Jun 23, 2011

Alzheimer's Caregiving -- Like Walking Backwards with a Blindfold On

I lend Dotty my brain, and I give her my hand. Seems to be working effectively for us.

Bob De Marco Alzheimer's Reading Room

Alzheimer's Caregiving -- Like Walking Backwards with a Blindfold On
Ever tried to walk a long distance backward without looking over your shoulder? I doubt it. Go ahead, start walking around you home backwards. No looking over your shoulder, eyes straight ahead, no peeking.

How do you feel? Nervous, anxious, disconcerted?

Okay. Now we are going to put a blindfold on you, go outside my home, and walk backwards for ten minutes without looking back and without stopping.

How long do you think you will last before you say, I can't do it?

If you walk backwards from our front door I'll give you some tips. After about ten steps you are going to hit a concrete abutment. I supplied you with that information. But here is the rule. You can't stop walking and you can't look over your shoulder (your blindfolded anyway, so it won't help). You will need to make a left after those ten steps, or you will bang your head.

Let's say that you somehow make the left. Okay, here is another tip. After another ten steps you are going to come to a concrete abutment in the parking lot. The kind of thing you see in a parking lot when you park your car.

You'll need to step over that while walking backward without stopping or hesitating. It's likely you are going to trip over the abutment and fall on your butt. Or maybe, crack your head open.

My guess is that if you engage in this exercise with me you are going to feel very nervous, lots of anxiety, and angst. How long before you quit? Before you say, I can't do it.

This experience is roughly analogous to what you do as an Alzheimer's caregiver. What you might feel.

Now lets say, same exercise -- walk backwards, blindfolded, for ten minutes without stopping.

This time around I am going to lend you my hand to hold, and I am going to tell you what to do. Turn left, step over the abutment. And so on.

How does that feel? Feel better? Feel more safe and secure? It is probably going to be slow going the first ten times. Do you think you will get better at it with practice? More confident? Feel less anxiety? Don't worry, I am going to hold you hand, and help you navigate.

Will you begin to trust me?

In the real world you would never go out and start walking backwards with a blindfold on.

When a new parallel universe comes to your home -- Alzheimer's World -- you are going to need a whole new set of skills to navigate this backwards universe.

Often, what you need to learn, the new skills you need to learn are contrary to what you have been doing your entire life. In many cases, the exact opposite. Just like walking backwards blindfolded.

Alzheimer's World can be a really disconcerting place. Its new, its different, you don't know how to operate, and in order to thrive you will not only need to learn an entirely new and different set of skills -- you'll need to learn how to change.

Think you can do it?

Oh yes, before I forget. Alzheimer's World is going to change slowly each and every day. The rules are going to change. You will need to learn new and different skills and you will need to change -- constantly.

And now to the point.

Yes, you will need to learn how to walk backwards with a blindfold on. To do it seamlessly, without fear. Welcome to Alzheimer's World.

Eventually you'll learn that what you need to create is a save secure environment where every thing is the same as it was the day before. A place that is easy to navigate.

Eat, take medication, take a pee, have some ice cream, go out into the bright light, engage in activities like talking or reading the paper, exercising, and having some fun.

Come on over. This is our house.

I did learn how to walk backwards with a blindfold on. Yes, I did fall on my butt. No I didn't crack my head open, but sometimes it felt like I did.

I'm not as anxious as I use to be. As a result, Dotty is not as anxious or confused either.

I lend Dotty my brain, and I give her my hand. Seems to be working effectively for us.

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Original content Bob DeMarco, the Alzheimer's Reading Room