Saturday, June 09, 2018

First You Make Lists

I wanted to start this essay using the second person, because that gave me space to detach.  I only realized this afterward, as the words were turning through my brain and my fitful nights. It's easier to use "you" instead of "I", like "when something like this happens you feel a certain way, but the  experience of a parent dying is singular. So I begin this piece again, and most likely will again before I actually post it.

I'm sitting in the M Mountain Cafe in Socorro, New Mexico after finally having the courage to leave the house where my mother, Sally, is in hospice. The "M" in "M Mountain" probably stands for the the huge white capital "M on the top of a smallish mountain that overlooks this half-ghost town.

My intention was to write every few days to remember what my feelings were, what we were doing, and by we, I mean my sister and brothers, but I kept making excuses to hover. I am afraid to leave my mother's bedside. Afraid that people will overtire her, that she'll be in pain, that she may need something or that she isn't eating enough or that her lips will chap in this hot, dry desert climate. And with this this hovering, my brain goes numb. It is not that I can't keep a thought in my head, it is that I don't even have any thoughts. I just am. Uber present.

I know I am not in control of my mother's health, yet I can't help but want to be. I'm not ready to have memories after she's gone. I am not ready to erase her number from my cell or the speed dial on my home phone or her address from my contacts. I am not ready to throw out the red toothbrush I brought from her little casita, named "Casa Serenidad" to her friend's house where we have transported her for hospice.  The guest house is much more open for hospital beds, nurses, visitors and has beds for the four of us to sleep.  Before we left the hospital in Albuquerque, when my mother was still mostly cognitive, she agreed to staying at her friend Marcia's, and she knew that she probably wouldn't be going home again. I made sure to ask her if she knew where we were going several times before we were discharged so she wouldn't be surprised when we arrived in Socorro, the next own over from her own.

My mother's health has been rapidly failing since March. Three weeks ago, I flew to Albuquerque to the same hospital my mother had been admitted to in early April, on the same floor I had sat by her bed. I am my mother's POA, and the doctor had called with some urgency. This wasn't the first time I had spoken to doctors regarding my mother, but it was the first time one of them had phoned me. I realized the significance of this as I was boarding the flight. My mother was no longer able to make medical decisions for herself.  A woman with the title "Palliative Care Coordinator" had called me to tell me that if we wanted to move my mother to the assisted living home in Massachusetts, we would have to medivac her out with a nurse and doctor to accompany her. I had to look up "palliative" because attaching that to "care coordinator" seemed like something I did not want to deal with.  Incidentally, "palliative" can be used as either a noun or adjective and is defined as "relieving a problem without dealing with the cause,  alleviating pain". I like the Medieval Latin origin "palliare" which means "to cloak". She met in the family room and me, shook my hand and exclaimed "I love my job - I get paid to be kind to people". The was doctor no nonsense. Previous to meeting with them, my mother told me that she wanted to go to Massachusetts but she didn't think she would make it. With the Palliative Care Coordinator, a concerned smile on her face, and the doctor for that day* looking at the floor in front of him, I was told that my mother had 10 days to live, maybe two weeks and the flight would probably kill her. She would most likely not walk again.

On the phone, conferencing in my brothers and sister, a practice we've adopted since January, in the hospital's "Serenity Garden",  a hot, shadeless area between Tower 1 and Tower 2, we absorb this new diagnosis. The benches being metal, I stood close to the building cursing the heat and the unforgiving sun.  Over the past two months, we had been preparing for this, from my mother's move to an assisted living facility to finding her the right mix of expensive antibiotics that would combat her disease, telling ourselves first that she had 1 - 2 years based on her first Mayo Clinic visit and then accepting that she had less than 6 months after the latest during the first week of May. 10 - 14 days was quite a shock. I'm lucky and grateful that my brothers and my sister all get along and we have been in this together since the beginning. That we love and can provide comfort to each other is a testament to my parents.

First, (switching to second person) you make lists. Who is traveling when. What do we need to bring to Marcia's. What friends to call. What family to notify. Where the important papers are. Who has the passwords. What are the prescriptions. When does she get them. Where is the emergency call list. What we will give to her friends, and what we will keep for ourselves, what we give away. We all live so far away from New Mexico, it feels important to have a game plan because we don't know how long we have. We don't know when we will be back. And in grief, do we really want to return? Then, after day three, when we've met with the hospice worker, all of that goes out the window. That is when my brain began to haze over and I started making notes in my all purpose college ruled journal. Little things mom has asked or said, like "you all need to be spanked" and when I ask her why she replies "everyone needs a little spanking now and then". The fact that even in her semi-comatose state, she is unfailingly polite,  using please and thank you and heartbreakingly "I'm sorry".

There is no way to end this essay in a clean, summing up final paragraph, but to thank you for reading. Putting these words to the keys has given a brief respite and a reminder on how important this is. This observance of a life lived and the surrounding of love and memories.


*The Presbyterian hospital network revolves their doctors every day, a company strategy they explain to me will help patients and their families get more than one opinion. I can't say I agree with with this strategy or that it is very helpful or useful. Instead, I found myself consulting more than one doctor and calling the Mayo Clinic doctor who had last seen my mother in early May numerous times. It was frustrating but I think more so because I wanted a different answer. More or less, it was the same. It also made me realize how much I value and love Dr. Mitch, who has been my GP since 1997.

Shameless Crushes...

find life experiences and swallow them whole.
travel.
meet many people.
go down some dead ends and explore dark alleys.
try everything.
exhaust yourself in the glorious pursuit of life.
-lawrence k. fish

Yoga For Peace

read much and often

Cleopatra: A Life
Travels with Charley: In Search of America
Never Let Me Go
The Angel's game
The Lion, the Witch and the Wardrobe
Bel-Ami
Dreaming in French: A Novel
The Post-Birthday World
A Passage to India
The Time Traveler's wife
To Kill a Mockingbird
The Catcher in the Rye
One Hundred Years of Solitude
The Kite Runner
Eat, Pray, Love
Slaughterhouse-Five
Les Misérables
The Lovely Bones
1984
Memoirs of a Geisha


read much and often»