I was going to write about my love of spreadsheets and my new budget. Hell, I started the post, but then things went sideways. Sometimes life is like that, I guess.
Each morning is different. And being self-employed is an absolute blessing in this department. I wake up and I ask myself what I want to do for the day. This morning was no different. The water was boiling for coffee, and my pups were at my heels, waiting for the morning meal when my phone rang.
Getting a call from the nursing home is usually not good news. They call whenever my dad is ill, or has slipped and fallen. Usually it is that he's slipped while navigating between his wheelchair and the bed.
"Mrs. Shuck? I'm [name I can't remember] from Rosewood. Is now a good time to talk?"
I told her it was and she explained that my dad had been losing weight steadily, that he was often refusing to eat, and had fallen to 119 pounds total weight. "We would like to bring hospice and palliative care in to better serve him."
Hospice.
In late 2016, on the 19th of December to be precise, I had received a call informing me that my dad was very ill and could no longer live on his own. He had been living for 15 years in Panama as an ex-pat, and two days later I arrived in the country and was able to fly him home 12 days later.
Dementia, brought on by uncontrolled diabetes and multiple TIAs (transischemic attacks, or mini-strokes), had left him in a particular frustrating state. No longer able to care for himself, but also not capable of understanding that little fact. It made things hard, very hard, as I navigated a new, alien landscape of Medicaid, became his durable power of attorney for health and medical, and our family struggled to adjust to him living in our house with us.
It lasted for just over two years. Until he fell and fractured his humerus (and no, it wasn't very humorous) in three places. I had managed to bulk him up some 30 odd pounds, and I was now no longer able to lift him up off of the floor when he fell out of bed, or needed help navigating the bathtub. And I made the hard choice to put him in a nursing home.
Relationships are complicated. I remember thinking that, despite our differences, our hurts or disagreements, that somehow, we would find a way to make peace in those two years that he lived with us. Reality was very different, however.
Nursing homes are pretty much awful. Unless you have piles of money available, or an amazing long-term care insurance plan (neither of which Dad had), you will find yourself in an institutional setting. In my dad's case, it was the best that Medicaid could buy.
The phone call was not done. "Also, I would like to discuss with you any additional requests or instructions you might have in the event that his body fails. Currently, you dad is a full code, where they perform CPR no matter what."
I thought of him lying in the bed there in the nursing home. The last time I visited, they brought his meal to his room. "He doesn't really like to go to the dining room much these days."
Dad has gone through four different roommates in less than five years. Cantankerous creature that he is, when I would visit, he would loudly complain about each of them. Twice he was moved rooms, twice roommates died.
"Dad, why don't you make friends?"
"They're all... OLD."
No friends. Body failing. Stays in bed all day. He even hates the food.
I offered to bring a book and read to him. "No thanks."
Clutching the phone to my ear I said the words I had thought a thousand times. "This life that he has now, it isn't something he wants. I think it is time to change it from full code to DNR."
It didn't feel like betrayal, or abandonment, or callousness. It felt real and honest, and... empathetic.
We each make our decisions. How we want to live, and how we don't. It feels like he is making that decision by not getting out of bed, by not socializing, and by not eating. And no matter what my feelings are, or how I wish he would choose differently, I feel it is the right decision to ask for the DNR.
We got off the phone and I just sat and spun in my own head for an hour. Journaled. Cried.
My brain keeps generating this childhood memory of a very little me on his shoulders as he would pretend to stumble, nearly fall, then catch himself. I loved it. The terror and the thrill. "Do it again, Daddy, do it again!"
I meet with the hospice folks today, at the nursing home. I think I will go see him after that, and bring our favorite book, Horton Hatches the Egg. And if he doesn't mind, maybe I'll be the one to read it this time.
I realize, in this moment, that there won't be any momentous professions of forgiveness or love, apologies or guilt. The time for that, if it ever existed, has long passed. All the hurts, the frustration, the misunderstanding - they fall away in the face of what is to come.
The end is approaching. It might be a week, a month, or longer. Hell, he could last another year for all I know, but the end is coming. All that remains is to hold his hand and tell him he is loved.
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