Coffee Thoughts: April 2020

Welcome to Coffee Thoughts, April 2020: The Social Distancing Edition. Because hey, you know, that’s what all of us are doing. And if you’re not —and you’re able to — you should be. Because seriously, guys, this COVID-19 pandemic is no joke.

Here in the U.S., the COVID-19 Recession Has Arrived …

… and the overall picture is, perhaps, even more dire than anyone could have anticipated. At the time of this writing, over 50,000 people have been recorded as dying from COVID-19, and those numbers are only going to rise. Unemployment is hitting record levels. People are struggling to get by. Not every nation is able to socially distance to the extent of the more privileged ones, and those populations are going to be hit even harder: that means less wealthy countries are going to face epidemics on a level far more deadlier than here in the U.S., and it’s deeply depressing to watch, particularly in nations with leaders that aren’t taking this seriously enough. This is a global health catastrophe, incomparable to anything most people today have experienced, and things are only going to get worse before they get better.

Here in the U.S., the many flaws in our healthcare system are showing their ugly face. The U.S. doesn’t have universal healthcare, and the problems with that have become horrendously obvious: it’s disgusting, frankly, that a woman who was treated for COVID-19 then received a hospital bill of almost $35,000, according to Time. It’s disgusting that people have to be terrified of getting laid off, not just because of the loss of income, but because this would leave them with no health insurance if they, their spouse, or their children do get sick. It’s disgusting that god-only-knows how many people aren’t getting tested because they’re afraid of the bill.

In a country this wealthy, things shouldn’t be like that. I’ve written (and spoken) many times about how desperately the U.S. needs a universal healthcare system — ala the Medicare for All plans promoted by Bernie Sanders, Elizabeth Warren, and so on — which, politics aside, is an initiative that the majority of the American people support. And seriously, if there was ever a time where the need for universal healthcare was most obvious, it’s now. When you desperately need medical care, you can’t go shopping for the best deal. When people are dying, nobody should be be profiting from it. And the general excuses about “can we afford it?” look particularly inane now, as it becomes clear just how important government spending has become in combating COVID-19. As I wrote on Truthout in 2016:

I’ve watched patients die from preventable conditions because they couldn’t afford treatment. In nursing homes, sick people are warehoused into less-than-adequate conditions, with families forced to pay yearly costs of $90,000 a year to put their loved one in a shared room where they and the 30+ other patients on their unit will be taken care of by only two aides. Because of money issues, people lose limbs that they shouldn’t need to lose. Patients decline when they shouldn’t have to. An increasing number of people don’t go to the doctor, even when they develop terrifying symptoms such as mysterious lumps in their throat, because they just can’t afford it.

Yes, having universal healthcare wouldn’t have prevented COVID-19 from coming to the United States, though the situation certainly could have been a lot better if the current administration had taken the threat seriously from the start, to say nothing of the fact that public health agencies like the CDC have been direly underfunded, year after year. However, the U.S.’s ability to climb out of this hole is deeply impacted by our ruthless, for-profit neoliberal healthcare system, as the Guardian has explained. If there was ever a time to take a long, hard look at our issues and make big changes, it’s now…

… or, well, actually, the time to make changes was yesterday, or last year, or a decade ago, but until time travel comes around? It’s now.

Remember the most vulnerable populations, okay? Healthcare workers, the homeless, the elderly, and more.

Speaking as a former healthcare worker — and as someone who is married to a current healthcare worker, my wife, who is actually working in a hospital emergency department as I write this — it’s so, so, so important for people to understand what’s at stake here, take social distancing seriously, and do everything possible to flatten the curve. COVID-19 cases haven’t even peaked yet, and preventing more infections is the only way to keep the U.S. medical system from getting overrun by cases, impacting not just COVID-19 patients, but anyone else in need of medical care.

