When Death Comes

PassoverPanorama


I.               The public face.  May 14, 2020

On Sunday morning, as we were finishing our Mother's Day Nia class, my mom was walking her dog, Sadie, and talking with her neighbors.

Then - she dropped. She was unable to talk, unable to move her right side. This is important: she was surrounded by her neighbors and treated within minutes; she was never alone.

Monday night, I taught Nia as usual. It was tremendously nurturing for me. I felt joy; I was connected in my body. I shifted from shock and could experience my emotions. I am filled with gratitude for Nia and for our dancing community, for being on the other side of my laptop with such energy and passion. I really needed that Monday night class.

After three days of being treated aggressively for the stroke, my 81 year old mother was declining instead of improving. After a lot of  thinking and talking, and some loud screaming and crying in the car, it became clear that she was not going to survive into a quality of life she would want and we needed to remove her from life support. Because she had moved from treatment to what they call comfort care, my family and I were able to come to the hospital to be with her as they removed her breathing tube. While we waited for the extubating, we sat with her and talked for a few hours. In those hours, she didn't open her eyes. There was no sign she knew we were there. Taking out the out the tube, though, woke her up. I saw her look past the nurses and see me. She reached up her hand. There were tears in her eyes. I know she saw me. I know she knows I was there. Within seconds, her eyes closed again. I am filled with gratitude (and awe) for this moment.

I stayed with her through the night on Wednesday after a nurse told us she didn’t expect my mother would last the night. I found an article about what to talk about to someone who is dying. It suggested we express what we regret and ask for forgiveness; we acknowledge our hurts and give our forgiveness; we offer our thanks for all we have received from this person.  It's the best thing I've ever done at 3:00 am, and I am filled with gratitude.

I am sitting by her side as I write this on Thursday morning.  I am waiting with her.

 

II.             The underbelly. May 15, 2020.

Here are two equally true things. My mother loved me, perhaps adored me, and was very proud of me. She also could be critical and express displeasure that what I did was not enough. If I called, she would complain it had been too long since the last call. The visit was too short. The worst: my care for her was inadequate when her uterus was removed due to an aggressive cancer three years ago. I went with her to doctor’s appointments and typed out for her the notes I’d made. I rubbed her feet while she recovered in her hospital bed and I stayed two nights with her at her home as she recovered. But it was “only” two nights, barely anything, she said, and she was angry or hurt or something that I had to spend part of each day out in the sun rather than staying the entire time in the hospital and at her house with her. I barely did anything, she groused.

And I was stunned. There it was, clearly, the dynamic I’d sensed, that whatever I would do would not be enough.

Those moments in a relationship are freeing. I’d done my very best and I believed it was not only good enough but actually pretty good. Not amazing, not best daughter ever, but absolutely adequate, definitely enough. Apparently my mother disagreed. The hurt I felt was big.

I don’t feel that hurt now. Whatever. That shit is about my mother, not me. She was bound and determined to believe that she doesn’t get enough love from me (or anyone). Maybe on some level she’s right. I told a friend that there will be some relief when she’s gone, and my friend said, of course. Maybe some of you have a wholly uncomplicated relationship with your mother, filled only with love and good memories. Maybe you would judge me for not being devastated that my mother is passing from my life. Or maybe you are relieved that every one of us is a messy somewhat selfish and definitely complicated human animal.

You know how you’re excited to spend time with your best friend because you know it will be fun or nurturing or maybe necessary? That’s not how I felt with my mother. That’s not how my kids felt with their grandmother. She had a good enough relationship with all of us, and here at the end, I’m thinking good enough is good enough. It’s trite to observe that it is what it is and there’s no changing it now, but fuck if that ain’t the truth. Good enough is going to have to be good enough. My mother loved me and my husband and my kids and we know it. Good life. Good work, mom. Love received.

I want to tell her: hey! I got it! I got the love! It was enough! No, it was spectacular!

I really wish you’d had more fun this lifetime, mom. I wish you’d eaten the chocolate cake without guilt and been less critical of everyone, especially yourself. I wish you’d admired your granddaughter the way you admired and approved of me because that woman is amazing; we’re not sure you saw her. I wish you’d done whatever it took to reach my sister, your daughter, because she didn’t feel that love, not at all, only the criticism, only the sharp stings. That fuck up was epic and the biggest loss. You guys should have had so much fun together.

