Caregiver Chronicles I: The Seventh Age

I want to try to write about this, to write myself out of the insanity, or to make some sense of it. I want to write for the people living this nightmare who can’t write about it. I want to learn from the wise people who have figured out how to handle this. I want to sort through self pity to resolution, to clarity. There has to be some learning here. There has to be some sense at the end that I did the right thing, that I acted with love, that I honored this person who opened up my life. I have even been given a teacher, a guide, in Amy, Douglas’ caregiver, to help with the work, but also to reach for compassion. Amy has seen everything, and she is resilient and kind and wise. Each case she has taken has helped to make her a teacher and I want to meet her expectations, too.

I write in the middle of the night because there is no escape from it. Douglas has been agitated all evening, restless, in the grip of a delusion, unable to sit, eat his dinner, and watch TV with some modest focus, or at least lean on an arm, nodding off, scratching his scalp, at the kitchen table. Dinner is his “sundowner” time — an agitated state at the end of the day common to dementia patients. It’s the time, in a nursing home, when bedlam suddenly reigns and everyone is drugged into a stupor. “What do you want me to do, what am I supposed to do now?” he keeps saying. “I want to get out of here.” Amy has gone home and I feel helpless to distract him. I don’t know what else to offer him except for the TV, so limited in imagination am I. Conversation doesn’t work, and I don’t have much conversation in me right now. I miss the time when we could talk! I don’t want to be responsible for his every decision, to sit, to stand, to pee. I don’t want to participate in his paranoid fantasies, though he seems to depend on me to believe him, to participate in conquering our enemies together. He needs me so much. I am his conduit to the world, and I just want to distract myself, mindlessly playing solitaire on my phone.

Dinner momentarily centers Douglas. I’ve given him a cheese omelet, and green beans, my failsafe menu, because this food lover, whose first wife’s cooking was the stuff of legend, is so hard to please now. He extravagantly praises the omelet and green beans, and this soothes me.

Then the paranoia resurfaces. “I am so STUPID, I should NEVER have let them get control of me, oh my God, I can’t BELIEVE I’ve done this to us. We’re doomed. Now we’re DOOMED…” I say nothing.

“You don’t understand,” he goes on. “The levels are color coded. We are never going to be able to get out. The only way to change levels is through the red wine.” The prevailing wisdom with dementia patients is to go along with delusions, don’t argue, so I say, “Well, I have some red wine, do you want some red wine?” Frustration has put an edge in my voice. “Yeah, yeah,” he snarls, suddenly angry and suspicious. “You don’t understand, you’re making fun of me, you don’t believe me, you think I don’t know what I’m talking about.”

“I’m trying to understand,” I say. But what’s the point? I just need to get to 10 o’clock, when we can go to bed. This has been an annoying day. The dishwasher is not working, and I have had to hand wash two days of dishes. First world problem. Something happened between Douglas and Amy this morning while I was at church. She won’t tell me what, but she’s clearly upset, and he knows he’s in trouble but won’t tell me either, has asked me to apologize to her for him. I used dental floss too vigorously, dislodging a crown, which I have put in a plastic bag for the dentist to re-insert. The toilet in the master bedroom isn’t flushing right. When Douglas finds out about the dishwasher, he’s off on another frenzied tangent. I won’t tell him about the toilet — he’s terrified of the toilet.

Now I’m up again in the middle of the night because Douglas refuses to get back in bed after using the commode. This is something we do three or four times a night, this dance of wills. I try to talk him back into bed and he refuses because if he gets in bed, the plot will unspool, “they” will “get away with it,” and we will be ruined. Tonight, unskilled as I am at this, I try to make him feel guilty, telling him that as he is breaking my heart by refusing to get safely back in bed, I will go to the other room. And here I am at my computer.

