My mom looked at me and my brother and was like 'Who are you?'

If a tsunami wipes out your small village it’s a lot easier to cope with the idea that we must have pissed off god

“It was fucking surreal,” Steven said. “One of the least healthy things I’ve ever done is walk out of my childhood home with my brother, grab a hip flask, and just chug it as they were being exited.”

He’s talking about his parents there. This one isn’t going to be much fun I should tell you right up front. There aren’t many laughs in this one. Steven which isn’t his real name said the local fire department had to come carry them out against their will. Big strong firemen were carrying his aging parents outside in their strong fireman arms but in this case the fire or the crumbling home or whatever metaphor you want to use wasn’t something they could be safely whisked away from because it was inside of them.

They were being exited, he said. I don’t like how that phrase sounds but it’s probably an accurate way to put it because leaving wasn’t really their choice and in any case they had already left a while ago.

Both of his parents had started suffering from dementia and Alzheimer’s-like symptoms around the same time about four years ago and it was time to start a new portion of all of their lives whether they were ready for it or knew it was even happening or not. That is what the disease does it changes a person and then it changes everyone else around them.

“For them it’s a full-blown, horrible tragedy that they also wake up in every single day,” he said. “They’re either being life detectives for themselves on a given day trying to figure out what’s going on…or not.”

“A lot of this attached itself to some really elemental childhood shit,” he said.

Here listen to this it’s really fucking beautiful and sad and furious and you might need it at some point.

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Steven wrote to me the other day as people often do saying “This is one of the most Hell World things I’ve ever seen.” He shared this article from the Washington Post titled “Pfizer had clues its blockbuster drug could prevent Alzheimer’s. Why didn’t it tell the world?”

In 2015 the pharmaceutical behemoth came across data that their anti-inflammatory drug Enbrel which is meant to treat rheumatoid arthritis appeared to also sharply reduce the risk of Alzheimer’s by around 64%. Holy shit right but despite having that data the company did nothing with it. Whether that was because of an abundance of sound scientific research-related caution or good old fashioned greed is anyone’s guess.

The results were from an analysis of hundreds of thousands of insurance claims. Verifying that the drug would actually have that effect in people would require a costly clinical trial — and after several years of internal discussion, Pfizer opted against further investigation and chose not to make the data public, the company confirmed.

Researchers in the company’s division of inflammation and immunology urged Pfizer to conduct a clinical trial on thousands of patients, which they estimated would cost $80 million, to see if the signal contained in the data was real, according to an internal company document obtained by The Washington Post.

“Enbrel could potentially safely prevent, treat and slow progression of Alzheimer’s disease,’’ said the document, a PowerPoint slide show that was prepared for review by an internal Pfizer committee in February 2018.

After years of internal debate the company decided against looking further into the data and the reasoning behind that probably depends on what your opinion of pharmaceutical companies is. As many have pointed out it appears they may have decided that it would be too costly to embark on what would undoubtedly be a very expensive trial especially owing to the complexities of studying Alzheimer’s and no real assurances that anything beneficial would come from it.

Others have pointed to the fact that Pfizer’s patent on Enbrel was about to expire meaning that they would not have been able to hold a monopoly on whatever resulting medication came out of the process if anything were to be found.

Wagering money on a clinical trial of Enbrel for an entirely different disease, especially when Pfizer had doubts about the validity of its internal analysis, made little business sense, said a former Pfizer executive who was aware of the internal debate and spoke on the condition of anonymity to discuss internal Pfizer matters.

“It probably was high risk, very costly, very long term drug development that was off-strategy,’’ the former executive said.

Another former executive, who also spoke on the condition of anonymity to discuss Pfizer operations, said Pfizer offered virtually no explanation internally for opting against further investigation in early 2018, when the internal debate ended.

“I think the financial case is they won’t be making any money off of it,’’ the second former executive said.

Making matters worse as many others have said is that even if we grant that Pfizer reasonably didn’t want to conduct the research themselves they should have at the very least then made their findings available to others which they did not do. They kept it to themselves.

“Having acquired the knowledge, refusing to disclose it to those who might act upon it hides a potential benefit, and thereby wrongs and probably harms those at risk of developing Alzheimer’s by impeding research,’’ said Bobbie Farsides, professor of clinical and biomedical ethics at Brighton and Sussex Medical School in the United Kingdom.

