Epistle 3: Bandwidth Alert: Sorrowing Ahead
March 10, 2016
What follows is a rendering of events, my reactions and sorrowing, as I seek to attend to the dying days of my parents. Most all of you have received the epistle of my mother’s time in the hospital and the “more time” which she was granted last summer.
It should also be noted that, though my father was never “acute” or sick, for the past two and half years I have traveled 500 miles every other weekend to support my dad and the 24-hour caregivers who attend to him.
Well, the travel has increased as the dying has quickened. Since early December, I have been on the road every weekend. There were the usual winter holiday events and the week of 24-hour care for my father to give a vacation to his caregivers. In early January, there was even a trip to Santa Fe to help plan an event for Stephen.
By the end of January, my father had fallen twice and the bedbug bites were multiplying. My mother, who had “graduated” from hospice back in late November, began a round of doctor’s visits for severe back pain.
On February 6-7, I flew to Ohio for my uncle’s memorial. This was a dry-eyed affair officiated by a pastor who didn’t know him. The only grief was loosened by my brother who, during the “open mike” section, broke into a heartfelt rendition of our uncle’s favorite song.
The next week, my mother’s doctor visits reached a manic pace, as there was a suspected tumor. The medical machine is so broken: tests are given, results are anticipated, voice mail answers our calls, specialists in silos, so paranoid of saying anything “wrong,” shuffling people from here to there, grim-faced and silent. Then the word. It was a tumor on her ovaries - was it cancer????
On Monday, February 15, at home, after a day which included taking her advance directive around to a bunch of doctors and a pulmonary function test to see if her heart could survive surgery, her pulse was up at 130. The caregiver called 911 and there she was, back in the belly of the beast. Back to Los Angeles I went, this time two days earlier than planned.
Her lungs were filled with fluid and were drained twice. The oncologist came and began to explain the two or three further tests to help him “stage” the cancer. To this she said, "No more tests. I want to get home."
The grief and sorrow which I have been practicing again kept me present as she endured the hospital full of people “just doing their job.” A place just chock full of Hope, Cope and Dope. There were calls to fellow scholars to help with crying and sorrowing - what a joy to have people to whom you can say a few things about the absurdity of the experience and get the sadness of what is happening.
She was in the hospital for four days, during which she asked every doctor how long she had to live, used the word dying, even though it made many people cringe or obfuscate.
By Saturday, she was home again on hospice and in her room, the room where she had slept for nearly 50 years. Ah, how that room must know her, having contained her more than half of her life.
Helping people die at home is a serious labor of heart, mind, spirit, and body. There is always something to do to maintain the house, the person dying, not to mention the trance of well-wishers.
The first few days, the hospice had an around-the-clock “crisis team.” I guess this group of people were there to make sure she didn’t die too soon? I wrote a letter to the returning hospice nurse, for whom I have no use but my mother likes. This is an excerpt:
There are two things I would like to propose:
1) Please consider curtailing the continuous care team. Strangers in the house, unknown to Betty, who disrupt her constantly by taking vitals, lurking, etc. are not comfortable. We are working super hard to attend and be present for her death.
2) If I had a nickel for every time someone asked her if she was in pain and offered her drugs in the past week, I could retire. When I left yesterday at 5:00 p.m., she had one pain, on her right side, where another tumor may be growing on her lung. Just previously, however, she needed to repeatedly tell Lora and the CC LVN that she didn't want morphine. It was heartbreaking that they could not hear her and kept asking yes-no questions to justify their belief that she must be in pain.
There is a difference between pain and suffering. There is this assumption that dying people must be suffering because they are dying. Drugs seem to be employed to addle consciousness and are a barrier to the expression of grief which can bind our hearts together. Betty has spent the past 30 years preparing for her death. She has attended to the teachings of her Christian upbringing, studied all the great religions, been attentive to her ancestors, actively remembered those she loved who have died, and embraced "alternative thoughts." Look around the house at the pictures - she knows whom she is going to meet when she is gathered in. Plus, her best friend of 60 years, a spiritualist, has told her “people from the other side are waiting for her.”
