Thursday, June 18, 2020

Saying goodbye to my mother

At the end, there was only a piece of paper with my phone number on it. 

"I need to hold onto this," my mom said. "Or I won't know how to call you." Her cell phone battery had died, and she didn't bring the charger when the nursing home sent her to the hospital in an ambulance because she had fluid outside of her lungs.

My heart seized. I told her not to worry. I told her the nurses would be able to reach me. "Or I will call you," I said. 

Was that our last conversation? Or was it the one when the phone rang in the evening? "Chrissy," she asked, in a panic. "Why am I still here? They are keeping me locked in a room. No one is explaining anything to me! And they are trying to put something in my I.V.!!! What are they putting in my I.V.?"

I asked to speak to the nurse. They were administering a dose of dilaudid, to relax her, she said. The nurse gave the phone back to my mother. 

"I am working with the hospice agency to bring you to us," I said. "You have to be patient." The agency had not finished processing whatever it was they needed to process. So many forms. 

"Okay, Chicken," she said. 

Chicken. She hadn't called me that in years, maybe. That was her pet name for me when I was a child. I also call my children Chicken. 

"I love you," I said. I wished so much that I could be there, holding her hand, and not in my house in New Jersey, watching Little Fires Everywhere.

My mother was in a hospital in Connecticut, dying alone. Dying of cancer, utterly on her own because of the coronavirus. I hated the virus that deprived her of visitors. She'd been ill for over a decade, first with lymphoma, then with circulatory problems that led to toe amputations, then with multiple myeloma, which the doctors said was in remission. There had been so many medical appointments, hospitalizations, days and weeks of feeling very sick. She'd lived alone for the whole time. 

It was late April and she had not seen me, my brother or any family since March 20, when because of  pain so severe she could not walk, she temporarily checked into an assisted living facility near my brother's house in Norwalk, Connecticut. She hated the assisted living and one morning called me at 5 to tell me that she had gotten stuck in the bed. They were not allowing visitors because of the godforsaken virus. She wanted out. Ten days later, she was found unresponsive and the staff nurse, suspecting a stroke, had called for an ambulance. The emergency room doctor asked me about whether she should be intubated, what her wishes were, that she likely had corona, that her chances of survival were very low. That if it was his mother he would not put her on a ventilator.

A little later, he called me back. My mother was doing a bit better. They would not need to intubate her. "I asked her what she would want," said the doctor. "She doesn't want any tubes. Also, she said that you think that you are the boss, but she's the boss."

That sounds like her.

Last summer, I started meeting her at every doctor's appointment. She would take a car service from City Island into Weill Cornell in Manhattan, and I would board some combination of trains and buses from New Jersey.  In July, she had Mohs surgery on a very large squamous cell cancer lesion on her forearm. It was an all day appointment, pretty traumatizing, as the surgeon left her with me in a room long enough that she bled profusely on the floor. I stayed with her in City Island that night. Then there was a series of appointments related to a clogged subclavian artery. And also the primary care physician and the oncologist. Usually we had at least one, sometimes two appointments per week. It was exhausting. And nothing seemed to help her feel better. 

I felt a constant weight of guilt and shame. My mother lived a little over an hour from me, but since I don't drive on the highway, I did not visit her nearly as much as I wanted to, as I should have, as she needed me to. We'd tried to lure her to New Jersey, but she loved her view of the water and the boats, and she loved being near her brother and in the area where she had always lived. 

"You're the one who left," she told me once during a heated discussion, in which I was trying to convince her to move closer so I could take care of her. 

I was. The one. Who left. 

So easy, it would have been, to buy a house in Pelham, the Westchester town where she lived. "I'd like you to live near me," she had said. "So I can be involved." 

It was 18 years ago when we decided, instead, to settle with our 18-month old son in Montclair. A house built in 1897 that came with a century-old piano in its own room. This was the room in which we were planning to set up her hospital equipment. She had a newly discovered tumor in her lungs, something in her liver that suggested it had metastasized, and just for good measure, several pulmonary embolisms. Also the fluid that made it hard for her to breathe. The doctors said it could be weeks or months.

The morning after the Chicken conversation, I tried to call my mom's room. No one would answer. I called the social worker to see what was happening with getting my mom moved. "The doctor has an update for you," she said.

Shortly after, the doctor called. I had never laid eyes on her. After so many doctor's appointments, this one, the last one, I'd not met.

She said my mother had taken a turn. It would not be months, or weeks, but days. 

"Are we able to see her?" I asked, sobbing. Yes, she said. They had just changed the rules, and I could come in for a 15-minute opportunity to say goodbye. We got right in the car. 

No traffic because of the pandemic. As we neared the hospital, the nursing supervisor called me. I was to wear a mask, go to the desk, and someone would come get me. I was to gown up, scrub up, glove up.

This hospital was deserted. The guard took my temperature. It was 97. The receptionist was wearing a leopard mask. A nurse collected me, delivered me. Another nurse helped me with the blue gown, two more masks, gloves. I went in.

The room was tiny. At least it had a window. 

My mother lay in the bed, out of it. Her legs were uncovered. Her eyes were open,  a beautiful light green, but did she see me? "Hi, Mama," I said. "It's me. I love you." I kept repeating some variation of this. She put out her hand, and I took it. I was not sure if I was allowed to. I should have hugged her. Why didn't I hug her? 

I thought to write this before, but I could not make my thoughts go in a straight line. And maybe no one wants to read this. But I finally put it down because I don't want to forget. Everyone says remember the good times. 

But it is also important to bear witness to the worst, worst times. 

Sunday, June 7, 2020

Hello faithful readers

Thank you for still checking this woefully neglected blog. I would like to invite you to read this post I wrote the other day on Medium. It is about emptying my mother's apartment after she died.