It was now four days since the death march for my father began. It started on Monday when he could not be awakened; it was now Thursday.
I was going through the motions of eating and sleeping, but I knew I was in that familiar “netherworld” of living through a life crisis. I remember my mother-in-law sharing with me that when Jason was sick; I behaved much as she had during her occasional manic episodes. My mother-in-law had bipolar disorder. She said, “I know what you are feeling; you have endless ideas and thoughts and are in a place of genius that never quits.”
I didn’t know about the genius part, but I understood what she meant. I had cut back on caffeine, but still felt like my mind was functioning at a fast pace. My heart was often racing.
I had stayed late with my father last night. My oldest son was with me; exhausted from his camping trip and the long drive home. He was energized to finally get the chance to speak to his grandpa. I was certain my father was delighted he was there.
As we left, my son promised he’d be back in the morning. I said my goodbye to my father.
Each time I left him, I hoped it would be our final goodbye.
Now it was morning. I entered his room with dread; Miriam, my mother’s companion, came with me and was holding my hand.
Miriam kept wiping away her tears. She told me that she loved “Mr. Lee” (as she called my dad) more than I could imagine.
After sitting next to him for a few minutes, I decided I needed to do something. It made perfect sense. I could get started with the huge task ahead of me by sorting through the mess in his room.
My mother was napping, so Miriam was able to help me. Inside I laughed; I realized that if my father knew what I was doing, he would have a heart attack. Was I passively trying to hasten his death this way?
As I separated out the many items for the trash, I found it unbelievable what he chose to save.
There was a clipping about hiccups from a newspaper in 1950 and my son’s class schedule from years ago. There were many cards and photos. I enjoyed sharing them with Miriam; it sure helped having her there.
I had actually pictured this moment a long time ago.
As I emptied more important papers into bags to take home, I said to Miriam, “Just imagine, these piles that I am cleaning here represent a fraction of what there is for me to clean at my parents’ empty apartment/coop. That place is filled with thousands of areas like this. Growing up, I was used to it. There was little room in my closet for anything. My clothes were relegated to a small corner.
My own home had a closet and whole area in the living room filled with his “stuff.”-
I purposely did not clean that area. When my father went into skilled nursing, I didn’t know what to do with all the items from his cluster home. Every week when he came over, my father was filled with motivation. His eyes would light up and he would say, “Give me a bag or box to sort through! I am really going to help you clean this up.”
He would say that, but in the meantime, the pile never grew any smaller. I didn’t care. I learned, as I had with many things in my life, to simply let go. With my healing over the past two years, I’ve let go of many things because so many of my priorities changed. I let go of entertaining, cutting coupons, television, movies, car washes and anything that took up precious time I preferred to spend on my new passions.
My son took my picture as I rested my head close to my father. My dad always hated being touched. I wondered how he felt having me touch him now.
His forehead felt like sandpaper. His breathing was fast, continuous, and raspy. I was certain he could hear everything going on around him.
I started to snap.
I asked the nursing staff to call the hospice department; I wanted to speak with someone. It bothered me that I could not be certain if my father was in pain or not. I wished I could know for sure. Imagining him being paralyzed in his dying body without even being able to scream in pain was not a helpful thought, however.
The chaplain arrived. We had a long discussion about pain management. I said, “Life can be brutal. For instance, there is natural childbirth. And then there are wonderful drugs that make the whole process bearable and make you want to fall to the ground and kiss the anesthesiologist who delivers that epidural. Modern medicine has wonderful things. But where is it now? Can my father die a peaceful death without suffering? Does he need to be aware of his death as he struggles to breathe?”
I could feel my voice tightening as I said; “The order is PRN – as needed. How do they know it’s needed? He can’t tell you. Why not JUST GIVE IT?”
The chaplain explained that no nurse wants to administer what might be the final dose. She told me that it was the reason for hospice to step in. I wondered where they were; I hadn’t seen anyone except if I asked them to come. She added, “It’s uncomfortable for the nursing home to deal with a situation of having a resident die without hospitalization and intervention.”
She pulled the covers down off my father’s feet. She explained that as death approached the circulation to the extremities slowed and toes would curl and turn blue. My father’s feet were warm and pink.
It was going to be a lot longer than I thought.
The chaplain shared an anecdote as we waited for the hospice nurse to arrive. She said, “There was a 103-year-old woman who was dying. This woman refused any and all medication, and had been that way her entire life. In the throes of dying, she adamantly insisted upon not being given anything. But she was screaming and hallucinating while dying.” The chaplain continued. “Because it was so upsetting for the other residents to hear her, morphine was eventually administered. She died immediately after that. It was as if the drug took the fight out of her and she that’s why she didn’t want it.”
The hospice nurse arrived. I told her exactly what I wanted and then I went home. The warrior in me had erupted. All my father’s orders were rewritten and now he would automatically be given Tylenol ever four hours and Morphine every two.
When I came home, I rested and showered and planned to go back soon. Writing was something that always helped me. Despite the real pressure I felt to write my father’s eulogy, I decided it would be more helpful for me to express my feelings and write for my blog instead.
This was how I was feeling.
I was angry.
If I wanted to, I could write a whole list of the things I was angry about:
I was angry with my father for leaving me with his horrendous amount of things to go through, because of his severe hoarding problem that did not allow him to throw anything away.
I was angry as I wondered why it was taking so long to get test results about my eyesight from almost a week ago.
I was angry that my husband and sons were home, and now I had to take care of their needs. After listening to my father snore to his death for hours, I could not bear to hear my husband snoring, so I napped in my youngest son’s room.
I was angry about conversations I had with friends who cared about me, but said things that brought me down.
I was angry about how my father was dying and I couldn’t be sure whether he was in pain or not. The hospice team I relied on were nowhere to be found and the morphine order was every eight hours or as needed. A nurse confided to me that it could be every four hours, instead. My father was running a high fever of 102 when I arrived and Tylenol was administered after I complained about it.
Despite acknowledging that today I was angry, most of the time I was so grateful for all the wonderful care my dad had received at his nursing home. He was a demanding person, but never hesitated to express his appreciation when treated with dignity. I smiled at the CNA who came in to administer his Tylenol by suppository. This young man always treated him respectfully. He would say, “Yes, sir. What can I do for you, sir?”
Every time I was at my father’s beside, so many staff members came to hug me and pay their respects to my father. They were like one big family. I realized that this was truly now my father’s home and he was in the most comfortable place he could possibly be in. I was wistful because it was understood, that my father would die and then I would probably never have any connection with these people again.
But of course, there was still my mother.
I walked down the nursing room corridor and wondered whether I would look back and miss this place someday.
I doubted I would.
What my father wrote: (He already submitted this)
The basic unit of caregiving is the CNA. I depend on my CNA for almost every phase of my life. My daughter wanted to take me out for lunch once. I was not ready. Susheila made me ready. She emptied my catheter bag, dressed me to keep out the cold weather, quickly took care of life’s necessities, etc.
She is conscientious and caring, exactly what this facility needs.
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