WHEN A PERSON YOU KNOW has Alzheimer’s, they die. Your friend, your spouse, your parent; the person you know dies and—I’m just going to say it—you wish the body they live in would go ahead and die too. Wouldn’t you want that for yourself? Do you know anyone, anyone at all, who would say—“Oh no, please, whatever you do, keep me alive. Give me a frizzy permanent and dress me in a housedress printed with huge daisies. Diaper me—hell, let anyone diaper me. Talk about me right in front of me. When I can’t sit up anymore, just tie me down on a gurney. When I start refusing food, take my money and pay someone by the hour to pour Ensure down my throat, then sit by watching Jerry Springer on the flat-screen TV you put in my room, while I lie there making animal noises and drooling bits of curdled protein product.”
“I want to die,” Mom said to me when I came to see her in her new custodial quarters. She had balked at physical therapy after breaking her hip, and now she was tied into her wheelchair to keep her from falling out. She’d been swatting invisible flying creatures and shouting at an imaginary intruder to get out of the room. Her babysitter said “Shush” and “Calm down baby,” eyes on the tube. When she excused herself to go get something, Mom seemed to calm down. She looked me in the eye for the first time in a year and said, quietly in her own voice, that she wanted to die.
She was being tortured by her own mind, but her words came from a place of certainty. I was her firstborn. She said things to me that you say to the child who defined parenthood for you. You blurt out true things, whether loving or hateful, because you can’t help it. As the repository for her true wishes, I understood she was referring to something she’d told me in the past: “If I ever get to a point where I’m helpless, I want you to pull the plug.”
It was she who called “time” after the person we knew as Dad left his body in a hospital bed with only a brain stem to keep basic functions going.
Now she was in the zone where the Marriott Corporation transitioned from hospitality to hospital. As in most similar facilities, the buck stops short of hospice. It makes sense. The money is in accommodating people who want to live in comfort, not those who want to die in peace.
When the elevator doors opened, I’d heard what sounded like an enraged animal. It was lunchtime and I thought I’d find Mom in the little dining room where the more able patients took their meals. When I walked in, I saw that the animal was Mom, refusing a spoonful proffered by her sitter. Her eyes were shut as tight as her mouth, so that her whole face was a shield. The spoon jabbed at it like a battering ram against the castle door. Behind it a bestial growl rose to a screech.
We rolled her back to the room she shared with another big, gray, diapered “baby” and another impassive babysitter. Her whole experience of life had been narrowed down to ingesting and eliminating liquid nourishment. Our family’s little fortune was going down the drain, hundreds of dollars every day. She would’ve been furious. She would have wanted my sister and brother and me to have the money right now, I was sure. But I guess the very fact that we would each receive a hefty sum of money when she died prevented us from protesting the extremes to which they were going to keep her alive.
How many other families are caught in the same situation, I wondered. I’d been on the business end of the assisted-living business, writing ads and brochures for the companies that operate these facilities. I knew how to speak to the guilt that lies in the hearts of my contemporaries. I just didn’t know how to talk back.
Every spoonful of Ensure took away from us and added to a corporation’s bottom line.
“I guess that’s just the way it is,” I said to Andrew.
“For your family. It wouldn’t happen in mine.”
Andrew’s father had died consciously and peacefully at home with his sons around him. Andrew remembers holding his hand and watching his spirit leave his body.
I came back to France feeling helpless and conflicted. There was a story in La Provence about a retired policeman in Marseille whose wife had Alzheimer’s. When she lost her smile, he told their children and grandchildren to come say goodbye to her. He cared for her himself as she declined, until the person he knew had left her body. Then he took her to their favorite spot by the water, sat her on a park bench where she could see the boats, and shot her with his service revolver. He sat with her and waited for the police.
The jury gave him a symbolic sentence and set him free. They called what he did an “act of love.”
I wondered, if some magic could have stopped time for my parents, when would have been a good point? Before his mind was dulled by drinking. Before her fears took over. I’d probably choose the day they came home from a trip to Paris, gleaming with accomplishment and adventure. He wore a dress shirt with French cuffs and new gold cufflinks. She was wrapped in mink and the fragrance of Joy. At the top of their game, they were truly ravishing.
As Mom lingered on and my reserves dwindled, Andrew and I periodically revisited our decisions, starting with: Did we want to stay together? Did we both want to keep living in France?
“What would it take to make you go back?” was one of our frequent gambits. We had stopped calling it “home.” “Back” was regression, and that was apt. We were happy with the way things were between us—fluid, optional, mutual. So the answer to both questions–stay together? stay in France?–was yes. But that would necessitate stepping up our efforts to make a living in France. There’s nothing more out of place in Europe than an American whose money has run out.
