and reflections of my late father
This weekend marks the 4-year anniversary of my father’s death. Dad died in July 2014 at the age of 65 from ‘Pick’s disease,’ a rare form of progressive dementia involving localized atrophy of the brain. His symptoms all pointed towards early-onset dementia, and we only learned of his true diagnoses a year after his death.
My father was a hardy Irishman and an outdoors-man. If he wasn’t rounding up cattle, constructing a fence or creating a vineyard (to perfection mind you) he was pouring everyone a drink and spinning a yarn … the time he built his own river boat and treated his sister to an ‘adventure down Abbey river.’ Musings of tomfoolery and even tragedy — but always sprinkled with that sharp Irish wit and narrated with an infectious, barrel-chested laugh.
For some reason I think of the lyrics from Working Man by The Dubliners …
He can take you back in time, tell you of the hardships that were there. It’s a working man I am and I’ve been down underground …
My father was that spirited working man, through and through. At least until his brain began to shut down, one compartment at a time.
I first noticed it when he failed to recognise his favourite coffee mug. My mother just shot me a worried look and blamed it on the wine. Then his moods became erratic, yo-yo-ing between passive and detached to uncharacteristically aggressive.
We were none the wiser.
While families wait for a cure their loved ones are slipping away before their eyes
How can anyone know when a loved one is slowly vanishing? When their walls of perception are crumbling down around them and their anamnesis is being hijacked — the recollection of an entire life suddenly spirited away by some unseen thought thief.
How could a man who was larger than life, who was a source of such humour and wit, be reduced to this? When someone close to you develops dementia, you naturally want to understand why it’s happening … so you start to dig, you do your research.
The New England Journal of Medicine characterises Alzheimers’s disease as the deposition of amyloid-beta (Aβ) plaques in the brain.
But that description doesn’t help much unless you’re a neurologist or have a profound understanding of the human brain. And with so many cooks in the neurological kitchen, waiting for a cure is like waiting for a divine miracle. And most trials are unsuccessful.
Such has been the case with the recent drug trial of Verubecestat, in which 1958 patients, with mild-to-moderate Alzheimer’s, underwent a randomised, double-blind, placebo-controlled, 78-week trial. The results were negative.
Some studies suggest that alcohol consumption creates a heightened risk of developing Alzheimer’s later in life, while other research points to cholesterol playing a significant role in the development of the disease. There’s also a theory that there’s a link between depression and accelerated ‘ageing of the brain.’ But dad was never a depressed individual, he was quite the opposite.
There’s a whole list of psychological, genetic, biological, and environmental factors, including: proteins, hungry cells, alcohol, genetic disposition, traumatic events, poor diet … the culprits stack up like a bad detective movie, with the APOE4 gene being its master antagonist.
“While a quarter of Alzheimer’s patients have a strong family history of the disease, only 1% directly inherit a gene mutation that causes early-onset Alzheimer’s.” — Penny Dacks
It’s all about genotypes. There are three types of the APOE gene, called alleles: APOE2, E3 and E4. APOE3 is the most common (that’s most likely you and me) and doesn’t increase risk. Everyone has two copies of the APOE gene and this combination determines your genotype …
E2/E2, E2/E3, E2/E4, E3/E3, E3/E4, or E4/E4.
If you’re carrying the E2 allele, you’re in luck — it’s the rarest form of APOE and may reduce the risk of developing Alzheimer’s by up to 40%. But it’s the APOE4 allele (present in approximately 10–15% of people) that’s the culprit, and increases the risk for Alzheimer’s, lowering the age of onset dementia.
Having one copy of E4 (E3/E4) can increase your risk by 2 to 3 times while two copies (E4/E4) can increase the risk by 12 times.
There’s no history of Alzheimer’s, Pick’s disease or dementia on dad’s side of the family. So he must’ve been in that 1% that contracted the disease through a genetic mutation right? That’s what the doctors told us a year later while they kept his brain in a jar.