I spent the night with my mom last night because the nurse said she thought my mom would die soon. Her pulse oxygen level had dropped. That nurse did not know my mom. She’s hanging on. We don’t know why. Her pulse ox is up even as her breath has slowed – a count of 10, no, a count of 20 before she draws the next breath, huh huh huh or a deep deep drag. A few of those and then again the pause, all day. I’ve said all I can say. I’ve prayed. My sister has called and done her best to say goodbye. The kids and my husband all said their goodbyes. My husband, a mensch, picked up my mother’s best friend and drove her to the hospital so she too could say goodbye.

My husband wonders if my mother is still processing. Her collapse was sudden and unexpected. Is it taking a bit longer for her soul to let go? I wonder if life itself simply holds on, asks to continue no matter what, and her body is strong and refusing to give in. Or maybe it is the damn dog and she won’t let go until she sees her Sadie again. We’ve told her, mom, Sadie is fine, she’s with Mary Ann and Katie, and David walks her every day, she has her toys and treats, we got this. Still, she holds on and I think, whatever I’m doing to help her through this, it’s apparently not enough.

It’s 3:00 am as I write. I need to get my brain to quiet so I can fall asleep again. I’m out of prayers, out of meaningful and sacred things to say, done with my thank yous and “you can let go now” and all the words we say to help ease someone’s transition. It’s her transition, not mine, and she’ll do it on her own time.

Is some part of me still holding on, tethering her here? I don’t think so. I’m good with good enough. I wish she’d had a bit more fun this time around.  I know I want more for myself out of life: want more ease in my life, more belief that I can love and be loved, and always more appreciation, especially that what I have is enough – no, it’s spectacular.

Last night my daughter bought us junk food – vegan GF pizza and vegan ice cream without all the coconut cream that makes my belly hurt and vegan GF chocolate chocolate chip cookies and thick organic potato chips. I came home from the hospital and the feast was ready and perfect. Then she and my husband and I sat outside and talked about life.

Everything about those two hours was satisfying and delightful and joyful and perfect. I wouldn’t want to change anything in my life, I said, because it has led me to here, to a perfect night with people I love in a place that I love. I struggle with enough; I struggle with wanting more, with consumerism, with feeling inadequate. There was no struggle last night. It was ordinary bliss, the best kind, easy and available and right in front of me.

Hey, mom? Thank you for everything. Really, you were perfect for me. I got everything I needed. It was what it was, and I’m good with that. I hope you’re taking stock of your life and saying, what a great ride it was. There was enough of everything. Dayenu.

I knew I couldn’t spend another night at the hospital. I had to get some sleep. I knew she might die without me, and I would have to live with that. I knew she’d think I was not doing enough. She’s only going to die once; I can’t spend a few days with her? I refuse to feel guilty. I refuse to imagine that I can influence what she thinks or feels by acting good enough.

It’s 4:00 am. I need to quiet my brain and relax and get a few more hours of sleep. I already called the nurse, and mom’s the same, no change. She’s doing what she needs. I’m doing what I need. Did I show my mom enough love? Probably not, honestly, and I didn’t spend enough time with her and didn’t call her as much as a good daughter should. A few weeks ago, I sent her an email to thank her for sending birthday wishes. I wrote, “You are very kind to me, and supportive, and loving. Thank you for giving me life and nurturing me so well.” I hope she got it, I mean, really got it. I hope it was enough.

 

III.           When Death Comes. May 17, 2020.

Today is Sunday, and it’s been one week (not one month?) since my mother collapsed from a stroke. I’m still in shock, still surprised, still wondering if this is really happening this way.

My mother was at UNMH for three days, intubated and isolated, until it became clear that she wouldn’t improve and the ventilator was keeping her alive against her wishes. Because of COVID restrictions, I wasn’t allowed to visit her. I couldn’t see her and I couldn’t talk with her doctors. I woke early on Wednesday morning, agitated, replaying what the night nurse had told me about her condition: extensive brain damage, not responsive. I talked for a long while on the phone with a friend: was it terrible to give up hope for her recovery and want her removed from the ventilator? I was arguing this with myself but I already knew. I got in the car for an errand, to pick up the week’s share from Vida Verde Farm, but really it was to be alone, turn the music way up to sing and cry, and then to shrill, to scream: let her go! Let her go!

Important note: do not drive while crying and screaming. It’s not safe. Do not drive when you have not slept more than a few hours, night after night.  Absolutely do not drive when there’s so much adrenaline that you experience waves of nausea as the adrenaline surges and crashes like the ocean inside you.

