracted Margaret. ‘Alzheimer’s is so cruel. You are constantly losing them,’ Carolyn explains. ‘On a good day, I would try to make her laugh. I would pretend to take her out for lunch, and the care home would set us a table outside the dining room. I would pour her apple juice and tell her it was a glass of wine, and she used to believe me, laughing, “Oh don’t give me any more, because I’ll get drunk”. Carolyn says she began leaving belongings behind when visiting her mum so she didn’t realise she had gone home (Picture: Supplied) ‘You have to find ways to make them happy momentarily.’ When the pandemic hit in 2020, Carolyn received a call from the home to say that 18 residents had contracted Covid. ‘The manager said that nobody was suffering – everybody was just sleeping all the time. Mum had a cough for about a morning, then they couldn’t get her to eat or drink, and she just slept. In the end she just slipped away,’ Caroline remembers tearfully. Margaret died at the age of 84 – five years after her diagnosis. The funeral was private but beautiful, just Carolyn and Andrew outside with a celebrant and a pot of tea. Despite the heartbreak, she is grateful she could be there for her mum, and found joy in small moments. Carolyn and her brother Andrew were grateful for the support they received from the Alzheimer’s Society (Picture: Supplied) For as long as she could until she fell ill, Carolyn took Margaret to the Alzheimer’s Society Memory Café, where attendees discussed topics, took part in crafts, and sang songs. It was a welcome respite for carers and brought joy to patients. ‘There were some magic moments. I remember one of the song sheets read “etc etc etc”, and they all sang “etc etc etc” and we all just fell about laughing,’ she says with a smile. Since losing her mum, Carolyn has raised £3,000 for the charity and is raising more money this year and encourages others to do the same. ‘We need to have the same emphasis on dementia research that we do with cancer, because it affects so many people,’ she says. ‘We desperately need more research into this cruel condition, as it currently has no cure.’