Mary Tinker is a poster woman for the caregiver who sets herself up to be used—and even abused—by a loved one who is seriously ill. It is an easy trap to fall into, and it's even harder to see a way out. Why? Because it looks to everyone else like the most noble self-sacrifice. What could be more heroic than doing everything humanly possible to keep your husband alive—solo?
Mary's husband was accustomed to letting her deal with the unpleasant realities of life. He didn't believe in insurance, for instance, so she hung on to her full-time job in a nursing home to provide health insurance for him and their two young sons. He didn't believe in going to doctors, so he brushed off her pleadings that he pay attention to his chronic stomach pains.
It took two years before she was able to drag him to a doctor for a colonoscopy, whereupon he was diagnosed with advanced colon cancer. Mary knew her husband did not have long to live. But how long? Privately, the doctor told her he would live for two years, max. It turned out to be four.
Mary anointed herself as the sole caregiver. She quickly established herself as the only person her husband trusted to provide his constant care, from cleaning his open wounds after surgery to staying in constant touch with his doctors to hearing news he didn't want to know.
I asked her why she wouldn't accept any help. Her answer was, "I have a strong sense of commitment."
When the caregiver comes to believe that she is the only one who can take care of her loved one, it's almost like Playing God. It may feel powerful, especially to a woman who has little self-esteem; but over time, the caregiver begins to lose herself.
I asked Mary if she was aware of the erosion of her own being. "I wasn't aware of my desire to Play God," she admitted. "Yet we so often find ourselves going down that path, wanting to believe, 'I am the one who can do it better. No one else is going to do it the way I do.' It's a trap."
Playing God can take a devastating toll on a mere human. No earthling can control the trajectory of disease or elude the eventuality of death. Taking on that responsibility invites overwhelming stress and is destined to end in failure and a residue of guilt.
Mary had dropped out of high school to marry at 18 and was in her mid-30s when she took on this second full-time job as her husband's caregiver. For four years, she and her children walked on eggshells around an angry and increasingly abusive man. Her older son, age 10 at the time, became the brunt of his father's mental and physical blows.
Mary's husband was jealous that she was the well one. One night, when they were lying in bed talking, he blurted out, "Why me? Why not you?"
Her husband's resentment is typical of many older, sick, or frail people. As they forfeit their independence and lose control over their bodies, they may become desperate to control the person caring for them. It's a consolation, but it can become perverse. Mary's husband also tried to demonstrate his control by spending money recklessly.
She was alone in worrying about their dwindling funds. How would she be able to support herself and the two boys once her husband passed on? His callous response was, "You've got a lifetime to clean up whatever mess I leave behind."
She could barely clean up the mess he was making of their lives in the present. Carrying a full-time job and a full-time caregiving role, while being hyper-vigilant to protect her sons, Mary was constantly fatigued but could rarely sleep—not even on a Sunday, when God takes a rest. "You get to the point where crisis just feels routine," she said. "You're caught up in the day-to-day drudgery of what has to be done and the guilt of not getting it done."
Her blood pressure shot up. Having totally neglected taking care of herself, she wound up in the emergency room with huge welts covering her body from head to toe. The doctor said he'd never seen hives like that before. It was only one of her body's stress reactions. Soon after, she began losing her hair.
"It still hasn't all grown back," she tells me, running her fingers through her sparse salt-and-pepper tufts. –And this is 15 years later.
At the end of her second year of Playing God, she hit the wall. "I felt like 'Why can't we just get this over with?''' Mary began entertaining fantasies of divorce. She wrestled with herself, because—believe it or not—her husband was a minister. As a woman of faith, she felt guilty about exposing a minister as a child abuser.
When her husband caught on that she might be ready to leave, he threatened that if she filed for divorce, he would kill her. "'Because,' he said, 'he had nothing to lose'," reported Mary. The raw truth of that statement paralyzed her with fear. Her husband had guns, and he knew how to use them.
The next time her husband had an emergency admission that kept him in the hospital for several weeks, she worked up the courage to have him served with divorce papers. Finally she had taken an action to save herself. On discharge, her husband had to be taken in by his sister; Mary wouldn't have him back.
The next three months were a revelation to Mary and her boys. Living in a stress-free situation, they were able to revive their enjoyment of simple pleasures. They went hiking together, she took the boys to ball games, they'd curl up at home with popcorn and watch a movie—just the three of them—with no fear of shouting or violence.
This is tantamount to "respite,"a break from long-term caregiving that all support organizations insist is essential to protect the health and mental well-being of the person who takes on this difficult role. For Mary, it was a rehearsal for finding the confidence to take on the role of widow-with-young-children.
She became comfortable in her own "shelter" and began to invest in her own future. She went back to get her high school diploma and applied to colleges. "I felt engaged in life again," she said with pride, in the degrees she later earned. "I had a goal for a career path. I knew this is what would sustain us when he was gone."
Today, in her mid-50s, Mary is a highly credentialed and respected care manager working at the Council on Aging in Silicon Valley. A public-private agency, COA provides care managers to help families keep their loved ones out of the hospital and cared for in the home with community services. Mary counseled caregivers to avoid Playing God:
I asked Mary, "Why do you think women so often allow their loved ones to use them and abuse them when they're sick?" She said, "We tend to think—inside ourselves—that we're a failure if we don't do it all." With the benefit of nearly 20 years of hindsight, Mary fired back at her own ignorance in trying to Play God, saying: "It's a bunch of bunk! We don't have to do it all!"