Losing a loved one to dementia is undoubtedly one of the most painful things you can go through in life. But when it’s a parent, and means you take on the role of carer, it changes your life in ways most won’t understand.
Here, three people reflect on the early signs of the brutal disease which affected one of their parents, things they missed or dismissed, what they’d do differently and what they’d want other people in the same position to know.
“My mum fell for a scam, then forgot how to make her specialty dishes”
Robert’s mum, Joyce, was diagnosed with Alzheimer’s in her early seventies, 10 years ago, the last six of which she has been living in a care home.
One of the first incidents that rang alarm bells for Robert was his mum falling victim to a suspected scam from someone selling mattresses door-to-door. He was surprised at his mum being taken in so easily by this person’s elaborate backstory, as she had always been such an astute woman. She also started to struggle to make her specialty dishes. “We’d always go for Sunday dinner at my mum’s and on a couple of occasions I got food poisoning because she’d undercooked the chicken. Or she’d swap out ingredients like sultanas for grapes in her famous curry sauce,” Robert recalls.
He describes signs of psychosis his mum started to show in the period leading up to her diagnosis, when unusual behaviour started to creep in – a fixation with a non-existent flea infestation among them. His mum had always been a keen gardener, yet on one visit he recalls her mistaking fertilizer balls for beetle eggs. Then, after spending more time together on a family holiday to Cornwall, symptoms were clearer to see, her mistaking the fridge for the heater for example, among other episodes, that persuaded Robert to contact her GP.
“At this point her cognition was still quite good, she was still ‘mum’ most of the time, she’d just have these odd moments that we’d put down to old age. But when the doctor started asking her a few basic questions I realised something was seriously wrong. My heart sank when she didn’t know her date of birth or the current Prime Minister,” he says.
Robert quickly stepped into the role of a carer, doing his mum’s shopping, cooking her dinner and taking her to appointments. “It was suggested we put lasting power of attorney in place a few months after her diagnosis. It’s really important to do this before it’s too late.”
The family didn’t directly address the diagnosis with Joyce. “We just sort of played along with everything,” Robert says. “But on one particularly bad day, I blurted it out over the phone, ‘Because you’ve got dementia, mum!’ She threatened to kill herself, which was very scary. Maybe it’s something I should have explained properly to her from the get go.”
Things started to take their toll on Robert’s mental health. “I’d suffered with depression previously and was struggling to cope. Mum would ring me every day asking where I was and why I wasn’t there. They don’t realise what they’re saying and are oblivious to the hurt it can cause, it’s just a symptom of the disease.”
“My mum’s brain fog was put down to menopause”
Rosie was in her early thirties when she unexpectedly became a carer for her mum Dawnie, who was diagnosed with Young Onset Alzheimer’s Disease at 58. “I was excited to get on with the next stage in my career, then overnight my life turned upside down,” she says.
“I think we missed some of the really early subtle signs with mum because my parents divorced years ago and mum never found another partner. Looking back now, for a good few years before we realised, mum was becoming much more anxious and overwhelmed at work,” Rosie reflects.
“A family friend told us mum had become a bit forgetful and was repeating herself, but because she had always been a bit scatty, we dismissed it. Now I know mum had been going backwards and forwards to the doctor because she knew something wasn’t right. She had a history of depression and anxiety, so a lot was put down to that. She was also going through the menopause, so things like brain fog were put down to hormones.”
It wasn’t until Rosie managed to have a long stint at home that a few things stuck out straightway. “A lot of the time I spent with mum was around our horse, Mr Bud. We’d had him for 15 years at that point, so looking after him was second nature, but she’d let his flu jabs lapse. Mum could be scatty with other things, but she was always very organised with the horse. I noticed she was doing things like using the wrong tools to pick out his feet. Then one day I took mum, who was a trained chef, out for afternoon tea. She picked up a scone, looked at it, then went to bite it as if it was a cake. She looked really confused and didn’t know what to do with the jam and cream.”
Rosie started to step into the role of carer, attending doctor’s appointments and advocating for her mum to get the support and diagnosis she needed. “Mum wasn’t very assertive so she wasn’t being listened to. It was almost another 18 months until we got a diagnosis. During this time her confidence was completely crushed and she was becoming more overwhelmed.”
It wasn’t until Rosie was clearing out her mum’s house to sell in order to pay care home fees, that she truly began to grasp how much her mum had been struggling. “Going through her paperwork was absolutely heart crushing. She’d been making mistakes at work and her hours had been cut back. She’d even been involved in a couple of car accidents and scrapes, things she’d kept from us. She must have been so frightened and in such inner turmoil.”
A missed opportunity for a diagnosis was particularly frustrating, she recalls. “Mum had had a bleed on one of her eyes and had brain scans in A&E to check for acute injuries like brain tumours. Later, a consultant psychiatrist at a memory clinic told us these scans showed clear shrinkage in her brain, which could have been picked up. Had we got a diagnosis 12 months earlier, it could have given her a better quality of life in that time.
“Mum’s decline was brutal. She was diagnosed in March 2019 and died five years later. Seeing it play out was awful.” Rosie supported her mum to remain living independently at home for as long as possible, then Dawnie moved to a care home for the final two years of her life.
“She got fixated on strange things and forgot how to boil an egg”
Chloe, 22, was just 14 when her mum, Sarah, was diagnosed with young onset frontotemporal dementia, a rare form of the disease – affecting around one in 20 people with dementia – that primarily affects the frontal and temporal lobes of the brain, areas responsible for personality, behaviour, language and speech.
It was on a family holiday to the Dominican Republic that Chloe and her older sister Amy realised something was wrong. “Mum started fixating on strange things, like going to the same buffet each night – instead of different restaurants – to get jelly or ice cream for her dinner, which wasn’t something mum would usually have done,” Chloe says.
More concerning episodes followed after the holiday. “Another time, mum couldn’t remember how to boil an egg. She asked dad four or five times, he’d explain and she’d ask again. On Saturdays, she used to go shopping, but she started going out and coming straight back, almost like she was forgetting what she was going out for.”
Looking back, Chloe says there were probably earlier signs that they didn’t understand or take notice of at the time. “Mum was only 46 when she was diagnosed, it’s the last thing you imagine at that age. Her diagnosis shocked us all.
“Mum’s decline was quite rapid, she passed away when she was 51. I’d just had my 18th birthday. It felt both gradual and fast at times. Some days mum would be fine and other days it was harder. It almost felt like it was overnight that she suddenly wasn’t speaking or Amy had to help her eat.”
Family dynamics naturally changed, too, as Chloe and Amy became young carers in their teens to their mum, alongside their dad Rob. “Sometimes it could be so frustrating. If I could go back in time, I’d probably tell myself to be more patient with mum and the situation.”