Tip:
Highlight text to annotate it
X
More than 5 Million Americans live with Alzheimer's Disease.
It's a long, hard road not just for those who suffer from the disease but also for the
caregivers - children tasked with caring for an increasingly dependent parent.
Four years ago ABC had the chance to put cameras inside a Texas home as a couple took on this
terrible challenge. And my Co-Anchor Cynthia McFadden has followed
the family ever since. Cynthia...
Terry one of the things we have learned over these years is just how little most of us
really understand about the disease itself. I thought I knew a lot about Alzheimer's.
But after Blaine and I took part in an experiment simulating what its like to have the disease,
I found out, I didn't! It was twelve minutes that changed my life.
"I love you, mom." "I love you too!"
Blake Wilson's mother Luwanda came to live with him four years ago. He had just married
his new wife, Georgia five weeks earlier. Blake soon learned it was much harder than
he thought.
"Aw, God. Blake! ...She's gonna drive her car..."
And Later she did. She lit fires, and wondered off.
But Luwanda doesn't look sick and she often seems fine.
Which makes it hard for Blake and Georgia to understand how limited she really is. And
that, leads to frustration and resentment.
"Just tell her to wash her clothes. I'm tired of washing them. I'll bet you a hundred bucks
she knows what to do. Are you afraid... I Mean"
"No, I'm not afraid. You know, I mean it's my mother. You don't understand"
The more we watched the tapes. The more it became apparent how little Blaine and Georgia
really understood what was happening to Luwanda's mind.
"Do you really fell you understand the world your mother now lives in?"
"No"
"What's going on in her head, in her brain"
"I have no idea, I tell ya, I have no idea. I need to understand that. I need to know
what it's like."
"So i told Blaine about an experiment developed by P.K. Bevel, and administered by her colleague
Lori Laborshack.
The experiment helps families and caregivers actually experience what it's like to have
Alzheimer's.
"I understand it is a pretty rough experience"
"It needs to be experienced if it'll help me to understand. I would love too."
"I agreed to undergo the experiment with him"
Could you have a seat please
Our Journey into another world, begins here, in this bedroom where Blaine and I are suited
up with some deceptively harmless looking devices.
Goggles simulating Macular degeneration glaucoma, and cataracts. Conditions that older people
with Alzheimer's often have.
Likewise Latex gloves are placed on our hands and our fingers are taped to make our hands
feel arthritic clumsy, hard to bend.
"Remove your shoes"
A Substance is placed inside of our shoes to make it harder for us to walk.
"Ooh, that is uncomfortable."
And on our heads they place ear phones, which emit an incessant jabbering. A clamor of noise,
that some Alzheimer's patients say is constant.
Individuals with dementia say we're hearing all this stuff and they can't turn it off.
Then we're each given five tasks to perform. And only twelve minutes to accomplish them.
"I'd like you find the tie and put it on" "I can't hear ya"
Blaine has a hard time concentrating from the start.
"Your time begins now"
As he enters Blaine is immediately disoriented. He staggers, reminding us of the way his mother
looked on our tapes.
Blaine tries to accomplish his first task - clearing the dishes off the table. But when
he goes to put them away, he can't find the kitchen. So he gives up.
"I don't know where to put em."
Blaine finally finds the kitchen but he can't remember why he's there. And again the similarities
to his mother were astounding.
"She would open the cabinets and then she would shut em. Mother what are you doing?
Nothing"
But Blaine is doing a lot better than I am.
"What the heck is this?"
Its only about two minutes into the experiment and the noise from the headset is driving
me crazy.
"God! It's so annoying"
As I try to accomplish my first task - finding the white sweater - I work myself into a frenzy.
"White sweater"
Remember what i'm hearing is this (Noise) And believe me it drives everything else out
of your head.
"Alright, Annoyed!"
"This is tough. I felt confused kinda panicky... If I had to go through very much of this I
might just go crazy."
"Alright that's not a sweater. That's not a white sweater."
I mean you do understand why people start talking to themselves.
"This is not a white sweater."
I was trying to organize my mind but saying, "Ok Alright, alright, alright, not a white
sweater... not there! I don't know about that."
You're doing great!
PK was in the room and at one point when I sat down in frustration on the sofa and she
said, "Um You're doing great, why don't you start with finishing setting the table."
And she told me what else I was supposed to do.
I'll remember that
The reinforcement
Ya, cause you feel so alone. And you fell so frustrated and there's no... ya know...
you don't know what you're supposed to do. It's so dark.
Reluctantly I go back into the kitchen to try to find the plates.
"Glasses... How long have I been doing this? About 20 Hours? I'm not doing great I'm not
doing great."
And once again I get distracted and go looking for that white sweater.
"This looks good enough... this is like a... Ok, it's not exactly a sweater. Alright I'll
put it over my shoulders."
And I end up looking a little eccentric.
Her son's gonna say, "Momma you can't go out like that, your getting a little off here."
In the mean time, Blaine has moved on to the bedroom. Where he is supposed to match 6 pairs
of socks.
"What the Hell. I don't know"
Instead he starts folding everything insight
"I swear this is crazy"
And by now Blaine has forgotten his list of chores. He was supposed to have found this
tie for example. And put it on... instead he folds it - along with everything else.
"Shoot!"
It reminded us of the time Blaine's mother set out to cook something for lunch. Then,
got distracted washing dishes. And didn't remember until the pot was burning.
"Plates!"
After 12 excruciating minutes, the experiment was over.
"I give up!"
Blaine, your time is up. "Huh?"
You time is up "Awe, Shoot"
"what an unpleasant experience"
"Damn, I couldn't do anything"
Blaine was visibly shaken
what a way to try and get through each day and uh kinda scary.
In what way?
Ah, well almost like panic.
For both of us, new insights.
It's a deep sense of confusion
The thing that shocks me the most, is that I couldn't remember 5 simple instructions.
I couldn't imagine living like that.
It's life altering.
They need your help, They need your understanding.
Amen, Despite the experiment Cynthia reports that stress was too much. Luwanda is living
with her sister, and has had almost no contact with her son. Good luck to them.