Opening My Heart

My father has deteriorated quite a bit in the six months that have passed since the last time my husband, Benson, and I visited my parents. The Lewy Body dementia he suffers from is taking its terrible, inevitable toll. Never a large man, my father has become painfully thin. He doesn’t eat much any more. I catch a glimpse of him without a shirt one night when my mother’s helping him get ready for bed. His ribs stick out and his sunken chest is more pronounced than ever.  He’s always confused. It’s not clear that he knows who Benson and I are.

My mother is almost completely in denial about what’s happening to my father. There are moments when she seems to know that he’s dying. But most of the time, she refuses to admit this and insists he’ll get better. Despite the fact that my father struggles to walk and can manage at best a sort of shuffle, one morning she demands that we go for a walk in a nearby nature preserve.

To get from the parking lot down to the path, we have to navigate a set of steep concrete steps. My father is unsteady on his feet and I’m afraid he’ll fall, smashing his head or breaking his wrist. I squeeze in beside him on the stairs and hold his elbow, even though I know that if he loses his balance, we’ll both get hurt. But I can’t bear the way my mother goes down the stairs ahead of my father without once looking back to see if he’s OK.

My parents live in central Florida. The preserve is full of live oaks draped with eerie Spanish moss and tiny lizards that dart here and there. It’s brutally hot. Once we get onto the path, my father trudges along as best he can. But he falls further and further behind. I keep looking back and worrying as the distance between him and the rest of us grows, but my mother seems completely unconcerned.

“Mom, maybe we should slow down,” I say. “Look how far behind Dad is. I’m worried that he’s going to get lost or something.”

My mother snorts. “He’s faking. He does that to get attention. Just ignore him.”

I’m as shocked by my mother’s attitude as I am by my father’s condition. His physical and mental fragility are stunningly obvious. He has an illness that’s going to kill him. How can she think he’s faking?

Despite my history with my father, how much we’ve fought and how unresolved our conflicts remain, I suddenly feel intense compassion for him. He’s an old man suffering from a horrible disease. The past still matters, but in this moment, I know I must put it aside. I turn around and walk back to where he is. Then I match my pace to his.

He’s dragging his feet and his breathing is labored. This walk is clearly a huge effort for him. It’s so humid that it feels like we have to push the air aside as we move forward, and my father is wearing three shirts, something he insists on doing. His face is damp and there are big wet circles under his arms. I offer him some of my water, but he refuses to drink. I try to explain to him that he’s probably getting dehydrated because he hasn’t had anything to drink since breakfast. But I don’t think he understands me.

We finally arrive at an area with picnic tables and we sit down to rest. Benson and my mother are already there, laying out our lunch of sandwiches and fruit. I try again to get my father to drink some water, but he still refuses. I wonder if he’s confused by my water bottle, so I try pouring some water into a paper cup and offering that to him, but he still won’t open his mouth. He gives me a look of incomprehension, of fear. Has he forgotten how to drink? Has he forgotten what water is? Or does he just not have the ability to move his mouth muscles in the necessary way any more?

“Thomas,” says my mother, “Stop that! You need to have something to drink.”  She forces his lips apart and pours some water into his mouth. He sputters and chokes. Most of the water comes back out and dribbles down his chin and onto the front of his many shirts.

“Oh for god’s sake! Now look at you,” she says. She seems to feel some bizarre satisfaction at my father’s suffering. I’ve never known my mother to be cruel. Where is this coming from?  She claims that my father does the things he does – peeing in the trash baskets, trying to eat his hearing aides – just to aggravate her. There’s a barely concealed fury in her. Why is she so angry?

I make up a plate for my father and he does manage to eat a little lunch, so I have to be content with that. My mother chats with Benson and doesn’t seem at all worried about my father’s state.

Watching him trudge along as we head back to the car, my heart, my stubborn, unyielding heart, suddenly opens to him and I grasp the full horror of what’s happening – the parts of his brain that understand “take a walk” and “keep up with the others” are still working, but the parts of his brain that control his leg muscles and his speech are not. He cannot walk as fast as the rest of us and he cannot form the words he needs to ask us to slow down.

Back at the car, I watch my mother help my father with his seat belt. She looks up, and for a moment our eyes meet. In that moment, my heart opens again and I know – my mother’s furious because she’s in more pain than she can handle. My father is so sick that he’s left her far behind. He’s no longer the companion he’s been since they were teenagers, sixty years ago. She’s desperately lonely. He’s so sick that, instead of him taking care of her, as he did so faithfully for the many years of her illness, she now has to take care of him. Her guilt about those years prevents her from placing him in a memory care unit or even having someone come in to give him a shower. She believes she must do it all herself, but it’s too much for her.

She’s barely sleeping because my father gets up at night and wanders around the house, doing dangerous things like putting metal containers in the microwave and turning it on. She barely has a moment to herself during the day, because he keeps trying to get out of the house, so she has to watch him every second. He’s managed to escape several times and the sheriff has found him out near the highway. She’s worn out from changing my father’s bed every day and cleaning up his accidents because he’s incontinent and won’t keep his adult diaper on. Despite her love and her selfless caretaking, he “refuses” to get better. 

Perhaps worst of all, my mother is deeply hurt by the nasty things my father says to her sometimes. She doesn’t accept that he says these things because he has dementia – she thinks he’s just being mean. The parallels with the past are stunning. For decades before he got sick, my father insisted that no one should be upset by the terrible things my mother said when she was having an allergic reaction because they were her illness speaking, not her. And now everyone is telling my mother that she should not be upset by the terrible things my father says because they are his illness speaking, not him. I wonder if she will ever see the irony of this.

After we get home, my father falls asleep in front of the television. My mother takes me aside and says:

“I know it’s terrible, and I’m sorry, but I have to harden my heart. I have to save myself, I can’t let him destroy me.”

“Mom,” I say, “you don’t have to apologize. Surely you know that I understand how you feel. When I was young, and you were so sick, and there didn’t seem to be anything I could do to help you, I couldn’t bear it. I felt like I was losing my mind. I had to walk away to save myself. But I’ve always felt bad about it.”

“Oh no, Karen, don’t feel bad. I knew you had to go away. I had to go away when my mother was dying of cancer. I couldn’t bear it. I’ve never, ever blamed you, not once.”

I’m not sure this is true. My father always insisted that my mother was hurt by my absence and never understood why I visited so infrequently and was so tense and distant when I did. But I don’t argue with my mother now. I just try to continue opening my heart.