They both put it all in writing long before age and health issues stole their bodies and minds. At least “all” that they could forsee and predict regarding what they thought might happen and what they believed they would want.
Advance directives they are called. End of life instructions that are intended to either keep your greedy spouse or kids from killing you off or shuffling you off into legal obscurity in a crappy rest home. Or more benignly, to remove the guilt of not bankrupting the family with medical bills while making life and death decisions.
They had watched us care for my wife’s father as he slowly died of a Parkinson’s-like disease. They put advance directives in their wills and in their family trust: No heroic efforts, no feeding tubes, no intubation. Comfort meds and a peaceful, painless, quick ending if possible. It all sounded good in the legalese of a Wills and Trust lawyer’s template.
As they aged the Thanksgiving Dinner and Christmas visit conversations became more about the immanent future than reminiscing the past.
“We don’t want to be a burden on you kids. If we get too bad off to live on our own, just put us in a nursing home, but don’t let them put us on life support or feeding tubes. Let us die… we don’t want to be a vegetable, we don’t want to linger on and on…” It all sounded good over the pumpkin pie and Cool-Whip after Thanksgiving dinners.
No one wants to be a burden on other people. Until not being a burden is a burden too heavy to bear alone…
The thing that is hard to face is that the hypotheticals of the advance directives might actually become reality. Mom got breast cancer in her early 80’s.
She opted for a radical mastectomy. “Hell, I’m not using them anymore…and neither is he”, she said pointing at Dad.
She did a couple rounds of chemo. They were brutal. She was incapacitated. A burden.
“What’ll they get me?” she asked her oncologist. “Maybe a couple more years, but you could be fine, we don’t know, it’s more of an insurance policy,” he said.
“At my age, what the hell is a couple more years? What will be, will be”, she said, and quit. She had more of a desire for a full life than a long one. Certainly not one prolonged by misery.
“What will be” became the burden that neither of them ever imagined it would be. Their directives were medically black and white. The decisions to follow their own directives were not so black and white emotionally.
“When I can’t dance, let me die,” she would say in her younger years. She hadn’t danced in almost 30 years. She couldn’t even walk any longer.
She danced with death twice, hospitalized with pneumonia two Christmases in a row. Dad violated their directives, he could not let her die.
I sat by her bedside for five days. They had inserted an IV in the crook of her elbow in the ER. Mom would bend her arm, kinking the IV and set off the alarms. The nurse would say, “Nell, keep your arm straight…” But she couldn’t remember that for more than five seconds.
One of the nurses, in exasperation, showed me how to shut off the alarm. I spent five days straightening her arm and turning off the “occlusion beeper” on the IV machine and holding her hands to keep her from pulling her tubes out of her arms and face. Eventually the nurses put “boxing gloves” on her hands so she couldn’t grab things.
She never rebounded from the hospital stays. She was cured of pneumonia, but the toll on her body and mind were significant. We believe she suffered another stroke. She lost more physical capacities. I had to feed her in the hospital. She never fed herself again. A spoon became her “feeding tube” for the rest of her life. Without it she would die. Her lungs were damaged and she needed an oxygen machine to breath.
She lived, but not by her own choice, the choice she made long before she lost her mind but not her husband.
She would lie in bed and stare at the ceiling at night. We always wondered what she was seeing. “Where am I,” she would ask.
“In your own home, in your own bed, you live with us now, you’re safe,” we would say. Sometimes she would grimace. “Where do you want to be?”
She would raise her quivering arm and point to the ceiling with her crooked fingers.
Perhaps her dementia was a blessing because she could not remember being in the hospital and nearly dying. She couldn’t remember that she was crippled. She couldn’t remember that she was essentially a helpless infant.
She couldn’t remember that she had become a burden.
But then, perhaps she did. Whenever she saw my Dad come down the hall she would flip him off.
He did not let her dance with the angels.