For Dementia Awareness Week we are sharing the stories of people affected by the disease.
Dementia can happen to anyone. It can strip you of your memory, cause irreversible changes to your personality and damage relationships that have lasted a lifetime – and there is currently no cure.
For these reasons, it can also have a profound effect on the people closest to you.
This Dementia Awareness Week (May 17-23) we are teaming up with Alzheimer’s Research UK’s dementia blog to tell the stories of five people who have lived with or cared for relatives with the disease.
Amanda Franks shares the story of her mum’s diagnosis
“When my mum was diagnosed with Alzheimer’s disease age 58 I didn’t know how to feel. Early onset Alzheimer’s seems somehow crueller as it changes the plans and future of everyone involved.
“Mum and Dad were planning their retirement. They loved to travel and had a caravan. They had an apartment in Tenerife and hoped to stay there for months at a time.
“Mum was my son’s after school care as well as his favourite person, she also had five other grandchildren; how do we explain it to the children?”
“I think the hardest thing was the early stages.”
“Mum knew her future was mapped for her now but it was ‘the elephant in the room’. When should I stop allowing her to pick up my son from school without offending and upsetting her?
“The answer to that came when we realised she could no longer read the time.
“My son finished school at 3.15pm. One day she walked to the school at 2pm to collect him. The gates were locked so she came home and just went about her day.
“When the school rang me to say he hadn’t been collected, mum said: ‘I went to the school, it was shut so assumed they had finished early’ – no questioning where my son was!
“Mum and Dad muddled through with the help of extended family all living within close proximity. Very dependent on my dad, mum would follow him around and any time away from him was a moment too long for her!
“Medication held her for a few years but in September 2013 things began to progress. The constant requests to go home when she was, indeed, at home.
“Hallucinating people in the house, believing news stories of flooding were of immediate danger – things were getting out of hand.
“Mum has always been a quiet passive person. When dad finally admitted to mum’s violence the reality couldn’t be ignored and mum was admitted to care in January 2014.
“I can only speak from my point of view but the devastation this disease has caused my family is extreme.
“Seeing my mum wandering the corridors of a care home amongst elderly people with odd slippers breaks my heart.”
“Every day she slips further away from us.”
After looking into the statistics of Alzheimer’s disease, Amanda was shocked that research was ‘so underfunded’ – despite it costing the economy so much.
She decided, along with her family, to raise £10,000 for Alzheimer’s Research UK by throwing a concert, The Gig to Remember.
Despite her success, she admits it is bittersweet: “Throughout this whole journey, the saddest part has been not being able to share it with my mum.
“I visit, I show her our picture in the newspaper and tell her about The Gig to Remember but it’s difficult to know how much she takes in. I hope she’s proud.”
Read Amanda’s story on dementiablog.org.