And then I discovered this …
Evidence is not conclusive in modern research on whether classical Pick’s disease pathology has or does not have a direct genetic link.
And now a possible breakthrough: scientists are saying they may have found a way to correct the APOE4 gene and erase its harmful effects, simply by manipulating it (using a small molecule) into a harmless apoE3-like version.
Or is this just another theory?
It’s easy to be cynical when a family member has already fallen victim to the disease, and when a cure always seems ‘just around the corner.’ But I hope the breakthrough is true, for other families who are suffering and waiting for answers.
I took a flight back home in 2014. I thought I could lend a hand, maybe move home for a while, be closer to my father during his decline — but I was already too late. I would never have another meaningful conversation with him again.
By the time I arrived he’d already been admitted to hospital.
Many of his motor functions had given way, and to make matters worse, he’d had a bad fall while walking the dog, fracturing his skull and causing blood on the brain. The accident, combined with the aggressive onset dementia, caused a condition known as aphasia — an inability to speak or formulate words — due to specific brain damage. He could only form indecipherable murmurs, making his decline all the more devastating.
When I saw him like that, I collapsed on his bed and sobbed into his side while he gently stroked my head. He had lost most of his body weight, his head hung forward like a lifeless puppet, his face was gaunt and his eyes, once a striking blue-green, were a dull-grey and unfocused. He stared passed us, as if he were drunk.
He was worse than a shadow of his former self, he wasn’t the same person at all. And I wasn’t just sad, I was angry, because how dare he go out like that: flickering out like a drowning owl, lost in a sea of confusion.
To this day I’ll never know if he remembered us or not, but I like to think he did, even if it was our faces, our eyes he remembered and not our names.
The enduring holistic mystery of music
On one occasion, I bought dad an iPod and filled it with his favourite music. My brother placed the headphones snugly over his large rufous ears and we played a track from his best-loved singer, Patsy Cline — and something happened … the music made a connection. We noticed a trigger, a spark of recollection in his eyes.
In a way, it didn’t surprise me. I mean, what do we really know about music? It’s possible that human beings have been experimenting with music for the last 55,000 years, since the first instrument: the human voice. But as far as we know, music is as old as time. Even the planets have their own songs or harmonic frequencies.
And we now know that music does help Alzheimer’s patients, in that it has the power to unlock memories and other cognitive pathways.
Should music then be seen as a form of holistic alchemy, a revered ‘tenet of clinical neurology?’ Absolutely. Neurologist, J.H. Jacobsen calls it a ‘neuropsychological phenomenon.’ And although this area of musicology is still a new frontier, how the brain makes these connections is beginning to be understood, thanks to the brilliant work of neurologists, music therapists and organisations such as the Alive Inside Coalition.
“Thanks in part to the current ascendancy of functional neuroimaging, the time is ripe to take music neuroscience to the clinic.” — Jacobsen
I often wonder what my father’s memory was while he listened to that song. Perhaps he was sharing a cigarette with a young woman, both lying under a smattering of stars in some farmer’s barley field, while they listened to Patsy Cline crooning the lyrics to I fall to Pieces. I imagine the song over an old vintage transistor radio … filtering through the airwaves in a static warble.
That’s how I thought of his memories near the end, like static, only slightly tuned to the right frequency — the rest lost somewhere in the ether, bouncing around in the atmosphere …
And I’ve tried and I’ve tried
But I haven’t yet
You walk by and I fall to pieces …
I fall to pieces
Each time someone speaks your name (speaks your name)
I fall to pieces
Time only adds to the flame
You tell …
The last line is like a question, like … “It’s your turn to tell me a secret.”
I wished I’d known my father a little more, known the person under the man, known what truly inspired him — but we rarely do, and then they’re gone. Our loved ones become memories, but those memories are all we have to keep them alive. Or more to the point … those memories are what they should always have.
This article was written by Jakob Ryce and originally posted on Medium.