Cheryl loved to dance. There wasn't a time in our house when the the kids weren't jumping up and down on the furniture, the radio blasting, and her body swaying in rhythm. Ironically, we were dancing when it happened. It was her fortieth birthday. The kids laughed and clapped as I dipped her dramatically and she sprung back into my arms. And then she crumpled. Tony, my youngest, giggled hysterically thinking it was a ruse. I clutched at her lifeless body, all muscle tone was lost.
It was the emergency room physician who first used the word "stroke". But what does a plumber know of such things? In my experience you could always replace the damaged or diseased part. I clung to this naive worldview as Cheryl was transferred to the ICU. Tony and Lisa alternated between collaborating and arguing as I held vigil at her bedside. And we waited.
Everyday the neurosurgeon came in with worse news. First there was bleeding. Then an increase in brain pressure. The nurses whispered about hospice, but no one had the fortitude to talk of such things openly. I wouldn't have listened anyway. How does one give up on their lover, partner, friend? If there is one chance in a million, wouldn't you take it?
The conference room was full of doctors and social workers. Tony and Lisa stayed outside in the waiting area and played with legos. The neurosurgeon was severe and agile, a man of action. He described the procedure to remove part of the skull to relieve the pressure. The Internist was mousy and meek. He used numbers and percentages. He assured that it would be OK to do nothing, to let nature takes it's course. I visualized Cheryl's brain like a drain clogged and stuffed to the point of bursting. I imagined reaching with my tools and clearing the debris. I decided to let the neurosurgeon have at it.
The years that followed were difficult. Cheryl didn't die, but she never recovered either. And each fork in the road was met with another gut wrenching decision. Tracheostomy, feeding tube, nursing home. Her brain severely damaged by swelling and blood, her recovery was tortuous and incomplete.
She did improve. The tracheostomy tube was removed. She is able to move her eyes and verbalize some. The most coherent thing she does is cry. Everyday, in the nursing home, by herself, she cries. She is unable to lift her hands to wipe away the tears nor does she have the brain power to negotiate the psychological torture of her daily existence. She just knows that something is wrong. And it cannot be fixed.
Lisa and Tony are teenagers now. They try to visit from time to time but they are in the process of building their own lives. They are stuck in the chasm between childhood and adult. Their invalid mother is a constant reminder that life can be horrifying.
And I wonder if I made the right decision that day in the conference room. Maybe we would have been better off if Cheryl died quietly in that ICU. Maybe she would have suffered less. But I try not to think about such things too often.
Because Cheryl, Tony, Lisa and I, we're just ordinary people.
We don't always know which way to go.
6 comments:
Tough, tough decisions ... with no crystal ball to help. Most importantly, there are no right or wrong decisions at times like these. Just honest, caring people doing the best they can under horrible circumstances, especially when a stroke strikes someone so young, still in the prime of her life.
Thank you for writing this. Ordinary people facing extra-ordinary things, neither simple nor easy. Hope writing this was as much of a gift as reading it.
Dear Mr Grumet, thank you very much for sharing this story. I have often advised "ordinary" and healthcare people struggling with such questions to read the small book written by Jean-Dominique Bauby. Although I doubt if Cheryl can still follow words, she obviously "communicate" with emotions. It may be exhausting to do that every day, but mothers have such a "language" with their very young babies, everywhere. May God bless your family abundantly through this!
This, in some ways, reminds me of what we went through with my dear dying mother, except this poor mother at least had one person on the team willing to try to save her life. We decided to keep her alive, and had it not been for a subsequent stroke, caused by the doctors themselves, who viewed my mother as a contemptible waste of life, she would have thrived. So, it was the withholding of her meds and food that caused her untimely death. Yet, the only thing the calloused pulmonologist, who bullied his way into the position of team leader, could say, when I implored them to place a NG tube, to deliver meds and nourishment, was no; and with his legs crossed and his face wearing a smirk of power, he cited Occam's razor. She died of starvation, lingering in a hospital room for 2 weeks after I took her home and could not feed her. This time the doctors had a secret meeting, and decided to stop coming into the room, and the nurses did too, yet they did not tell us, and yet Medicare was charged, but uninterested. It was awful to watch her BUN/Cr go to 120/3, and her body blow up with over 100 lbs. of fluid, like a balloon stretched beyond its capacity. We cannot get over the horror of the health care system, the lack of souls in those called doctors and nurses, and the Medicare system that condones such evil in a system of controlled cost, except when considering CEO salaries. Everyone should read “could it be B12,” and, even though this woman is in dire straits, she should be supplemented with high doses of sublingual methyl B12 and if any way possible, magnesium and vitamin D3. God bless her and the family.
Adding you to my personal prayer list.
Thank you so much for sharing these very personal and no doubt painful reflections with us. I have worked with people with severe brain injuries who are 'minimally responsive' so I have had a glimpse of the devastating effect it can have on families. Having followed your blog for some time I can say that your thoughtful reflections have taught me a great deal about the depths of empathy possible in medical practice. I can only echo earlier comments 'God bless you, Cheryl and your family'. People with these terrible brain injuries often seem to know who cares about them and that strong emotional connection seems to bring out a smile when nothing else can.
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