Featured Article: They Love Us More

By Bob DeMarco Alzheimer’s Reading Room

It is not unusual for an Alzheimer’s caregiver to wonder if the person living with Alzheimer’s or a related dementia still loves them. Do they?

Earlier this week I posted the following quote on my Facebook profile and Facebook page.

Many Alzheimer’s and dementia patients shadow their caregiver. This means they follow us around, or call out are name when we go away.

I alluded to this phenomena when I wrote - Did You Know Dementia Patients Get Agitated When Left Alone?

Alzheimer’s patients often become angry when we leave them for any period of time. They asked for us repeatedly and want to know when we are coming back. They miss us fiercely.

They miss us because we are their connection to the world. They miss us because they rely on us to protect them against any and all demons real or imagined.

Have you ever given any real thought to this phenomena? You should.

What does it mean?

Whether they say it or not, the actions of a person living with Alzheimer’s or a related dementia tell us - they love us. They love us and rely on us so much they just can’t stand to be without us.
Are you dealing with an Alzheimer’s patients that is mean and ornery?

Did you know that past a certain stage dementia patients can’t be left alone? Not even for a very short period of time.

Early on in my care-giving career I learned a very important lesson. You cannot leave a person with Alzheimer’s alone even for a very short period of time.

After a while I started noticing that whenever I left Dotty alone, when I came back she was often ornery or even angry. This led to a very bad period. Sometimes this period lasted or hours and sometimes it lasted for days.

Basically Dotty was unhappy and I was unhappy. Unhappiness does not breed contentment and cooperation.

How did I discover both this problem and the solution? I finally put one and one together and made three.

Sometimes I would go out to throw out the trash and while out talk to a neighbor. I might be gone for 15 minutes. I started noticing that when my mother would talk to my sister at night she would tell her, he was gone all day, I don’t know what he is up to. Clearly Dotty was confused. I had been with her the entire day with the exceptions of those 15 minutes.

As should be obvious, when Dotty accused me of “being away all day, and being up to something” I would get angry. And yes, I would correct her with a detailed explanation of her “wrong thinking”.

Of course this didn’t work. In fact it only made things worse, and it made our relationship worse.

I also noticed that when Dotty didn’t see me, even if I was a few feet away, she would start saying loudly,

“Bobby, Bobby, where are you”?

If answered quickly this seemed to reassure her.

Sometimes Dotty and I would be in different rooms and she would start saying loudly, “Bobby, Bobby, where are you”? If I yelled from the Florida room, I’m back here in the Florida room, well this really didn’t work well. It was not enough reassurance for a person living with dementia, and quite frankly, Dotty probably no longer knew where the Florida room was.

I soon learned that if I got up and yelled, I’m coming. Then when I arrived where she was looked her in the eye and smiled, waited for her to smile back at me, and then said, “I’m right here”, it seemed to reassure her in a very positive way.

I could tell both by the look on her face, and by how she acted in the aftermath.

So I finally learned after much heartache and many hundreds of stomachaches that you cannot leave a person who is deeply forgetful alone.

If you do, you will suffer the consequences. Meanness, difficult, and challenging behavior that will ruin your day, day after day after day.

I call this burden by the way.

I did learn one good technique. I moved the furniture around and

positioned Dotty so that when she said, “Bobby, Bobby, where are you?”, I could spin around fast in my chair to get her attention, give her the smile, get the smile back, and say, here I am.

Over time this cumulatively reassurance made a big difference.

By the way, Dotty often did her Bobby Bobby when she dozed off on the sofa. I actually moved the computer to a strategic position so I could work on the Alzheimer’s Reading Room and then when necessary spin around so she could see me, and get the reassurance she needed.

You have to learn to listen very closely to a person living with dementia. When Dotty said I was gone all day it was because she no longer had a real sense of time. I had to correct for this.

Most Alzheimer’s patients shadow their Alzheimer’s caregiver like glue. This included Dotty.

They love us and rely on us so much they just can’t stand to be without us.

It really is not as hard to adjust as you might think. The payoff and reward make it easy.

Bob demarco was his mom dotty’s caregiver for 8 years until her death in 2012 ■.