It was May 8th, 2023. I called my sister for no special reason. She picked up the phone. She sounded panicky, on the verge of crying. In her half-breaking voice she half-asked and half-yelled at me that she’ll call me later. I pretended to keep my calm, said “sure” and hung up. I said “pretended” because the reality was that this short interaction really stressed me out. I wasn’t sure why, but I felt a strong urge to burst into tears. 20 minutes later my other (oldest) sister called me back, her demeanor was much more calm, she said everything is ok and she and my other sister were caring for my mom, who that week grew even more dependent on other people’s help (I’ll spare you the details of what that means).
Born and raised in Israel, it has been 15 years since I made New York City my home. As the youngest of three girls, with my extended family living in Israel, I rely on my sisters for on ground help and I collaborate with them on caring for my aging parents, doing whatever I can offer remotely and visiting when I can.
Despite the relatively positive tone of the second phone call, I couldn’t shake off the unease from the first one. My instincts screamed at me to catch the next flight from New York to Tel Aviv and see my mom. In 2017, she was diagnosed with breast cancer, and we acted swiftly to remove the cancerous cells. For a while, there were no signs of cancer. However, in December 2022, after nine months of complaining about leg and back pain, it turned out that not only was she not clear of cancer, but it also spread to her bones, skull, liver and skeleton.
Our first visit to her new doctor on Jan 1st offered a glimmer of hope: The doctor mentioned a few treatment options and said that my mom may live 2–10 more years. She began treatment soon after, with a cocktail of hormonal, biological, pain-relief, and medication to counteract side effects.
As I shared my mom’s situation with my friends, one of my friend’s advice stood out. She was a stem cell researcher. She told me: “If I were you, I would fly to Israel whenever I can. The doctors never know how much time they actually have”. Since I was part of the Google layoffs in Jan 2023, I now had the time on my hands and a support system: a husband and caregiver who can care for my two children when I’m away, so I followed her advice. And I’m happy I did so, because it turned out, my mom wouldn’t even get to the 2 year mark.
Before returning to May 8th, it’s worth mentioning that in early April we discovered that the treatment had been ineffective, and the cancer had continued to spread. So on May 8th, with this context and the panic I heard in my sister’s voice, I was ready to jump on a plane, I even found a reasonable flight leaving at 4pm that day.
I paused as I realized that jumping on a plane in a heroic manner sounds cool and seems easy, but what about the aftermath? I was thinking through the scenarios as they affect my ability to return to NYC. If my mother doesn’t get better, I won’t feel comfortable leaving Israel. If god forbid she passes away, I won’t want to leave my mourning family behind. That left the slim chance of her feeling better that would make me comfortable with flying back. I consulted with my sisters and we devised a plan: I’ll speak with her doctor the next morning and decide based on that.
That afternoon I opened the cameras we had installed for my parents a few months prior. Through the screen, I watched my mom eating watermelon, occasionally struggling to catch a slippery piece. My dad was splitting his time between watching TV and watching her worried.
On May 9th, my mother’s doctor explained that she likely has only a few weeks left. “So 1–2 months?” I asked, “more on the lower bound” she replied. The tears gushed out of my eyes. I was sitting on the hallway floor next to the dentist office in midtown manhattan. But I didn’t care. I’m having a moment, well, I’m bracing for a very sad life event. Ok, I’ll be flying out today I concluded. But I’ll wait for the kids to return from school, god knows when I’ll see them next and what might be my mental state.
I landed in Israel on May 10th, Wednesday at 5pm. My in-laws were kind enough to pick me up and take me to my parents’ apartment. They asked if they could come up, I asked my sisters and they said it’s ok. I warned my in-laws that my mom is in bad shape. We came up; honestly I don’t remember a lot from the first interaction. I don’t remember if my mom said my name, if she even reacted. I remember it felt like she’s not really with us, like she’s in her own world. She wanted to lie down and was mostly out of it. My mother-in-law burst into tears. “Hold it together woman” I thought to myself, “cry when you are out the door, not in front of her”. My father-in-law’s voice broke as they said goodbye. My mom asked about 7 times: “why did they leave?” I replied “they didn’t want to bother you when you want to rest” but it didn’t seem to register with her.
Let me pause here for a second and clarify something: I had no real or founded reason to believe anything was really wrong or off. Only a few days before she had dinner with my family in a restaurant. She spoke coherently on the phone with her friends. A lot of my behavior and feelings were impacted by that weird phone call with my sister on that fateful day — May 8th. In hindsight, piecing back the clues and signals there were things that should have triggered the alarm in me (and in my sisters). Like her absence from WhatsApp for example, or the fact that she stopped holding the phone when I video called her. Maybe it became too hard for her, maybe she didn’t care for it anymore, I don’t actually know. But at that point of time in the story I acted out of fear and intuition, rather than actual data.
That night we (well everyone except for my mom) decided we should take her to the hospital. A doctor’s house visit left us thinking something is going on in parallel to her on-going condition. I told her we need to take her and she said she doesn’t want to. I was scared she’ll resist so my sister gave her something that calmed her down. I didn’t love that situation, I’d prefer to go with her blessing, but I felt that we needed to get her help. I got to unlock an achievement I never wished to unlock — riding an ambulance with my mom in the back. A few hours later we learned she had hypercalcemia, which explained some of her symptoms (including fatigue and confusion). She was hospitalized to get a lot of fluids before she can get the correct drug to treat this.
