JOAN’S WEEKEND BLOG – JANUARY 2-4,2009 – RICHARD TAYLOR EXPLAINS WHY OUR SPOUSES ARE MAD AT US

As spouses of someone living with Alzheimer’s Disease, the slings and arrows of their anger are directed right at us . Their tantrums, rages, and verbal (sometimes physical) abuse wear us down emotionally, physically and mentally. We are told that it is not THEM; it is the DISEASE. We are told to ignore, divert, and distract. From our perspective, WE are the victims in this endless battle that has turned our loving husbands and wives into irrational, unreasonable strangers.

But once in awhile, we are offered a glimpse into THEIR world and emotions. William Utermohlen let us into the world of AD with his stunning self portraits of his descent into Alzheimer’s Disease(CLICK HERE for slide show of portraits). David Howe let us into his world with his perceptive essay –Living in an evil fog. And once again, Richard Taylor, Ph.D ( Alzheimer's From the Inside Out) lets us into his world by telling us that it is fear that propels his anger - the outside world’s perception that he is “mad at you”.  See below for another of Richard’s insightful essays on what it feels like to live in the Alzheimer World:
 
I Had Thought I Had Overcome Everything Worth Fearing – NOT.

For as long as I can remember, I have feared snakes. I have at one time or another in my life
feared polio, shots, tall women, death by suffocation, failing a spelling test, asking a girl to go
out with me, the atomic bomb, going to weddings where Aunts would kiss me, and did I
mention women who were taller than I was? 

I am older now, we have all but eliminated polio as a disease in the world, shots
don't bother me, frankly I seldom run into women who are tall than I, I still
become anxious at the thought of drowning, I do not have to take spelling tests
(Thank heavens for Spell Check), I've learned to live with the bomb, I can now outrun
 most of my kissing aunts, and most all of my family is through getting married
 (or at least I hope so as far as my own children are concerned). 

So what is left for me to fear? I'm not concerned with being stalked by lions
or Dinosaurs. I am large enough that street criminals do not present much of a threat to me.  

However, most unfortunately for me I now am living with the disease of dementia,
probably of the Alzheimer's type. I AM PROBABLY MORE FEAR-FILLED NOW THAN
I HAVE EVER BEEN IN MY LIFE. I am fearful of tomorrow, and tomorrow and tomorrow.
 I am beginning to be fearful of my todays. I am fearful of myself and my ability to
know what is going on within and around me.

I am fearful of others because I sometimes know, and sometimes suspect those around
me are not being truthful with me. In fact it would be easier to list what I am not fearful of:
my grand daughters, my dog, my garden, the Dali Lama, and a few other people and things. 

I do not fear things outside of me; I fear what is inside of me. I fear I am losing
control of what rightly or wrongly I have long thought I was in control of, me,who I am,
how I am, how I think, what I think about. It's all seems up for grabs now.  

What happens when I lose confidence in my ability to think? When I begin to suspect and
then confirm that what I thought was true, was in fact not true - at least in the eyes
 of most others? What happens when I know my thoughts are confusing rather than
 clarifying to me?

I am trying to explain why I am sometimes mad at you, for no reason apparent to
either of us. Why I shout at you when you are trying to do something of value for
me or to me? I'm not mad at you. I am not mad at you. I'm not mad at anything
 or anyone. I am fearful of my own self. I am anxious about it. I'm fearful of not
 knowing who I am. What's going around me.

My sense of a lack of control, lack of knowledge of myself and my world. I'm scared,
I'm afraid, I'm fearful of my own shadow because I don't know who that is who sometimes
 follows me around morphing from a giant to dwarf as I change directions of walking. 

So how can you empathize with my situation? You who are still scared of snakes,
losing your job, if your hair is falling out, if you have bad breath? I don't mean to
diminish the importance of your fears; I just want you to ponder the ultimate
fear, fear of watching yourself as you know yourself and as others know you die,
morph into someone no one knows and perhaps no one including you may particularly
like or love.

I just want you to ponder how it feels to be out of control of your thought processes
(and sometimes be aware of it and sometimes not be aware of it, and never know
 what state you are in), to not trust what you see, hear, smell, reason to be what others
 see, hear, smell reason. This is my world. This is what is going on between my ears – some
 of the time.

  Richard

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