Go fast, no wait don’t go.
For three weeks I have been away from my everyday life — as a single person, I have had the freedom to move to California without thinking of another person, go on a hike when I want to, make coffee or go out for it, cook dinner or order in, drive to the coast, buy a ticket to Colorado, go on a walk…you get the idea.
I have had the freedom to do just what I wanted to do and when I wanted to do it.
And then I bought a one way ticket to Texas at the beginning of May, the day my dad decided not to do a feeding tube, a week after his swallowing quit working, he wants to die a natural death. “Don’t let me linger” he once said to me.
So we are all here, waiting for him to die from malnutrition. And if you want to send me a text and ask “How are you?”
I’ll tell you i’m awful.
I’m not afraid of feeling terrible, I have had a numb lump in my heart for three weeks. My dad’s routine consists of ice chips twelve times a day, we blend cubes into snow and feed them to him slowly. I am sure my mom will have to retire her fancy blender for awhile after this, not because it will be ruined with ice, but the sound will be a painful reminder of my dad’s last days.
He also cannot move a muscle without help, so every hour or so we readjust him; on his right side, left side, sit up, cough, get the phlegm out, move his hips, hold his neck, watch his knees, set the pillows, wipe his eyes, wash his hands, brush his teeth, kiss his forehead to remind myself he is precious and not annoying.
I have made the choice for his dignity (and mine) not to help with bathroom duties. Which is why every night my mom and I both sleep in her bed together, my responsibility is to get out of bed when my mom taps my shoulder and help my dad turn over and adjust all the above mentioned body parts. And my mom’s job it bathroom duty, but she usually ends up doing it all, because I am an asshole and cannot wake up four times a night without being told. She just does it.
During the day, my mom and I fight about God and fried eggs vs. poached eggs, but at night when she crawls into bed I cling to her like I am seven. What’s funny is she never let me do that when I was little, my parents wanted me to sleep in my own bed, to be independent and strong.
But now, at twenty-eight I will curl against her for as long as she will let me, just to feel comfort in the grief of both of us. Mostly it is me who needs comforting, but occasionally she will cry and I will hold her and tell her how brave she is — all the while my dad will be ten feet away listening quietly to our struggle, wishing to be comfortable, but also to comfort.
I want to speed up my dad’s dying for him, but also for me. It’s cruel to watch someone who once weighed eighty pounds now weigh even less, shedding life but still surviving because despite his muscle deteriorating disease he is pretty healthy. His heart is beating and his mind is sharp.
Which makes us wonder, as we sit together as a family, are we assisting suicide? This decision not to have a feeding tube is killing him, but are we accomplices in a stubborn mans choice not to try?
What’s the difference between death by choice and by natural cause when you cannot swallow but there is medicine to keep you alive?
My family pondered this last night as we sipped decaf coffee and tried to calculate how much longer my dad could live on ice chips. And how much longer could we go without much sleep and on the emotional roller coaster of a lifetime.
“Families and health care providers may be uncomfortable when someone refuses artificial food and fluids, as this seems like basic nurturing. Yet, legally and ethically artificial nutrition and hydration is considered health care treatment, just like surgery, dialysis or other medical interventions. People have the right to decline medical treatments, and others must respect this decision.” — Canada Virtual Hospice
I read this article to my family, and for once the internet didn’t leave us more worried about a medical condition. It gave us peace.
My dad has the right to make the decision to die, just as I had to make the decision to stay and watch him. I could have left, no one would have faulted me for wanting to go back to a new job, to start my life in California. Like I said, I am used to walking away when I want to.
For once, I am not doing what I want to do, but what I need to do. My family would survive without me here, my dad would die without me here. But I need to hold my mom at night and I need her to hold me.
I need to practice telling my twenty-five year old sister how special she is and convince my twenty year old sister to go to the beach with her friends. I need to see how sacrificial my sister-in-law is and how much she loves my brother. I need to see my brother love his boys.
“There is no way to predict when someone’s condition may change suddenly. Therefore, it’s important to address any issues that need attention before the patient becomes too weak to do so. Things that need to be done or said should happen sooner rather than later.”
I wish I was better at saying every important thing to my dad each time I adjust his bed or feed him ice, but I cannot think of what to say, so I say almost nothing but “I love you.”
He tells me, in the labored way of someone who cannot swallow that our time is precious to him.
We do not know the day he will leave us, so I cannot plan much ahead of the present. My dad has always been slow and calculated. My mom and I keep laughing about how he will die at the same pace he does everything else. (We laugh because laughter is another form of grief, in case you are worried). We cannot speed his death up, and I know at the core of it I don’t want too. Even if we only sleep for two hours at a time, are drinking twenty cups of coffee a day and crying is my only workout in three weeks.
I love my dad, and I can wait.