Every day that my wife is working, I’m terrified at the thought of her getting this. Would we survive? Probably, because we’re young, healthy, and not particularly at-risk. But that’s not guaranteed. And regardless of our personal safety, it’s terrifying to consider the plight of marginalized communities out there, across the world, who aren’t so lucky: from people in refugee camps, to the homeless population, to working class immigrant populations, to those with prior health conditions, to the newly unemployed, to the residents of nursing homes — the latter of whom are an elderly, immunocompromised population packed into close quarters, facing not just a high risk of COVID-19 infection, but the psychological toll of quarantine.

Again, though, the best thing that everyone can do right now is stay at home, self-quarantine, and buy medical workers the time they need so that hospitals don’t get overwhelmed. This is the time to catch up on Netflix. It’s the time to work on all those old art projects you’ve been putting off. You get the idea.

For U.S. readers, if you’re looking to get a sense of how your state is doing at flattening the curve, I highly recommend you check out the state-by-state projections available on Covid Act Now. For example, here is the current figures from my location, here in New Hampshire, where we currently have a “stay-at-home” order:

Anyhow, best wishes to all of you out there reading this. Hope you’re staying safe, healthy, and well.

Coffee Thoughts: March 2020

Welcome back to Coffee Thoughts, folks. The March edition, to be precise. Arm yourself with a mug, take your first sip, and let’s get rolling.

First off, let’s discuss the one issue that everybody (and I mean everybody) is talking about, everywhere in the world. C’mon, you know what it is. What else could it be, but … what, you thought I meant the U.S. presidential election? Nah, more like …

Coronavirus

Hey, you were warned. Hopefully you washed your hands. And seriously, folks: speaking as a former healthcare worker, please do wash your hands. Thoroughly. Frequently. And yes, yes, count to 20 while you do it. None of this “put-your-hands-under-the-water-and-splash-a-bit-and-take-them-right-back-out” nonsense that some people do.

Now, knowledge is power, and as COVID-19 continues to spread, one of the most important things people can do is learn more about what it is, who is at risk, and how to respond. To that end, as the Guardian explains, it’s important to know that COVID-19 is highly contagious. If it continues to spread, people all over the world will be at risk. At the same time, you should be aware that while the death rate is relatively low — deadlier than the flu, but around 2 percent in, for instance, the Hubei province — there are still thousands of people who have died, so as John Oliver put it, you should strike a balance between being cautious and not, you know, letting hysteria take over to the point where you go swallowing bleach, or something similarly dangerous.

Sadly, the people who will be most impacted by this are the same ones who usually suffer during such times: the elderly, the immunocompromised, and the economically disadvantaged. When it comes to societal inequality, as Bill Gates has said, according to CNBC, the healthcare systems in low-income nations are already struggling, and thus, “A pathogen like the coronavirus can quickly overwhelm them. And poorer countries have little political or economic leverage, given wealthier countries’ natural desire to put their own people first.”

Even here in the U.S., though, it looks like poor people are going to suffer a lot more than rich people will, because it seems the pharmaceutical industry is still up to its usual price-gouging bullshit: a few weeks ago, health secretary (and pharmaceutical lobbyist) Alex Azar refused to promise that if/when a coronavirus vaccine becomes available, that it would be affordable to all Americans. What he’s saying, in essence, is that the pharmaceutical industry is hungry to profit off the misery of sick people. Now, for one, fuck that. Two, that’s classism at its finest. And three, it’s bad science, because vaccines work most effectively when everyone gets them, allowing herd immunity to kick in.

So yeah, this is scary. You know what else is scary? Racism. And another thing that is absolutely, 100 percent not acceptable — and, sadly, is also happening right now — is that Coronavirus has sparked a wave of anti-Asian racism, as I wrote for Grunge, with countless individuals and/or businesses of Asian descent being bullied, ostracized, or even beaten, simply because of the fact the COVID-19 started in China. This sort of insane xenophobia and racism needs to stop, immediately.

Now, for something else

Okay, time to shift to something a bit less stressful, huh? Long, deep breaths. Here’s Nova, the ever-noble companion, being a dog, and doing dog things:

The struggles of finding gender neutral baby clothing are all-too-real

As a new father (almost four months!) I wanted to take a moment to mention this great article on Vox, by Chris Chafin, which discusses the real-life struggles of trying to clad your baby in clothing that isn’t hot pink or baby blue, and questions why society even cares so much about a baby’s gender, to begin with.

