Denial; a Story about Death and dying
Just before this year’s Super Bowl, I taught a live webinar called “Introduction to Grief”. I told everyone that after they completed this training, they might find themselves feeling a little bit raw after intentionally diving into some of their most bleak memories. Grief therapy is like that, even myself as an instructor I am not immune.
As part of the training, I spoke about denial, its raw power. Denial is a very common coping method, both for the one sick and their family. It is not necessarily a “bad” or “unhealthy” reaction. During my years at hospice I had come across this dynamic time and time again. Either the person dying did not want to accept it and say goodbye, or vice versa. Everyone wants the process to be a certain way. A chance to say goodbye, to see their loved one not suffer. At hospice I could work with them and help them cope with this all too common reaction. They want this peaceful version of a death, though I knew, even with a peaceful deathk the grief will still feel a crushing blow, despite the anticipationf.
I’m not a huge Super Bowl fan. I prefer college football. However, this Super Bowl was different. This time it had the Philadelphia Eagles playing -and they have a special place in my heart.
I grew up there - across The bridge in New Jersey - 6 miles as the crow flies . In 2018 the eagles were in the Super Bowl for the fourth time in 50 years, and had never won. Something like that. Unfortunately, my mom , a huge fan , was very very sick and actively dying just a few weeks before. As I took the steps necessary to get her home, to hospice, to maybe have that peaceful death, I encountered resistance and denial with just about everyone. Family and Friends.
This was early January 2018; she was hospitalized because she was not getting enough oxygen. She had pneumonia, the flu, congestive heart failure and COPD. Yet for some reason, family and friends thought she would get better.
Denial
My brother drove down from upstate New York on the Monday she was admitted. He , saw her and left thinking it was all fine, which I found questionable and concerning.
Denial.
On tuesday and wednesday a snowstorm kept family and friends away, or maybe they weren’t going to show up, I didn’t know. They all seemed so blasé about it.
Denial
I hopped on a flight on Wednesday to be by her side. I don’t remember how I got from the airport to the hospital. I know it involved going to my childhood home, opening the front door or using the garage code but nothing was working. The key wasn’t working. The code either. I was freezing in my California clothes. It was cold for New Jersey, 0 degrees. I called my mom’s companion, Barb, in hysterics, and she talked me through it. Finally, I got in, dropped my stuff and got in the car and drove over to the hospital, in a hurry.
I arrived at Voorhees Virtua hospital 10 minutes later, and parked at the first spot I could find. It was almost midnight. I entered the front doors, but was told this was the wrong entrance, that she was up the hill in the ICU. Rather than get back in the car, I ran through the snow, up the hill, slipping, sliding, freezing . I got into the building, shouting “where is the ICU?! “, like I was in a Shirley Maclaine movie.
And then I ran to her.
I didn’t know what I would find. I thought she was on her deathbed, alone. This thought, this nightmare, had driven me there.
I entered her room; surprisingly she was sitting upright and perky - “well hello!” She said, I was confused.
What I soon learned was that In the ICU, the goal is to keep people alive. They keep patients pumped up with steroids and breathing treatment, so my mom seemed to be feeling pretty good. That’s probably why my brother came and went.
At this point, this huge snowstorm was still keeping my aunt, my brother and my mom’s friends away, unable to reach her. without a lot of effort. Didn’t they realize this was it?
Denial
I found myself having the decision of what to do next. My years at hospice had prepared me for this moment, but really one can never feel fully prepared.
I knew two things for sure, she wanted to die at home, and she didn’t want to be kept on a ventilator. She had a DNR. Though she wasn’t on a ventilator, she was on the closest thing, a BIPAP. This BiPAP was keeping her alive but she said she hated it. It was time.
So I began to set her up with hospice. It took two days of paperwork, etc. before I could get her home. In the meantime, I called all the relevant friends and family to inform them of this decision. I don’t know why nobody had thought to initiate hospice, but chalked it up to lack of experience.
