Negotiating Life's End

(left: Dad, middle, after the dust bowl in Julian, California)
I am told that my father is dying. This is not news. Dad has a progressive disease that ordinarily results in death only after years of suffering.
I'm telling you this story (which will be the subject of several posts) because it's been suggested to me that I lodge a complaint with the local community hospital dad was checked into last week. Or that I sue the doctor who will play a large role in this story. I'm thus reminded of the type of conflict that causes people to go to the considerable trouble of finding and hiring legal counsel. The experience I am about to relate considerably deepens my empathy for those people.
Before I tell this story, I caution my readers not to take the easy way out. These feelings accompany every kind of conflict -- personal and commercial.
Essential Familial Tremor
Most of us on Dad's side of the family have something called Essential Familial Tremor. That means our hands shake for reasons the medical community doesn't understand.
Because denial was and remains my family's primary response to ill health , I was not diagnosed with this condition until I graduated from law school even though I began to suffer its effects at age 14. When your primary family dis-ease is denial, it's more than a little painfully ironic to have a shared medical condition that quite visibly signals fear. But we survived the American dust bowl. We do not complain. And we do not seek medical treatment.
EFT and Parkinson's
I digress to EFT and denial because the "benign symptom" of EFT -- shaking -- is the same as one of the early symptoms of the disease Dad is dying from. Parkinson's.
For as long as I can remember, Dad's hands shook though my my step-mother (welcome to the family!) vehemently denied it. "He doesn't shake," she'd snap if we noted dad's inability to get liquid from one container into another without spilling a fair part of it onto the dining table.
So I can't say when Dad began to show the earliest signs of Parkinson's disease. I can, however, say when it became undeniable.
"I Left Your Step-Mother,"
dad is saying into a telephone I've just learned is located on the night-stand next to his bed in a Las Vegas hotel. "She's sleeping with the gardener," he insists without a trace of skepticism at the fantastic idea that his second wife -- a woman ten years his senior -- has fallen into trampy ways with the "help" at 85 years of age. "I think my phone is tapped," he continues without interruption. "I'm going to fly to Sacramento to see my sister Lucille."
This is the point at which my family is generally willing to first seek medical treatment. Unmitigated disaster.
So I sought and was granted (against strenuous opposition, I might somewhat irritably add) a continuance of a trial date that was breathing hot down the back of my neck, boarded a plane for Sacramento and got dad to doctors, psychologists and neurologists.
Parkinson's is treatable and the dementia abated for a sufficient amount of time to allow dad to pretty cogently divorce his second wife of 35 years and marry the woman who served as his court clerk when he'd been on the bench two decades earlier.
You can't make this stuff up.
This is where we're heading. Feeding tube and Reasons patients sue their physicians. /*
| So that it would not happen to anyone else | 91% |
| I wanted an explanation | 91 |
| I wanted the doctors to realize what they’d done | 90 |
| To get an admission of negligence | 87 |
| So that the doctor would know how I felt | 68 |
| My feelings were ignored | 67 |
| I wanted financial compensation | 66 |
| Because I was angry | 65 |
| So that the doctor did not get away with it | 54 |
| So that the doctor would be disciplined | 48 |
| Because it was the only way I could cope with my feelings | 46 |
| Because of the attitude of the staff afterwards | 43 |
| To get back at the doctor involved | 23 |
_______________________
*/ figures represent the percentage of people who agreed with the statement to the left.


Someone once told me that doctors are only practicing; that's why they call it the practice of medicine.
My step-father died six months after being diagnosed with cancer of the liver. The problem was, after his diagnosis, Kaiser Permanente forgot to tell him. Six days after he collapsed and was rushed by ambulance to Kaiser, he was dead. The hospital acknowledged the error, and the chief of staff apologized to my mother (http://en.wikipedia.org/wiki/Eileen_Rose_Busby), but it was too little, too late.
My thoughts are with you and your father.
Vickie, your post brought me to a complete stop this afternoon, thinking about you, your dad, your family. It sounds like whatever's coming with the rest of the story, you've had a rough time of it and my warmest wishes are with you.
This first post in the series also brought my mind to the fabulous books "Better," by Dr. Atul Gawande, and "How We Die," by Sherwin Nuland. Have you read either?
Vickie, I took a break from the digital world over the weekend and returned to it this morning to discover your sad news. My dear friend, my thoughts are with you and your family. I am holding you in my heart right now. Can I help? I'm here for you if there's anything you need. Sending you love, Diane