Some have pushed back against the reception to the Post story saying these sorts of things are a lot more complicated than headlines and social media reactions have made them seem and that is probably true to some extent but it’s hard to take water-throwing pieces like this one from The Motley Fool that offers what I imagine are some valid points when it also includes a caveat like this: “If you're going to ask senior management at a well-run company to blow at least $80 million on a clinical trial that has almost zero chance of success, you might as well ask them to torpedo their careers.”

At long last who will think of the careers of the pharma execs?

Pfizer’s revenue for 2018 was $53.64 billion incidentally.

Steven was incensed when he read the article because the idea of a corporation sitting on their dicks when they have data that could maybe possibly potentially hypothetically help your family or a family like yours will tend to piss a person off.

I spoke with Steven about his reaction to the story and about the struggle of dealing with not just one but two parents that are struck by dementia at once. What is that like I wanted to know and you probably want to know and the answer is not that great man. It seems like it’s bad.

What were you thinking when you sent me that article? How did it make you feel?

Um… bad. Broadly speaking. I don’t want to give away too many details about my parents, because one of the weird things about this process is as their memory starts to go they become more vulnerable, not just to people that might want to take advantage of them, but to people from their past who they might not want to talk to anymore. You become very suggestible when you have dementia.

We don’t have to go into any identifying details at all.

Ok. In line with that, this is a process. This has been going on for about as long as I was in college at this point. We started to notice my dad was losing a step about four years ago, and then my mom, who kind of handled everything around the household, she started to try to step up, but the way she stepped up was a lot of covering for him. My brother and I don’t live near them actually. I guess what I’m trying to piece together in response to what you asked me is that this whole thing has been this long, arduous process. Right now in my shitty one bedroom apartment I’m looking at fifteen boxes of stuff I left with from their apartment this weekend. I’m slowly sorting through all this stuff. Because they lost control at the same time I had to clean out their place. There was trash, there was hoarding. All of that you start to process, but you process it over time, with this sort of sense of fighting your way out of it. It’s very personal and immediate. Then you start to get to the end of it, and then, sitting down with my wife, we were having a beer, I was stupid, I looked at my phone. I saw there was a news alert. I opened the stupid fucking news alert, and her face turned white because my face must’ve registered immediate fury, but also this collision of the last four years of my life into that fury.

I don’t know if that makes a ton of sense. There’s all this unfinished processing you do, and it intersects with the system, and you’re like, ah fuck.

Sure, you had been processing it as this very personal thing obviously since it was your parents, and maybe you didn’t connect the dots to the nightmare of healthcare and capitalism we live in and realize how that actually effects your parents’ lives, right?

Right. And that’s one of the huge things about this specific thing. As these things go I’m incredibly lucky. My parents were the last upper middle class people in the world. We haven’t accrued any debt from this. Their care is going to bankrupt them, but it won’t touch me or my family in the larger sense. We were also able to pay for people to start showing up. My brother managed to, against any of dad’s wishes, get power of attorney, so he was able to start sending people there, doing all this stuff that, had either of us not had that, I just would’ve gone out of business. So I’m incredibly lucky. I don’t know how the rest of the world does this. It’s been an incredible trial on an emotional level, and there’s been a financial element obviously, as these things go. But reading that article I was like, yeah, I understand the financial decisions, but the people making those decisions still have a one in five chance of developing Alzheimer’s.

Right.

One of the things about coming to grips with capitalism and the sense that, as a white guy in my forties who has been very lucky, I actually am like the werewolf that has been terrorizing the town when I go to sleep. One of the things about coming to grips with that has been starting to realize that there’s an enormous streak of self destruction in all of this that is alien and weird to me.

You’re saying, these pharmaceutical executives… why aren’t they willing to spend a little bit more of their company’s money that could in theory save their own life some day?

Yeah, save their life, or, not even spend the money, they sat on the research. You don’t want to spend the $80 million? I get it. There are about 80 million doctors that are out there that want that Nobel. If they prove a generic version of Enbrel is gonna knock down dementia rates in the elderly by 65% they will roll those dice, fill out those grant applications. It’s just… the shortsightedness of that particular calculus is classically capitalism and classically destructive and self destructive. There’s so much about the current moment that this ties itself to.

What happened to your parents?

My dad started to develop… something. We weren’t sure what. We noticed that he was expressing a bit more confusion. He was also moving more slowly, and he had been someone who always walked really fast. He was in his early seventies. We spoke to my mom about it and she was like I’m gonna try to work with him. My parents had any number of not so healthy things about their relationship, but they were good people and cared very much about each other.