Until you become a new parent (or go shopping for somebody else’s baby, or what have you), it’s easy to underestimate just how aggressively the clothing industry wants you to clad your infant in the most ridiculously, stereotypically-gendered colors, prints, and styles imaginable. Now, as the father of a baby girl, I don’t have any issue with the color pink … or, say, butterflies. When she gets old enough to make her own fashion decisions, if she likes pink butterfly garments, she can happily choose those for herself. While she’s a baby, though, it’s downright ridiculous that the fashion industry tries to shove gender norms down your throat, to the point where it’s sometimes nigh-on impossible to find clothes that are, say, green, brown, red, orange, or so on.

The industry’s fixation on an infant’s gender is clearly unhealthy. So hopefully, as society evolves on topics of gender, in general, this is another area where we can evolve, as well.

Anyhow, that’s all for now. Have a great Monday, everybody!

Coffee Thoughts: February 2020

Hello out there, and welcome to the second monthly edition of Coffee Thoughts! As stated on the last time around, this space will cover some short form notes, observations, and (if we’re lucky) “insights” about the past few weeks, shared over a cup of coffee.

Happy Tu BiShvat!

To start this off, let me wish a happy Tu BiShvat to any fellow Jewish readers out there!

And for all you non-Jewish readers, a quick little explanation: Tu BiShvat is the Jewish new year for trees, celebrated annually on the 15th of Shevat. Now, here in climates like New Hampshire (rather than Israel), it can seem a bit odd to celebrate trees in the midst of snowstorms. That said, I think it could be argued that there’s no time that trees seem more admirable — and just outright impressive — than in the thick of winter, when these ancient giants are standing their ground in the snow, hunkering down as they await the blooming flowers of spring.

Anyhow, if there was ever a time in history where humans really need to value trees, the planet, and the environment in general, it’s now. In light of those fires in the Amazon and Australia, to say nothing of the fact that Antarctica just hit 65 degrees the other day — the cold continent’s warmest recorded temp in history — environmental action needs to happen sooner, not later, for the sake of every form of life on Earth.

February Thoughts

February is a short month, but it’s an important one, which is used to draw attention to several significant causes. One of these is American Heart Month, honored since 1963. As I wrote for Join Us For Good, one in four U.S. deaths continues to be caused by heart disease, and the situation is even deadlier for women. One of the major factors in this, as often noted by famed cardiologist Dr. Paula Johnson, is that the “textbook” heart attack symptoms tend to be experienced by men, whereas women often display entirely different symptoms: as a result, the scary truth is that one in three American women die of heart disease. Bringing more awareness to this disparity, often dubbed the “heart attack gender gap,” should be an important goal for every February.

February is also, of course, Black History Month. This tradition, first started as a week-long celebration of Black American history, achievements, and pride, by the noted historian Dr. Carter G. Woodson in 1915, has become a hallmark of every February.

In honor of Black History Month, here are some notable quotes from Malcolm X, a man who always stood up for his beliefs, empowered others, and become one of the dominant cultural influencers of the 20th century:

“A man who stands for nothing will fall for anything.”

— Malcolm X

“I believe that there will ultimately be a clash between the oppressed and those that do the oppressing. I believe that there will be a clash between those who want freedom, justice and equality for everyone and those who want to continue the systems of exploitation.”
— Malcolm X

Blood Donations

Finally, to close this out, I think we all know it’s been a crazy cold and flu season. Having a newborn is especially hard in winter, since the little one picks up every cold that brushes by.

That said, when the American Red Cross asks over and over again for blood donations, they’re doing it for a good reason. I’ve been giving blood since I was 16, and if there’s one thing I’ve heard over and over again, it’s that winter is the time that such donations matter most. It’s also the season where they have the hardest time roping people in.

Carve some space out of a day. You’ll save lives, feel good, and give another family a happy February.

Cheers, folks. Talk to you again soon!

