Our daughter has given me the okay to share her thoughts on the inroads into life that can be caused by the number one – known but not talked about – killer in Australia. Dementia. 

She shared it with me, and what she wrote moved me into a world of pain and understanding because dementia has not been for me ‘on the outside looking in’ but rather has engaged me directly, in the early stages, without knowing, since its impact on our lives.

Dementia is often mentioned lightly, almost in passing, and without many people knowing or understanding its consequences. I believe many think its mention is a shame job; in the same way as cancer used to be regarded. Dementia is also a scourge that many are reluctant to acknowledge and more than willing to dismiss as not an issue or a concern. 

It is for this reluctance that I would posit that there are far more people sufferingfrom dementia than the number of 450,000 that is suggested. It may well be that the actual number of sufferers is closer to the 1,000,000 mark of people predicted to be inflicted by dementia in 2050.

Funding for dementia programs and support is light on compared with research into other clinical areas. In Australia, funding for dementia programs is solely in the hands of the Federal Government, with no recognition or contribution from state or territory governments.

The impacts of this deleterious condition are eating into the brains of ever increasing numbers of people.

Please read and contemplate what our daughter has written.

Sincerely

Henry Gray

February 14 2026.

__________________________________________

Outside Looking In

My parents are Margaret Rose Gray (nee Martin), born May 28th, 1945, and Henry Maitland Gray, born February 24th, 1946. Their stories are not mine to tell, but I will say they did not have the happiest of childhoods and they both grew up having complicated relationships with their mothers. This led them to moving our family to the remotest areas of the NT when my brothers and I were young.

As parents they were ahead of their time. They seldom yelled or shouted, even more rarely used corporal punishment. Domestic labour and mental load were very evenly divided. We grew up secure in their love for us and for one another.

Things have changed in the last few years. Looking back with the benefit of hindsight the first signs I saw were at my 50th birthday party; nothing so wild that I couldn’t shrug it off as just “weird”.

Mum has dementia. A blanket term used to describe any number of conditions, much the same way cancer is. All with different causes and triggers. Genetic, physical, mental factors, lifestyle influences, environmental conditions. A treatment for one has no effect on another. One person will develop it; their identical twin will not. It has no rhyme, no reason, no mercy.

There are a lot of stats, fact and figures about dementia to be found with a simple google search. The scariest being that it is now the leading cause of death in Australia, that there are no truly effective treatments. Some things might slow the progression of the disease in some people; that is as hopeful as it gets. My father is now Mum’s full-time carer. Trying to find his way in a role no one would ever choose or want, but that has been thrust upon him by cruel fate.

I love both my parents. Respect and admire them more than I can say. They are the kind of people we should all aspire to be. As a person, a spouse and a parent I find myself following the example they set for me. Watching as this disease insinuates itself into every nook and cranny of their lives is an emotional and often overwhelming experience. I am on the outside looking in. I cannot bring myself to imagine what it must be like from the inside looking out.

My Mother

I am blessed to have been one of only a handful of people to truly know my mother. She has always been a deeply private person who hid her wit, her humour and her profound intellect. Now she does not need to hide as she becomes more and more a prisoner in her own mind. The portals that connect her to the world are narrowing; some seem to already have closed. Her eyes and ears collect the stimuli from The Now, but somewhere they become lost and so her mind sends her back to the past or into dream and figments of imagination. At times the dreams become waking terrors, and she sees, feels and hears people and events that are not there and never have been.

On good days she is HER; all the many facets that make up this woman who I love above all. My mother, the grandmother of my children, the wife of my father, the teacher, the mentor, the cook, the seamstress, the confidant, the pianist. All the roles she embraced and made her own. She was shaped by tragic events in her young life; the eldest child of a cold and unloving mother she was parentified from a very young age. Giving all to her younger siblings, especially the sisters favoured by her mother, to allow them to shine. Despite this, my mother was kind and loving. She seldom strayed outside her social comfort zone, but she saw everything around her and those of us fortunate enough to know her would cry with laughter at her stories. Growing up I would spend hours talking with her, often about nothing much at all. By listening to her I learned so much about life and the world and small ways we can act to make them better.

I miss those conversations. Now it can be so difficult to talk to her. She can jump from topic to topic, confuses who I am, how old I am, where we are. I can see her frustration at trying to process and understand what is said to her. There are long pauses and endless stilted silences. And there are so many rules around talking to a person who is trapped within their own mind. Never say “remember”, don’t say “you just said that”, or “you told me already / I told you already”, or “no, that never happened”. I sit and smile and rub her hand and nod and feel like I’m treating my strong, smart mother like a clueless child. Parentified in her youth and now infantilised in her old age.

