To my readers, here is what I want you to know.
I wrote this short book because if you are reading it, you are likely in hell or witnessing it. I am going to be honest about the process that we went through and I am going to offer suggestions, alternatives, and options, so that you and your loved ones do not have to suffer as we did.
My way of sharing with you some of the tools I created along the way are marked with this sign: ⌘. In the world of Mac computers, that clover-leaf is designated the “Command” key, which is what I want to give you for reasons that will become clear as you move through this narrative. Command over what happens in terms of how you deal with it and what you can do about the bits you can’t actually do anything about.
The three of us; my husband Michael, his mother (I call her Mom), and I, each had our own reasons for being 100% loyal to our promise to keep my father-in-law at home and to never send him away to a residential nursing facility.
As you read this book, you will likely realize that we were all in denial, but we had made a promise to Lou and to one another, not to betray him. In hindsight, we were 100% wrong about the decisions we made. But we were doing the best we could with the information we had at the time.
Here is the information we now know.
My heartfelt wish is that it helps you and yours.
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August 11, 2014
- Robin Williams Died.
- The Mass Media went berserk.
- The world lost a heroic man and a genius.
- As a world-wide celebrity, he had access to the best doctors and medical care.
- Robin’s wife, Susan Schneider Williams, undertook a journey to find a way to educate the medical community about Lewy Body Dementia.
April 21, 2016
- Louis Cappello Died.
- The Mass Media was silent.
- We lost an extraordinary father and husband.
- As a working-class man, he had access to doctors and medical care.
- Lou’s daughter-in-law, Dawna Cappello, undertook a journey to preclude other families from going through what hers did with Lewy Body Dementia.
Lou Cappello died in April 2016, and this story is being written in 2017, so you may have heard the term Lewy Body Dementia because of the suicide of Robin Williams. It wasn’t until I was working on this book with Susan Heller that we came across an article by his wife, Susan Schneider Williams, written for the Official Journal of The American Academy of Neurology in September 2016.
What happened to Robin Williams is exactly what happened to my father-in-law Lou, though the process was mirrored back-to-front. Lou’s descent began with Parkinson’s disease and ended with Lewy Body Dementia; Robin’s nightmare apparently began (though no one knew it at the time) with Lewy Body Dementia and ended with Parkinson’s disease.
Susan Schneider William’s article is an outreach directed toward the medical profession. This book is the working man’s version of that outreach, directed to the family and friends of those dealing with these complex and difficult diseases.
* * *
OMG! Are You Kidding Me?
My view of the road became distorted and turned into a kind of hazy tunnel vision. The tree line whipping by me on both sides looked like green paint splattered haphazardly on a blank canvas. Tears were rolling down my cheeks and literally forming puddles in my lap. I started yelling. “WHY?! Why is this happening?”
Months and months of sleepless nights, it was relentless. My husband, my mother-in-law, and I, getting up every night, over and over and over; we were beyond exhausted. We were frightened, frustrated, and at our wits end. My father-in-law Lou, had Parkinson’s disease which is challenging to begin with, but things were going from bad to much worse. It looked like he had dementia too. Come to find out, that is not uncommon among victims of Parkinson’s disease.
Lou was hearing voices and seeing people who were coming to get him, he was terribly frightened. At the time, we thought they were delusions and we believed our constant and repeated reassurances that nobody was there and that everything was okay would relieve his anxiety and paranoia. But unbeknownst to us, from his perspective, he was telling the God’s honest truth. His brain was delivering information to his eyes and ears that was as real to him as the seat that you’re sitting on is to you. So Lou was reacting the way any of us would if we were being menaced and our lives were being threatened. My mother-in-law Barbara and my husband Michael were horrified that Lou thought anyone wanted to do him harm.
* * *
I believe in personal accountability. I also believe each one of us is here to do what we can, as Dr. Michael Beckwith artfully puts it, “...to be a beneficial presence on the planet.” Participating in this Earth-walk can be both a brutal and exhilarating experience. So my intent is to look for the positive and share what I have learned about the dark side. Because we are all on the same journey; that of being a self-aware somebody in space and time.
That said, I didn’t feel like I was on the planet, I felt like I was in hell and I was howling my fear and fury at the Heavens. When comedians talk about the ugly-cry they often get a laugh, but that is exactly what I was doing; sobbing, hyperventilating, screaming myself hoarse.
Eyes closed, I told myself to snap out of it and to just deal with it. I kept trying to calm down and then something very strange happened. Just like that, I became completely still. Four words, one at a time, dropped into my head. “You. Have. No. Control.”
Okay, did I just hear from God, or am I doing my own version of Lou, hearing things? But I knew I wasn’t making it up. Nothing like that had ever happened to me before. And it was true. I could not begin to control what was going on in Lou’s head, in his heart, and his body…what a relief.
Suddenly, I was back to furious.
Eyes turned skyward, I screamed like a banshee, “Are you freaking kidding me? Again?! WTF?” How many times was I going to have to relearn the fact that I have no control over anything? “I KNOW I don’t have control. THANK YOU very much! REALLY?!”
My heart was racing, practically beating out of my chest, and I may have hammered the steering wheel with my open palms four hundred times. Finally, I snapped back into time and the see-saw shifted again.
I sat without moving, without speaking; barely breathing. I’d been driving for close to twenty minutes without ever once looking at the road. How the hell did I get home? I knew I was exhausted, oh my God, did I fall asleep at the wheel? I don’t remember steering, I don’t remember putting on my blinker, I don’t remember turning off of the highway. I wasn’t driving, but somehow I arrived safely. Then it hit me. Now my tears were soft and in deep gratitude, and this time when I gazed skyward all I could say was, “Thank you.”
I sat quietly allowing my physiology to catch up with the peace that was filling my soul and the next thing I heard was, “Share your story; help others.” And this time there was absolutely no doubt in my mind. We were witnessing the trauma of Parkinson’s disease and the drama of dementia, and Somebody was telling me that I needed to tell others, so they wouldn’t make all the same mistakes we did.
It was time to sit down and write.