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.
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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
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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.
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"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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