My mother has dementia: Alzheimer’s we’re told. She’s 79, fit as a fiddle physically, and still coordinates her wardrobe with some of her old style most of the time, but it’s hard for her to maintain a train of thought for long.
Mum’s working memory has gradually diminished to the point where it lasts about twenty seconds. Occasionally she can hold a thought to the end of a sentence, and she can sometimes even manage to participate sensibly in a brief conversation, but before long her thoughts inevitably get lost and scrambled, and she makes no sense.
I remember having a conversation with her a couple of years ago, when her working memory was about two minutes long. She acknowledged the difficulty of organising her ideas with a deteriorating memory. She agreed that thought needs some memory to hold and manipulate its parts. True thinking cannot be done successfully without a working memory, so dementia takes away the ability to think.
Difficult Conversations
Some of Mum’s intelligence is still in there, within the chaos. She still thinks in complex concepts, but struggles to find the words to express them. She was always a keen conversationalist, and she certainly hasn’t let her dementia stop her talking, but it is sometimes a struggle to understand what she means.
Because her memory is so damaged, Mum repeats herself in endless loops. She might ask about the weather, or where I live, or our plans for Christmas ten times in as many minutes. If she was a quieter person, we might not be so aware of the extent of her intellectual disorder.
A Former Life
I have been living in the UK, and recently returned to Australia to be near my mother; to spend time with her before she disappears completely. She is not the mother she once was, but in some ways she still is. I can still catch glimpses of that former person; that incredibly stylish and smart, intuitive, and emotionally intelligent woman who, together with my father, created a family and a successful business, built houses, and travelled the world.
Mum came from a large family, and was historically the person her brothers and sisters turned to when someone needed to be listened to, or hospitalised, or put in care, or buried. She was a middle child, not the eldest, but we were the first sub-family to emigrate from Scotland to Australia, so Mum helped to organise and house each of her siblings and their families as they arrived. I think this, along with her sound organisation skills, big heart, and generosity with her time and energy, was the reason she maintained the big sister role in her family until her mental deterioration.
Put a Gun to My Head
Some of my mother’s siblings developed dementia long before her, and their father also died of the disease. Mum used to say, “Put a gun to the back of my head and shoot me if that ever happens to me.”
But nature is both cruel and kind. As her brain cells died, her mind refused to accept that she had any problem beyond the normal declining memory of people her age. Even now, when she is locked away in a secure unit within a nursing home, unable to leave without a chaperone, she has no idea that she has dementia.
Happily Confused
The good news is that she is very happy and appreciative of everything and everyone. She enjoys living in the nursing home, surrounded by confused people who share the same condition. It can be touching and amusing to see Mum trying to be her usual helpful self with another resident who insists that the clothes he found in his room are not his. Confusion begets confusion.
Mum sees these people as her friends, and enjoys talking with them and her wonderful carers all day, but she could not identify a single name if asked.
I try to learn their names on my visits. I often wonder, as I watch them being fed and dressed and steered in the right direction, who were these confused shells of people before they started to disappear with dementia? Were any of the other residents as vibrant, intelligent, competent and caring as my mother? What were their lives like? What were their achievements? Who and what exists because of them?
When to Grieve?
It must be painful for their families, as it is painful for me and my family, for we cannot grieve in a normal way. Our loved ones are not yet gone, but they are definitely going.
It will be years before we bury my wonderful mother, but the mother I had and knew is fading quickly before my eyes, being replaced with a sweet, loving, and more and more confused little old lady.
Should I cry? Should I sigh and accept the inevitable downward slide with a stiff upper lip? Or should I be happy and grateful that I get to spend time with this gorgeous, happy, loving, gentle person as she continues to change? And should I be happy for her that she continues to live and enjoy life?
Ask me in a few years. Ask me when her language totally goes; when she can no longer feed herself; when she needs to wear a nappy. Ask me when these factors cloud the memory of the amazing women that she was.
Mum still recognises and remembers me, most of the time, but she cannot do that forever. Perhaps that will be the most difficult transition for me. When she disappears to the point of no longer realising that I’m Lorri, her little girl.
Lorri Craig