I thought I could fix my Alzheimer’s patients. I learned to help them instead.

I thought I could fix my Alzheimer’s patients. I learned to help them instead.

Alzheimer's - Vox - Nicholas Conley

My first day in a nursing home was one of the most traumatic events of my life. I’d taken all the classes. I’d done the required clinical internship. I had the knowledge and the firsthand experience. But nothing prepared me for that first day on the floor.

It was a madhouse. Nurses were scrambling everywhere. Residents were constantly calling for help, ringing their call bells, but the workers were too busy jumping between patients to answer them. Many patients were unable to help themselves, even in small ways. Personal hygiene wasn’t optimal.

It wasn’t because the nurses were apathetic or incompetent. Trust me when I say that the people I worked with were some of the kindest, most giving people I’ve ever met. But the whole system is a chaotic mess; the result of a structure meant to warehouse people, where patient interests and business interests are often in conflict … READ MORE.

REBLOG: True Tales Live: “Day One” (Video)

Nicholas Conley

This past month, I was honored with the opportunity to appear on the second season premiere of the local NH television program, True Tales Live.  As with the True Tales radio program that preceded it, True Tales Live seeks to give storytellers the opportunity to share actual stories from their life.

For this episode of True Tales Live, I shared my story, “Day One,” where I delve back into my early days working in a nursing home, as a nursing aide on a longterm care unit, and how that experience changed my views, my perception, and my way of trying to be there for other people.

Though the series can be watched on local TV in the NH area, everyone else can check it out here on the official True Tales YouTube! My section begins around 46:50, in the video below:

Other storytellers in this episode include Arnie…

View original post 26 more words

True Tales Live: “Day One” (Video)

This past month, I was honored with the opportunity to appear on the second season premiere of the local NH television program, True Tales Live.  As with the True Tales radio program that preceded it, True Tales Live seeks to give storytellers the opportunity to share actual stories from their life.

For this episode of True Tales Live, I shared my story, “Day One,” where I delve back into my early days working in a nursing home, as a nursing aide on a longterm care unit, and how that experience changed my views, my perception, and my way of trying to be there for other people.

Though the series can be watched on local TV in the NH area, everyone else can check it out here on the official True Tales YouTube! My section begins around 46:50, in the video below:

 

Other storytellers in this episode include Arnie Alpert, Emilie Spaulding, Gail Licciardello, Joanne Piazzi, and Annette Slattery. Definitely worth watching, and to everyone behind the scenes, thank you for putting this program together.

Why the United States Should Have Universal Healthcare

(Note: I originally posted this on Medium)

In the United States, healthcare has been one of the biggest political battles of the decade. As a healthcare worker myself, it’s an issue that strikes close to home. My years of experience caring for people with dementia, traumatic brain injuries, tetraplegia, cancer, and more has given me a firsthand look into what our healthcare system is like at the ground level, and it’s a different world from the vague concepts that politicians volley back and forth at each other.

Healthcare shouldn’t be a messy political fight to begin with: it’s an issue of basic human rights. And what all too often gets lost in these scuffles are the people most in need.

Our police forces, fire departments, libraries, and even our military are all socialist institutions. Few people would argue for the idea of a private fire department that refuses to rescue people from their home because the fire itself is a “pre-existing condition.” So why would we ever frame the issue of healthcare differently, when it’s exactly the same thing?

I’ve watched patients die from preventable conditions because they couldn’t afford treatment. In nursing homes, sick people are warehoused into less-than-adequate conditions, with families forced to pay insane yearly costs of $90,000 a year to put their loved one in a shared room where they and the 30+ other patients on their unit will be taken care of by only two aides. Because of money issues, people lose limbs that they shouldn’t need to lose. Patients decline when they shouldn’t have to. An increasing number of people don’t go to the doctor, even when they develop terrifying symptoms such as mysterious lumps in their throat, because they just can’t afford it.

hospital-643961_960_720

Something has to change. Looking at other countries, the practical solution is universal healthcare — preferably a single-payer system.

