Keeping memories alive & dealing with dementia
Updated: Feb 17, 2021
My mum is suffering from dementia.
A knowledge that terrifies me and keeps me awake at night, that troubles my mind at odd moments of the day and into the evening, as I sit in Morocco while my mum and dad are on the other side of the world in Australia.
This is another exceedingly ugly face of the toll that is Covid, the uncertainty and the separation - the inability to be there for loved ones. I hate with a passion that I am held hopeless halfway across the globe, unable to be there for not only my mum, but for my family as a whole as this incomprehensible disease takes its toll.
It is part and parcel of making a life overseas, of that we are all well aware. But the distance did not use to seem so far.
The difference is now I worry that by the time the world opens up again for me to be able to visit, my mum will be lost to me – forever.
But it does not stop there. I fear for so many things in relation to this. That my Dad who at 80 is now a constant care-giver will be unable to cope for much longer. That his health will disintegrate with the constant 24/7 lookout that has become his role in his twilight years. Years when he should be relaxing, enjoying little walks and afternoon naps at his seaside home – instead of watching stoves, explaining simple stories ad nauseum, or checking that mum has not wandered out in the middle of the night scared and confused when she can no longer sleep.
I hate that this has become his life – and hers.
I have read far and wide on dementia, with not much consolation truth be told. I have suggested and researched a range of things – robots, dogs, memory games - in the hope that it may help, but it seems there is not so much I, or anyone for that matter - not even science - can do. I certainly cannot stop it. No-one, it appears, can. So, I am doing the only thing I know how – I am writing it out. One Hundred Memories, for a Lifetime of Love.
Initially I wanted it to be a year’s worth of memories, but as mum’s mind is declining faster than expected I needed to reign it in.
The book is for my mum, if it ever gets published, I have no idea. Of course, I would love it if it was to help others going through this, but that remains to be seen. All I know how to do at the moment is write down the past - those treasured times, precious reminders of the way our life was, and send them on. I email them to my mum and dad as I form them, in the ambitious aspiration that they will jog mum’s memory. Or, at the very least, that they will soothe mine.
The execution is simple - numbers one to hundred, each allocated with a time or date that relates to and conjures up our shared past. And bittersweet it has been. For in writing down those memories it has reminded me that it is not always from a place of fear that my family comes from in dealing with this insidious thing. One of our constants is our considerably strange sense of humour that has always carried us through any hardship, and in writing our story down it has made me laugh and cry in equal measure.
There are sections like this in my musings.
The date when it appeared mum seemed to forget who my sister was standing beside me on a video call from Austria at the time. And in that one heart-breaking moment, when I saw the confusion flit across her face that I suddenly realised, mum might also be just as terrified. If not more so. With dementia, do people know they are forgetting? Is that a part of it? I hoped with all my heart not, for that would be the cruellest irony of all if this already gut-wrenching, soul-destroying bastard of a disease came with another kick – the panic-stricken knowledge that you were forgetting and all the associated fear, nervousness and worry that came with that insight.
But there are also memories of fun times – holidays, family Christmas’, bush Uncles and massive bonfires (unfortunately inside), sweltering summer nights where we all trooped out to the pool to float around on Lilos watching a small TV carried outside (why do summer’s past always seem much hotter?), days in New Guinea when dad wore short pale blue Safari suits and long socks to work. To be fair, it was the 70s, but that is hilarious in itself.
And there are even reminiscences of the crazy moments this disease is delivering, when we laugh instead of crying. Like the time Mum told us during a phone call what a fabulous day she had had – having lunch with dad, watching TV and talking to her friend who had popped over that day. She couldn’t quite remember what she had watched on TV, and couldn’t remember the friend, but she had had a lovely time whiling away the afternoon with them she assured us.
When we double-checked with Dad who the friend was, he told us the only person that had been over that day was the air-conditioning repair man.
All of these memories are written down, and emailed to dad to read to her during their afternoons – to be printed out when we have them all together, and kept with her.
They are our shared history, her memories, her family, her life and I want her to have it near. To know who we are somehow, even when we become strangers to her in the shadows of her mind. But most of all I want my mum to know she is ours. Every day.
So, number 100 is reserved for this:
100 million times a day. This is how many times I wish I could tell you how much we love you, how amazing you have been as a mother, how wonderful you have been as a friend, how beautiful it is to share a life with you. All these things we need to tell you now, so you will hold them in your heart forever. You are loved little Kaysy, more than you can ever imagine.
I don’t know if it will help my mum, I don’t know if it will help anyone else as a form of therapy that can be employed by others dealing with this hateful, spiteful spiral of a disease, but I do know that it has helped me.