I’m Losing My Mum to Early On-set Alzheimer’s Disease
Sunday evening was my favourite time of the week to aimlessly follow my Mum around as she tidied the house, put away the washing and changed the bed sheets.
I’d ramble on about my dramatic life as a tween, talk about boys, question her about the meaning of life and try to figure out the secret ingredient to her perfect Bolognese.
She was my best friend, and as a shy, awkward and lonely child, she comforted me, encouraged my creativity and always made me laugh.
Little did I know that further down the line the only thing that would follow her would be an illness so cruel, it would leave her incapable of showing me comfort or encouragement.
The Diagnosis That Changed Everything
Mum was diagnosed with Alzheimer’s Disease in her fifties. After what felt like years of investigation, tests, appointments, and false diagnosis, she was finally given a scary verdict that stuck.
Mum had Alzheimer’s and I had no idea just how hard life would soon become.
Alzheimer’s Disease is a type of Dementia. It’s a degenerative disease that currently affects 850,000 people in the UK.
One person every three minutes is diagnosed.
Mum has early onset Alzheimer’s Disease, which affects just 40,000 people in the UK.
It’s extremely rare to find anyone who can relate to losing their parents to Dementia at such a young age. It’s been a lonely road for her, and for us as a family.
There’re no words to describe the emotional impact that watching your Mum deteriorate in front of you has. If you’ve been through it, you’ll understand it.
I remember when I foolishly believed that her bizarre buying habits were as bad as it got. I remember when her driving license was taken from her. I remember when she forgot how to use the oven, and how she slowly forgot how to make herself a drink of water. I remember when she’d phone thirty times a day or forget that I was there only ten minutes before.
I remember it all, yet she doesn’t, and she never will.
The Negative and Positive Effects of Being a Carer
I quit my job at just 31 to take care of my Mum. I did it for almost two years before she could no longer stay at home and in many ways, it broke me.
72% of carers who responded to a recent survey confessed they’d suffered ill mental health since taking on a caring role. Staggeringly, 61% said they suffer physical ill health due to it. Statistics I can relate to on so many levels.
3 million people juggle work commitments with caring duties, with 1 in 5 giving up work entirely as they’re forced to care for a loved one.
I had to get to know the ‘new’ her, warts and all. I assumed the role as Mum. I helped her change, wash, use the toilet, get out of the house, eat and take her medication.
On the bright side, caring gave me superhuman strength when she needed it and helped me to realise how powerful love, patience, understanding, and empathy truly is.
In many ways, I was fortunate to have so much quality time with her while she could still communicate, laugh at my rubbish jokes and hang out in the Marks and Spencer cafe.
Making the transition from carer to the ‘normal’ working world has been difficult. I feel like I’m missing an arm, but knowing that she’s safe and cared for has given us all such a great sense of relief.
How Alzheimer’s Society Make a Real Difference in the Local Community
We’d be lost without support from the Alzheimer’s Society. She became a regular at Ty Hapus in Barry, a local respite centre that became an integral part of her life.
Ty Hapus was originally set up by Justine Pickering who felt inspired to open a day centre for those with early onset Alzheimer’s Disease when her Mum was sadly diagnosed in her fifties.
The centre is a blessing as it’s primarily aimed towards those under the age of 65. I loved taking her there every week, and I’d always leave with a warm heart knowing she’d be cared for by dedicated staff who would keep her entertained and happy for a few hours.
As her condition worsened, it became extremely difficult for me to take my Mum out to places that would be suitable for her needs. We required a non-claustrophobic, quiet area with understanding and informed staff.
As the Dementia Friends scheme is now on the rise, it will hopefully become easier for other carers to identify suitable places.
Marks and Spencer became our hot spot as it was especially encouraging to learn of their commitment to Dementia.
My sisters and I also attend a monthly support group for sons and daughters who have parents with early onset Dementia.
Making connections with people who are close in age and going through similar experiences is invaluable. This group is also run by Alzheimer’s Society within the local community.
Mum has made great friends through the Alzheimer’s Society, namely a support worker who would take her out for lunch, Barry Island, Singing for the Brain sessions or to the park for a walk. She became a really important part of Mum’s life and a savior to the family.
Donate Today and Help Others Like My Mum
Alzheimer’s Society is committed to spending £150 million on cutting-edge research, so donations are imperative in the fight against Alzheimer’s Disease and other types of Dementia.
There are currently 5 times fewer researches choosing to work within the Dementia sector, in comparison to Cancer.
Alzheimer’s Society has played a pivotal role in my Mum’s everyday life, and without them, her life during the past few years would not have been as fulfilled. In fact, local services support 100,000 people and 89p of every £1 donated to Alzheimer’s Society goes directly towards improving the lives of people like my Mum.