So my mom took the strategy…. One of the insidious things about dementia is that once you have it you become very suggestible, and if you’re around other demented people, you sort of become like a society of dementia if that makes sense?

Like a feedback loop of suggestibility?

Exactly. So my mom had a legitimate episode, where she wound up in the hospital. They gave her a diagnosis at that point of probably Alzheimer’s. You can’t actually diagnose Alzheimer’s until after the patient dies because you have to cut into their brain. But you can say you’re expressing all the obvious signs.

My dad was also starting to express symptoms, but at that point he decided to be non-compliant, because at that point you have a brain full of bees. Because he had not yet been diagnosed, and we hadn’t been able to get him to an attorney to sign the papers that would allow us to make him get diagnosed, it became this incredibly arduous process of trying not to fight with him while fighting with him. Meeting with attorneys, various people to try to get their taxes in order and bills paid, and trying to make sure the lights stay on, and worrying they’re going to burn the place down or crash their car, which, thankfully they didn’t.

Frankly, and I hate to say this because our state has a good social services safety net, the state was pretty useless. They sent a couple social workers when we started calling saying they’re a threat to themselves. My dad would close the door on them and they would be like Well we did what we could.

Their primary care physician who had followed them for a while said They’ve stopped coming to me is everything ok? She was able to make a house call as a mandatory reporter. When she made that house call, my brother and I came back, and she mandated the report, and they were taken out of the house by large firemen.

Oh god what was that like?

Fucking surreal. One of the least healthy things I’ve ever done is walk out of my childhood home with my brother, grab a hip flask, and just chug it, as they were being exited.

At that point I thought, ok, they’ll go to the ER, and from the ER they’ll go to long term care, but if course it wasn’t done for another week and a half. They decided that my mom met the threshold for failure to thrive. For some reason with my dad they were like, Well, he’s being a real dick and we don’t want to deal with him. So we worried for another week, until we hired a social worker to go deal with him. As capitalist flexes go, that’s better than buying a Maserati or whatever, but that made me feel like shit.

What do you mean? Being able to afford a social worker?

Yeah, but also just being able to play your advantage. That’s something that should just be available to everyone.

So he wasn’t listening to you and your brother?

No and he was at the point where communication was impossible because the phone was always unplugged from the wall when we would go over. People undergo these extreme personality shifts, especially until you get them back under a medication regime. He wasn’t like that generally. Again there was plenty of dysfunction in my family’s history, but that’s just family. This was like new unsettling behavior. That’s the other thing, nobody says I don’t want to talk to you, it’s just impossible to talk to them. You don’t know whether or not it’s because they’re shutting down and becoming depressed and possibly going to act out, or it’s dementia or anything else. It’s also a disease that makes you enfeebled, and you know it’s happening when it’s happening, and there’s a lot of shame and obvious anger about it.

Your mother is around the same age? And how long after did it happen? Is that common?

You’ll have to fact check me on the statistics…

OK here you go:

“Most seniors don’t have cognitive impairment or dementia,” according to the Washington Post.

Of Americans 65 and older, about 20 to 25 percent have mild cognitive impairment while about 10 percent have dementia, according to Kenneth Langa, an expert in the demography of aging and a professor of medicine at the University of Michigan. Risks rise with advanced age, and the portion of the population affected is significantly higher for people older than 85.

Langa’s research shows that the prevalence of dementia has fallen in the United States — a trend observed in developed countries across the globe. A new study from researchers at the Rand Corp. and the National Bureau of Economic Research finds that 10.5 percent of U.S. adults age 65 and older had dementia in 2012, compared with 12 percent in 2000.

Nonetheless, because the population of older adults is expanding, the number of people affected by dementia is increasing: an estimated 4.5 million in 2012, compared with 4.1 million in 2000.

And what about your dad was he diagnosed?

It’s such a broad-based syndrome, there’s Lewy body dementia, there’s Alzheimer’s, and then there’s just age-related dementia, you’re getting old, and your brain stops working so great. I think that’s what most people get. But for both of them, and we still don’t exactly know what happened to my dad… By the time he was forced into compliance it was more like Ok we’re at the make everybody comfortable for however many years they have left part of this rather than seek active diagnoses part, because what are you gonna do with those?

So where are they now?

They’re in an assisted living place. It’s…nice, as these things go. They have an apartment on the floor they live in together. It’s not a bad place, and they seem relatively happy there. We try to visit them as often as we can. We just took them out for their 50th anniversary a couple weeks ago.