This is crazy. I keep thinking I should reread Ethan Frome to see what wisdom Edith Wharton has to offer. But let me begin with Douglas, who has never been an easy man, who came into my life just as I had taken myself out of a marriage that was running on fumes. Douglas, at almost 70, was too old, it seemed — I was 50 — with arthritic fingers and a bit of a short-fused temperament and a former wife still at the center of his consciousness. He was just finishing a law practice, and he was dating women with focused attention, younger women whom he would woo and bed and eventually gently send back into the dating market. I thought, no doubt flattering myself, I could be arm candy, a younger woman whom he would take out and about in this sophisticated city. He seemed to find me, a middle aged naif, attractive.

But then he got interesting. He was game, he was devoted, he was in love. He loved women and his self assurance made him physically attractive. He had a history in the corridors of political power. He played a wily game of tennis wearing a cap that said “Old age and treachery will always overcome youth and skill.” When I talked about Joseph Campbell’s books, or said archly that I thought St. Paul was sexist, he took me on, as if my opinions were worthy of debate. Turns out he’d spent a period of his life studying the Bible in the mornings before work. He knew Broadway theatre, too, and we talked about Lerner and Loewe, Rogers and Hammerstein, and his favorite, Andrew Lloyd Weber (he wasn’t much of a Sondheim fan). We listened to Brahms’ first symphony snuggled up on the living room couch. He showed me a letter written by his son describing a toast he had given to his children, on one of their annual Caribbean vacations, in which he said “This family is under a great umbrella of love, and there is always room for more under that umbrella.” And I thought “I want to be under that umbrella.”

Now I am the umbrella, and I am worn thin, I am angry, I feel trapped, I am frustrated that I can’t get it right. What is it that gets under my skin with this lovely man who has lost the ability to make sense of the world around him, whose anxiety consumes him, who must find the world very, very frightening now? Watching him sit on his commode, or cleaning him up after an accident, I make a list of words that describe his behavior now — argumentative, negative, snarling, sarcastic — and knowing that the behavior I describe exists because he is so angry at himself, because he hates himself without all the power, those lightning bolts he carried in his fist as a younger man. I clean him up, trying to minimize the humiliation of it all, but I polish those words in my mind. I keep thinking that this will never ever end. Everyone reaches out to me — my daughters, Douglas’ daughters, my friends, but they don’t know the rotten center of me. I want this to end. Douglas’ mother lived to be 100. Douglas is 96.

There is a next step. He could go into assisted living, where he will be cared for by professionals around the clock, instead of for the eight hours a day that Amy is here — if I can keep Amy. He told her yesterday that she couldn’t speak English, that she didn’t have a brain, and he threw his dirty, peed-on undershirt in her face. Amy is a pro and she’s stubborn, and she’ll take it until she decides not to.

But sitting on the terrace, looking across a post and rail fence at a meadow ringed with trees, essentially unchanged in the sixty years he has lived here, Douglas can find a moment of contentment. He is interested in the contrails and the flight trajectories of planes going overhead. He has a theory that they are all going “home,” to Andrews Air Force Base, called in by the generals. He hopes that doesn’t mean there’s trouble coming. He looks out at the pastoral scene and says “We are so lucky to be here. I’m going to die, but I wish I could find a way to be here after I am gone.”

Douglas built this house with his first wife. They found a picture in a magazine and, using the photo, counted the rose red bricks in Flemish bond in order to gauge its dimensions. He took long lunches, leaving his office to come check the progress of the contractors while grabbing bites of his tuna fish sandwich. With his wife he got someone to carve an American eagle into the mantel, picked the Williamsburg paint colors for the interior, the young willow oaks that would shade the terrace and the dogwoods lining the driveway. This house, this property, is Douglas’ oeuvre.

He doesn’t remember all the details now, but Douglas remembers his emotional attachment to this place. How could I send him away from it? How would it feel to put him in a car and take him to a strange building where he would have a room with a view of the parking lot? How would it feel to watch his confusion and his rage, when he figures out that that room is “home” now? How would it feel to go home to his house, knowing how I had betrayed him?

I have a plan to find a night person so I can get some sleep. Today was a bad day. They’re not all like that.