dramatic lifestyle portrait of young sad and depressed man lying thoughtful and pensive on bed looking away feeling lost thinking suffering some problem in sadness emotion and depression concept
We’re in his bedroom. We spend most of our time there. He doesn’t leave this room much-- only to the bathroom as needed, the kitchen sometimes, living room almost never. To the hospital in a hurry, to an ambulance when they have to come. There is laundry everywhere. Dirty sheets, bloody sheets. Dirty clothes, bloody clothes. When he’s bleeding—and I tell him it’s not his fault-- he’s upset and embarrassed. It makes him mad. I do a lot of laundry.
While I do load after load of laundry, we watch TV together.
He’s lying on his bed, collapsed by his weight and exhaustion and pain. He’s propped up by many pillows and sheets wrapped all around him, it’s hard when he has to hurry to get to the bathroom. Sometimes he doesn’t make it and then he is furious-- embarrassed again. And he yells at me, but I know who he’s mad at. He has no control over his body.
Because he has no control over his body, and no control over the life that he is slowly—and painfully—losing, he wants to control everything else. And that means me—and the laundry. Here we are two grown adults, brother and sister. I have come here to help with his food and his meds—and getting to the hospital when he needs that. And all this laundry. Sometimes several sets of sheets each day. His clothes, his underwear and sweats. His abdomen is so distended he has to wear elastic waist sweats. And all of this is covered with bodily fluids. He bleeds into everything. Blood from his rectum, blood from the open sores on his legs, shit and urine when he does not make it to the bathroom. Every day a huge pile of laundry. When I come on the weekend there is so much laundry.
The laundry center is his high-rise apartment building is 13 floors down. I carry one bag at a time, and the detergent and bleach. And quarters. The laundry machines and the dryers are coin operated. Larry is organized. Did I mention the he is an engineer? He has jars of quarters just for the laundry.
So, you would think I would fill my pockets with quarters for the many loads of laundry. But no. He’s going to control this—and me. For each load of laundry I take to the basement he gives me four quarters. Four and no more. One load at a time. Four quarters at a time. Each time he doles out the quarters—from a large mayonnaise jar on his lap in the bed—he also gives me instructions—every single time: the water temperature, the wash cycle, even which washers to use— “Use the two at the far-left end if you can.” He hasn’t been to this basement laundry room in over a year, but he gives me orders like I’m 8 and he is my mother.
Later when I would tell this story—to my friends and in the Caregiving 101 class I taught—someone would always ask why I went along with this. Why didn’t I just fill my purse or pockets with quarters? Why didn’t I take all the laundry down at once and use six washers at a time? The truth is that it didn’t occur to me. I guess I never wanted to fight with him, I never wanted to say, “Oh, for Christ’s sake I got this, I know how to do laundry.” Because—even though I could not have articulated it at the time, I didn’t want to say—or imply—that I could do this simple household task and he could not. At some level I knew—as irritating as it was, and as he was, that he needed something to control—and it was going to be me.
Later –after many misdiagnoses—we’ll learn that this is Anti-Trypsin Disorder, also called Alpha One Anti-Trypsin. It’s an autoimmune illness. His organs are going down one by one. His body has turned on him. Right now it’s his liver, hence the many wrong diagnoses: Wilson’s Disease, Non-nutritional Sclerosis, Hepatitis (A, B or C), Hemochromatosis and others.
He’s 42, and always so independent—and is still insisting on being independent. He’s tried so hard. But he’s needed me to come this weekend. And more often. More weekends. It’s getting much harder. His 300 pounds anchors him to his bed. He can’t stand to cook or to pee. He’s smart, an engineer, he knows how to fix things but he can’t fix this. He’s single, never married or a had partner—never even a date. Always embarrassed by his weight. And now this.
He grunts when he moves. Each pain is an insult; his body betrays him. He’s so angry. He swears, “Shit”, “Fuck this”, “Fuck me” and, “Shut the fuck up”, when I make a suggestion.
I’m the little sister. His baby sister at 35. How frustrating my presence must be. And has always been. Always younger, always smaller, always thinner, always busy and dating, just now I’m going through my second divorce. My life’s not perfect but I’ve had the life he can’t have. And he had to call me and ask for help. There is no one else. Years later I realize how hard that must have been. To be so alone and in so much pain that he finally succumbed to asking for help. “Could you come this weekend?” What it must have taken for him to make that call. He’s my bossy older brother. The smart one. The financially stable one. The one who bailed me out so many times.
We’re the last two of five. Our older brother died first—ALS—Lou Gehrig Disease. He was staying with Lar then and he died is his apartment. Lar found him. One morning in bed. Lar found him dead. I can’t imagine that. Well, I do imagine that but I also know that what I imagine is probably not the reality. A dead body in your guest room. Your own brother dead in your guest room. What did that look like? What exactly did that look like?
He’s a design and industrial engineer, a very successful one. Bridges mostly. He knows materials and tools and math. He explains “brassing” to me. Where the tools go. How to keep track of them. The tag for each tool. Take the tool, leave a tag. The tags were brass in the olden days, hence brassing. He’s competent, smart, skilled. He’s traveled all over the world to build bridges.
I have told him about recovery and therapy. He doesn’t get any of that. Feelings and emotions don’t make sense to him. I talk about our family and our childhood. “So what, it was hard.” He won’t go there. I get that. If he let feelings in, he’d explode. Our family was trouble. Dysfunctional. Addicted. Alcoholic. It affected each of us in a different way. I got small. He got big. Sig got drunk. Joy got perfect.
We are watching TV. It’s Ken Burns documentary on The Civil War. Episode after episode each weekend I visit. We watch all those deaths, all those battles, those letters home from soldiers, and oh, that music. Ken Burns melancholy music. Lar is in his bed, the bed that will soon be his death bed, though neither of us has named that truth yet. He’s in the bed and I am sitting on the floor at the bottom of his bed.
Years later I will realize that by watching that Civil War documentary we are immersed in death. Surrounded by death. Battle after battle. Gruesome scenes. Amputations without anesthesia. Battlefield burials. It’s time. I keep my eyes on the TV and then I take my chance. Can I go to the scary place? Can we talk about this before he dies? I risk it.
“Lar, are you afraid to die?” I keep my eyes on the TV.
Just silence. Did he hear me? I can’t say it again. Too hard. I named the thing that we are avoiding.
And then I hear him. “Di, all I ever did was work.”