I fully plan to kill myself–big qualifier–if I am ever afflicted with Alzheimer’s. For a little longer than a decade, I watched what it did to my father and I have no interest whatsoever in letting it do the same to me.
This morning I read a review of British neuroscientist Jospeh Jebelli’s book In Pursuit of Memory, about his research into Alzheimer’s plus reflections on his own grandfather’s affliction https://www.theguardian.com/books/2017/may/29/in-pursuit-of-memory-the-fight-against-alzheimers-joseph-jebelli-review. I haven’t read Jebelli’s book, itself, so instead I will do the laziest thing imaginable and pulls quotes from Robert McCrum’s review of it.
For anyone who’s never had any direct experience with this wretched disease, consider yourself fortunate and something of an outlier:
“Alzheimer’s has become a new plague, threatening the world’s population with a global strike rate of one every four seconds. In the UK, there are now more people with the disease than live in the city of Liverpool. Six million inhabitants of the EU and 4 million Americans have it, figures that are projected to double by 2030. So bad is the outlook that the WHO has declared dementia a global health priority.
It has become the salient fact of 21st-century life that, with an ageing world population, Alzheimer’s will overtake cancer as the second leading cause of death after heart disease. We’re at a point, writes Joseph Jebelli, at which “almost everyone knows someone – a family member or friend – who has been affected.”
“It has become the salient fact of 21st-century life that, with an ageing world population, Alzheimer’s will overtake cancer as the second leading cause of death after heart disease. We’re at a point, writes Joseph Jebelli, at which “almost everyone knows someone – a family member or friend – who has been affected.”
Again, “Projected to double by 2030.”
Sobering, especially to someone like me who can check boxes on a list of factors that may increase the likelihood ‘s of developing Alzheimer’s:
- A direct family member afflicted — check
- Traumatic Brain Injury — check (a benign brain tumor and post-surgical subdural hematoma–possibly the subject of a future post)
On the other hand, factors in my favor include:
- I’m male (1 in 6 women develop Alzheimer’s; 1 in 11 men)
- I don’t smoke (there seems to be a connection between poor cardiovascular health and Alzheimer’s)
- I have a college degree (the incidence of affliction is lower for those with higher educational attainments. That said, my own father, for example, was a college-educated engineering geologist, and there were other afflicted engineers [aerospace, structural] with him in the care facility where he spent the last year of his life, so a degree or two is no guarantee…)
From all I’ve seen, it is damn near the worst thing that can happen to a person. Per McCrum’s review:
“The human animal derives its humanity from language and memory. What are we, without memory ? The short answer is: wild beasts.
Memory gives us personality, emotional intelligence, family relations, and community. Memory anchors us in space and time. It defines the parameters of existence. Paradoxically, it might even confirm the futility of existence.
Dementia, in the broadest sense, lays an axe at the root of memory, creating that “bare, forked animal”, unaccommodated man. “Keep me in temper,” exclaims King Lear before his final breakdown, “I would not be mad.”
Without memory–not just of people, places, and events–but of mere behavioral and social norms, there is no dignity and no safety:
- Do I touch a table-saw’s spinning blade? No, you do not. It took seven stitches to close the gash in his hand and it broke his heart to lose access to his woodshop.
- Who’s the stranger seated beside me, and are they a threat? Very often it was my mother, or one of my siblings, or a family friend, and no, we were not threatening, though he couldn’t always recognize this.
- Should I take household items out into the yard and bury them? Nope. Mom looked out the window one day and saw dozens of framed pictures half-buried in the fallow garden, on their ends like tombstones. God only knows my father’s motivation.
- Is this where I go to empty my bowels? Not always, no. If I had to pick two words to describe Dad, they are intelligent and dignified, and Alzheimer’s completely robbed him of these traits. Reduced him to a state of helplessness that he would’ve hated.
Another word to describe him is kind–maybe first and foremost, because even once he was completely “gone,” when he no longer recognized anyone or where he was, he was mostly worried about others. In the first care-facility where he stayed, one 30-degree morning he kicked out a window and set out in jeans, a tee-shirt, and slippers. Maybe that doesn’t sound like the act of an especially kind man, but when Wheat Ridge police finally picked him up, ninety minutes later and two miles east of the care-facility, all he could tell them was that he needed to get home to his wife–that she needed him and he needed her. Even in his darkness, he was only ever concerned with my mother’s happiness.
When Dad died in 2011, I mourned the loss of my memories of the man more than the demise of a body that had outlived its own. People expressing sympathy asked if I was sad and I was, but honestly, it’d been far sadder watching him deteriorate–back when he was becoming aware of the yawning gulf that stretched before him.
Summer of 2005, my younger sister and I took Dad on a road trip around rural Nevada. As a geologist, Dad had cherished his days out in the field so we figured he’d enjoy a trip with rocks and scenery in abundance, and for the most part he did, except for one particular morning. Dad, his brother Dave, my sister, and I were seated for breakfast in a booth at a truck-stop diner when a look of absolute panic came over Dad’s face. He tapped my sister on her shoulder and asked if he could speak to her in the other room. The waitress arrived with coffee, so Uncle Dave and I stayed in the booth and when Dad and my sister returned, she gave me an I’ll-tell-you-later-look and I let the matter drop. Later, she told me that Dad had been upset because he couldn’t recognize the man seated next to me–his brother, Dave. Later that afternoon, I tired to reassure Dad, saying that we’d pushed it too hard the day before and that everyone gets forgetful when they’re tired. He nodded, but looked away and said, “Aw, sure, I was a little upset that I didn’t recognize my brother, but I couldn’t stand the thought that someday I was going to forget you, too.”
Honest to God, that’s the saddest thing I ever heard him say, and I don’t ever want to tell my kids anything like it. I’ve told my wife that if an Alzheimer’s diagnosis ever comes down, she should drive my up into the mountains during a snowstorm and just let me walk away. No care-facilities, please. No midnight calls to the police to try and find me, no perpetual twilight. No broken heirlooms or misplaced letters. No photos in the fireplace. No hiding the car or house keys. No babysitting and no unnecessary bills. No depression and no heartbreak. Please remember me for who I was.
Just one last walk into the darkening woods. One last walk to go look for my father.