My Mum passed away in November 2019. She died ‘peacefully’ in a nursing home after a lingering illness that left her unable to speak, eat or drink. Her swallowing reflex was slowly obliterated. How frustrating and terrifying for her. I can hardly bear to think about it.
A cruel, debilitating, dehumanising, completely heartless, and unrelenting disorder called Alzheimer’s. Let’s call it Big Al for short.
(To make life simpler and without prejudice, I have referred to Big Al as a male, but you are at liberty to change the gender accordingly)
Big Al distresses not only the person chosen to be the recipient of his attention, Big Al affects everyone in his path. Big Al impacts everyone who knows and loves the ill-fated person he has terrorised, everyone suffers in his or her own unique and often painfully heart-breaking way.
Here is a definition I found online:
Alzheimer's disease is a progressive disorder that causes brain cells to waste away (degenerate) and die. Alzheimer's disease is the most common cause of dementia — a continuous decline in thinking, behavioral and social skills that disrupt a person's ability to function independently.
Quite clinical and straightforward, wouldn’t you say? The reality is far from clinical and straightforward.
I sound angry because I am angry. I just don’t know who or what to be angry with.
That said, because of big Al, I got to see a different side of my mum, a side I had never seen or experienced before.
Before big Al really took Mum in his vice-like embrace, I was surprised and delighted to hear so many memories pour forth from my mum. Preferring to be on her feet as she told me story after story about her childhood and life as a young adult, often acting out a scenario with humour and skill to rival the best actors on any stage.
She was delighted to see me when I went to visit her, demonstrably so. As time passed, she became dependent on me for so many things I could never have imagined. Mum had always been strong and independent. I told her for the first time in my life that I loved her. And she told me she loved me too. Would that have happened without Big Al? who knows? Saying I love you between parents and children of a certain generation in my part of the world is rare. Mostly, there is no need. You just know it.
I missed my mum increasingly as big Al took charge. She was physically right there in front of me, I could hug her, she would take my hand and kiss it, but her very essence was disappearing, dissolving in front of me, all the parts which made up my Mum were still there but were out of order and sequence swirling around in front of my eyes.
Just as I felt close to Mum, felt that I utterly understood what made her tick, the ticking stopped. Silence is not always golden; it can be gut-wrenching and tear your heart out.
So, big Al, you did your worst. Mum was not the first and alas she will not be the last. You have work to do, don’t you? I truly hope and pray that society takes you very seriously, and that we will pull together, collect money, and find a way to beat you. We are getting there with your cousin, Big C.
Authoring my book, King Street to King’s Road, was something I had always wanted to do, but never more so than when big Al got Mum in his clutches and squeezed the very being out of her. My memories are out there, in black and white, for all to see, but most importantly, for my daughters.
If Big Al seduces me in the future, my carers may read my book, flick through it and see that I had a meaningful life, and a family to be proud of.
Mum was fortunate to be looked after by an amazing team of people who work in Dundonald Nursing Home. Without exception, they cared for my mum way beyond the constraints of a job description, way beyond what was required to take care of her basic needs. They loved her and wanted to make her blossom in what we all knew was the concluding chapter of her life, from the maintenance guys, office staff, the coffee shop, and kitchen staff, hairdresser, and of course the excellent nursing and occupational therapy teams. All of them knew her by name. They all knew my dad by name. Dundonald House staff became like a second family, and for that, I will be eternally grateful.
#dementia, #alzheimers, #nursinghome, #familyvalues, #love #fundraising, #alzeimersayrshire, #alzeimersfamily, #alzheimerssuffering
