Feb 11, 2016

Bob DeMarco - Step Into Alzheimer's World

Step Into Alzheimer's World
Before I interacted with my mother, I'd take a step to the left — literally take a step, as if I were walking into a new place called Alzheimer's World.

I did this to re-train my own brain to remember I had to enter my mother's world.

I was interviewed by Paula Spencer Scott for a chapter in her book, Surviving Alzheimer's: Practical tips and soul-saving wisdom for caregivers.

I hope you will take the time to read the excerpt below; and, the book.

This is a very good portrayal of my operant philosophy.

A Note from Dotty in Heaven, Learn How to Live in the Now

The following is excerpted from Paula Spencer Scott's  book - Surviving Alzheimer's - Practical tips and soul-saving wisdom for caregivers

While caring for his mother for 8 years, a son discovers a life-changing epiphany:

When Dorothy De Marco died of Alzheimer's disease at age 95, hundreds of condolences poured in from around the world to her youngest son, Bob.

"Dotty" wasn't an international bigwig. She was the muse, star, and object lesson of a blog that Bob had started to help himself understand his mother's condition after he moved to Delray Beach, Florida, to become her full-time caregiver. ("The world's biggest support group," he calls it.)

Alzheimer's Reading Room is now a leading voice for Alzheimer's caregivers, with thousands of followers.

Bob, a former business executive and Wall Streeter, continues sharing the lessons he and others have learned as the site's editor. And if you think his site is rich with eye-opening tales, you should get him started talking, as I was lucky to do.

From this point on Sandy is translating what I told her into what I believe is a wonderful, instructive, narrative of our conversation. 

Most of the things caregivers experience at the start are negative reinforcement — you hear things like "Nobody survives" or you see how stigmatizing Alzheimer's can be. Everything seems to be going wrong, and you can't even control your own emotions.

I spent my first 18 months as a caregiver just trying to get a handle on what was happening. I'd stay up 'til 3 a.m. reading about the brain. I tried to adjust my life to take care of my mom.

All my friends had always loved Dotty, but she had turned meaner than a junkyard Doberman pinscher. She'd resist me, argue with me, curse me.

Classic example: Dotty would open the freezer and stand there. She'd look through the food, open up packages, maybe re-wrap some (or not). Meanwhile the freezer would eventually start this incredibly annoying beeping, an alert to let you know you'd left the door open.

"Ma, what are you doing?" I'd yell from the next room.

"None of your damn business!" she'd holler back. We'd go back and forth awhile.

Then I'd go in to close the refrigerator door myself. She'd throw down the package she had in her hand and go curl up in a ball in her room. Things like this were happening every day.

That's what I found myself doodling on a notepad late one night. I circled the words and stared at them. I had no idea what it meant. But I felt the stress start to come out of my neck. I didn't even know I'd been that stressed.

A few minutes later, I wrote:

And that something is me!" 

I circled those words, too, and then I connected the two phrases with a line. I still wasn't sure what it all meant, but I went to bed feeling unusually relaxed.

I'd made all our interactions about me — me being annoyed by the beeping, me getting mad when she wouldn't take a shower, me trying to tell her she just ate when she said, "I'm hungry."

I thought I understood her confusion and was changing my life to deal with the effects of Alzheimer's. But it was all still about me.

My mother was only going to change as the disease did. It dawned on me: What had to change was me — my reactions, my actions, my words, my emotions.

I had to enter Dotty's world — "Alzheimer's World," as I've come to call it.

If I'd had a travel guide to Alzheimer's World, these are some of the tips I wish had been in it:

Use the local transportation. Before I interacted with my mother, I'd take a step to the left — literally take a step, as if I were walking into a new place. I did this to re-train my own brain to remember I had to enter my mother's world.

Speak the local language. Eventually I realized I was drowning my mother with too many words. Sometimes, all I needed to do was smile. Or put my arm around her shoulder and my head on her head.

Instead of a long explanation about what we were going to do (like go to the bathroom before lunch), I'd stick out my hand and say, "Let's go."

And she'd come along willingly, even before asking, "Where are we going?" To which I'd just smile and say, "To have fun."

Little did she know that I was the one who was going to have the most fun, after she took a pee without a fight about it!

Follow the local pace. Everything is slower in Alzheimer's World. Have patience.

Stick to a routine. Routine is key — structuring the day to replace bad patterns with good patterns.

Build on what the person did before. 

My mom used to get up, read the paper over coffee, and run around on errands.

So we'd do the same thing, only we'd go to McDonald's or sit outside, because I found that the bright light seemed to help her mood.

We'd go to the gym, where the exercise made her smile and that brighter look on her face would last for an hour or two after.

Never forget you're in a new place. So many people get hung up on thinking, "You're not the person I used to know." But that objectifies the person and distances you. It's saying, you're a problem instead of we're in this new place together.

So here's what I did about that annoying freezer beep.

I stayed calm and took a step to the left. I tried to figure out why my mother might be rummaging around in there. I realized that her whole life, she'd open the freezer to look for something to cook later. But then she forgets what she's doing. It was comforting to see it this way. Or maybe she was hungry but couldn't discriminate between the fridge and the freezer; she'd open the freezer but nothing there was edible.

Also, she either couldn't hear the beeping or, if she could, she didn't know what it meant, so it didn't bother her.

So I put a box of donuts, a treat she loves, in the back of the freezer.

The next time she went in there, she eventually found it, took out two donuts that were frozen together, closed the freezer, and set the donuts on the counter. Later, she came back into the kitchen, saw them there, and ate them happily — without opening the freezer.

Instead of venting — calling my friends and telling them the same story over and over — or getting bent out of shape and angry, I became proactive. Instead of feeling burdened, I felt a kind of joy that Dotty was still using her brain to find something to eat.

Each episode like this brought the positive reinforcement I needed as a caregiver that my efforts were worthwhile — and I wanted to do more of it.

The better I became at living with Dotty in Alzheimer's World, the more pleasant and cooperative she became. She still had her pain-in-the-butt days, but they began to bother me less.

Something else surprising happened: I became more patient and easygoing in the Real World, too. Small stuff bothers me less. Let's face it, positive reinforcement motivates all of us.

Editor note: The emphasis and bolding in this article are mine.

More Articles from Bob DeMarco

Routine and the Importance of the First Action of the Day in Dementia Care

1 Fact About Alzheimer's That Remains a Mystery

The Frightened, Angry, Anxious, Mean Dementia Patient

10 Tips for Communicating with an Alzheimer's and Dementia Patients

What is a Memory Care Facility?

16 Ways to Get a Dementia Patient to Eat More Food

5 Tips How to get an Alzheimer's Patient to Shower

The Importance of Touch and Kindness in Dementia Care

Communicating in Alzheimer's World

Paula Spencer Scott is the author of Surviving Alzheimer's. Currently a contributing editor at Caring.com, Scott has been a Woman's Day columnist ("Momfidence"), a Met Life Foundations Journalists in Aging fellow, and a longtime contributing editor to Parenting and Babytalk. She and her husband have six kids, and four of her family members have had dementia.

Learn More About Paula Spencer Scott

Original content the Alzheimer's Reading Room

Operant Philosophy

involving the modification of behavior by the reinforcing or inhibiting effect of its own consequences (instrumental conditioning).

an item of behavior that is initially spontaneous, rather than a response to a prior stimulus, but whose consequences may reinforce or inhibit recurrence of that behavior.