I Am Young And I Have Alzheimer's: 6 Awful Realities
Millions of Americans have Alzheimer's. But if you're really unlucky, it won't even wait until you're old -- when forgetting your pants is a bit more socially acceptable -- before it starts eroding your brain. Kevin Ducharme has seen his mother succumb to the disease, and now he's learned that he has it himself. We're giving him a chance to share all he knows about it, while he's still able to share anything at all.
It Can Hit You Young -- Very Young
We think of Alzheimer's patients as decrepit septuagenarians holed up in nursing homes, still thinking the war is going on (Which war? Korea? Vietnam? On Christmas?). But then there's early-onset Alzheimer's, which strikes, well, early. More people have heard of EOAD nowadays thanks to Terry Pratchett, but even he was diagnosed when he was almost 60. The disease hits other people in their 40s. It can even kick in when you're a teenager.
Your puns about "old-timers' disease" are now unfunny and inaccurate.
My great-grandmother, grandmother, and mother all got the disease. Then, after I first sat down to write this very article -- which at the time was about caring for my late mother -- my sister and father pointed out a whole lot of similarities between how my mother acted once upon a time and how I act now. A doctor looked me over and confirmed the diagnosis. I've got Alzheimer's at 41, I've probably had it since my 30s, and within the next decade, my mind's going to go.
While you're hoping the release of new Star Wars movies make you forget the prequels, that's actually terrifying for me.
My mother was diagnosed at 46, and back then, it was practically unheard of to get it so young. The state wouldn't pay out any benefits, and not a single lawyer would take the case. It didn't help that we won the genetic lottery with an especially rare type of the disease. But the family got together, represented her ourselves, and took the case all the way to the state supreme court, which was the closest we could get to suing God for what was happening. After four years of court wrangling, we won and got all those benefits in a single lump sum. But you'll forgive us if we didn't celebrate too hard. She still died a couple years later. We'd known she would.
Your Random Personality Disorder Might In Fact Be Alzheimer's
Some years ago, doctors examined me and diagnosed me with depression. Then anxiety disorder. Then personality disorder. Then agoraphobia. The various medications didn't appear to do any good, but I took them, because I'd literally be crazy not to. But now doctors have given me a revised diagnosis: "Turns out you had Alzheimer's. Sorry for the years of pills which were entirely useless and possibly harmful. No, we don't have any replacements. No one's invented any."
"You can try inventing some, but frankly, I don't think your brain's up for the task."
My mother went down the same path. Both of us were social, outgoing, and optimistic before the brain changes. She received her own set of misdiagnoses, getting labeled as bipolar, having night terrors, and that most deadly of afflictions: restless leg syndrome. The fact is that, even with presumed Alzheimer's cases like mine, it's flat-out impossible to diagnose the disease until after the patient has died and doctors chop up your brain like they're paranoid about zombies. When you hear someone has been diagnosed -- whether it's me, your grandma, or Ronald Reagan -- that means they've exhibited signs of dementia and doctors have done tests to try to rule out other possible causes. In my case, we've got a pretty good idea of what's going on, thanks to my family history. But many others don't have that advantage.
If Alzheimer's makes you wander into traffic, no one will ever know why.
The number of people who have Alzheimer's is way higher than most of us think. It may well be the third leading cause of death after heart disease and cancer, but no one notices because it's expected that the elderly will peter out mentally. But let me tell you, when you get it young ...
You Do Notice How Much Your Brain Slows Down
Right out of high school, I was tested and had an IQ of 158, for whatever an IQ test is worth. Last year, a psychiatrist had me take some more tests, and I still scored at a genius level in most categories. But then came the categories where speed is involved, and the scores plunged. It was a confirmation of what I'd noticed for a long time, but had never been able to firmly explain.
"So that's why it takes so long to untangle my earbuds!"
"No, sorry. That's still a mystery."
When you find out you've got Alzheimer's, you start testing yourself every day. My preferred method is video gaming. That may be where I see the difference clearest. I sit down and play Path Of Exile now, and I see how much faster everything seems, and how much harder it is to keep up. The same difference appears when I work on something slightly more productive. I used to repair computers, but now when I do even a simple job, like hooking up multiple monitors, I see time fly by me as I hobble along.
My mother slowed down the same way. For years, she had this hobby of turning dried flowers and similar stuff into fancy wreaths. Then came my sister's wedding, and we saw her struggling for the first time to put those things together, becoming totally miserable and frustrated in the process. At the time, we giggled and said, "Mom's stressed out again. Better just leave her alone and hope she doesn't flip out." Only later did we realize what was going on with her.
We would have helped, but even with Alzheimer's, she was still better than us at it.
For people 30 years older than me, we think this kind of retardation's natural. But I know that it's not, and maybe we shouldn't consider it normal for the elderly, either.
Losing Your Ability To Communicate Happens In Stages
If your particular variety of Alzheimer's eats away at the language centers of your brain, you can say goodbye to regular conversation. I'm not there yet, but I see it beginning. For starters, it's difficult now to tell when people are done speaking. I tend to cut people off mid-sentence now, and my diagnosis is not jerk-itis; it's Alzheimer's. Things like grocery shopping become difficult. I often have to leave without buying anything when all the people talking leave me disoriented and confused. I space out 'til I'm safe at home.
