Today would have been my Dad’s 79th birthday, but Alzheimer’s took him away from us four years ago. To expose the devastating thievery of the disease, I wrote this paper while getting my Master’s in 2008.
Allow me to pose a heart breaking question: what would it be like to die before one actually dies? I speak of a death of the mind, a death of the soul, a death of the personality. It does not matter that the heart still beats, the lungs still draw breath, the arteries and capillaries still circulate life blood. A person dies before they die, because what matters most is stolen, lost forever to a vicious villain called Alzheimer’s. Such a disease is monstrous, not just for the victim, but for those surrounding him or her. What’s even more terrifying than the monstrosity of the disease is the rampant occurrence. According to research done by the Alzheimer’s Association (2007), 1 in 8 seniors over the age of 65 have Alzheimer’s. The same research indicates that currently every 72 seconds, a senior is diagnosed with Alzheimer’s, though by mid-century, that rate will raise to every 33 seconds. Clearly with such likelihood that the author, or the reader, or at least someone they know will develop the disease, it is crucial to experience it first hand. I did just that with John David.
John is a 75 year old Alzheimer’s patient. He has been diagnosed with the disease since 2001, though his symptoms started to show several years before that. He has deteriorated quickly within the last couple years. He barely remembers his children’s names; when he does he confuses them with each other. His strongest memories are those from early in his life: his grandmother who took care of him, his time in the army serving in Germany, the early years of his marriage. He has an obsession with playing with his feces, cannot sleep through the night without soiling his bed, and has lost any sense of table manners. He in essence is a big child…though I’m sad to say with less dignity. Why is it when children are ignorant and make mistakes, society coddles them? But when it is a senior, whom nature is reverting back to a child, who makes innocent mistakes, society is frustrated or embarrassed by them? This was one of the most devastating lessons learned during my experience with respite…how heartless our society is towards those older than us.
Aletha is the devoted wife of John David. They have shared over 40 years of marriage together, years filled with laughter and sorrow, joy and pain. Sad to say, it is mostly sorrow and pain now. Aletha is John’s caretaker, along with her eldest daughter Nova who lives at home. Together, they make his meals and ensure he doesn’t choke while eating, take him for walks or drives, open his door when it’s nap time and lock it when it’s over, and mourn. They mourn for the husband lost, the father misplaced.
Their life has been degraded to an oxymoronic form of baby sitting, “senior sitting.” They receive no payment, no thank you’s, for both those only spring forth from people who know what they are getting, and John does not have the mental capacity to know such things any longer. Gone are the dreams Aletha had to travel the States with her husband, tucked in a RV. Now, questions form the landscape of Aletha and Nova’s lives. Incessant questions annoyingly repeated over and over from John: “When can I lay down? Why aren’t you at work? Will you unlock my door? Where’s Boomer?” Their days and nights are haunted by a lingering question: “When we will need to put him in a home?”
For 5 or so hours, I relieve them. I decide to take John David to the movies, so they can go and drown out the white noise of their living hell with the ca-chings of the casino. There, they do not have to worry about his meals, his naps, his slipping out and getting lost on a random bus to which the police officer berates them for “letting him out.” (Perhaps what’s worst than not giving a senior the dignity of a child is giving them the status of a dog.) There they can lose themselves and their worries in the loud monotony of pulling down the slot machine lever, the slow habitual spinning of 7’s and cherries and stars.
I arrive to find John in the bathroom with the door slightly ajar. I know it is him in there, because I hear this chortling giggle and wiggle of a belly. When asked about it, Aletha tells me he always laughs at himself in the mirror and slaps his belly. Perhaps he is so surprised at who is looking back at him in the reflection. “Surely that is not me,” he must be thinking, startled by the old man with rotted teeth, disheveled hair, and a hairy gut. What must it be like, to look in the mirror, only to have it invaded by a madman stranger?
After much coercion out of the bathroom, out of the house, and into the van, we are on our way to the movies. We decide to see a family friendly movie, the safest bet I figure for a man turned child. Amazingly, the one thing he does remember and worries about is the cost of the movie. I cannot even imagine one day going to the movies for a quarter, and the next finding it to cost ten dollars…which is how he must have perceived it. John has lost all sense of social skills, and as we sit in the quiet movie theater, he frequently asks me questions during the movie that I know those in the back row can lucidly hear. I am embarrassed. Even more, I am embarrassed at my embarrassment.
After the movie, as we’re walking back to the van, I ask John what he thought of the movie. A foggy haze passes over his eye, and he mumbles some “it was…”. It does not matter what adjective he fills in that sentence with, I know he doesn’t even remember what he has spent the last few hours doing. Wow, this calls for some ice cream, and so to Oberweiss we head. There he gets a Chocolate Malt, which I’m sure is a priceless commodity: a comforting memory of the times he lives in inside his head. While enjoying our ice cream and the dripping mess it is making down his shirt, we play Checkers. We attempt to, as he does not remember how. We pretend to play Checkers, which is fine by me. I’m good at pretending. The best part of the whole trip was in the car, when John, unprompted begins to hum at first—and then sing—to the Christmas music playing on the radio. I turn it up, we both sing, and it is a moment to savor.
Though this was only one moment of respite for Aletha and Nova, and John as well, it is a small part of the life I share with John David. You see, he is my dad. I am one of those children he barely remembers. On good days, he remembers me as the Mary from high school, and he asks “Boy, you’ve put on some weight, haven’t you?” On the bad days, he stares blankly at me. Since my family lives far away, every time I go home I provide respite. My mom and sister can get away to the casino. My dad can laugh at my silly jokes, even if he doesn’t get them. In my presence, all of them can escape from the undeniable pain of being the one who is taken care of, and the ones who must do the care taking. This is one story of one of the many diagnosed with Alzheimer’s every 72 seconds. What will the stories be like when the number increases to every 33 seconds? And who will provide respite then?