Though some politicians might argue differently, universal healthcare isn’t a radical idea. The majority of Americans actually support the concept. In the rest of the developed world it isn’t even an argument, it’s a given. Of the 25 wealthiest nations in the world, the United States is the only one that doesn’t have it. The majority of these countries use single-payer. Even countries like the Netherlands — with its “managed chaos” form of healthcare — are still universal.

The United States has the highest health expenditure per capita of any country. With all that money being spent, you’d figure that we’re all super-healthy — but not really.

In the latest survey by the Organization for Economic Cooperation and Development, which assessed 13 developed nations including Norway, Australia, and the U.K., the USA had the lowest life expectancy, the highest rate of infant mortality, and scarily high rates of heart disease and amputation as a result of diabetes. Of all the developed countries in the world, the United States possesses the dubious distinction of having both the most expensive healthcare system in the world — and the least effective.

pi2

In the past year, taxpayers in the United States picked up 65% of this country’s total healthcare coverage, about $2.1 trillion in taxes. Keep in mind, this is what we’re already paying in taxes. On top of that, let’s take into account how much money each of us also spends on our private healthcare plans every month, combined with how much we have to pay on personal procedures that aren’t totally covered by that plan.

But then Canada, which has a single-payer system, pays almost the same amount in tax funded dollars: 70.7%. In other words, the United States already pays the same amount of money that could fund universal healthcare — we just aren’t getting any the benefits. Although Canada’s system certainly has flaws, Canadians still overwhelmingly approve of universal healthcare as a whole, with 94% calling it a source of collective pride.

That’s not all: if we want to get serious about cutting the deficit and don’t want to rip Medicare to shreds, many studies by economists such as Dean Baker have shown how a single-payer healthcare plan would actually be a great solution.

Some point to the idea of “free market healthcare” as an alternative option, but in practice this would price out the poor. This is a very real issue, because if a working class person with a relatively low income — say, a mechanic — comes down with brain cancer, the cost of treatment would greatly exceed their income level, leaving that person the option of either begging their friends for tens of thousands of dollars, or accepting that they have to die without receiving treatment.

In a free market healthcare system, unregulated health insurance companies would be financially rewarded for not accepting sick customers, and punished if they did accept them. Healthcare companies reap profits every month when their customers are healthy, and lose money when their customers are sick. This means that a healthcare company that’s looking to profit will refuse applications from customers who are already sick — in other words, patients with “pre-existing conditions” — exactly the people who need healthcare the most.

blood2

Let’s not forget the pharmaceutical industry, which is a whole other can of worms. The United States is the only developed country in the world that allows drug companies to set their own prices, which is why last year Turing Pharmaceuticals was able to jack up the price of Daraprim from $13.50 a tablet to $750. Unlike other countries, where prices are set as part of a bureaucratic process, the US system opens the door for these companies to step in and maximize profits, as if a lifesaving drug was comparable to a pair of jeans.

But healthcare shouldn’t be about profit. It deserves the same priority in our society that we give to the police, the military, and the fire department, because healthcare isn’t like buying a flat screen TV: people don’t want healthcare services for their enjoyment, they need them, and a person should not be thrown into bankruptcy because on one unlucky day an icicle dropped onto them from a rooftop.

Ideally, the entire purpose of government in the type of democratic society that we have today is to serve the needs of the people. As a healthcare worker, I can’t possibly see how this principle doesn’t apply to health. I’ve been there when people died, seen people suffer when they shouldn’t have had to, all while corporations mark down record profits from the suffering of human beings. So yes, I do believe that “healthcare is a right, not a privilege,” and I’m not alone. The evidence shows that the various universal healthcare systems that exist in every other developed country are both less expensive and more effective than what we have in the United States.

Again, this shouldn’t be a political battle. It’s an issue of basic human rights. So when will we get with the program? Hopefully soon.

Favorite 12 Posts of 2015

It’s crazy to realize that I’ve been writing blogs for Writings, Readings, and Coffee Addictions for a few years now, and to look back on how much has changed in that time. Every year is a new adventure, a new saga of highs and lows, and 2015 was the biggest year yet.