I was able to reach a kind doctor who listened and after some prodding, he offered the option of comfort care. I was talking to him on the phone, repeating what he said to my husband and daughter, making sure that this was the right decision. Then the doctor said on comfort care, we would be allowed to visit my mother. Sobbing, I told the doctor, yes, we want this, yes, we’re sure, please, make this happen.

Important note: the entire medical model is designed to pursue an aggressive path toward preservation of life at all costs. There are no considerations for quality of life. Nor do there seem to be reasonable considerations for whether a treatment is effective -- as if doing something always is better than doing nothing.

After my mother was extubated, a nurse came the next day to take the ventilator. This nurse often worked on the COVID ward. She said she told her sister if she got the virus, don’t let them put her on a ventilator. It’s a long, slow agony. She doesn’t see anyone coming off it alive (they do, of course, but she’s not seeing it). What seems to work well, though, was positioning patients on their chest instead of back. Well, fuck me. Best I know, proning is pretty low cost and widely available. It’s not that ventilators never help anyone, of course. It’s that we’re not used to the hard conversations about who will benefit or not. Because I was not seeing the doctors on rounds, I couldn’t initiate the conversations. We need new protocol, one that says at every juncture, doctors present options for patients and their caretakers to consider. Don’t make me work so hard to figure this out because I’m not sleeping; I am existing on cold turkey slices, potato chips, and chocolate; and I’m still in shock. Plus, I keep driving while screaming and crying, which I know isn’t safe.

I stayed by my mother’s side all that first night after her tube was removed. I’d planned to go home to sleep but a nurse had rushed over to say her nurse intuition told her my mother may not make it through the night. Her pulse oxygen levels had fallen and her heart rate was up. I slept only a bit that night. I was saying my goodbyes in as many ways as I could. It was a precious experience, a gift. The next day was a long one, and my mother’s condition was unchanged.

When I first asked if my mother would stay in the ICU, they said she might be moved to a hospice floor at the hospital. When I asked about hospice again the next day, Thursday, the nurses said they didn’t know. I was following their lead. It didn’t occur to me that there was another option to being in the hospital, and we continued to expect that my mother would not last long.

But by Friday morning, I was jittery and unable to continue the vigil inside the hospital. Why are we in the ICU if she’s not receiving treatment? I have some despair around this now. When she was stable the first morning after the tube was removed, we were at a juncture and again, medical staff should have said what were the options and how we might proceed. I didn’t see any doctors on Thursday. On Friday morning, two came to speak with me, one of whom was strongly compassionate and focused on how she could help. I asked then about taking my mother home and she said, yes, that was possible and she could get that process set in motion. She wished she could give me a hug, she said. I was so grateful and also: why didn’t I hear this on Thursday?

We brought her to her home Friday evening. It was such a relief for me to be in her home. I was able to see for the first time what I had willfully missed before: it’s a lovely home. It’s a double-wide trailer in a mobile home park for seniors. I know that this place had felt safe for her. It has been community as she worked in their food pantry or helped out at events. Her home has sky lights and lots of windows. She has beautiful art throughout and had arranged it so everything can be seen and nothing is cluttered. I’d been to her home many times before, and this was the first time I let myself appreciate it.

How much of my mother’s life will be like that, with me just now being able to see her and appreciate her? 

The last hours were different for me. My nervous system relaxed just a bit by being in her home.

I lay beside my mother on her bed and read aloud to her some poems and prayers though she remained unconscious. The rasp in her chest as she struggled to breathe was so loud that I had in ear plugs and then headphones with music on, and I still could hear and feel the rattle. I headed to a separate bed, knowing her dog Sadie was laying by her side. I woke a few hours later. My husband had woken, too, and was looking at my mother’s photo albums. I spent some more time by her side, stroking her hair, and then went back to bed.

At quarter to five in the morning, my husband came to get me. He said he’d been listening to her breath from the living room. It had changed to short rapid breaths, then a few long ones, then an exhale, and then no more breaths. As gentle as that.

I lay back down beside her. My husband called hospice. While we waited for him, I sponged her arms and legs and misted them with the rose water she kept in her bathroom. What else could I do? There has to be something, doesn’t there, before the men take her away to a refrigerator for the weekend? That was when I broke down – when they carried her out of her home. That seemed so unfair. This is her home. She gets to live in her home. How dare we make her leave.