Last week, I shared a post on Facebook about how dementia lives within our family – the empathy and supportive comments I have received have touched, surprised and overwhelmed me.
By sharing my perspective on dementia I have connected with friends and family on a new level, we have more in common than I realised. Dementia is a growing issue that gets hidden by shame and worry – for me it was the shame that people might pity me and the worry that people would think less of my Mum.
My Mum has dementia – there I’ve said it – this is a topic close to my heart, along with many other families who are affected and deal with the upsetting things this disease brings into their lives on a daily basis.
It’s tough when your loved one asks; who are you? and what are you doing in my house? When your Mum says; have you met Jim? And Jim is your Dad.
It’s not easy when they forget who Jim is and wake up in the middle of the night worried about sleeping next to the stranger in their bed.
When I think about it too much it’s sad and upsetting and I wish I could do more to support Mum, Dad and my sister, who does an amazing job helping out with the day to day running of the household.
There are good days too. We go for walks, Mum has always been fit and healthy, a local tennis champion she played until well into her 40’s, she now goes for a walk twice a day. She’s creative and still goes to art class every week – sometimes she even remembers to take her kitty money for the tea and biscuits! The photo is me and Mum getting creative together a couple of years ago.
When I take time to just be there and listen, Mum shares some lovely stories from her past of playing tennis and helping her students.
Anyone who knows my Mum knows she was the best cook – her shortbread was legendary! Making and sharing food was how she demonstrated her love for us. On my last visit she refused to eat all of her lunchtime sandwich saving her last quarter for me because she wanted me to eat something and look after myself! That’s Mum, she’s the kindest person I know and that hasn’t changed.
I realised I didn’t know very much about dementia and when I started looking into it this is what I discovered.
Dementia – the facts
- There are 850,000 people with dementia in the UK, it will be over 1 million by 2025. This will soar to 2 million by 2051
- 225,000 people will develop dementia this year, that’s one every three minutes
- Sadly many of us already know someone who has the disease, one in six of us will get a form of Alzheimer’s – and many of us will be affected by becoming a carer for members of our family
- Dementia is one of the main causes of disability later in life, ahead of cancer, cardiovascular disease and stroke. As a country we spend much less on dementia than on these other conditions
- There is no cure for Alzheimer’s disease or any other type of dementia. Delaying the onset of dementia by five years would halve the number of deaths from the condition, saving 30,000 lives a year
- Dementia research is desperately underfunded. For every person living with dementia, the annual cost to the UK economy is over £30,000 and yet only £90 is spent on dementia research each year
- Alzheimer’s Society is committed to spending at least £150 million over the next decade on dementia research to improve care for people today and find a cure for tomorrow.
If you’re wondering what prompted me to share my post, well my husband, David was doing Ride London – 100 miles of cycling around Surrey and London to raise money for Alzheimer’s UK.
When I told my Dad about the race he tried to give us way too much money ‘to help them find a cure for dementia so other people won’t get what’s happening to Mum.’ Who wouldn’t want to do that if you’ve seen the impact this has on someone you love?
By sharing what felt like my dirty little dementia secret it’s made me realise that many families are in the same position, feeling conflicted, hurt and worried and not talking about this disease.
Talking about dementia has helped me to begin to make sense of what is happening to my mum and made me feel more connected to those around me who are also touched by dementia in their lives.
Carol Conway CPCC
Coach, eight circles