During the bad moments the conversation is agonisingly restricted and circular. Like a goldfish swimming endless circles around an overly small bowl. Swim, swim, swim …. Oh wow! A rock! …. Swim, swim, swim ….. gosh! A plant! ….. swim, swim, swim …. Look! A rock! …… Even worse is when there is no sound. Mum sits or lies, mostly lies, and stares off into a distance no one else can see. Her lips vibrate, her eyes flicker, her fingers tap together; those seem to be reflexive movements of a body whose mind is both kilometres and decades away. When this happens, I wonder where she is, what memory or dream her mind is playing on its internal screen. Is she happy or sad in there? Sometimes tears run down her face; she doesn’t; cry or sob but the tears run freely and unchecked. If you ask her what is wrong, she doesn’t know, doesn’t realise she is crying.

Mum knows she has dementia, knows what that means. She tells me her mind is “all messed up” and she feels lazy and worthless. She wants to get control of her thoughts back, wants to DO things but doesn’t know how to take the first step. She wants me to tell her (boss her) and make her do things; I can’t tell her how many times I have tried. That Dad tries every day. There are so many diseases that turn the body against itself. Dementia is so much worse. When your brain attacks your mind, ripping and destroying and turning it into a tangle which is then locked inside.

I am scared for her. How hard it is for HER to fight her way to the here and now. How exhausting and terrifying and lonely that must be.

My Father

My father’s world has been turned upside down, shaken, set on fire and the ashes scattered in a storm. He is no longer an equal, a partner, a friend. Now he is a carer. Learning a new vocation, one no one would choose, as he neglects his own needs and wants to care for the woman, he has shared his life with for 60 years.

He can not leave her alone for long lest she needs him or believes she has been abandoned and forgotten. At times Mum resents the interests that steal some small part of Dad’s attention away from her. When she knows his thoughts are elsewhere or he is making arrangements that do not involve her. Then she can be childish and petulant. Her words lash at him to make him feel the pain she carries. Adults protect their loved ones from pain and hurt, children broadcast it until something is done to soothe them and make it go away.

Dad answers Mum’s questions, responds to her comments, explains what is happening and when and why. Over and over and over. He bites back his frustration when she accuses him of holding information from her, schools the expression on his face and the tone of his voice. Soothes, reassures, calms, loves. Above all, he loves.

Dad spends most of his waking hours sitting close by, not so close that Mum might think he is hovering or interfering, but always there when she needs him. He reads and writes and keeps busy, but mostly he keeps watch. Ready to answer her questions, fetch what she needs, help her move to another spot. Dad is a vibrating bundle of suppressed energy, when I’m there I can feel it coming off him. Always on edge and never at rest. He also wants to go out, to see, to converse, to learn, to teach, to laugh. But he stays. Every hour of every day he chooses to stay.

Dad is the strongest, bravest person I know.

Me

I rage at how unfair all of this is. Mum and Dad have lived their lives for others. Both have worked hard since childhood. They gave my brothers and I the very best lives and have done their all to make sure our children enjoy the same. These years of retirement should be about THEM. Living in peace and harmony, pursuing their interests and spending time with one another and family. The first few years of retirement were like that, but now it has become a prison for them both. The iron chains of dementia keep them isolated, even from one another.

It is s unfair for anyone to spend the last years of their lives tortured by mental decline and self-diminishment. It is unfair that anyone must watch a person they love turn inward and become lost in the tangled web of disease that withers their brain. And I am angry! Angry that such a hideous disease should even exist. Angry that science has extended the quantity of our years but can’t maintain the quality of the lives we live in them.

I am ashamed to admit, I am also so, so angry at my mother. The life she has led in the years after her retirement are a “How not to avoid dementia” handbook. No social interactions (she even stopped talking on the phone), no exercise, bad diet. One by one she dropped her activities and hobbies. The piano which we had since forever was packed up and given away, the sewing machine sits dusty and the books are unread. She stopped driving, gave up editing dad’s papers and articles, was no longer interested in the news or quiz shows. If I were granted one wish, I would go back 10 years and do my very best to divert her from the path she so blithely walked down.

I am angry at the rest of us, the immediate family. Myself and my brothers and my father. We let her make these choices and did little to dissuade her. Our family has always been about respect, accepting that the others have the right to make their own choices. Even if we don’t agree. Mum and Dad have always been a team, united, synergy. So forcing choices on mum is not something any of us would have done, it’s not something any of us feel happy about now. Maybe nothing would change, but maybe I would also feel that at least I tried.

For now, we have a lifetime of memories to share and preserve. As many quiet talks, hugs, held hands as we can. Some memories still to make. I have heard of dementia being called The Long Goodbye. Saying goodbye to our loved ones one small piece at a time as the portals between their mind and the world close.

I love you, Mum. You ….. the amazing, complicated, kind, loving, brave, intelligent, hilarious woman I know as my mother …. You will be always in my heart.

Estelle.