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The Only One They Trust

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:

  • "Your health has to come first," she said. "You must get respite. You have to take care of yourself, because you can't take care of someone else if you're coming to your wit's end. It's so easy to let that happen and not realize when you're reaching burnout." She finished up with the very encouragement she wished she'd had.

 

  • "Join a support group and let others who have been through this journey convince you how vital it is to take care of yourself," she related. "Otherwise, your health may suffer irrevocably."


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!"

 

audiegayle says:

i've been the caregiver to a handicapped/disabled/brain-damaged adult son for 12 years now; if my mother wasn't part of this equation i would have not been able to handle it. we still feel overwhelmed by being trapped in our home with no money for any sort of outside "respite", but we do have each other and that is one of God's true blessings. when we pass, my son will be cared for by his oldest son, who, at 23 years old now, has absolutely no life other than work, school and helping with his father. i pray that he will be able to find and grow in a relationship for his joy and love
Posted: October 28, 2009 1:11PM EDT
whygee says:

Mary suffered from Empty Well Syndrome as well as a poor self-image. The book "It's MY Crisis! And I'll Cry If I Need To: EMPOWER Yourself to Cope with a Medical Challenge" http://www.booklocker.com/books/4244.html offers solutions to Empty Well Syndrome, and to a lot of other medical complications.
Posted: October 27, 2009 9:52AM EDT
tiffling says:

I was caregiver to my husband and best friend in the world. He had lung cancer and from diagnosis to death was under 4 weeks, Hos[ice helped some by comming to the house twice a week or more often if needed but I did everything for him because it was my choice, the most love anyone could show is caring for a loved one when they are dying in my opinion. it has been 18 months since he passed and my health has suffered greatly, I have flashbacks of his last two weeks, I have been diagnosed with type 2 diabetes, I cry a lot and miss him terribly. If I had it to do over would I change anything, no it was my job to do this for him and would gladly do it over as I know he would have done for me...tiff
Posted: August 14, 2009 11:30AM EDT
Dsuzieq says:

I understand the situation to a point..my mother cared for my father until he recently passed away. She refused to put him in a nursing home (and I agree)..he progressively got worse for 5 years after having triple bypass surgery. We had him to 30 different doctors and none of them could find the reason why he was losing weight, his legs couldn't hold him up and he kept falling and he was having seizures. My dad got frustrated because he couldn't do the things that he and my mom normally done (camping, fishing etc). At times he would say things that hurt my moms feelings, but I know that he didn't mean them and she knew that too. It was just his frustrations talking. He was never physically abusive, nor was he ever abusive to me or my brother. I know that he is better off now...no more suffering, but it takes a special person to care for an ailing loved one and I respect every person who has that job to do.
Posted: August 9, 2009 7:58AM EDT
lioness09 says:

Thank-you, I needed this!
Posted: August 8, 2009 7:23PM EDT
ASTRAEA says:

Everything got put in a different perspective, in reading that this woman's husband was a child abuser .. so why were they still married, even before he got sick?!
Posted: August 8, 2009 9:53AM EDT
atljim says:

Wow, this is so true, being a caregiver for a spouse who has a terminal diease is a difficult undertaking. It doesn't make any difference if you spouse has cancer, Alzheimer's or any other terminal disease, the spousal relationship suffers and in many cases just disappears. In the case of Alzheimer's it finally becomes so difficult to care for a person with the disease, the caregiving has to be over to the professionals.

So many people wait too long to place their ailing spouses in hospice or a nursing facility. By the time this is done, the caregiver has already been through the phases of verbal and mental abuse inflicted on them by their ailing love ones. In most cases the caregiver has been accused of having affairs, the efforts to help their loved ones are unappreciated. Placement in a nursing facility sometimes only produces more anger and resentment of the well spouse. This is one of the most difficult situations you will ever encounter in you married life, it will destroy your marriage at a ltime when your loved one is least able to help themselves. All you can do is the best you can for them and move on with your life.

I'm sure some who read this post will think my attitude is harsh or cold, but this is reality.

Be there, still doing that, have a closet full of the tee shirts
Posted: August 7, 2009 10:34AM EDT
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Added: Jul 24, 2009
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