I volunteered to spend the night at the hospital, I was jet-lagged anyways, and kids-free, I can offer that service to my sisters and family. We opened our calendars and set up 24 hour shifts to be by her bedside. At night we hired night caregivers to be by her bed.
On Thursday, May 11th, a hospice bed for her was delivered to my parents apartment.
On Friday, May 12, I borrowed some equipment for when she returns home (like a wheelchair she can get a shower in, and an IV holder).
On Saturday, May 13th, her Calcium was still very high, not as high as Wednesday, but still too high. On that day our mindset has shifted from “how can we help her at home” to “it’ll be a miracle if she returned home”. My sister and I shared a thought that we were too scared to express in words: we should look into returning the borrowed equipment. At this point, staying by her bed no longer felt helpful, useful nor hopeful.
I was no longer “taking care of her” but rather “waiting for the likely end”. I didn’t want to be there anymore. I felt helpless and useless, in the most literal meaning of those words, I wasn’t insulted, I just really couldn’t do anything to help. She wasn’t even there, mentally, with me, with us. She was calling for her mom (who passed away 20+ years ago). Days ago she told me “my daughter didn’t come” which made me wonder if she even knew I, Sivan, was there. In her defense she was loaded with drugs, and on morphine. The medical staff, friends, and the internet told me I should hold her hand and speak to her. That it will offer her comfort and she can feel my presence. That’s what the movies show us, right?
That didn’t sit well with me. I didn’t feel like she recognized my energy or presence, I didn’t feel like I’m offering comfort. I felt like those are things people tell us — the ones who stay behind in this world — to offer us comfort, or to give us purpose, to keep us going and hopeful. Are we there for them or are we keeping them around and comfortable for our own benefit?
My parents’ caregiver and one of my friends both shared write-ups about end-of-life care. Or as I call it, “What to expect when you’re expecting […death]”. I read them both, but I couldn’t help but wonder: how do living people even know what it feels like. Is it based on research? Was there UX research on end of life? Who did they interview? Did any of the interviewees actually reply?
The Dilemma of Presence and What Do We Owe the Dying?
On May 15th, at 11:47 am, my mom took her last breath. It was the first time in my life that I experienced the fullness…
On Sunday, May 14th, I (wo)manned the 3–8pm shift. I was so scared and anxious I could barely be inside the room. My emotional distress translated to physical sensations: I felt like my heart was twisted, I was nauseous despite not eating, I felt lightly fainted. I found a wheelchair positioned to watch her room and sat there, spending most of the time on the phone with my husband, afraid to be alone. I tried my best to stay out of the room, but occasionally felt too guilty and worried so I braced myself and checked in on her. Why did I avoid the room? I was scared to experience the end. I did not want to be in the room when she took her last breaths. Yes, I am weak, and fearful. If I had any confidence that she would benefit from my presence I’d sacrifice and do it. Heck, I already showed up (using sheer will power) so many times. A bit before my shift ended, my oldest sister showed up with my 11 year old nephew. She brought him to say goodbye. I was barely breathing when he entered that room. I wanted to scream “GET OUT” like that movie. “Save yourself, run away”. My mom was the only grandmother he had, he spent a lot of time with her growing up. He was calm and cute, kissed her and told her he loves her. He was braver than I was.
When I left my shift my mom was still breathing and warm.
When saddened, people go to the sea, that’s why the sea is salty
On Monday, May 15th, my dad and parents’ caregiver took the morning shift. I made myself useful by spending quality time with my nephew. I took him to the beach to fly his jellyfish kite. As we took the last turn towards Tel Aviv’s beach, my sisters called me. My first sign was the fact they were both on the call. The 2nd sign was them asking me to use my earbuds. They knew he was with me in the car and wanted to protect him. “It’s over” they said, and my eyes filled with tears (even now when I write this). I asked if I should turn and come back, they said I can do what feels right for me. My nephew figured out the context of the call. I hugged him, told him we can choose what to do. He wanted to go to the beach and it was more than fine by me. A famous Israeli song says: “When saddened, people go to the sea, that’s why the sea is salty.”
It’s common for people to express regret for not sitting at their loved one’s deathbed, and here I am, regretting the opposite. Who am I fooling, if I wasn’t there I would feel that I should have been there, that I missed out on something, that I didn’t do my part. But being there didn’t feel good nor right. I couldn’t say goodbye like they do in the movies, and I failed to forgive her and clear out the mother-daughter baggage. It felt unhelpful (for both of us), and… scarring. I am left with the indelible marks of those days, forever imprinted on my heart and mind. I can never unsee or unhear those last days of her life. I can never forget that feeling of waiting for the end. I wish to remember her stronger, happy and hopefully full of laughter. And I’m stuck here, with years in front of me, and more inevitable goodbyes that await.
I’ve been told that mourning isn’t a linear process, and that has been my experience. Most of the time I’m just my regular self: I don’t think about it too much. But occasionally, out of the blue when I go to sleep or when I write about the end, sadness takes over for only a few minutes, and then it passes again, and everything is “normal”. I notice more of my mom’s heritage to me as a person and a parent: My thirst for life and experiences, my strive to expose my kids to as many extra curricular activities as possible (a piece of her parental ideology), the voice in my head that says “do better”.
[this is the first writing piece my mom will never get to read 😢]