Hidden Valley Road: Inside the Mind of an American Family (32 page)

They were going crazy, and I was swimming at the country club,
Margaret wrote in her diary.
They are still crazy, and I am still swimming at the country club.

So she tried half measures. Margaret helped from a distance, sending cash and gift cards, and propping her sister up on the phone, listening and sympathizing. But she still felt too vulnerable to be part of their lives. “It’s like pouring a glass of water with no bottom in it. You can’t ever fill it up. It’s just futile to try and help them. It’s not like they don’t want to be better, but they just never get better. I really honestly stayed much farther away than Lindsay did.” She stopped visiting the hospitals, and stopped bringing her kids along on the few times she did.

“I’m very lonely on the path through recovery from my family,” Margaret said.

LINDSAY APPRECIATED HAVING
her sister to talk with—“just knowing that someone else knows what you’re talking about and knows the depth of the pain.” But Margaret’s distance from the family now felt like another abandonment. She decided to do the opposite—to continue caring for the brothers and seeing her mother and doing it all. Lindsay ran point on every bureaucratic challenge her mother and brothers faced: wrangling Social Security benefits, shopping for the perfect housing situation, overseeing their medical care, advocating for different medications when the current ones seemed to be failing. She took over the boys’ powers of attorney, and Mimi’s, too. When she assumed the caregiver role, she felt as if she were channeling everything about her mother that she admired—the tireless devotion that both doctors, DeLisi and Freedman, had noticed when they’d all first met.

“My parents were so devastated,” Lindsay said. “My dad really crumbled. And my mother really transformed and became this advocate.”

Lindsay knew what she was doing was putting her on a collision course with her sister. Where Margaret was staying away, Lindsay was wondering why no one was helping do what so obviously needed to be done.

“I’ll work myself to the bone and not ask for help,” Lindsay said, “and then I’ll be resentful.”

Lindsay was the first responder as usual when Mimi had another stroke, in early 2017. Once Mimi was in the ICU, Michael and Mark relieved her. Even Matt came by.

In March, Mimi was home and under hospice care, resting in bed without wires or monitors attached. Unless you could afford full-time help, hospice care didn’t mean actual care, just supplies like morphine and directions for how to care for your loved one yourself. In Mimi’s case, this meant dealing with incontinence and catheters.

Margaret joined them once Mimi was back home. She spent time holding Mimi’s hand, giving her little massages. Michael played Brazilian tunes on his guitar. Lindsay tidied the house. The three of them talked about old movies, enjoying being with one another. They spent ten days this way, until, out of nowhere, Mimi started to eat again.

“I thought I was dying,” she said. “That’s why I wasn’t eating.”

Then she asked for a soft-boiled egg.

MARGARET HAD A
trip scheduled to the West Coast, where her older daughter, Ellie, was touring colleges. She and Lindsay talked it over and agreed that Margaret ought to go, for Ellie’s sake.

But on the day Margaret left, a confluence of events hit Lindsay in a way she was not expecting.

First her brother Matt—once her soccer coach, now on clozapine and living in government-funded housing—pulled up to the house in his jalopy.

Then came Peter—her old Boulder roommate, now an inpatient at Pueblo, receiving regular ECT treatment—driven in by Michael.

Then came Donald—her oldest family foil, the one she once dreamed of burning at the stake—driven in from his assisted living center by Mimi’s housekeeper, Debbie.

All three sick boys were back at the house. Soon it would be just them, their mother, and Lindsay.

And Margaret was heading out the door.

Lindsay knew that this wasn’t forever—that the brothers were just visiting. But none of that mattered. In a flash, Lindsay was ten years old—deserted, abandoned, forgotten, trapped. She tried as hard as she could, but the sensation shot through her like muscle memory:
It’s happening all over again.

IN THE WEEKS
that followed, Margaret would come by for an hour or two, but not much more. Instead, she went ahead with a trip she’d planned with some friends to Cabo San Lucas in April, and from there headed off to Crested Butte, on vacation with Wylie and her kids.

