October 16, 2000
What Dementia Means

Something has to change in our society.  American society abandons demented people and their caregivers today as surely as it abandoned human rights in slavery days.

What amazes me, over and over, is how easy it is for people to go into denial about what Alzheimer's and dementia mean.  Even those who are close to it are often unable to face the pain.  People ask the caregiver how she is doing, how her loved one is doing, but they are not prepared to hear the truth.   As a caregiver who wants to keep her friends, one learns to filter one's true feelings and reserve the horrible details.  One wants to please one's friends and family.  One tries to please them all.

Here is what this disease means for a caregiver.  It means you will experience desertion.  Your friends and family will bail out on your loved one, and your loved one will soon begin to experience what it is to be abandoned by his whole society.  He will feel betrayed, and there will be no one around to blame but his closest caregivers.  You will be accused of betrayal one way or another.

Caregivers learn to face some of the most basic human fears.  Fears of weirdness.  Fears of difference.  Fears of facing our parents' bodies, and their excretions. Fears of being stared at in public, and of befriending the sick, the old, and the strange.  Our only consolation is the knowledge that we are developing a stronger, more spiritually oriented understanding of the world.  We give up hope over and over again as our loved ones' progress into the disease proves over and over that the most inconceivable losses are still possible.  Others, those who are not forced by duty to become caregivers, yield to fear.

Dad has been acting out his anger for eight months.  It has intensified over that time, and because of his lack of coordination and his disorientation, he has become dangerous to himself and others.  The professionals at Britthaven know how to handle him better than I do.  I once jumped in and tried to calm him down with the result being an injury to my thumb and the realization that when dad is agitated, he is not responding to reality.  I wonder what nightmare world is he in, what nightmare demon is he arguing with.    I can only guess.

In the big picture, the answer is clear to me.  He is angry at what this disease has done to him, how it took away his profession, his art, his life, his home, his ability to prepare food, to open a door, to control his bowels.  He is not able to understand why these things have happened, either. To him, he is still Tommy Thompson.  He is Tommy Thompson, living without being surrounded by his friends, his art, his books, his instruments, his pictures, his music. To him, his freedom was taken away by his daughter when she abruptly admitted him, against his will, to a nursing home. "Don't do this!" he said to me then, tears in his eyes, his face twisted into a miserable grimace.  I will never forget how I betrayed my father. And I will never accuse anyone of abandoning their parent without knowing the whole story first.

My father is in the hospital now because he has developed a whole range of symptoms which are a danger to himself and others.  He is in the hospital where they can closely monitor his response to the medication coctail he is on and adjust it to bring him more peace.  He is in God's hands.  I have other work to do.  Work that he has inspired.  Work that he would be proud of if he could be.  I am teaching again.  I am good at what I do, better than I used to be.  I am learning how to work with information systems.  I will take care of my responsibilities with a flourish, and I will inspire others.  I am determined.  As I give up my dad to God, I will learn how to pray harder for him.
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Besides Tommy's section of the site, the following pages are also related to Jesse and Tommy:
Blurred Time "The Sleeper": the aftermath of Jesse and Bobbie's car accident
Mike Craver's "Visiting Tommy"
Roots of the Red Clay Ramblers:
Fuzzy Mountain String Band: Jesse's mom, Bobbie, recorded with Rambler Bill Hicks and others
Hollow Rock String Band: Tommy and Bobbie Thompson named this band for their community

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October 16, 2000