Feb 7, 2014

The Care Partner Blame Game

In Alzheimer's World people are different. In some ways they are just like you and me, in other ways they aren't. 

By Bob DeMarco
Alzheimer's Reading Room

Bob DeMarco, Alzheimer's Reading Room
I was recently asked to talk to an elderly woman that was having a particularly difficult time dealing with her husband who lives with Alzheimer's disease.

I called her. Before I knew it she was off and running. She talked non-stop for about twenty minutes. She was clearly stressed out. It did not surprise me, I did the same thing many years ago.

At the core of what she was saying was a single theme, blame.

She was blaming her husband for all the things you could imagine. But mostly she was blaming him for being ungrateful and for a lack of understanding.

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Let me interject here. I am not a doctor, nor am I an Alzheimer's professional. I am an Alzheimer's caregiver.

One of the themes that came out of the conversation, one of the things that seemed to be driving this woman crazy, was that her husband no longer appreciated her, or what she was doing for him.

I asked her a simple question.

Did he appreciate you in the past? 

She answered yes. I asked, did he tell you he appreciated you in the past? She answered yes.

I asked what changed?

You might be surprised when I tell you her initial response.

She said, I don't know. 

When she said this it threw me for a loop. I just didn't expect that response.

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To be honest, now that I have been able to think about it I am now wondering if that is common, or a fairly common response?

I would be interested in learning what you think about that response.

Since the woman was new to me, and since I am not a psychologist, I decided to keep it simple. I tried to explain that much of what she was seeing was due to the changes in her husbands brain. Alzheimer's disease.

I decided to go in the direction because that that seemed to help me at the beginning of my care partner journey.

I tried to explain to her that many of us experience what she is experiencing.

For example, it is not unusual for a person who is living with Alzheimer's to stop saying please and thank you. This can happen early on and it did happen to me. I now know I am not, or I was not ALONE in this.

So those were the key words, You Are Not Alone.

I said this at least ten times. Each time I said it, I could tell by her reaction that those words were having an impact on her. I have no doubt that once she absorbs this she will be making a first giant step to becoming an effective care partner.

I also suggested several times that she join a support group. It appears that so far she has been too embarrassed to do so. I hope she does.

Personally, I never had a problem with blame. I understood clearly that my mother's mean and often irrational behavior was being caused by dementia.

However, even though I knew and understood beyond a shadow of a doubt -- that did not mean I was able to deal with the behavior effectively in the beginning. Not in a month and not in a year. It took a lot of hard work to change.

I tried and tried to change but it was very hard to change.

This is why I invented Alzheimer's World.

I was use to dealing with people and problems for most of my adult life. So I thought I could change and deal with my mother in the same way that I always had done.

But, dealing with problems the way I had in the past, the way I had learned in the past, did not work.

Finally, I came to the conclusion that it was going to take me forever to learn to change in the way I needed to, to deal effectively with a person living with dementia.

So instead, I chose Alzheimer's World.

I want to make this point. As I stepped into Alzheimer's World I decided I would care for my mother effectively, I would learn how to do it, and I would stop judging her behavior by the old world rules that simply do not apply to a person who is becoming deeply forgetful.

In other words, I would learn a new way. I would learn an entire new skill set.

Not change the way I was. Make a new me. A new and separate me. This new me, in my new world, Alzheimer's World, would learn how to communicate and accept my mother. Essentially, getting back to where we were by adjusting to the new circumstance - Alzheimer's.

Now don't get me wrong, I was going to use what I had learned over the course of my life, but I was going to apply it step by step in a new way until I had an effective way to deal with Alzheimer's disease and my mother, Dotty.

This is a key to effective care giving, I believe.

I decided to stop trying to unlearn my old real world behaviors, and instead learn an entire new set of behaviors.

As it turned out, it was a lot easier to learn something new, then it was to unlearn, then relearn.

I decided I would live in two separate worlds. The real world and Alzheimer's World. And that, I would learn how to switch back and forth.

At first, I had to teach myself to switch to Alzheimer's World.

I decided to take one giant step to the left to remind me to switch gears, and to alert my brain that we were now in Alzheimer's World.

After, well I don't remember how long, I didn't need the giant step. I could switch worlds seamlessly, and with little effort.

I will admit, sometimes when it got very difficult I would still make that giant step to the left to remind my brain, we are going in, get in there now.

In Alzheimer's World people are different. In some ways they are just like you and me, in other ways they aren't.

The brains of the Alzheimer's people no longer functions the way they use to.

So, if your Alzheimer's patient doesn't say please or thank you, understand that its their brain that is no longer reminding them to do it. They are not being intentionally mean, ungrateful, or disrespectful.

Don't blame them for being ungrateful.

I can assure you that almost every Alzheimer's person on the face of this earth is extremely grateful.

Don't take my word for it, take a good hard look at their face when you are "doing" for them.

Look beyond the obvious. Go into the World.

As you learn by relearning a new set of communication skills remember to be a Guide, not a parent.

Remember to remain living your life, this means both of you.

For more information use the search box on the right labeled Search Our Knowledge Base.

Try entering some of these keywords (one by one) for tips and ideas on how to care effectively: guide, listen, blah blah, Alzheimer's world, Alzheimer's communication.

Bob DeMarco  is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide. The ARR Knowledge Base contains more than 4,600 articles. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room