Lindsay, furious with her sister, found herself fuming about any family member who didn’t come to see Mimi. Mark lived in Denver, for God’s sake—what was keeping him from driving to the Springs for the day? So did Richard, who had always been so attentive to Mimi—where was he now? Even John, whom she adored, had elected not to come back to see Mimi. He said he’d prefer to remember her the way he liked to remember her—that he didn’t want to see her like this.

“They think it’s weird that I’m hands-on,” Lindsay said. “And I think it’s weird you
wouldn’t
be.”

The exception was her brother Michael. In 2003, the hippie alumnus of the Farm married his second wife, Becky, who went on to serve on the City Council in nearby Manitou Springs. Still wearing his hair in a ponytail, Michael assisted Becky with her horticulture business and still played small gigs at local restaurants—a completely healthy, functional life, with no psychotic breaks, no delusions, no schizophrenia. Michael’s take on his sick brothers endeared him to Lindsay. “He thinks that traditional psychiatry has damaged them, which it has. I mean, there’s no question,” she said. Just looking at them—overweight, with tremors, stuck in their habits, unable to think of anyone other than themselves—you could tell they were no closer to cured than they were when they each had their first psychotic breaks.

Then again, Lindsay had tried everything else. “I don’t know what the alternative is,” she said. “I’m like, ‘Well, Mike, if you’re willing to take them into your home, off their medication, by all means, go for it.’ ”

Michael had experience in the hospice field. Over the years, he’d taken care of a man in Boulder, and his father-in-law, and his own father, Don, toward the end. Lindsay asked Michael to come and care for Mimi, sharing the duties with Debbie the housekeeper and a family friend, Jeff Cheney. All three, including Michael, were paid out of Mimi’s account—a mixture of Don’s military pension and some savings that Lindsay controlled.

Michael could use the money. But the chance to care for the woman who had loomed so large in his life made the job irresistible. He soon learned that however frail she might have been, Mimi was still in charge. He would offer her Kentucky Fried Chicken for dinner, knowing how much she loved it, and she would refuse, saying she’d had it the night before. He’d make spaghetti instead, and she’d say there was too much of it.

“It got a little confounding,” Michael said. “I almost dumped it on her head.”

“I have to—very slowly,” Mimi said haltingly, her words slurring but her smile intact. “I’ve had I’ve had a crane—
brain
—problem. So my is very crazy. But you have to speak well and louder.”

Half of the words that came out of Mimi’s mouth were not what she intended them to be. She went back and forth for a full minute just on the word
Austria,
when what she really meant was
India
. “Most words came out as
water,
” Jeff Cheney, the family friend helping out as one of her caregivers, said. But she would not stop trying to explain herself, and was always chuckling a little.

“Margaret’s here. She’s how—
you
know. And my mouth is there—might be having to go, too—we’ll see—but as I’m—you know—my original was eight dollar for being old, for getting too old.”

Mimi tittered softly, exasperated. “Pretty bad. But I can try. Sometimes say
boy, school,
but today,
boy
or
book
!”

She laughed again. “So I’m trying a little. It’s pretty bad. Not very good. And I thought I’d be, by now, I’d be
over
.” She laughed louder, and then out came something perfectly clear. “Well, as Mary said, ‘Mother, you’re just taking longer now!’ ”

The people around her had learned to decode much of what she was trying to say through her aphasia. They’d set up a hospital bed in the basement level of the house, easier for her caregivers to access. Each day brought something new: a bladder infection, an upset stomach, nausea, bouts of pain tempered by morphine. But Mimi could still watch TV—movies, cable news, and her favorite, Rachel Maddow. More helpless than she was accustomed to being, she would be alarmed when she was alone and go on tears about things she felt needed to get done around the house—most of them invented, like an overflowing septic system. For the first time in her life, Mimi had a few delusions of her own.

