A dark place

Today, I was intending to visit my mom and drop off some chocolates and a plant. The plan was for J.P. and I to grab a milkshake and head over after the gym. Things happened and we were delayed. I realized that I would now be arriving around lunch time rather than my calculated mid-morning between breakfast and lunch when she was still in a decent mood morning timeframe.

I began to shake. My breathing grew shallow. I wanted to jump out of my skin. I tried to focus and assess where all of this was coming from. I envisioned the painful process of feeding my mom. Of attempting to maintain a neutral expression. Of trying to maintain my composure. Of trying not to watch each and every movement and feel pain and sorrow well up inside me. Of trying to maintain the facade of one who desires to be a nurturing Florence Nightingale for the person who carried her, fed her, grew her.  Of trying to fight back tears, avert my gaze, fake normal conversation, search my head for moments to share of funny or sweet. Of the girls or the critters. Of good memories. Of anything other than what I was seeing feeling experiencing.

It stopped me cold. How can I be so heartless, so unfeeling, so horrified of spending time nourishing my mother. What darkness lurks inside me. What deficiency or morality. How can I possibly not want to visit my mom during a feeding (and yes, I get the zoo analogy).

Because. As I sit and feed her. Watch her eyes stare into nothingness. See her left hand clench in the same manner as her right which now appears locked permanently in an angry fist. Note her modified chewing and difficulty swallowing. Look for anything that remotely resembles my mom. Secretly hope that she will pass peacefully now while I am with her. Fade into darkness. Another bite. Ok. Now. Not now. When. When will the suffering end. When will she be released from this state of being that I once promised her I would be sure to alleviate.

(My father ripped out his tubes. I held his wrists trying to stop him. He stared into my eyes and said: Patti, just take me into the back yard and shoot me. I quickly ushered my mother and grandmother out of the room before they heard anything else. I knew. We all knew that he absolutely unequivocally meant what he said. We had previously talked as a family. Shared that none of us wanted to live in a vegetative state. He had used almost the exact words. Take me out back and shoot me. We lived on 9 acres surrounded by a state park. Hunting was fairly common even though illegal. Who would know. Who would care.

My mother and grandmother cornered me separately in the hallways of the hospital. They demanded to know what he had said to me. I refused to share. No one else needed the burden of that request. I had no chance of doing it. I don’t think I ever could. But I wanted so very much to grant my father this last wish.

The next morning my mom had his stuff packed up and declared that we were taking him home. Not a single doctor had the audacity to refuse her request. She rode in the ambulance with him for the hour ride to our house. She said he smiled as they turned onto our street. He could see the trees. He knew he was home. This was where he wanted to be. I was 17. I am still haunted that I had no way of performing this one final humane act of service for my father. The person I loved most in this world. The person who knew me and loved me and believed in me.)

Years after my father’s death, my mother remarried. My stepfather was not my favorite person but my mom was happy. She at the very least, deserved some happiness. Six years after they married, he died of cancer. He had been waging a battle for over a year. Living in Boston, I had applied to grad schools. When I shared that I had been accepted at JHU, my mother exhaled with relief. I would be coming home. I could help with the care of another cancer patient. I spent too many weekends doing just that. When the battle was coming to an end, he lay in bed at home with a morphine pump. I slept in a room down the hall that week but offered to take a turn with him during the night so my mother could rest. Much to my dismay, she took me up on the offer.

For a week, he moaned and writhed in pain. Daily, we contacted hospice and they walked us through another laborious extended series of codes so that we could increase his dosage. It was excruciating for everyone. I was not close to him. His grown children (much older than me) would come by for brief visits. No one spoke to him of his departure. I finally told my mom that someone had to tell him it was ok to let go. He kept fighting. No release. No relief. And then finally. The minister.

This man arrived and told him to say hi to God. Told him it was ok to leave and that all would be fine. He gave permission to others to say the same. That evening each of his children and my mom spoke to him. His kids told him to say hi to their mom who had passed. My mom told him to say hi to my dad. (And yes, that was weird, but in that context, weird happens.)

The next morning, I was in the room with my mom and his daughter. He began to pass. It was not easy or quick. My mother began to panic and reached for the phone to call 911. His daughter fell back into a corner of the room. I calmly held him and shifted him onto his side attempting to make the process of breathing less painful. I told my mother to put the phone down. He had a DNR and was dying. This was happening now. I had my hands on him as he took his last breath. I felt and heard the death rattle. I had no idea how real that was. And then I felt his chest. Laid my ear against his heart. Racing and then infrequent bursts and then nothing. I waited to be sure that the nothing didn’t change. No more movement or sound. Nothing. No more. I turned to them and quietly said that he was gone.

I don’t remember if it was later that day or the next. But I went running. I ran as fast and as far as I could. When I returned, I knelt by the side of the road and vomited. I had to physically purge the sickness and death. I had to get rid of it. Exorcise it from my being. These toxins that had infested and taken root inside me. They did not belong. I would not hold onto them.

Maybe a few weeks later, maybe more. Time is so different during after a death vigil. And trying to recall events or conversations is a useless act. My mom asked me what I would do if it was her. We both knew she was asking about taking her life, letting her go, ending the suffering. And of course, we both envisioned cancer because that is what we knew.

I told her I had two possible approaches. I had considered both while running. Since no one would question her death, because she would be dying and under hospice care, I could place her ever so gently in the car in the garage. Feed her chocolate ice cream. Perhaps help her sip a margarita. Turn the car on and leave so she could fall asleep. And then carry her back and place her on her bed.

Or seeing that no one really monitored, looked at, measured what amount of morphine was left in the bags in the refrigerator. They just came and took. Disposed of anything everything left. I could use a syringe and remove a large quantity of morphine and inject it into her.

With a large smile, she laughed that either of these options would be suitable and she would be grateful. She may have been surprised that I had a plan. But perhaps not. She did ask. And she had been with me through these deaths from cancer. And she may have seen the look in my eyes. The horror that never leaves. The desire to not witness any more needless suffering.

But neither of us ever considered the slow burn death of dementia. The loss of a person mentally does not always coincide neatly with their physical decline. Both happen. Both exist. But not in conjunction. Never in unison.

(Ok, now…)