Currently, the tumor is as big as a football in this 4’ 10” 110-pound woman’s stomach. The only pain medication she takes is Motrin. We muse about this repeatedly; she says, “Isn’t it great I can stay aware for all this?” She still has the congestive heart failure, her diagnosis when she was in hospice last summer and fall. It seems to me that her wondering, her not knowing about what is waiting for her, is a key element of calmness, as she dances with the end of her days.
She wrote her last newspaper column, which was published on Friday, March 4, the day before her 91st birthday. The cards and calls rolled in, even from people she had never met…
Simultaneous to my mother’s illness, my father’s dwindling has quickened. At 90, he takes no medications for anything to keep him alive, nor has he ever had an invasive medical procedure, except for when he was eight years old. In the early 1930s, he had pneumonia (no antibiotics), and had a hole drilled through his back to drain his lungs.
He is dying of old age, from what I can see. He is weaker, slower, talking less, etc. However, medical orthodoxy will not allow that. In their language, he has dementia - or Alzheimer’s. Here are the extremes of the religion of medicine, which has “faith” that a “cure” can be found for everything. I will call my father “demented” or “addled” as a descriptor, but work hard not to make it a name. I recently explained to him the parts of his memory which were gone when he asked. He understood in that moment. Now? More than likely not.
His ability to walk has severely declined in the past two months. He uses a walker all the time in the house. Living is bed to sitting chair to bathroom. He is eating less, and because his involuntary nervous system is declining, he is having a hard time chewing and swallowing. Just today, I gave him a shower. Oh, our tears flowed as I soaped and rinsed and soaped and rinsed…
While my mother has been preparing for her death for years, my father has been, shall we say, oblivious. He has no plans, and not much of an idea of what may happen. He has been attentively seeking to know his ancestors from Poland, and after being raised a Catholic, he is an early, hungry, secular humanist. An artist with years of Jungian analysis, chanting, meditating, active imagination, etc., he is well-versed in the non-monotheistic understanding of the end life. If his memory and executive functions had not forsaken him, he might be able to wonder his way through his death as my mother seems to be doing.
I attempt to talk him through some of it. There was a dream he had about his old people from Detroit, where he grew up, inviting him to the farm outside of Detroit. He became quite energized when he found the charcoal on paper drawing he did of the house where he was born. He immediately had it framed, and it is right across from him where he sits.
To assist him with his wondering, I have enlisted the services of a person who was a death midwife first and is now a rabbi. My father is Jewish by blood. His mother converted to Catholicism when she married his father. The rabbi made an impression. So the current plan is for him to be buried 15 graves away from his mother, whom I visit/feed each trip to Los Angeles in a Catholic cemetery. He will be in his uncle’s army hat and in a kittel, the Jewish shroud-like garment, and then draped with the American flag which was on his father’s coffin. Of course, this takes labor, wrangling. There is a big monopoly around what happens to people’s bodies when they die.
So here I sit, in Los Angeles again, having been home for a few days. Both parents are “resting” comfortably, sleeping 18 - 20 hours per day. When I am with each of them, crying and wonder keep us in the moment, our hearts broken open.
Most people are quick to ask the question, “How are you doing?” which has rankled me for some time now. It is an invitation to reify my internal world as the locus of what is important. My most persistent answer these days is, ”As long as I keep crying, I can stay in the moment.”
Tears of gratitude always flow when I ponder what this would all be like without all that I have learned these past two and a half years, not to mention the kindred spirits with whom I have shared this learning.
Below is part of an email sent to the people involved in putting on an event for Stephen in Santa Fe next week.
What I am learning now is that with some effort, there are a number people ready to show up to assist with the labor of dying, both sacred and profane. They are just on the other side of the veil or trance. They require a sign that they are needed and welcome.
When I looked at my calendar back in August, while still in the throes of my mother's severe illness and the ongoing dwindling of my father, more than once I considered what planning this event would be like if one of them were in their dying days...but both?
To say you have showed up is an understatement. Knowing we are together, putting death at the center of life, allows the tears to flow.
And this applies to all of you who will read this - fellow scholars, friends, family, and colleagues.
I can feel you all there with me, wondering and sorrowing for my family and laboring on those endeavors we share.
With much gratitude for all of this and so much more,
Brian