Dec 21, 2016

When Alzheimer's Patients Say Mean Things, What do you do?

How to get a person living with dementia to stop saying mean and hurtful things?

Dementia care tips for caregivers dealing with Alzheimer's disease.

As the number of new readers grows, or when new caregivers discover the Alzheimer's Reading Room, the number of emails I receive tends to go up fast.

One common question or theme in the emails is

how to deal with Alzheimer's patients who say "mean things".

In others words, how to deal with these challenging behaviors.

Bob DeMarco
Alzheimer's Reading Room

I understand how much the meanness can hurt. It happened to me for many years. It kept happening even though I was trying as hard as I could to reverse it.

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The issue,

how do you get a person living with dementia to stop saying mean and hurtful things?

Today I am going to focus on the first thing I did to try and get a grip on my own situation when this happened.

I bought a spiral notebook (actually as it turned out quite a few), and I started writing down the day, date, time, and description of what I was doing before Dotty started saying mean things to me.

After a while, I started to notice some patterns.

Here is a simple example. Right after I would get off the telephone Dotty would start saying mean things to me.

Soon it became obvious that Dotty thought I was "up to something" when I was on the telephone. As it turns out, what she was thinking was that I was making arrangements to put her away. In Dotty's terms, "put her in a home".

Let me tell you, in the beginning Dotty was constantly worried about money, believed that people were stealing from her, and was just down right paranoid that she was going to be put in a "home" -- never to be seen or heard from again.

In Dotty's mind a "home" was a really bad place. Nothing like today's nursing homes. I can only imagine what she saw way back in the 1920s, 30, and 40s. It must have been ugly.

Another thing I noticed is that if I went out for a while. Say to go to the store, or even if I was throwing out the trash and stayed out a while talking to a neighbor, the "nasty" episodes started to happen.

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I had the best of intentions back then (just like you).

I tried to explain to Dotty what I was talking about on the phone, or why I was gone so long taking out the trash. These were usually long detailed explanations that did nothing but make Dotty angrier or meaner.

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In other words, trying to explain the obvious with a lot of words did not work. In fact all it did was make her more confused, and angrier. Too much gibberish on my part, I suppose.

There were lots of things I started to notice once I starting making notes in my spiral notebook.

Another example. Dotty was afraid that someone would look in the window when it was dark. Of course, I would try to tell her it wasn't happening, or wouldn't happen.

Get the trend here? I was always trying to "explain away Dotty's fears".

Why wouldn't I do that. Her fears made no sense to me, and they weren't real in my terms. When I looked at the situations from my point of view, Dotty's fears seemed idiotic.

Well I now know who the "real idiot" was, and it wasn't Dotty.

Start making notes in a notebook. Eventually when you discover a pattern make a separate page so you can follow that one pattern.

For example, does your loved one tend to get hard to handle at 4:30 in the afternoon?
  • Hard to handle right before it gets dark outside? 
  • Hard to handle right after it gets dark outside?
  • Hard to handle right after you get off the telephone?
  • Hard to handle when you go out, and then come home?
Once I started to understand what triggered Dotty's difficult behaviors I was able to adjust and avoid the triggers.

Over time Dotty changed from being "meaner than a junkyard dog" into a real "sweet - E".

To succeed, you need to start doing some work. Some note taking. You need to build your own "frame of reference".

I have to warn you. It won't be easy to change the dynamic unless your start writing in a notebook and identifying patterns of behavior; and, the "triggers" of unwelcome behavior.

If you want help, if you want to change the way things are, you have to commit to helping yourself.

This means you have to do some work if you want to be successful.

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Alzheimer's Anger, Frustration, and Agitation

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"Caregivers can relate to your message because it truly comes from your heart and your personal experience; and caregivers need to know that others have done it and survived."
Janet Steiner, Director, Brevard Alzheimer's Foundation

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