My father died on November 23, 2009—the Monday before Thanksgiving. It will have been six years to the day this coming Monday. It was a difficult road that led to that one moment in time, that moment when he took his last breath. I saw him go from a decisive man to someone who could not select an ice cream cake at Baskin Robbins without me leaving work and going to his rescue. I saw him go from grabbing a shovel and hand filling a grave while they got the equipment in place to being unable to even turn over in bed. I saw his brilliant mind betray him, turning fantasy into reality and trapping him in his own private hell.
It reached a point where every night I begged God to take him—and then felt guilty when my request was finally granted. It may sound cruel, but there are blessings to be had when Death comes quickly.
We never really knew exactly what was wrong, just that it was something terrible. Although the world thought he had Alzheimer’s, that was not the case. Doctors told us it was either Shy-Drager Syndrome or Diffuse Lewy Body Disease. I’d never heard of either, but at his death I knew enough about both to believe it was the latter of the two. Shy-Drager did not have hallucinations. My father did. The only way to know for certain was to allow them to autopsy his brain. Since neither was hereditary—or curable—it didn’t seem worth the effort.
He was originally diagnosed with Parkinson’s, a mistake that is commonly made with Lewy Body Disease. It mimics Parkinson’s and Alzheimer’s, but if you treat it as either you shorten the person’s already shortened lifespan. From the onset of symptoms, a person usually lives five to seven years. The problem is recognizing the beginning. His started with a tentative nature, an inability to make decisions, and a penchant for being unreasonable—like when he wanted us to form a family quartet and sing every song for the Service of Remembrance in 2000. He didn’t understand why that couldn’t happen. I didn’t understand how he thought it could.
He probably—no, make that most definitely—should have left us long before he did, but my mother was unwilling to allow that to happen, hence measures were taken that we all originally agreed did not need to be done. But when the time came to refuse a feeding tube, I called my brother to tell him she wanted to do it. His response? “But we’ve already discussed that!” My response? “Well, we’re going to discuss it again.” It really wasn’t a discussion. She said it was being done because she couldn’t stand to let him starve to death. And so it was. I have no problem with feeding tubes when there is quality to the life being prolonged, but that was not the case with my father. I’m fairly certain when they were reunited in death he gave her a significant piece of his mind.
When you love someone, there may come a time when you must let them go, when their suffering becomes so great that you long for their release. It was easier for me; I could clearly and objectively see the hopelessness of his condition. I could also understand my mother’s reluctance. She had loved him for over sixty years and been married to him for over fifty-six. From the time he became bedridden in June of 2003 until her death in May of 2008, her life had centered around his care. The unwillingness to hasten their separation was to be expected. Expected, yes, but acceptable? Not so much. With his passing came a sense of overwhelming relief and peace—and incredible guilt that I could feel that way. It is a quandary many of us face when Death takes its own sweet time in arriving, because letting go while holding on is an impossible task.
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