Apr 2, 2016

Alzheimer's Caregiving Rule Just Let Them Do it

Almost every day I am reminded of one of the most important things I learned about Alzheimer's caregiving

Just let them do it.

Alzheimer's World | Alzheimer's Reading Room

Several months after one of the worst Alzheimer's caregiver decision I ever made, I received one of the biggest shocks of my Alzheimer's caregiver life. A shock that sent me into a tailspin like I had never experienced previously in my life -- it sent me to the edge of total despair.

Topic - The Importance of Socialization in Dementia Care

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By Bob DeMarco
Alzheimer's Reading Room

In my case, this referred to my mother Dotty. Dotty was deeply forgetful.

When I first moved to Delray Beach I learned that at least once each day Dotty jumped in the car and went to the store to buy lottery tickets. I say at least once a day because Dotty often forgot that she had already gone to the store and gotten the lottery tickets for that day, so she jumped in the car and bought them again.

When I would try to explain to Dotty that we already had the lottery tickets - to her it was very painful. Even when I showed her the lottery tickets it was painful. She didn't believe me and the evidence didn't help.

Welcome to the world of Alzheimer's caregiving. The standard and usual rules of communication do not apply.

I Had to Remind Myself - My Mom Was Deeply Forgetful and Living with Alzheimer's

After a while I came up with one of my best ever caregiver ideas, or at least that is what I thought at the time.

Why not buy all of the lottery tickets for the week in a single day?

All 37 dollars worth of the tickets.

So I bought all the tickets and then each day I would hand the tickets for that day to Dotty. It didn't work to perfection, but it worked and I didn't have to make the trip to the lottery store every day.

Maybe I forgot to mention, Dotty had her own very special lottery store. The reason? Because it was a lucky store. Dotty had concluded that her favorite store had better numbers.

So somehow when Dotty bought her daily Cash 3 Ticket 8-1-3 at that store, it was very different then if she bought 8-1-3 at another store. Trust me, I did try to explain the error in her reasoning many many times. Result? I ended up with a stomach ache.

All of this happened before I discovered Alzheimer's World. After my first step into Alzheimer's World, I began to understand Dotty's lottery ticket logic.

Topic - Alzheimer's World

Most of Dotty's thinking process and behaviors started to make sense to me -- in Alzheimer's World.

However, before Alzheimer's World I received what can best be described as an Alzheimer's lightening bolt to the back of my head.

Several months after my great Alzheimer's caregiver experiment -- buy all the lottery tickets on a single day and then hand them out one day at a time -- I received one of the biggest shocks of my Alzheimer's caregiver life. A shock that sent me into a tailspin like I had never experienced previously in my life -- it sent me to the edge of total despair.

Here is what happened. I took Dotty to the store with me. Once inside the store, I handed her the envelop with the lottery cards filled in and the $37. I instructed Dotty to go and get the lottery tickets. She didn't budge. She had no clue how to do it.

Next, I walked her over to the lottery ticket desk and encouraged her -- get the tickets. She was clueless. She did not know what to do. Thanks to my intervention - my buying of the tickets, Dotty had forgotten how to buy lottery tickets. Something she had been doing for 20 years.

I had to live with this shock for a couple of days.

I was in a state of emotional, physical, and psychological pain. I couldn't get the simple fact that Dotty no longer knew how to buy lottery tickets off my mind.

I was convinced it would only be a matter of days or months before Dotty wouldn't be able to do anything -- or worse.

I really felt like I was on the edge of despair, and ready to fall into the abyss. I was scared.

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After a couple of days it was time for us to go to the doctor for a check up. Once there I started to tell our wonderful doctor, Dr. Chiriboga, about what had happened. I will never forget that day or what he said.

He sat down directly in front of me and told me, if you do everything for her soon she will forget how to do it. Once she forgets it isn't likely that she will relearn how to do something.

His words of wisdom changed our lives.

He said to me, you are the One -- the only one that knows what Dotty can and can't do.

He suggested to me that I let her do everything she could do. He told me, and these words were prescient, that I would probably get criticized if I let her do everything she could. He told me you'll get criticized from people you never met before in your life.

Dr Chiriboga saved our lives. And of course he was right, I was often criticized upside down and backwards for my simple approach -- I helped Dotty do everything she could do.

When I went home from talking with Dr Chiriboga, I got out the da Vinci pad and went into the bunkhouse. I decided I would let Dotty do everything she could do. I started making lists.

Soon, after great success with Dotty, I started a new da Vinci page. In a big circle in the middle of the page I wrote --

We will start living our life as we always had.

By this time I already had Dotty in the gym and had noticed the remarkable things that she could do. This was slowly convincing me that we could start living our life the way we always had.

So we came out of our Alzheimer's cave.

We started socializing.

Dotty was back talking to people. Brand new people she had never met. She was telling her wild tales to anyone that would listen. They believed every word she said. I had learned to accept these tall tales instead of correcting her.

Topic - Do you correct someone with dementia?

Instead of getting bent out of shape, I learned to laugh right along with everyone else. Did it matter that none of what she said had happened, or that much of it wasn't true?


I didn't know it yet but I was crossing over into Alzheimer's World -- seamlessly.

In Alzheimer's World it is not unusual to learn that what is true is false, and what is false is true. Doesn't matter over there. Just doesn't matter.

Like Doc C said it would -- it happened. Somebody I never saw before in my life started criticizing and berating me.

She was mad because she thought I was not helping Dotty step off the sidewalk and into the street. I was there doing my usual thing -- assisting Dotty to step down, but not forcing her.

She won't fall and I know she will take the step -- sooner or later.

In Alzheimer's World you just gotta learn to be patient.

Real patient.

So here is the women yelling at me, telling me to get Dotty a walker and all kinds of stuff.

I give her the stare and I put my palm out (the stop sign) and just wait for her to run out of gas. Dotty makes the big step down and away we go.

I didn't say a word. I just took it in stride. We were living our life, not her life. I was comfortable in my own skin as an Alzheimer's caregiver.

On the way to the car Dotty said, that woman is an *ss. I laughed.

You have to learn how to let a person who is deeply forgetful do things, everything they can do.

You need to learn which activities then can do, and never assume they cannot do something until they prove to you conclusively they can't.

Please. Avoid the tendency to say and think, this won't work for us. Try it first, even if your brain is telling you it won't work. Never forget, there is more there than you can imagine. So use your imagination in a positive proactive way.

Topic - How to Get a Dementia Patient to Do What You Want Them to Do

Do not let the word NO stop you from doing. Just lead with a smile and hand and

Do It.

Note. Dotty lived on for another 8 years after the episode described above. She continued to do more than I ever could have imagined.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room. The ARR has published daily since july, 2009.

Original content Bob DeMarco, the Alzheimer's Reading Room