Last year saw not only the release of Pale Highway, my proudest achievement to date, but also publications on Vox, Alzheimers.net, SFFWorld, and more. This blog gained more followers in the second half of 2015 than it did in all of the preceding years combined. Of course, I also wrote quite a few blog posts, and in order to look back on the last year, I’d like to look back on the ones that meant the most to me.

I originally meant to make this a top ten list, but why limit oneself to artificial rules? After straining to narrow them down, I decided to settle on twelve instead.

spidey2choice

12. Why Superheroes Matter

To start with, a disclaimer: the only reason that this doesn’t rank higher is that I actually wrote it toward the end of 2014, not 2015 as I originally thought. Still, I wanted to give it an honorable mention.

Why? Because this is one of the most personal blogs I’ve ever written. It’s not just an analysis of why superheroes have become such a huge part of popular culture, but also a personal tale of the impact that characters like Spider-Man had on my childhood, and how they helped me to become who I am today.

DSCN3736

Nicholas Conley – Morocco – Sahara

11. Morocco

Travelogues are challenging to write, because it’s such a struggle to isolate the moments that most define these experiences, to pinpoint what one takes away from a new culture. Going to Morocco last winter, experiencing the Sahara Desert on camelback, was a mind blowing experience that I won’t ever forget.

sunset

10. Echoes of Leaving

The single most defining moment of my post-high school young adulthood was when I first hit the road, exploring the country on my own terms, going from state to state on a daily basis. Echoes of Leaving, a blog post named after one of my first flash fiction publications, is a nostalgic look back at a time that truly defined so much of the rest of my life.

arkham

9. Pharmaceutical Nightmare

Now, onto a blog that tackled a recent news story. The one good thing about recent Turing Pharmaceuticals controversy was that it raised awareness about a very real problem facing the United States, where drug companies can exploit the sick to reap huge profits. It’s something that we need to keep talking about until real change happens.

coffe_up

8. Five Things More Important than the Color of a Starbucks Coffee Cup

Seriously. Stemming from what was undoubtedly the most ridiculous “controversy” of the last year, the best thing we can learn from the #StarbucksRedCup nonsense is that arguing for the sake of arguing does nothing to improve society, and that we have real concerns that we should work to find common ground on.

pale_books

7. Cover Reveal: Pale Highway

After years of hints and suggestions, this was the moment where I finally got to spill the beans and show Pale Highway to the world for the first time. It was all new then, and I remember how my heart was pounding as I finally posted the cover image. It’s insane looking back, realizing how long ago this already feels!

79

6. Thank You, Lane

It’s amazing how much the simple kindness of a stranger can impact a person. Though I might never see Lane again, I can’t thank him enough for helping me out of a tough spot.

hoge1

5. Hogewey: A Better Kind of Nursing Home

Working in Alzheimer’s care, one of the greatest tragedies that I’ve seen is the system itself, and how it doesn’t give proper attention to the individual. As I mentioned during my radio interview last week, Hogewey is a “dementia village” in the Netherlands, and it represents a potential beacon of hope for the future. Let’s hope that someday, there will be many more Hogeweys all over the world.

pale_proof

Nicholas Conley – Pale Highway

 

4. The Proof Has Arrived

Wow. Wow. That moment where Pale Highway came in the mailbox for the first time, that first experience holding it… there are few forms of happiness that are as deeply personal as seeing one’s dream realized in physical form, holding it, knowing that all of the work paid off.

Alzheimer's - Vox - Nicholas Conley

Alzheimer’s – Vox – Nicholas Conley

3. I’m on Vox!

Okay, so this is really more of a tribute to the Vox essay than it is to my blog post that links to it. But the reason I’m listing it here is that this was really the first time I ever publicly wrote about my experience with Alzheimer’s patients, and the outpouring of responses I received was truly transformative, as I got my first true look at how so many, many people connect to this issue. This is one of the pieces I’m most proud of in my writing career so far, and I hope that I’ve done my small part to raise awareness about the reality of Alzheimer’s disease.

