She kept the appointment a secret, not wanting to worry anyone. So nobody was with mum that day when she finally received her diagnosis.
‘Well, have I got it then?’ she asked the old age psychiatrist, with a typical air of defiance. His reply was similarly blunt; ‘Yes, I’m afraid you have.’
She phoned me later to recount this story, whilst also making sure to add a positive spin. ‘Don’t worry pet, I’ll fight it.’
I had no doubt she would. Mum had always been a fighter and, rightly or wrongly, I knew she’d treat dementia in the same way she’d treated every other challenge life had thrown at her. To her, this was simply another battle that must be won. To me, it was a death sentence.
Mum kept her promise. For seven long years she ‘fought’ dementia, along with a considerable number of doctors, nurses, carers, neighbours, friends and family members (me included). This was her life, she protested, she would live it how she pleased…and mostly, I’m pleased to say, she did.
Finally, after five years of relative independence, mum very reluctantly moved to a care home where she continued her battle. More than once, she dialled 999 telling the police she was being ‘held against her will.’ Although I didn’t dare admit it to the poor care home staff, secretly I felt rather proud that her feisty spirit remained intact.
Mum never did stop fighting, but eventually she suffered a stroke from which she never recovered. On 6 September 2007 she died. Eleven years later, I still miss her every day.
But life has moved on and so, I’m pleased to say, have our attitudes and awareness of dementia. Whilst the medical breakthrough we all long for still hasn’t happened, in my opinion a huge amount has changed since my mum began her dementia journey.
Here’s just a few examples of how far I think we’ve come:
1 – People don’t laugh when you tell them the diagnosis
Just a few short years ago, many people still regarded dementia as ‘going a bit doolally.’ Consequently, they often said things that were – unintentionally – crass and upsetting. For example, when I told them mum’s diagnosis, several people tried to make light of it. Some tried to cheer me up by telling a funny story about someone they knew who’d had it. ‘Oh, my great aunt/neighbour/cousin thought she was Queen Victoria/Marilyn Monroe/Shirley Bassey! It was so funny.’ Fortunately, I don’t think this happens anymore (I hope not anyway) because most people today understand that dementia isn’t a laughing matter.
2 – The world is more dementia-friendly
On trips out with mum, we relied on the kindness of strangers; friendly shop assistants, bank staff, hairdressers, waitresses and bus drivers could all turn a bad day into a good day. The term ‘dementia friendly’ hadn’t been invented. Thankfully most people were patient and understanding, but not all. I remember one particularly officious supermarket manager informing us that mum had been caught shoplifting (she’d walked out without paying for a toilet roll) and even a priest who complained she was calling him too much to check the times of masses. How much easier life would have been if these people had received a bit of training.
3 – There are more ways to stay independent
Mum was fiercely independent. She used to say she was like a ‘caged animal’ if she couldn’t get out of the house every day – and living with dementia was not going to stop her. As a result, we were constantly trying to find ways to ease her confusion and allow her to get on with her life safely. But simple products that could have really helped just didn’t exist. There were no day clocks to reassure her of the day and time, and even the simplest phone we could find was still tricky. I’d have loved one of those photo phones (so would she) and I would have jumped at the chance of owning a GPS tracker; imagine being able to prevent that stomach-churning worry each time mum stepped outside her front door… But this was this was the early noughties, GPS technology sounded like science-fiction – the iPhone hadn’t even been invented!
4 – There are more social groups and activities
Apart from her daily trip to the shops and church, mum relied on her TV for entertainment. Unless she’d been into bingo (and she loathed it with a passion) there were no social groups for her to join. Memory cafes didn’t exist, and creative arts and wellbeing groups were impossible to find… if they existed at all. We’d often look through old photo albums or watch her favourite black and white films on DVD, but reminiscence products weren’t easily available. Shortly after mum died I interviewed Sarah Reed, who had just launched her Many Happy Returns Chatterbox cards: When I saw them I felt quite sad as mum would have loved them…
5 – Anti-psychotic drugs aren’t used nearly as much
This is something I’m particularly thankful for. A few weeks after mum died, I remember reading a newspaper story about an anti-psychotic she had been prescribed that could increase the risk of stroke by up to nine times if taken for more than 12 weeks. Mum had been on it for months before suffering her stroke. That story haunted me for years.
6 – The way we talk about dementia has changed
As our understanding has improved, so has the language we use to describe dementia. Words such as ‘senile’ and terms such as EMI (Elderly Mentally Infirm) are slowly disappearing. Dementia is now, quite rightly, described as a condition people live with, not one they ‘suffer’ from. This doesn’t mean that people with dementia don’t suffer because they do (my mum certainly did). But I suspect most of them would not want to be defined by their suffering when they’ve led rich, valuable and complex lives.
7 – People with dementia now have a voice…
Best of all, people with dementia are speaking out themselves – almost unheard of when mum was alive – and talking about their own, unique experiences of dementia. Wendy Mitchell’s beautifully written recent memoirs, Somebody I Used to Know, gives an unflinching account of life with young onset Alzheimer’s – and shows just how far we’ve come in changing our minds about dementia. ‘I beat dementia by still being organised,’ Wendy explains, using one of those battle metaphors mum was so fond off. Wendy, like my mum, may still be fighting dementia, but she’s living her life on her terms, as are so many others like her. And that, most of all, is surely something to celebrate.
….and so do the people who love them!
From my perspective, one of the hardest parts of mum’s dementia journey was the lack of peer support. In fact, during the entire seven years, I didn’t meet a single person who, like me, had a mum with dementia. Looking back this seems astonishing but that’s just how it was. The Unforgettable Dementia Support Group has been a revelation to me; I’m sure I would have used it every single day if it had existed then. In fact, thanks to this wonderful, compassionate group I’ve finally managed to rid myself of the last remnants of caregiver guilt. Reading other people’s experiences has made me realise I was never alone in the first place. Thanks to them, and their honesty, I can finally accept that I did my best.