"We are all running around agitated about agitation."

Dear Richard,
 
I don't know why, but sometimes I just feel agitated and upset.  I am not particularly angry at anything, just "out of sorts." I don't know the reason for this feeling. Sometimes I act-up just because I am feeling agitated.

My family wants me to take drugs to reduce my agitation. Sometimes they seem scared of my nervousness and of me. Sometimes they act mad at me for being agitated for no apparent reason. Sometimes I do get mad at them when I am agitated.
 
Do you get this agitated feeling? What do you do?
 
James M. 

Hello,
 
From time to time, we all become agitated with something or someone. I know I do. It quickly becomes an "issue" for others when someone who is living with the symptoms of dementia becomes agitated. For people with dementias such as Alzheimer's, just trying to cover up their symptoms is cause for agitation in itself. Add to that, carers fearful of agitation leading to anger or violence, and of course, we are all running around agitated about agitation.
 
Frequently when others characterize me as agitated, I think I am more frustrated, distracted, and sad than I am in the midst of "a mental state of extreme emotional disturbance" (Word Web Dictionary). 
 
I think this is an important distinction, because others may be more apt to feel as if I need help, usually in the form of a pill, to stop myself from being agitated.
 
Having heard the words "you have Alzheimer's," coupled with the fact you couldn't remember how to get home yesterday produces in most people the beginning of a growing sense of isolation from others. Anger rises up as we move from unconsciously covering up our symptoms, to covering them up, to arguing with others about if we really have a symptom at all. "There is nothing wrong with my mind!" I shout back. Do I sound agitated?
 
Somehow your brain knows it is in trouble. There is a growing awareness that it can't maintain the control of your life you want and demand. Probably in the largest sense, we never have the control of our lives we think we have. The fact of the matter is we control our responses most of them, most of the time, but that's about all. And now with the advent of Dr. Alzheimer, we sense that we can't even control some of our responses because the tools we used to formulate those controls don't seem to work for us as they have worked in the past.
 
I have become frustrated about being frustrated; distracted about being distracted, and sad about being sad. Our frontal lobes are both a blessing and a curse. Is it any wonder I appear agitated about my life, you, me, us, and whatever?
 
My point (at last) is I believe much of what is characterized as agitation, and therefore should be a concern and warrant action by others on my behalf, is in fact an understandable and unavoidable side effect of living with the symptoms of dementia. For the most part, both the cause of agitation and its solution lie within us.  
 
First, don't feel bad when someone characterizes your behavior as evidence of agitation. That is their label; it doesn't have to be yours. Second, tell yourself being uneasy, frustrated, sometimes sad is a normal and healthy response to dementia. Don't give in to it. It's too big a trade off to let it overwhelm you just because it makes you feel a little uncomfortable, uneasy, and sad. Third, and more specifically when I do feel "agitated," I:

•    Go off by myself and take a nap
•    Call someone I love and talk to them
•    Play with my grandchildren
•    Dig in my garden
•    Listen to Mozart's music
•    Sing out-loud and loudly
•    Write about how I feel
•    Cry, act up and act out, get mad
•    Chew on a yellow M&M and tell myself this is Xanax and it will help me feel better
•    Talk with a therapist who has worked with dementia patients
•    As a very last resort, take a pill
•    Or all or some of the above.

Of course, as with most "good" advice, it is much easier said than done. I spent a year in therapy trying to deal with my feelings of frustration and sadness. I was getting madder and madder. At what or whom I wasn't quite sure, but I knew I was mad, and others knew I was becoming more and more agitated.
 
I'm not claiming to have mastered my own irrational thoughts, my own sometimes out of control feelings. But I'm better at it than I was. I also know that I don't want to depend on inner calmness and outward lack of the signs of agitation because I am full of "calming drugs." I acknowledge there may be a time in my future when medication is necessary because I can't control my aggression, my anger, or my agitation. I also know I don't want to arrive at that point one moment earlier than before it becomes an absolute necessity. For me, drugs will be a last resort. If you agree that drugs are a solution of last resort, talk to your carers now and make your wishes known.
 
Agitation is something people with dementias such as Alzheimer's have to work on all the time. We don't like doing it. It isn't fair. It doesn't always respond to our "healthy thoughts." It's the best we can do right now! I urge you to do your best, and perhaps your best can get better with the talk and insights of a therapist.
  
Richard

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The Help Box - The Best Idea I Can't Remember Having!

More Information:

Richard Taylor was diagnosed with dementia, probably of the Alzheimer's type, when he was 58 years old. Now 66, Richard speaks to the public about living with the disease and sends out a challenge to the Alzheimer's outsider.

Source:

Dr. Richard Taylor

Week of May 9 - May 16, 2010

Reviewed by
Dr. Boaz Ancselovic, MD, Geriatrician, Alzheimer's Weekly.
Edited by Peter Berger, Alzheimer's Weekly.
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