Parkinson’s Scorched Earth: The Conclusion

Mike was living a real life horror tale with his disease.

You grab the good days when you can.

The conclusion happened January 29th at about 2:00 p.m. The scorched earth warfare waged by Parkinson’s and dementia against Mike prohibited his ability to swallow, and that was when he died. I should have seen it coming; he’d been losing weight and getting frequent infections. My Mylar balloons tried to warn me. Every time I browsed Amazon to order him fresh supplies, the balloons stayed my hand. “Wait,” they advised me quietly. “He’s not going to need those. Save your money.”

Speaking of balloons, it was Mike who introduced me to them. He brought me some when we got engaged, and after his hospital stay in 1996, he thanked me for his care with several Mylar balloon bouquets. He loved my cheesecake, and I told myself that as long as this continued, no worries. Denial can be a comforting place.

He often regaled people with tales of his years in the Navy during the Vietnam War. Later on, he added that the Navy gave him the happiest years of his life, and now I can see why. Time spent around other people enabled him to escape the reality of Viet Cong capturing people and Parkinson’s disease invading his body.

“Scorched earth” comes from the military strategy the US used to fight the Viet Cong. This strategy involved the destruction of crops, homes, and resources vital to the enemy. I don’t recall exactly when Michel’s war with Parkinson’s disease got ugly, but I know that dementia had imprisoned his talents. It whispered “scorched earth,” with gardening, driving, and activities of daily living becoming the first casualties. His frequent falls echoed “scorched earth,” necessitating admission to the Veterans home. The ability to swallow became dementia’s final target; yes, dementia can affect swallowing in its late stages. The patient’s cognitive function worsens until finally, his brain forgets how to swallow and sustain life. After his admission to the home, I learned that deep brain stimulation, when done in the subthalamic nucleus where Mike had it done can cause cognitive changes, including dementia.

I can sum up Michael’s fight with Parkinson’s by using an analogy about life. When I was ten, my mom sent me to a summer camp for three weeks. Other kids spent the summer; some stayed a week.  Some preferred sports; others leaned toward arts and crafts. One kid remained a loner and avoided most activities.

In many ways, life is like camp. God drops us off to “stay” for a while; some of us will remain here longer than others. Some people become writers or artists. Others go for medicine or law. Mike came to the camp of life with many talents, but as the years passed, he reminded me of the little girl who didn’t fit in.

His problems became apparent when his doctor attempted different medicines that resulted in intolerable side effects. At work, customers complained about his softening voice, accusing him of drinking (he was a teetotaler). Although surgery contained the tremor, it aggravated his cognitive changes and speech difficulties.

After Mike went on disability, he joined the neighborhood’s beautification committee. He had his horticulture skills behind him, and this seemed to give him purpose. Instead, after a few months, he came home, reporting that he’d been “ousted.” One of the other members who happened to be a nurse explained that Mike was exhibiting personality changes and none of them pleasant. Toward the end, he became a lone wolf like that little girl at camp.

Thankfully, the Veterans home nurses treated him like family. They appreciated the sense of humor and kindness still lingering under the dementia. He’d been supportive of my writing, and this continued on his good days. Up until a month ago, he giggled at my balloon adventures. I suspect that his relatives in Heaven will welcome him with love, balloons, and flowers. Whatever Mike saw upon passing must have been beautiful, for he had a look of awe on his face. His suffering is behind him, and I’d like to think that he’s filling up on cheesecake, picking balloons, and thinking of me. Heaven has surely gained an angel.

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Parkinson’s Scorched Earth – a Revisit

When people hear about the bad side of love, they think abuse or unrequited love. Parkinson’s scorched earth policy taught me that love has other dark sides.

I live in a forest. You’ll find Mylar balloon trees everywhere in my house. Butterflies, Disney characters, Valentine hearts, and glittering stars. At one time, Mike and I used to waltz under the fruits that grew on them. When we weren’t dancing, he worked outside in his tomato garden. Other times we’d browse brochures with which to plan amazing vacations in Florida, Nevada, Aruba, and on two occasions, Italy. At a party, he’d regale people with tales of his years in the Navy during the Vietnam War. For his living, he counseled unemployed workers looking for compensation, and the office became his second family. Time spent around other people enabled him to escape the reality of Viet Cong capturing people and Parkinson’s disease invading his body.

“Scorched earth” comes from the military strategy the US used to fight the Viet Cong. This strategy involved the destruction of crops, homes, and resources vital to the enemy. I can’t remember when Mike’s war with Parkinson’s began, but his disease whispered “scorched earth,” with gardening, driving, and activities of daily living becoming the casualties. The process might have started with tremors and loss of energy, but it ended with frequent falls, necessitating a wheelchair and admission to a nursing home. It’s not just about my inability to lift. Parkinson’s stiffens the body so that it becomes a dead weight. The docs came up with magic pills to contain the symptoms, but Mike’s body couldn’t tolerate their side effects.

I rate my visits with Mike into three classes: good, semi-good, and bad. Last two visits were good ones. Mike and I chatted as if he were healthy. He’ll handle a spoon and fork without help. His voice came through clear. Sometimes he might ask me about my balloons, and last time out, he encouraged me to buy a generator because of our harsh winter. On semi-good days, the alertness is there, but he’ll have trouble opening his eyes. He’s not able to answer, and when he does, people can’t understand him. On bad days, the dementia comes out in full bloom with hallucinations. On those days, he’s not allowed to be alone in his room because he tries to get up, and falls. What’s more, his personality changes have alienated him from friends and relatives. I think a lot of it is because Parkinson’s hereditary, and some relatives fear they might get it, too.

Thankfully, my family adopted him and visit. Bingo, movies, and other activities keep Mike engaged, and for a few moments he can forget his troubles. Sometimes I bring balloons for him and other residents. The staff has come to know me as “Balloon Lady.” When Mike embraces and hugs me, I know I’m in for a great visit. Sometimes though, the good visits can be tough because then I realize what we lost. Parkinson’s can’t destroy his spirit and his smile has endeared him to the aides and nurses. I’m hoping that a research scientist is reading this blog and works harder at coming up with effective treatment.

I’ve wish to thank my family and buddies who’ve supported me with Mike’s illness. My writing projects continue, and in my next book, I might introduce a character with Parkinson’s. I’m taking it one day at a time.

Barbara will be awarding an eBooks to a randomly drawn commenter.

1st prize Night to Dawn 25 PDF

2nd prize Steel Rose PDF

3rd prize Close Liaisons PDF

Mike Custer is husband of fiction writer Barbara Custer.

 

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