Nov 22, 2015

Feeling Safe and Secure in the Alzheimer's Environment

By Bob DeMarco
Alzheimer's Reading Room

Everyone wants to feel safe and secure. This is particularly true of persons living with Alzheimer's.

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Dotty was worried about everything under the sun when I first moved to Delray Beach to take care of her.

Money, someone looking in the window,  and the most dreaded of them all, the dreaded "Home".

'Home" a bad place where they put you and forget about you when you are old or sick.

Fear factor, ten out ten.

Dotty would say, "you aren't putting me in any home, I'll kill myself first".

Sometimes she threatened to  put her head in the oven (we have electric), shoot herself (we don't have a gun), or stab herself with scissors (we have a lot of them).

She never tried it.

I could easily understand Dotty's fear of the "dreaded home".  She actually mentioned this before Alzheimer's. I suppose it was pretty ugly in a "home" back in the 1930s and 1940s.

It wasn't easy for me to diffuse Dotty's notion of going to the "home".

I told her 22,687 times over several years that no one was going to put her in a "home".

After a few years I finally came up with a better idea. I put my arm around her, put my head on her head, and said

"we are not going anywhere, its you and me and we are staying right here".  

This actually worked.

One big problem is the need for Alzheimer's patients to be able to see you, or be around you at all times. This is called "shadowing". It is a common need among persons living with Alzheimer's.

No, Dotty never followed me into the bathroom. Instead when I came out she would say,

"oh there you are, where have you been all day". 

Later she would tell my sister on the phone, "I don't know where he goes all day, he must be up to something".

In the beginning this was really aggravating. I had to have a lot of conversations with myself to calm myself down.

Does the person living with dementia follows you around all day?

Ever try to take a nap?

Isn't it uncanny how they wait until you finally fall asleep before they say,

"time to get up you know".  

At the top of their lungs. I have to laugh at myself on that one.

One problem I had was Dotty saying,

"Bobby, Bobby, Bobby where are you" 

when she couldn't see me.

She even did it while talking to another person. If she couldn't see me she needed to know where I was.

Don't believe me? Ask my sister Joanne. She will tell you its true. However, I have the feeling that many of you know what I am talking about.

After pulling my hair out I finally came to a solution to the shadowing problem.

First, I moved the furniture a bit so that Dotty could see me while she was sitting on the sofa or in her chair.

I am usually on the computer. If not, I have my chair right at the end of the sofa. If I sit to the left of Dotty across the room she is going to say any minute now, "Bobby where are you"? If she can see me, no problem.

I also procured the repeat parrot, Harvey, along the way. He is very effective at keeping Dotty entertained. He gets her undivided attention.

As far as Dotty fears and insecurities, I actually overcame this by creating what I call the "Ground Hog Day Solution".

Have you seen the movie Ground Hog day? Well, the Bill Murray character keeps waking up at 6 AM in the morning, and its the same day everyday. In other words, he keeps repeating the same day over and over.

What I did was try and make every day just like the day that came before it. In other words create a daily routine. It worked wonders.

Dotty calmed down. She stopped saying mean things to me. She stopped complaining (well somewhat), and she finally became safe and secure. She even stopped peeing on herself.

Of course, what I just described was not happening in a vacuum.

For example, how to solve the pee pee problem?  Easy, schedule a bathroom visit every 90 minutes (or sooner) as part of the daily routine, and empty out the tank.

Creating the schedule took some effort. Getting Dotty to cooperate did take a few years. It also took me some practice to remember the routine, and execute the plan.

Dotty continued to say, NO, I don't have to pee with all the accompanying excuses you already know and heard. But guess what, she went into the bathroom -- even while saying NO.

I am particularly happy when we get number one and number two. Good Ground Hog Day.

In the movie Ground Hog Day, Bill Murray finally starts putting his time to good use.

He becomes a pianist, ice sculpture, and starts saving peoples lives. Since he already knows what is going to happen he knows when someone is going to fall out of tree, or worse, die. He takes action.

Bill Murray didn't change the past. He changed the future.

Let me ask you this. Are you a full time caregiver like me? Are you putting your time to good use? Why not? You have something better to do with your time?

Make a list of the problems you are confronted with each day. Work on them one at a time. Sooner or later you will start feeling the thrill of victory. And, stop feeling the agony of defeat.

I know you can do it. Scratch that. I believe in you and I am confident you will do it.

Change the future. Change your future.

By the way. In the movie Ground Hog Day Bill Murray changes. He goes from being what can best be described as a "mean spirited man" to a loving caring person.

We created a secure environment by creating a routine, being kind, and working together.

So I guess you could say -

it was Ground Hog Day every day here in Delray Beach.

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Original content Bob DeMarco, Alzheimer's Reading Room