My husband has Alzheimer's disease.
We were told from the first diagnosis that it was a death sentence. There was no cure, no hope.
He has slowly gone through all the phases of the disease, from loss of memory and coherent thought to hallucinations and endless days and nights pacing like an angry tiger through the house.
Then, as in slow motion, one function after another was gone. The power of speech went, then the ability to write, the falling, etc., and incontinence.
A blocked urinary tract and high fever took him to the hospital and after massive doses of antibiotics he came home with a bladder catheter. He could no longer walk, so he became bedridden. He couldn't aim food into his mouth and had to be fed. He lost the ability to chew so his food was pureed.
He was in the last stages of the disease.
He became ill first with bronchitis and then pneumonia. I was told he might not last till morning. I stipulated no heroic methods in keeping him alive. Only that he be kept comfortable and free from pain.
Our medical profession can cure pneumonia and did so. But he could no longer swallow and a naso-gastric tube was inserted. It was the law.
It is an unholy law. Why is he being kept alive? His mind has gone. The sentence eight years ago was death. So why are we preventing death? All these long weary years nothing has been done to halt the inexorable march of the disease. Must we continue to endure seeing the ravage of this disease can inflict?
A year has gone by since the tube was inserted. His body has started to rot with decubital ulcers. Three times a day I change dressings on these wounds. He has to be turned every two hours, he is incapable of any movement on his own.
Nourishment is being pumped into him 24 hours a day, yet he is a skin-covered skeleton.
His heart is strong. They tell me he can go on a long time this way.
The irritation from the tube necessitates frequent suctioning to keep the passage clear. Both catheters need daily irrigating.
His room looks like a lab in a Frankenstein movie. An electric bed with an electrical alternating mattress. A machine for pumping the food in and another for suctioning. Shelves of necessary equipment, dressings, linens, medications, ointment, etc. Closet full of feeding bags, skin preps, suction catheters, irrigating equipment, underpads, etc., etc. None of this was needed before the tube.
I have a loving, supportive family and dear friends whose daily calls help dispel my depression. We all ask, Why?
I dearly love this man I married. Taking care of him at home through this nightmare should prove that. But I feel keeping him alive artificially is wrong. If he could enjoy this immortality the medical profession has given him I would greatly rejoice.
The tube has its uses where there is hope of recovery. With Alzheimer's disease there is no hope.
All we have to sustain us is the hope that our loved ones can pass on peacefully and with dignity. We mourn for them and die a little each day with them and hope when a merciful God says "Come" no law can step in and say "Not yet."
MARY VAN GORDER