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The Catastrophic Consequences of Denial

By Mary Ann
Posted on

I wish I had the conversation with my other loved one.

When you marry a man, you marry his family—and if you’re not careful, you inherit its pathologies. A warning tale follows: My husband’s family never talked openly about unpleasant things. Emotional conversations were always steered back to the price of potatoes. When we were dating in the early 1970s it seemed lovely and placid. My lineage was openly argumentative and the waters were always roiling.


Over the years I never doubted that my in-laws, Sam and Lucille, were good, kind individuals. They were, however, overly concerned with what other people might think. When, at age 42, Dennis told his parents that he was an alcoholic and was starting treatment for his disease, their first reaction was “No one has to know.” And it was never mentioned again, but Dad continued to offer Dennis drinks at social occasions, even though the answer was always, “No, thanks.”


At weddings, graduations and anniversary parties, Mom always wanted our family to sit together. It made no sense to me; we saw each other all the time. But I went along. Once when we had a big gathering at our house, I prepared place cards that prevented husbands and wives from sitting at the same table. It didn’t go over well.

It was an insular family dynamic we consciously chose not to emulate, but we never challenged it. It didn’t have anything to do with us, we believed. But my father-in-law’s decline with congestive heart failure and dementia proved us terribly wrong. There were catastrophic consequences.


Dennis’ father, concerned about his growing forgetfulness, started taking large doses of Gingko Balboa. It didn’t help. Then the crazy mood swings started. One day Sam insisted that all three of his children take DNA tests because he was not sure he was their real father. He thought it was possible that they were the children of Uncle Zig—the late husband of his wife’s sister. Never mind that Dennis and his older sister Carol looked like clones of their father.


Instead of regarding this emotionally painful event as big red flag that demanded professional medical and psychological intervention, my mother-in-law engaged in the familiar hush-hush ritual. Despite her husband’s loosening grip on reality, she was simply incapable of taking charge.


When he insisted on making a foolish financial move by co-signing on loan for a notoriously irresponsible granddaughter, she couldn’t bring herself to put her foot down. After more than 50 years of a marriage, it wasn’t in her skill set. My husband, an accomplished attorney who counseled against the transaction, watched helplessly as a great deal of money was flushed down the toilet.

Even though my father-in-law’s mental state was deteriorating, the cardiology department at a major University hospital thought he was a good candidate for an implanted cardio defibrillator. The device extended his life by more than five years—years that were filled with depression, anger, fear, and anxiety.

Things got worse and then, when Dennis’ younger brother died of a heart attack in 2005, the downhill slide accelerated. Dad, always a fastidious gentleman, didn’t want to get dressed, shave, or otherwise groom himself. Incontinence became an issue that was whispered about when he left the room.


On Christmas Day 2009, Sam was in the hospital. Dennis asked the cardiologist about his father’s prognosis. “He won’t get better,” he told us in the hallway. “He’ll die of congestive heart failure. If everything goes his way and he catches every break, he could live, tops, two years, but probably not that long.”


My husband accepted that his father’s journey was coming to an end. It was as inevitable as sunset. In the months that followed Dennis spent as much time with him as he could looking through old family photo albums and slides. They talked about Dad’s boyhood days on the farm, his time in the Air Force, and the annual family camping trips. The old man loved it.


Dennis’ sister Carol and mother couldn’t face the raw emotion of the situation, so they distracted themselves with minutiae that made no difference. They were endlessly concerned about how to reduce the amount of salt in his meals. It was as if they wanted to believe that if only his elevated blood pressure could be brought under control, he might get better.


No one ever asked for my input about Dad’s care. During one of his hospitalizations for injuries from a fall, I attempted to gently engage my mother-in-law of 33 years in a conversation about hospice. She didn’t want to hear it. “Have you and Dad had any talks about what should happen when his time draws closer?” I asked. She pursed her lips and held up her hand and shook her head “No.” It was clear to me that she didn’t want to have that talk and I took the cue that she didn’t think it my place to bring it up.


So, I tried to be a good helpmate to Dennis. We talked often about how much better things could have been if his parents would have embraced the inclusion of helping professionals in their world. But they didn’t like strangers in their home. A physical therapist who spoke with a heavy Indian accent was a particular source of anxiety.


By August of 2010 Dennis was the only voice of reason in his family. He suggested to his sister that it was time for hospice care, where the emphasis would be on Dad’s comfort and state of mind. She simply ignored it. Should we have forced the issue? Yes, of course. But Dennis’ advice always fell on deaf ears.
The last days of Dad’s life in October were hectic He fell in the bathroom and hit his head, hard and bloody, and was taken to the ER and admitted to the hospital. Finally, after months of evading it, my mother-in-law consented have in-home hospice care for him when he was discharged.


What happened next was something I didn’t know about until more than one year later when my sister-in-law inadvertently let it slip. A ridiculous decision was made and it was kept from me despite the fact it changed my husband’s life and my life forever. While Dennis took a walk with his father in the wheelchair, his mother and sister stayed in the hospital room. A medical technician came in to get permission to deactivate his ICD, a standard procedure when patients are near death.


