IT’S never an easy thing to watch the slow disintegration of a human being, not least when that person is your own mother.
Few diseases are as cruel and merciless as dementia. Words cannot describe the heartbreak of watching, helpless, as the threads of a human life unravel.
Try as you might, cry for all the good it does, you cannot weave those threads back together again.
I could put my arms around my mum but I could not reach her. I could not save her. I could not bring her back.
"She can no longer enter your world so all you can do is try your best to enter hers," was possibly the best bit of advice I ever received in trying to deal with the pain, the frustration and, yes, the wrenching horror of this awful disease.
Slowly my mum, who had always been so disconcertingly articulate, began to lose her words and then her voice. She faded before my eyes like a treasured photograph left out in the sun.
In the end, she lost all memory of me. Despite everything we had been through together, to her it was as though I had never even existed.
Dementia always felt like a living death to me. Mum was not taken suddenly but with insidious stealth. She was stolen from us piece by piece.
Search as I might, I never did find the answer to the question that tormented me, that still does - how do you grieve for a person when they are still alive?
I'm ashamed to say I felt at times some measure of irrational anger towards my mum.
I wanted to shake her out of it as though she were trapped in a nightmare and, if I tried hard enough, I could wake her.
But it was also my nightmare, my brother's nightmare, my sister's nightmare and, above all, my dad's nightmare. With my family scattered, the lion's share of her care fell upon him until even he, strong as he was, could not cope.
Mad as it sounds, sometimes it felt like my mum was not my mum at all, that someone else had stolen her and inhabited her body, a sort of bodysnatcher if you will.
Because how else could I reconcile my beautiful, intelligent mum with this gaunt stranger shambling lost around her own house, frowning at me in confusion and suspicion, clutching to her chest a handbag full of seashells?
Before her Alzheimer's Disease, my mum had been one of those rare people who was almost a savant of sorts. She had the quick, shrewd, sharp-tongued, streetwise intelligence many Tyneside women seem born with, the perfect foil to my architect dad's rather more bookish, academic brand of intelligence. It is hard now to remember her as she was, the memories blotted out, tainted by others more recent and more disturbing.
She was frighteningly capable. She always knew where everything was – even things that did not belong to her, perhaps especially those things.
"It's in the chest of drawers on the landing, second drawer down, under the socks!" she would have shouted, or something along those lines.
My mum remained physically very strong even after the worst ravages of the disease took their toll. She would leave the house and walk for miles, trying to get 'home'.
Of course, she did not know where that was. Most of the people who had lived in the Newcastle of her youth had died long ago.
Sometimes friends would bring her back home. Sometimes it was the police. My dad was always a tough nut and fiercely private. He never liked others knowing the family business and certainly not that my mum was suffering from this condition.
I clashed with him over that. I always took the view that, in a small village, the more people looking out for her, the better. And by then, it was obvious to everyone who met her something was wrong.
In the earlier stages, she retained enough of her former crafty streak to wait until my dad was distracted to let herself out of the house and go on one of her adventures. One of the saddest things was when she destroyed some of the old photo albums because she no longer recognised the people in them, not even her own children.
In June 2021 I took my one-year-old son to meet her. Her face was bruised from a fall, the result of a seizure which happens in the later stage of the disease.
Because of Covid restrictions then in force, I was not able to go inside. All I could do was hold my son up to the metal gate and watch the two peer at each other between the bars. It was their first meeting. It would also be their last.
My mum by this stage had no notion of who I was though sometimes - perhaps I imagined it or it was just wishful thinking on my part - I thought I detected a faint flicker of recognition.
"What a beautiful little girl," my mum said as my son smiled up at her.
Mum died on Easter Sunday last year. I was able to travel to the care home in Alnwick in Northumberland from my home in Worcester to say goodbye.
My dad died on November 1 last year, just over six months after my mum. I have little doubt the stress of caring for her for over many years took its toll. I never once heard him complain. I suspect the guilt of not doing more to help him will always, in some measure, haunt me.
I write this not out of self-pity. Bad things happen to people all the time. In this job, I've witnessed some of the very worst.
But I wanted to write this so someone going through something similar might at least know they are not alone. There are thousands of people in Worcestershire who are living through this hell right now. This is for you.
Reading this (assuming you still are) may not help you. All I can say is that I hope - somehow - it does.
There are more reasons to be hopeful than ever before. It is too late for my mum. It may not be too late for yours.
In the last year, there have been two new drugs, lecanemab and donanemab, which can slow down the decline in memory and thinking skills of people living with early Alzheimer’s Disease.
The latest figures show there are over 9,900 people living with dementia in Worcestershire alone, over 84,000 across the West Midlands and around 900,000 across the UK. Many more will be undiagnosed, their families suffering in silence.
According to the Alzheimer's Society, donanemab slowed how fast memory and thinking get worse by more than 20 per cent.
The evidence from the trial suggests that the earlier in the disease the treatment was given, the greater the benefit. This means that there was more slowing in memory and thinking decline in people with fewer changes in their brains associated with Alzheimer’s disease. The delay in the progression of Alzheimer’s disease was 4.5-7.5 months over the 18 months of the trial.
Alzheimer’s Society was at the forefront of funding research into the role of amyloid in Alzheimer’s disease over 30 years ago – and continues to fund research that will be pivotal to unlocking yet more breakthroughs.
Alzheimer's Society checklist
Memory and mental ability problems
(1) Memory loss – difficulty learning new information or forgetting recent events or people’s names
(2) Struggling to find the right word
(3) Difficulty judging distances or mistaking reflections or patterns for other objects
(4) Struggling to make decisions, or making careless or risky decisions
(5) Losing track of time and dates
(6) Asking the same question over again, or repeating phrases
(7) Putting objects in unusual places
Problems with daily living activities
(1) Struggling with tasks like paying bills, planning ahead, shopping
(2) Difficulty getting enough sleep
(3) Getting lost in familiar places
Mood and behaviour
(1) Becoming easily upset, irritable, or aggressive
(2) Symptoms of depression, like feeling sad or hopeless
(3) Symptoms of anxiety, like feeling very worried or uneasy
(4) Withdrawal or losing interest in things I previously enjoyed
(5) Acting inappropriately or out of character
(6) Feeling restless and walking about
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here