Sunday, April 24, 2011

Tough At the End

Jim's path had been leading downhill for years, but Jill stuck with him. The drinking had been so much fun and part of their life beginning as sweethearts in college. Jim was a pretty good athlete, in fact the pro baseball scouts were looking at him. Jill was a cheerleader and they were both part of the party scene on campus where weekend blowouts at the frat house were common.

At the start of his senior year Jim was covering second base when a high throw and a low slide combined to give him a hard collision with the runner stealing second. His knee gave way with a crunch effectively ending his baseball career with torn ligaments and cartilage. It was a severe emotional setback for Jim and Jill. They had pictured a life in the major leagues.

After graduation, they married and Jill settled into an art career, but Jim floundered. He started to drink more and more. Despite this, he functioned well in the business arena and progressed into sales management in a fortune 500 company. The drinking though was becoming problematic and Jill was concerned. Their doctor recommended a combined detox and rehab program but Jim resisted. Jill loved him and supported his decision, but couldn't (or wouldn't) keep alcohol out of the house. Finally Jim's boss contacted Jill and said something had to be done, and Jill agreed.

On a Thursday evening after work at his office, Jim was confronted by his boss, Jill, their children, their pastor and Jim's best friend. A suitcase was packed. Jim was initially confused and a bit angry but could see that he was outgunned. He went into a top rehab center with some initial success.

But the patten repeated many times over the years but somehow Jim was able to continue successfully in sales, being hard driving, personable and skilled. Jill cried, nagged, and tried various programs but Jim always relapsed into heaving drinking. The kids pulled away and had problems of their own. They advised Jill to leave their dad but she wouldn't.

Jim's health began to deteriorate as cirrhosis of the liver developed. His muscles began to lose tone, the belly to swell with fluid and the skin to turn a pasty yellow. The first medical crisis occurred when Jim began to have intestinal bleeding. The liver had become so scarred that blood was diverted to engorged veins around the esophagus. These veins ulcerated and broke loose bleeding which was hard to stop, but with transfusions, medications, and vitamins he finally left the hospital after 10 days of treatment.

Jim and Jill tried AA but Jim still relapsed. Jill knew that she was an enabler but still loved and supported him. As Jim's health declined they had a "heart to heart" about life support and living on machines. Jim was also a smoker and knew emphysema was part of his progressive breathing problems. He was clear that he would accept a breathing machine for a short period but did not want to be kept alive indefinitely on a ventilator. He signed a Living Will and Jill had the Power of Attorney for Health Care.

After several more years of worsening health, weight loss, financial strain, and job loss Jim developed a severe pneumonia which required admission to the Intensive Care Unit and life support of a ventilator. After three weeks on the ventilator, tube feeding, antibiotics and careful medical and nursing care, he was finally well enough to be taken off the ventilator. But over the last year his liver had been worsening and he had lost 40 pounds. His strength was poor and breathing very marginal.

Still in the hospital, he was again having increasing breathing problems and the family was called into conference with the doctors. The doctors said that they could put him back of life support, but that he might never get off. He would be moved on a ventilator to a chronic intensive care unit in another facility where they handled long term patients who might (or might not) eventually get off the ventilator.

With the children and Jill there Don made it clear that he did not want to go back on a ventilator and be kept alive on machines. After the children left though and Jill was alone with him Jim whispered, "Honey have I made the right decision? What do you think? Should I go back on the ventilator?"

Jill replied, "Jim, we've talked about this at length in the past. I think you've made the right decision. Your body is so worn out. I would love to keep you here with me, but it would be so painful to watch them keep you alive on machines where you couldn't talk or communicate. It's a pretty horrible existence. So I support your decision.

So Jill had to find strength to find clarity. Even more challenging was dealing with the doubts of the children. "Mom shouldn't we move him to a different hospital? I'm not sure the doctors have done everything."

Jill, with the support of the Hospital Chaplain was able to reassure the children that everything was being done that was humanly possible, "Dad is dying, he wants to be at peace. He's made his decision and let's support it. It's hard and I'm so sad. Please, let's just go sit with your dad."

Comment: The caregivers of very ill patients get so little attention, but they sacrifice so much and are in such a difficult spot. With addiction, the spouse is caught in a vortex of love, being tough, anxiety, loss, and a whole range of conflicting emotions which affect the whole family unit. In the story above Jill might be criticized for not being tough enough while Jim was heavily drinking and destroying himself, but it's unclear whether leaving him would have changed things. Certainly at the end of Jim's life, Jill's love and respect for him helped prevent a nightmarish outcome of long term ventilator support and health crisis - with the final outcome being still being death. I think we all have a fairly healthy tendency to deny death even though it will happen to all of us. William Saroyen said, "Everybody has got to die but I have always believed an exception would be made in my case."

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