The longer Lindsay stayed, the more she understood her mother, or thought she did. When she wanted to get a complicated point across to Mimi, she would sometimes write her a note. When Mimi kept on refusing food and ordering something different, Lindsay wrote her, saying she believed these were her mother’s final few attempts to try to control what was going on in her life. Mimi agreed with Lindsay, but she kept on doing it, anyway.

What Mimi could no longer do, thanks to the aphasia, was control the conversation. “This is my son,” Mimi said, introducing Donald. Her oldest son had decided to visit, bringing flowers, which Mimi clearly appreciated. “He doesn’t see me very often,” Mimi said. “But we
kalked
today, and now go to each of them back more often to come each more. One crazy, you know.” She laughed.

In his usual cargo shorts and untucked Oxford, Donald was seated at the foot of his mother’s bed. Mimi’s condition did not seem to be affecting him, at least not noticeably. Donald was so still most of the time now, it often was hard to tell what he was thinking. But Lindsay had noted that since moving to his assisted living facility, he had stepped more lightly, smiled more. “I think the social isolation that he had at my mom’s house was really not good for him,” she said. Debbie, Mimi’s housekeeper, doubled as a part-time companion to Donald, picking him up every few days and driving him on errands, or out for walks in Woodland Park. More than occasionally, the plan would be to visit Mimi, but Donald would ultimately decide not to. “She’s too bossy,” he’d tell Debbie.

Today, though, he was here. And with Mimi unable to interject, Donald took over the conversation, uninhibited. He displayed a comprehensively accurate knowledge of the names of everyone in his family, including their spouses and children and the cities they lived in. It seemed he’d been paying very close attention to everything going on around him over the years. But before long, he diverged into fantasy, almost like swerving off a highway and going off-road.

“I underwrote the Academy falconry system,” he said. “The mascot. I started that. I’m an architect out that way, too. I designed the cadet chapel. Our Lady of the Lords built it, but she did it at my design, to thank me for something I did.”

He said Don and Mimi were not his real parents—that he was actually born five years earlier than it says on his birth certificate, and not in America but in Ireland, to a different family, also named Galvin. “My parents used the name Galvin, but they didn’t come from the Galvins,” he said. When his actual parents died, he said, he came to live in this family.

He referred to Mimi as his wife, and to his late father as “her husband.” Don Galvin, the man who raised him, was “a saint,” he said, “a neurosurgeon” who trained him in the field. But Donald chose a different path.

“I became a biological scientist, and a scientist in all fields of medicine. I have ninety thousand professions I could do, but I’ve done six thousand and six myself.”

His favorite, he said, was “falconry.”

In all of his stories, Donald seemed heavily invested in being the head of the family—the role designed for him before he got sick, and the role he cannot take on now except in his most Freudian daydreams. In these fantasies, Donald isn’t just in charge, he is superhumanly potent. Donald said he sired every single member of his family, except for the ones he doesn’t like: Peter, for instance, was what he calls a “swapped child.” So was Matt. His siblings were his progeny, but not in a sexual way. He inseminated and created—“bred” was the word he used—his children by something he called the “American Wince,” in which he just stared at someone in the right way and his seed would be spread to them.

“The way they do it is they think of their testicles, they lock in the head, and they move their eyes like this.” He squinted sharply, for a split second. “It’s called
wince
. The American Wince. And it gives the Dick Tracy seed—travels through the woman’s eye, and mathematizes, drops down to the womb. You fill the whole body with the seed by math. And it drives in. That’s how children come rightly.”

When asked, Donald talked briefly about the priest he said molested him. “He was dastardly, and he was paid to hurt me,” he said. He said he did not know if the priest abused anyone else, and that it happened to him just once. He seemed pretty sanguine about it now. “I got damaged and scarred and got over it. Nature heals itself.”