Coffee

2. Top Five Coffee Moments  

Okay, so I have to admit, while this post was fun to write, the real reason that it’s here is because of you. And by that, I mean everyone who replied to the prompt. While it was enjoyable to think back on my top five Coffee Moments , it was an absolute blast reading all of the Coffee Moments that you guys came up with.

Cheers, all!

Beach_GabrielSchist

Pale Highway – Nicholas Conley

 

1. Release Day: Pale Highway

Of course, you knew this had to be number one. Out of everything that occurred over the course of 2015, this was the achievement I was most proud of. I’ll just finish this off with a quote from the blog itself, as the Nicholas of that day can explain the feeling better than I can:

What I’m feeling right now is so surreal that I can’t quite put my finger on the right word to describe it. I wrote Pale Highway because I believe that people with Alzheimer’s—people who suffer from a neurodegenerative disease that cannot be prevented, cured or slowed down—deserve recognition. It’s crazy to look back on that first day I began typing this story, or the first day that I set foot in a nursing home and met the many residents who lived there, amazing human beings would have such an unexpected impact on my life. Pale Highway is a book inspired by my connection with these courageous people, conceived during my experiences in healthcare, and finally born here, now, today, in the form of this book that I’ve spent the last few years pouring my heart into. And so now, here it is, and I hope you all enjoy the read.
Admittedly, now that we’re in April, 2016 isn’t quite a “new year” anymore. But still, happy new year to all of you, and I hope to continue seeing all of your icons and text for years to come!

 

coffe_up

 

 

 

The Freedom of a Person with Alzheimer’s

Alzheimer’s is still the sixth leading cause of death in the United States. Current estimates state that Alzheimer’s costs the United States about $172 billion a year. Even more shocking, only 45% of Medicare patients diagnosed with Alzheimer’s are informed of their diagnosis, according to medical records and Medicare surveys. The reason? Because too many people believe that telling a person that they have an Alzheimer’s diagnosis is sentencing them to “a fate worse than death.”

This disregards the fact that people with Alzheimer’s are still people, first and foremost. Having worked with so many of them, I can attest to the fact that people with Alzheimer’s experience the same complicated range of emotions that those without Alzheimer’s experience: love, happiness, pain, anger, relief, and sadness. They think, they feel, they have opinions. Treating these people as less than human, calling their condition “a fate worse than death,” is an abhorrent insult to the real life struggle that people with Alzheimer’s have to endure every day.

chair

Furthermore, not informing people of their Alzheimer’s diagnosis violates the most basic freedom that all human beings are born with: the ability to make decisions for oneself. A person who isn’t told that they’ve been diagnosed Alzheimer’s will still feel the symptoms, still notice the memory loss. Perhaps most importantly, one will be robbed of the necessary time to make plans for oneself, to plot out the direction that one’s life will take when the Alzheimer’s begins to set in more deeply, at which point communication becomes more difficult.

A person with Alzheimer’s deserves the same rights as anyone else. We should never forget that.

midnight_beach3

More Alzheimer’s Reading:

Vox: I thought I could fix my Alzheimer’s patients. I learned to help them instead.

Alzheimers.net: Why I Wrote a Novel about Alzheimer’s

Headstuff: 10 Surprising Facts about Alzheimer’s

Big Al’s Books & Pals: Guest Post

New Alzheimer’s Article on HeadStuff

I’ve written a new article about Alzheimer’s, this time for the Brain/Body section of HeadStuff.org.  Whereas my last piece was a personal essay, this one is a technical analysis of what Alzheimer’s is, what Alzheimer’s does, and where it comes from.  Check it out below:

HeadStuff.Org: 10 Surprising Facts About Alzheimer’s

dem-norm-mci-alz-702x333

Enjoy the read!

Plenty of news coming up in the near future, as Pale Highway‘s \release is now only a few short days away! Hard to believe that it’s almost here after all this time. In any case, I’ll see you all on Tuesday, as Gabriel Schist meets the world.

Have a great weekend!