Alzheimer’s Society is transforming the landscape of dementia forever. Until the day we find a cure, we will create a society where those affected by dementia are supported and accepted, able to live in their community without fear or prejudice.
Some of you may or may not know that both our parents are now living with Alzheimers which has crept up gradually on both of them over the last few years. After a particular episode on 2nd January 2018 we deemed it necessary that I move into their home and care for them 24/7. This has enabled them to continue living together in their home, safe and happy in familiar surroundings, it has also taken away the worry of us waiting for that 'call in the night'.
Alzheimers has changed our family's world.
Our mum and dad, the people who have been our loving, caring guiding lights since we were kids now desperately need our help.
Some of you I'm sure have had or are experiencing your own personal journey with Dementia, but for those of you who haven't, here's a quick, hopefully easy to understand, low-down on Dementia and Alzheimers... our mission is to spread awareness about the realities of, but most importantly, the possibilities of living positively with Dementia...
There is no set path for Dementia, the overall umbrella term which encompasses Alzheimers, a particular type of Dementia. Everyone can be affected by it differently. Mum struggles to find words, Dek (our dad) doesn't. It can start early in life, 'early on-set Dementia' or later in life - it doesn't mind when.
However, the thing that is consistent is that areas of the brain start messing up and change how you are able to process things. It's not 'just old age' it is a disease and sadly at the moment, there is no cure. The fully functioning person slowly starts to lose the ability to do what they've always taken for granted... remembering words, memories and people, driving a car, operating a CD player, tv or radio, making a cup of tea never mind a meal. Toilet routines, washing, dressing, using a telephone, reading, writing... the list goes on. Their world shrinks dramatically. It's an incredibly frightening, frustrating and isolating condition for them and absolutely heart wrenching to watch.
On a happy note, old family jokes are still laughed at, Dek still plays the ukulele, they love trips out to the countryside, going to the theatre, Singing For the Brain, Bun Clubs with wonderful friends, listening to music, going to concerts and mum still loves dancing around the living room whenever she can. We have a laugh.
It's not been an easy journey and it's only going to get worse. It is part of life, we all succumb to something, our two got Alzheimers. Jem and I stand strong and united in ensuring that our parents are safe, happy and secure. One of the hardest things that we have had to do is swap roles, we are now the parents and they are now the children.
I feel very lucky that I am able to care for my parents, as things stand at the moment it's doable with the odd respite break here and there. I have had to give up my work; creating, making and teaching; leave my partner John home alone. Leave my home space and get used to a restricted social life. However, it has given me a greater understanding of what it is like to live with Alzheimers/dementia and I treasure the happy moments spent with the parents.
At the beginning of my creative journey back in 2004, I was swamped with sad thoughts of childlessness, failed IVF, the thought of never becoming a mother, having a family, the importance of memories, the sharing of stories, fading memories, family histories... these thoughts influenced my work... the busts, cast from life covered in fading photographs.. the idea that memories fade, the fact that we are all products of our own history, the stories of the people who have gone before us, the people we never met but somehow made us the people we are today. How ironic that my parents have become my children and I am now witnessing their thoughts and memories disappear.
Ok, I've gone on. Thanks for reading this far!
So, this here Memory Walk at Temple Newsham, Leeds on Saturday 22nd September... Jem and I can walk this walk no problem. What this walk is about is raising awareness about living as positively as you can with Alzheimers/Dementia.
Big hugs to any of you out there who are going through your own personal family struggles, whatever they might be. It's not easy, but hopefully you can take small comfort in the fact that you are not alone.
If you would like to get in touch with me personally about our parent's journey with Alzheimers, please do. I am more than happy to offer any advice I can from what we have learnt over the last few years. There are also some really good people out there who can help... Carer's Leeds, Adult Social Care, The Memory Clinic and last but not least, The Alzheimers Society.
One last thing... If you do come across someone with Dementia or for that matter, any other learning, mental or physical disability, please don't treat them differently to anyone else but perhaps be a little bit more patient, kind, listen more, be understanding, be reassuring, don't be afraid of what you don't know and give them a smile. They may be lonely and scared. A smile and a hand to hold goes a long way. It could happen to any of us. How would you wish to be treated?
The other last, last thing... I know everyone's always raising money for this, that and the other... money is tight and we all have our own important charities to support but if all of my FaceBook Friends etc could cough up just a pound then we'd more than reach our target of £300. The money is going to the Alzheimers Society who do work supporting people affected by Alzheimers as well as important research into hopefully finding a cure. Please give whatever you can.
Thank you. Big hugs
With love, Jo & Jem xx
PS. Thanks for reading right to the end! Have a virtual Gold Star! : )