He mentioned the medicine he must take, but that discussion spun off, too. “I’m appreciative of that,” he said. “The medicine’s for staph infections, for living in groups. Haldol is for living in the hallway with people. I’m a pharmacist. As an architect, I put nine thousand new pharmacies in America. So that’s why I get to be a pharmacist, taking the pills. The Chinese government has challenged me to take a chance with me on that, so we can have some world conquest and pharmacy for all people. That’s why I like China. I’m a neurophysiology chemist. That’s what I do in my scientific field, as a scientist.”

Donald smiled. So did Mimi, haplessly.

“Yeah,” Donald said. “Life goes on, doesn’t it?”

On July 13, 2017, Lindsay was in Colorado Springs for the day to help Matt. A few weeks earlier, he’d totaled his old truck, and now he needed a ride to his appointments. She took him to get his blood drawn, then to the pharmacist to pick up his clozapine, then to Matt’s clinic for the proper clearance for the prescription, then back to the pharmacy. And then more errands—deliveries to two disabled friends who had relied on him for help, as long as he’d had the truck.

After dropping Matt back at his apartment, Lindsay stopped by Hidden Valley Road to see her mother. Mimi never left her bed now. Today, she was having a horrible headache. Jeff, her caregiver, had tried Tylenol and a sedative called Lorazepam, but it was getting worse.

Lindsay felt it in her stomach. This was exactly how it had started the last time, with a bad headache.

“She’s having a stroke,” she said.

HER MOTHER WOULDN’T
let Lindsay leave her side. Every time she tried to take a break and head upstairs, Mimi would cry out as best she could through her aphasia: “Mary? Where’s Mary?”

Over the phone, the hospice service told Lindsay to give Mimi more morphine than ever: 10 milligrams every hour. It took four or five hours for Mimi’s pain to subside. At about 4 p.m., Mimi had a full-blown seizure. Holding on to Lindsay, shaking and out of control, she managed to say, “I’m going now, I’m going now.” She lost consciousness.

Lindsay, Jeff, and Michael took turns sleeping and sitting with Mimi, administering morphine and Haldol. If they ever backed off the regimen, Mimi became highly agitated and uncomfortable. With it, her breathing was still loud but rhythmic. Through a baby monitor, they could hear Mimi’s breath filling the house like a bellows. Occasionally she would stop breathing for several seconds. Each time they were sure that it was the end. Then she’d start breathing again.

Three days passed. On Sunday, Lindsay drove to Pueblo to get Peter. He brought Mimi a big bouquet of pink roses and said a Rosary for her. She got Donald from Point of the Pines and Matt from his place in Colorado Springs, and they both also had their chance to say goodbye. Mark came, and so did Richard and Renée, who cooked for everyone. John was in Idaho, planning to come out in a week’s time. Margaret, on the phone from Crested Butte, said that she had made her peace with her mother already and would not make the three-hour drive to see her one more time.

IN THE EARLY
hours of Monday, July 17, Lindsay administered a dose of painkillers to Mimi and went back upstairs to go to sleep. At 2 a.m., Michael heard the rhythm of Mimi’s breathing change on the monitor, and he got up to check on her. He stood over his mother, watching as she inhaled and exhaled deeply, about ten times.

Finally, there was silence.

Michael woke Lindsay. Neither of them could go back to sleep. Lindsay cried and they both stayed up for a few hours, lighting candles and incense, sitting on the back deck, listening to the rain. There was something comforting about the sound of weather all around them.

The next day, the rain was still falling. Lindsay opened the front door to the house. The sky was gray, but the sun was there somewhere, giving the rain clouds above a bluish hue. Lindsay walked out into the front yard. She stood out there for a long time, arms stretched out, gazing upward as the rain covered her.

She motioned toward Michael, and he joined her. Together, they got soaked, laughing in the rain. Giddy, she tried to get Michael to dance with her, only to learn that her brother barely knew a box step. “I’m a musician, I’m always
sitting
on the stage!” Michael said.

Lindsay laughed. And when he grabbed his sister’s hand, Michael froze. It looked just like his mother’s hand, the way he remembered it from long ago.