My father has dementia. And like many dementia patients he, as they say in the healthcare world, exhibits aggressive behavior. Last week this behavior landed him, for the second time in two months, in the Adult Behavioral Health Unit at the local hospital. Translation: the locked psych ward. I describe the unit as the place nightmares are made of. When I tell people where he is and why, they say, “That’s not your father. That’s the disease.” I visit him every day and it is crushing me.
Friends call and text and email me. “How are you? Are you okay? Can I help? How’s your Dad?” It takes every ounce of energy I have to go to the hospital every day and tell my father, “No Dad you can’t leave today.” I don’t have the energy to lie to them that I am okay. But that’s what they need to hear. They want to help. I get it. It is lousy to feel helpless. It is lousy to watch a friend in pain. But I don’t need a glass of wine, or a girl’s night out, or my groceries bought, or my kid’s picked up. I need for this not to be happening and they can’t do that for me and so I want to punch them.
Some friends know what is going on and they have not reached out to inquire as to how I am doing. I want to punch them too.
Monday, I get good news. My Dad exhibited good behavior over the weekend and he will be transferred back to his nursing home on Tuesday or Wednesday. I am thrilled. I can make it through another day. But then yesterday, the case manager calls me. My father has been aggressive again. He isn’t going anywhere. I feel like I have been punched.
So now what?” I ask.
“Well you know,” the case manager says, “we will give it a few days.”
“And what do you expect will be different in a few days?”
“Well you know, when he has a few good days he can go. You know?”
“No I don’t know,” I say. “I am going to hang up now as you have nothing to offer and I have work to do.” I want to punch her. I suspect she wants to punch me too.
I go for a walk. I feel weak and that my legs might buckle under me but I read somewhere how important self care is for caregivers. Oh, wait. I wrote that crap.
I pass a postal worker. He is whistling. I want to punch him. A man walking his dog smiles and says hello to me. I want to punch him too. Doesn’t he know it takes too much effort to reply? I pass two young mothers pushing strollers. I say hello to them. They ignore me and I want to punch them because they are rude.
I go to the hospital. My Dad looks so old, so sad, so frail. I ask his nurse for an update. She says she hasn’t been at work for three days and starts to tell me what she observed three days ago. “That’s old news,” I tell her. “That’s not useful or relevant.”
One of the patients comes into the family room. “Satan Baby! Satan Baby!” she screams at my father. “Fuck you Satan Baby!” I am afraid she will punch me.
As I am leaving I hear the nurse talking to my father. “Joseph,” she says, “It’s time for dinner.”
I turn around. “He goes by Joe, not Joseph.” I want to punch her.
I call the doctor. “How can we improve my father’s stay?” I ask. “Can we put him on the schedule for fresh air breaks?”
“Sure,” he says. “I will add him to the list but the unit is short staffed so he probably won’t get them.” I want to punch him.
I send a text to my sisters updating them. One tells me how upsetting this is for her. Another asks if the nursing home will hold his bed. “Yes,” I respond. “But I have to fill out a pile of paperwork to make that happen.” No response. I want to punch them.
I come home from the hospital. I am in yoga pants, unshowered. I muster every ounce of energy I have to change into jeans and a blouse because my son is receiving two awards at the school committee meeting. My hair looks okay so I skip the shower and we go. My son receives the first award. I am smiling – a real, genuine smile. It feels good, not like earlier when I tried to fake a smile during a company-wide video meeting but I couldn’t do it.
Then the department head announces the winners of the second award and she doesn’t announce my son’s name. As the other students are taking a photo with the superintendent of schools, my son whispers to the department head that she forgot him. She gestures for us to step out into the hallway and hands him his certificate there. I want to punch her. My son whispers to me to let it go. As we head to the car I tell him how angry I am.
“Don’t mention it again,” he tells me. “It’s not a big deal.”
“Yes, it is.”
“You just want the whole town to know you have a smart son.” He’s right. I do. At that moment, I really do. “But recognition doesn’t matter Mom. We both know what I did. That’s what matters. ” I want to hug him. And I still want to punch her.
On the drive home I linger for a few extra seconds at a four-way stop sign. A man in a pickup truck flashes his lights signalling me to go. I want to punch him.
At home my husband asks me to do something simple like put my dishes in the dishwasher. I want to punch him. Doesn’t he know I am fragile? Why does he have such high expectations of me?
I check my work email before I go to bed. I want to punch all of my coworkers.
You. You will read this post and feel sorry for me. You will comment with some words of encouragement. I want to punch you. I don’t want your pity. And you. You won’t bother to comment at all. How insensitive! I want to punch you too.
Someday, if I live to see 90 and I have dementia and I exhibit aggressive behavior, no one will be surprised, least of all me.