What it’s like to have Alzheimer’s disease

One of the delightful mainstays of Upstate’s weekly radio program, “Health Link on Air” is a segment from psychologist Rich O’Neill PhD. This week’s was particularly poignant, especially for those whose families have been touched by Alzheimer’s disease or dementia.

Here is O’Neill’s story (or watch the video):

Well folks, my wife and I just got back from China, a bus tour of four cities in seven days, which, as our guide said,  is like smelling flowers from a galloping horse.

Anyway, a few days in, we’re visiting Shanghai, home to the recent Olympics, and the group is going to a street market for the afternoon. I’m not a big shopper so I asked our English-speaking Chinese guide to write the Chinese characters for the name and address of our hotel, and the restaurant the group was going to next for dinner, on a piece of paper, so I can cab to the hotel to run on the treadmill and meet again later. And even though I don’t have a cell phone with me, I ask him to write his phone number, just in case. We agree to meet again at 5:10, and off I go.

I flag a cab, give the driver the paper, he nods and off we go onto the highway into Shanghai’s bumper to bumper. Now, it’s 95 degrees and steamy hot, so I tap on the plexiglass window between me and the driver. I stick out my tongue, wave my hand in front of my face, point to the air conditioner vent, and then point up, hoping he’ll turn up the air. Instead, he starts yelling and zipping in and out of traffic, cutting people off, blowing his horn.

Next time we’re stopped I do my face and fan, but this time put my finger right on the AC vent and then the control knob. He starts laughing, turns it up, and stops the Indianapolis 500 imitation.

And  30 minutes later, like our guide estimated, here’s the hotel.

I have a good run. When it’s time to head back, I give the doorman the piece of paper with the restaurant address. He gets a cab and tells the driver where to go. The driver nods and takes off, but before we are out of the driveway, he stops to look at a map and then taps something into his GPS. Now Shanghai has over 20 million people and is gigantic, so I’m hoping he knows where he’s headed. But while we’re stopped I do my tongue-out, hand-wave, AC vent pantomime. He get it,  so I’m cool and not too concerned for the moment, just enjoying the sights.

A few minutes later, though, I realize we’re not on the highway the other guy took to get here, and I’m wondering if this guy knows where we’re going. Sure enough, he pulls over and does some more map/GPS consultation. I hand him my paper again with the name and address. He nods, taps something into the GPS that talks to him in Chinese, he u-turns and off we go. I left a half hour early, so there is still plenty of time.

But the clock’s ticking and the meter’s clicking.

No highway, still, and at the next light he rolls down the window to consult with another cabbie who gives him the universal “who knows?” shoulder shrug.

I remember our guide had also given us all a printed card with the name, address and phone number of a pearl shop in the street market as a rendezvous for the shoppers before heading to the restaurant. I hand that to the cabbie. He calls them but doesn’t sound happy. I give him the guide’s handwritten paper again, point to my failsafe–the guides’ phone number. He dials… but no answer. Shrugs. Takes off again. Uh Oh!

Could this guy be taking me for a ride to jack up the fare?

There is a cabbie license with a picture and ID number on the window and a phone number for what I guess is the taxi commission, but isn’t there another one next to it with a picture of another young Asian guy — and I hate to admit this — but can I tell, looking mainly at the back and side of the cabbie’s head, who is who? I’m not even sure if he’s either one of the guys in the pictures.

I think briefly about getting out of the cab at a light and into another one, but who knows how that would go? Is that OK in China like in New York City if your driver is lost? Or would I have to pay him anyway? If I do get out, is there enough time to get there by 5:10 still, or should I just go back to the hotel? And, do I have enough Chinese money to do two cabs?I know it’s about 16 Yuan to the dollar, but are these Chinese bills I’ve got all Yuan or some other denomination? Some cabbies take American dollars, but even if he did my jetlagged brain is having trouble with the math.

It’s 5:05 now. Will they wait for me? What would I do then?

Another light, and nothing at all familiar in what I’ve seen yet compared to the last cab ride. I point again to the guide’s phone number. Dials, rings, answers. YES!!! Talking. Nodding. Agreeable sounds in any language. The international thumbs up to me.

Five minutes later, 5:10 on the money, he pulls over to the curb and points to the sign on the building and then to the paper. Can I tell if they are the same words/characters? No, and no guide and no familiar faces around. Should I get out, and pay him? It looks sort of like the market place I left. OK, leap of faith time.

I pay, and only have 17 of what are probably Yuan left. I get out, trying to compare the unknowable characters on the paper and the building. No restaurant on the ground floor. Could it be upstairs? Where is it? No police around to ask. No guide, no fellow travelers. So I stand on the corner visible from all directions, hoping somebody who knows me will see me.  The street is crowded and loud. It’s still blazing hot. I’m parched, hungry, and feeling at the mercy of strangers who I hope will be kind to me.

“Richard.”

Did somebody say Richard?

“Richard?”

Ah! My guide, with a smile, who walks me two doors away and upstairs to my wife and friends.

Afterward I realize this was like what my 94-year-old mother, and others like her with Alzheimer’s disease, go through every day: Who? What? Where? When? Why?

Amazing, huh?

Watch the video.

About these ads
This entry was posted in community, dementia, Health Link on Air, psychiatry and tagged , , , , , , , , . Bookmark the permalink.

One Response to What it’s like to have Alzheimer’s disease

  1. RG says:

    Very interesting piece. Reminds me of the book I just finished, “Turn of Mind” by Alice LaPlante. It’s a page-turner, and a very effective portrayal of someone with Alzheimer’s. Definitely should add it to your to-read list.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s