Self-checkout is frustrating enough without a melting brain.
If things progress like they did with my mother, I'm going to suffer from aphasia when my language skills truly fall apart. I saw hers decline steadily, as the ideas in her head stayed complex, but she couldn't express them with the right words. For example, take something you say frequently, like "Let's go down to the mall, pick up some pretzel dogs, then make fun of people buying chain wallets at Hot Topic." When aphasia first approaches, you'd instead say "Let's go to the mall and get hot dog pretzels, then make fun of people at Hot Topic." In the mid stages, that becomes, "I want hot dogs baked into things that hot dogs should not be baked into, and to make emo tweens cry." Then come the late stages: "What are those things that are like dicks in a donut? I want that. Those kids with the hair, I hate them."
Your friends try to fill in the blanks. "You want a sausage roll?" No. "You want to beat up white kids with dreadlocks?" Inexplicably, no. That's not what you want today. You want a pretzel dog. You want to heckle children who look like extras in a Tim Burton film. But you can't say that. You get frustrated. Your very specific desires just become "a place, with a thing you like doing."
"No, that's NOT the thing, that's the THING! I wanted the thing!"
Five months before she died, my mother called my sister and said, "People in my house stealing the thing! The thing. They're taking it!!!" My sister struggled to figure out what the hell she was talking about, and she prepared to dial 911. Then Mom started laughing, saying, "It's that day, the day I love. That day!!"
It was April Fools' Day. My mother always was a big prankster.
You Can't Handle Even The Slightest Change
Imagine you wake up one morning and your computer has switched from a PC to a Mac, and the keyboard is suddenly Dvorak. Now picture trying to play Counterstrike with that while your hands are cuffed together and your head's in a bucket of Jell-O. Now, maybe you can see how change messes with Alzheimer's patients. An advantage of getting an early diagnosis is that I can begin to set up routines, and plan for my future and determine how I'll survive when the final stages come.
"Once a day, at 10 a.m. sharp!"
Routines make everything easier on both the patient and on the caregiver, and any deviation from that routine sparks a mini-disaster. For instance, my mom knew that my dad got home from work at 5:00 p.m. Come 5:01, if he wasn't there, she'd start stressing out, even if I explained that he'd called to say he'd be home at 5:30. For those 30 minutes, she would be a mess, because something changed and she didn't know why.
Don't get me started on stupid daylight saving time ...
Toward the end, there were only 12 food items she would eat. Then it dropped to five. All day, she'd be in bed, watching the same six movies. Then that dropped to one -- Pride And Prejudice. That became her routine. It was what made her feel safe. Not coincidentally, that is also why I fly into a blind rage every time a fancy lady swoons. After watching Pride And Prejudice five times a day for four months, I have acquired that specific type of madness.
You Are Totally Aware Of What's Happening, Right Up Until The End
The classic Alzheimer's patient is an old lady who insists that you're her long-lost husband. The theory is that the brain sacrifices new memories in exchange for retaining the knowledge of how to perform basic tasks. And many cases are like that -- it all depends on where the disease attacks the brain. But it might be the opposite: You forget basic functions, but remember everything else and stay totally aware of the world around you.
"It's 10 a.m., but I don't know how to do this anymore."
That was the situation with my mother. Toward the end, she forgot even the most basic things -- like how to walk. She recognized the people around her, but in her last six months, she forgot how to speak. She was first using very simple and repetitive words, and eventually just pointing. All the while, she was aware of everything that was happening to her. "I have no mouth, but I must scream" would be an apt description.
Later still, she forgot how to eat and drink. She survived like that for six weeks, with a few sips of water here and there. Which shocked the doctors and nurses, because dehydration's supposed to kill you way sooner. At her request, we didn't stick in a feeding tube or anything like that. We also didn't offer any real treatment, and this wasn't by special request. No real treatment existed then. Hey, exactly like today.
You can't really write prescriptions for Shrugs and "I Don't Know"s.
You hear a lot about the fruitless quest to cure cancer, but we've made progress there. Doctors can do plenty to halt or even cure some cases today. Not so with Alzheimer's. Medications ease some symptoms (they don't help much), but nothing slows the disease. So for now, I'm following helplessly in my mother's footsteps by fighting my own battle for benefits and preparing for the worst. If you also have the disease, remember that tens of millions of us are out there to support you. And if you're part of the assuredly vast section of Cracked's readership currently engaged in active medical research, I hope you give Alzheimer's some of your time.
Dedicated to Audrey Marie Bermudez-Ducharme, 6-14-1954 to 08-26-2011, and to all who are suffering with this disease, or have a loved one who is. Kevin M. Ducharme writes music for video games and supports a lot of Alzheimer's groups and organizations. Alz.org is a fantastic place to start. There's also Forget Me Not. Or if you're into death metal and a more aggressive approach, then check this out. Ryan Menezes is on Twitter.
For more insider perspectives, check out 4 Things You Learn Having A Disease Doctors Can't Diagnose and 5 Awful Lessons I Learned Living With A Mystery Illness.
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