Denial.
They understandably wanted to know why I thought this was the right move. Not many people are educated about hospice - most have many misconceptions. “If I go in I am admitting I am going to die “ - this means acceptance, the opposite of denial.
Denial
Doctors don’t always educate their patients, except in obvious cancer or other diseases with a timeline - my mom and dad didn’t have an imminent disease - just declining rapidly with multiple respiratory illnesses - no obvious way to know when to start hospice. Doctors have their job to keep people alive, as long as possible.They don’t have incentive to release to hospice. In fact, I had to be the one to approach a nurse to ask if she qualified as a hospice candidate and she said “ Of course, let’s start the paperwork.” Why hadn’t anyone told my brother this?
Even then, as I called friends and family to explain my decision- most of them thought she would get better.
Denial
“Even if she does survive this, she will just bounce from rehab and back, which really is a low low quality of life”, I would tell them. We had gone through that with my dad.
My mom wanted to go home. Each person I called, I passed the phone over so they could talk to mom. They all got the chance to say goodbye and that they were coming soon, and she would say “I hope I'm still alive”. Nobody knew what to say to that, you see, so they just said random things. They told her she wasn’t going to die.
Denial.
They did tell her they were on the way. These calls were made on Thursday, Friday and Saturday, my brother and aunt were coming early sunday morning, to what I hoped would be a last peaceful goodbye.
At least my mom did get to talk to each friend or relative I called.
In the hospital my mom kept saying “I want to see the playoff game” over and over. and over. There were a few more; these were her mantra.
I want to go home
I want to watch the playoffs
I want to watch The View
The View you ask? Yes, sadly her life had been reduced to the connection she felt with one of the hosts, Joy Behar. My mom was very smart, funny and strong. She traveled, she read, she wrote, she sketched. She had lost the ability to write a few years before. To see her continue to withdraw as she declined was difficult. She had lost interest in visiting with people, except on the phone, when she sounded normal to everyone. By 2017, she had turned inward. She stayed in the kitchen glued to the tv. This is common in the process of dying, as people get closer to death They show no interest in the outside world, even others around them. So I knew she was getting closer months before on my last visit. She didn’t even stop watching the to to go visit with her granddaughter in the next room, whom she adored.
This is the last conversation I had with my mom, on that Saturday night we got her home. :
“You’re home”
“I am?”
“Yes”
“I want to watch the View”
(Me and Barb desperately try to find an episode on her unnecessarily difficult DVR system )
“It’s not on”
“I don’t care”
“Okay here is an episode of blue bloods”
I swear if we had found the View on a recording she might have lasted just a half day longer.
I hoped she’d make it through the night to see her cherished sister, whom she repeatedly cried out for. She slipped away just 3 hours before my aunt and cousin arrived Sunday morning.
We did the burial and a small service and had a mini shiva. There weren’t many relatives and friends there. It made me sad. My sister sobbed through the entire burial. She has no filter. It was truly heartbreaking. I was just numb and exhausted.
When I came back to California, I needed support from the friends that surround me here. The Eagles had miraculously gotten into the Super Bowl. So I threw a “Super Bowl Shiva”
I got the deli meat, the cookies, the whole thing.
When the eagles won, I finally cried. I was lucky to have a childhood friend that lives here in san diego, come to the shiva with her mom, so it felt like I had some of the country club drive gang there. That felt good. While I cried, uncontrollable sobs, my childhood friend held me tight.
Today as I write this, my mom and dad’s best friend, and a second father to me was buried just two days ago. I got the text that he was going to hospice, right as the Super Bowl started, somewhat fitting considering my mom’s last days. Jack’s wife Rose (a second mother to me) had spent that very morning talking about my parents and their times together when we were young. How our lives intertwined. I texted old photos, kept in touch with them through the whole last week of his illness.
Rest in Peace Jack. I love you. You were a second dad. I can’t imagine a life without you. We will be there for your family, don’t worry.
