What’s So Bad About Having Alzheimer’s?

Every other Thursday, we have Trish Vradenburg as our special guest blogger covering Alzheimer’s issues. Trish is a playwright, author, television writer, and Alzheimer’s Disease advocate. She and her husband George founded UsAgainstAlzheimer’s with the goal of finding a cure or treatment for Alzheimer’s by the year 2020. She brings her legendary humor and wit to the devastating realities of Alzheimer’s, and we’re excited to have her share with us here.

Recently, Margaret Morganroth Gullette wrote an op-ed in the New York Times, titled, Our  Irrational Fear of Forgetting. Basically, Ms. Gullette thinks we’re overreacting to  Alzheimer’s.

I responded to her, in my letter to the editor of the Times. But I didn’t quite get  everything off my chest.

I am happy  that Ms Gullette had such a positive experience with her mother and  Alzheimer’s. Sadly, that is certainly not the case for the majority who suffer and the families that who  care for them.

Mrs. Gullette had the luxury of visiting her mother in an assisted  living home and leaving the chaos at the door when she  left. She didn’t change her mother’s diapers, or suffer paranoid accusations, or deal with inevitable depression. Most families do not have that luxury. They either spend 24/7 with the victim and put a hold on their own lives for 8 to 20 years, or put their mother/father/husband in a nursing  home and go bankrupt.

Mrs. Gullette pointed out that only 1 in  8 have Alzheimer’s after 65 (and entirely ignored the 1 out of 2 who have Alzheimer’s at 85).  But still, 12.5%. That’s not a write-off, that’s an epidemic! It is an outrageous percentage to simply accept. Are you 65? Do you want these odds?

People are afraid  of Alzheimer’s, and they should be.

But this lah-de-dah attitude results in no urgency to get money for research. While Alzheimer’s costs the U.S. $183 billion dollars a year, only an estimated $480 million is spent on Alzheimer’s research. And it’s the 6th leading cause of death in Americans.

Add to this, that it is  only in the last two months that Alzheimer’s even has an official diagnosis possibility with Medicare.

Would she tell polio victims to lighten up? Would she tell Jonas Salk to chill — we can just make more iron lungs?

Cures are cheaper than iron lungs. And certainly cheaper than the $183 billion Alzheimer’s costs the U.S. each year. With estimated Alzheimer’s-related costs entering the trillions by 2050, our nation is marching to bankruptcy, simply by not finding an Alzheimer’s cure.

We need to bring Alzheimer’s to the forefront of our conversation — not bury it.

Only with knowledge will the public  understand that while Alzheimer’s may not be catching, it is rampant, devastating, a national emergency. We must pay attention now.

Like Ms. Gullette, I watched my mother, too. This lioness of a woman disappeared — DISAPPEARED — into the chasm of Alzheimer’s. Unlike Ms. Gullette’s  mother, she didn’t sing songs; she didn’t recite poetry: she didn’t have new  material.

I would love our elder citizens to be able to walk into the  sunset holding hands and accepting the vagaries of aging.

In order to do that, we had better embrace coming out of the closet — as those with HIV-AIDS did — and demand Congress and NIH to give us the resources for a research breakthrough.

Photo credit: maveric2003 via Flickr