All it could do now was to deliver painful electric shocks to a dying organ. But my mother-in-law unequivocally refused to sign the paper. My sister-in-law eventually admitted, “I didn’t push her.” Therefore, an excruciatingly frail man at death’s door was being sent home with an active ICD against all better judgment. Dennis wasn’t there when the decision was made, but he alone experienced the consequences.


“I wanted to give Dad a chance at a miracle,” Lucille told me when I eventually questioned her about what she possibly could have been thinking. “If I let them turn it off, there could be no chance for a miracle.” Comingling in my gut was pity for her stupidity and anger for her cowardice. What she really did was give her husband no chance to slip peacefully to the other side.

So, Dad came home. Again, to avoid reality, Dennis’s mother busied herself with useless activity. She wanted a single bed brought into the house that she could use while a hospital bed would be brought in for Sam. Anyone could see that his days, if not hours, were numbered, but Dennis moved furniture and ran errands that could have easily waited. He drove his mother back and forth across town to the funeral home visitation of a cousin. Everyone would have understood why she missed the rosary to stay with her husband, but that would be an acknowledgment that his end was indeed near.


Dennis was not yell fully recovered from running a recent marathon. I told him he needed to rest, but I stopped short of full-blown nagging. Maybe that was a mistake too. But putting my foot down certainly wouldn’t have stopped my kind and caring Dennis from doing whatever he could to help make things better. I kept thinking that it would be over soon enough. Maybe Dennis and I could get away for a while after his father was laid to rest.


Dennis stayed at his parents’ condo on the last night. He called me the following morning and told me he couldn’t sleep at all, not a wink. His father had been restless and groaning. “Dad wants to be moved,” he said, “from the bed to the wheelchair to the kitchen table and a few minutes later he wants to go back to the bed again.” Now I heard the weariness in my husband’s voice. “God, “ he sighed, “the guy is dead weight.”


“You really shouldn’t be moving him, Dennis, ” I said, again trying not to nag. “That’s a job for people who know what they’re doing.”


“Don’t worry,” he yawned. “I’ll call you later and keep you posted.”


When I got home from work that Friday around 3:00 p.m. there was a message from Dennis on the answering machine. “It’s a little after one o’clock. Call me at my folks’ house when you get this.”
Dennis’ sister answered. “Dad died about noon,” she told me. After asking how Mom was holding up, I asked her to put Dennis on the phone. He sounded sleepy and dazed. He told me he was alone with his father in the bedroom when he died. “Was it s peaceful passing?” I asked. “No. It was pretty damn awful,” he said, “I’ll tell you about it when I get home.” He wasn’t able to tell me about it until almost two years later—after he came out of his coma, relearned how to swallow and tie his shoes, completed eighteen months of grueling rehab, and realized that his life was forever changed by an anoxic brain injury.


While Lucille was sleeping on the couch in the living room, Dennis was at his father’s bedside when the ICD began discharging shocks. Sam convulsed in grotesque, agonizing pain. The son watched as his father’s body rose and fell while his face contorted as if he was experiencing the tortures of the damned. It looked as if he was trying to leap off the bed. When it seemed to be over, it would start again. And then again and again. It was an unbearable trauma for a loved one to witness.


Dennis had not had a drink in more than twelve years. In that horrific moment, though, he relapsed. Not with Vodka, but with what was on the nearby bathroom counter—Oxycontin and morphine meant for his father. Dennis never used drugs, but I learned in subsequent therapy sessions that he was desperate to escape his nightmare.


Five years later our life is not joyless, but it is complicated. Sometimes, when Dennis can’t remember how to use the coffee pot or figure out how to take the wrapper off of a piece of cheese, I’m overwhelmed with sadness by the magnitude of this tragedy. I’ll always be haunted by how avoidable it was.


Had my in-laws thoughtfully planned in advance for what would be best for the whole family when death was near—and engaged their children in the conversation—I believe none of this would have happened. If my mother-in-law had faced the fact that Dad was a terminal patient and kept an open mind about the benefits of hospice, it’s unlikely her son would have reached his physical and emotional nadir.


If the hospital had a policy not to discharge patients to hospice with an active ICD, despite the ill-advised wishes of the next of kin, Dennis would still be able to practice law and drive and cook and go to the grocery store alone. If the hospice had a policy to not accept patients with active ICDs, Dennis would still be planning his next big home improvement project. If the hospice nurse had kept track of the meds, counted the pills and measured the morphine, instead of letting grief-stricken family member dispose of them, Dennis would still be working on script ideas for a legal thriller.


Maybe if the family doctor, or the surgeon who inserted the ICD, had warned Sam and Lucille that the device had be turned off when life was no longer sustainable, a foolish decision would not have been made and Dennis would still be involved in charitable causes and would still be planning a trip the trip to Paris we always wanted to take.


I know my mother-in-law didn’t want her husband to suffer the way he did and she certainly didn’t want to inflict such horror on her son. Yet both men were victims not only of her weakness and ignorance, but also of a medical system that allowed her to make that decision.


We all admire those who fight tenaciously to preserve life when a slender thread of hope exists, but to truly cherish life is to be willing to end it gracefully when the point of no return has arrived. Transitioning gently to the sweet bye and bye is a gift that should never be denied.


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