Oh you took them out? That’s nice. Is it a constant thing for them, or is it like in and out of lucidity?

It’s weird, it doesn’t follow a path. You know talking to them. There’s a degree of acknowledged forgetfulness on their part and a degree of… Last time I was there my wife and I sat with them and my dad kept asking the employee there Have you met my son? Then five minutes would go by and he’s be like Hey have you met my son?

That followed three weeks or so back when we went out for their anniversary and my mom had a full on sun-downing moment where she looked at me and my brother and was like Who are you? Which was tough. But honestly not as tough as the process and running up against the system.

The horror of dementia is once you’re in it, it’s sad, but you’re kind of equipped as a human to be like I know what this is, it’s gonna suck. However I’m going to deal with it I’m going to deal with it.

For you or for them?

For me. For them it’s a full blown, horrible, tragedy that they also wake up in every single day. They’re either being life detectives for themselves on a given day trying to figure out what’s going on, or not. A lot of times my mom thinks she’s at a restaurant when she’s in the dining area or whatever.

I don’t mean to minimize it, because it’s incredibly hard going through this as their kid watching it, but as their son you can watch it happen and you can sort of accept it or not. However you do your coping, you can do your coping. Sometimes it has been too much and I’ve been like, Ok not coping today, drinking instead. But whatever process you go through with it — and this is still a very active process, so if you talk to me in a year I might be like That was bullshit what I said a year ago — but as it happens you sort of … You sort of understand that process. Especially if you’re lucky like I am. You can sort of be like Ok this is the part of the process where you feel real sad for a while. This is the part of the process where you don’t do [a creative activity] for six months. With the system, and encountering both the government side of it, the under-funded shitty bureaucracy side of it, and then the part my brother refers to as the part that picks over the carcass of our inheritance, those parts are much harder to interface with in a lot of ways. Much harder to emotionally deal with.

In a way is it almost easier to understand disease and death than it is to understand bureaucracy and profiteering off of sickness?

Yeah, in a lot of ways that’s absolutely it. That’s not to say I don’t understand profiteering. When I read that article, again, I was like I get Pfizer not wanting to drop the coin on doing this. What I don’t get is not sharing the info. All these people, you write their histories, the overworked social workers, the CEOs or whatever. But I don’t think any of them went into life being like Time for evil to happen! As mad as I got, and I got so mad reading that article I needed to get talked down, there’s nothing I can do, right? It’s not like I have access to these people in any way, nor would it have any meaningful impact if I did…. I don’t know, I’m sort of…

It’s Ok. It’s a hard thing to talk about. I would be emotional too. I just had to take my mother in for a scary test the other day, it could be cancer, but I’m at the point where I’m like, nah, my mother isn’t going to die. That’s crazy, that doesn’t happen. That denial.

Yeah man. I know what that’s like. I’m sorry you’re going through that.

I feel for you too. It’s terrible. I was thinking about this because I was just at my cousin’s wedding, and my uncle has recently been diagnosed with Parkinson’s, which is what his father died from. He had the dementia part of it as well, and I was trying to think of any memories of him that I had before he was like that and I couldn’t bring any up. I am hoping that you will be able to hold onto some memories of your parents from before.

A lot of this attached itself to some really elemental childhood shit. If you have any amount of dysfunction in your family or resentment toward your parents, and of course everybody does, you’re going to be like You’re just doing this to fuck me aren’t you? Right? In some ways that’s a coping skill. If a tsunami wipes out your small village it’s a lot easier to cope with the idea that we must have pissed off god than it is to be like Well that was a random thing that can happen at any point to anybody.

Right… So you’ve got like a Tony Soprano type of thing going on?

Haha I never watched it so I’m not sure.

Ah, well toward the end of his life, his mother, who was a real pain in the ass, starts to get dementia, and he thinks she’s doing it just to make his life miserable.

Ah, yeah. We definitely field a lot of emails from the caregivers about my dad being like, He is… not the easiest person.

So are you worried for yourself? Are there steps you need to be taking?

I was talking to my brother earlier and he said You know what is actually indicated as being good here? Nicotine.

Really? I’m going to keep smoking!

I never started, but he switched to lozenges like fifteen years ago and never looked back.  I spoke to a couple doctors about it and they were like Listen this is either going to happen or it’s not. Until recently there’s nothing that’s worked. If it truly shows that Enbrel is a disease inhibitor I will definitely start taking it.