When our website brought the first Americans, J-C began to pull out of his funk and get interested in teaming up with us again. Since he was a legitimate French business owner, and his rooms had been approved for tourism, we would benefit from the collaboration.
We got him to let us appoint his rooms to the same level as ours, which entailed some skirmishes over personal taste and debates on whether thumbtacked posters were legitimate decoration. During this period, Jean-Claude became a verb in our private conversations, as in “He went and Jean-Clauded up the place”.
But the rooms didn’t bring in enough. One day, lured by a hefty budget, we suddenly found ourselves in the tour business. We took on a group that had rented a château near Aix-en-Provence.
I had a hunch they’d be bad. Andrew was sure of it.
A corporate executive from California was bringing his family, his staff and their families, plus a personal chef, for two weeks. His assistant had e-mailed a request for references and a proposal. It sounded like a lot of money.
“It sounds like a pain in the butt,” said Andrew.
I read him the part about the group being “interested in art, adventure, activity and intellectual stimulation.”
“Still,” he said.
We lined up the offerings: apéritifs at the château, cooking, art and French lessons for adults and kids, a mediaeval feast and lecture on château life, a private visit to the kitchen of a Michelin-starred chef, an art excursion through Van Gogh country, a tasting tour of the best wineries in our region.
Weeks of painful daily e-mail negotiation whittled the proposal down to a short list of tours and events at a fraction of the money. And no wine tour—they wanted the vintners to bring the wine to them.
“They’d like the vintners to come in person one evening and tell them what’s special about their wine, and if they like it, they might buy some,” wrote the assistant.
“Impossible,” said Jean-Claude, who had the wine connections. The very idea of a fourth-generation producer of highly esteemed wines peddling his best vintages door to door was too absurd to discuss.
“Assholes” was Andrew’s prediction. And so it was.
The boss was a short guy in a safari hat, with thick tinted glasses shielding piggy eyes. “He was the fat little kid at camp who took everyone’s money in card games,” said Andrew. His lock-jawed wife seemed disconnected. Their two young children were monsters, and their staff of helpless toadies squeaked whenever pressure was applied.
The days that followed, we agreed later, had to have been the worst you could experience outside of combat. They were loud, rude and stupid. In restaurants, they asked for doggy bags, something that is never done in France.
“Money can get you anything,” said a chunky toady kid.
“Not in this country,” Andrew answered.
During their private cruise of the Calanques off Cassis–the Mediterranean version of fjords–they skipped the full catered lunch and later commandeered the galley to feed at random all afternoon.
We got a late start for the Van Gogh tour. The boss’s son was eating his cereal, one grain at a time, savoring his power, while adults stood around and a toady coaxed, “Hurry up, big guy.”
Finally on the bus, Andrew took the microphone and gave an entertaining commentary on the tortured artist’s path toward the light, engaging even the children with colorful details. The boss, seated midway back, droned steadily to his seatmate about sports, computers, business and politics throughout Andrew’s discourse. In Saint-Rémy, he talked through an audio-visual presentation, while the kids made shadow-figures on the screen and their huge nanny sat in dumb incomprehension.
Then came lunch. Andrew and I had arranged with the restaurant for the adults to have the daily menu and the kids to have the “menu des enfants” to make things smooth and simple. But that fell apart immediately.
The boss’s wife “didn’t know what was in the chopped steak,” so she had the children’s menu changed to chicken. I translated frantically. Somebody would have two appetizers. Another would have only the salad, but a bigger helping. This person wanted the steak but not the fries. That person wanted the chicken but with fries instead of the vegetable. The server wrote and crossed off and re-wrote in her little tablet, huffing in frustration. The boss’s son crawled along the banquette like a beast with a long French fry dangling from his mouth. The daughter started slugging her mother, who gazed at her the way you might watch someone else’s malfunctioning machine.
I drank my rosé and Andrew’s. Next to me, the nanny kept elbowing me. “What does this mean? Can I have that instead? Tell her I want to change mine. Is this pork? I like pork. I want pork without the peppers. I don’t like peppers.”
The adults ordered Coke with their lunch, “Beaujolais Américain,” as the French call it. We had more wine. The ordeal wound down with everybody sated, if not satisfied.
“So where do we go after this?” asked the nanny, her enormous arm nudging away her empty plate.
“To the hospital where Van Gogh painted some of his most famous paintings,” I answered.
“Is the guy still there?” she asked.
I stared into her opaque eyes.
No,” I said. “He’s not there anymore.”
“Goodbye, au revoir,” we said as the group filed off the bus. The boss and his wife walked past us as if we were posts.
“If we’re getting into tours, it can’t get anything but better after this,” said Andrew.
–Marcia Muir Mitchell