Telling your loved ones they’re dying
Nearly 6 months have gone by since my father passed away yet it still feels as if it happened yesterday. When I dream I can still see his face so vividly, when I think about him I tear up at the thought of never hearing his voice again. Losing someone who you cared about deeply is an immensely painful experience I never really understood prior to his death. Unlike most things in life, death is a permanent separation from the person in the context of present reality.
Since his passing, several strangers and friends have reached out to me either sharing their experiences with recent losses or offering me encouraging words about how they dealt with similar situations. I’m very grateful to have created this community centered around providing mutual support and I hope to be able to ease others’ struggles through sharing my perspective.
Although 6 months might not seem like a long time, my feelings have cycled through many characteristic stages of grief. I’ve experienced episodes of extreme sadness where I didn’t want to do anything besides lie in my bed and cry. I’ve experienced moments of relief, knowing my family no longer has to carry the burden of uncertainty that had imprisoned them for an insufferable amount of time. I hit temporary moments of peak anxiety and depression I didn’t think I would be able to bounce back from. The best piece of advice I can offer others going through similar situations or experiencing similar feelings is that everything you’re feeling is temporary. Emotions aren’t static, they’re dynamic. However, that doesn’t mean you shouldn’t seek help or advice from professionals or those who you trust — while I haven’t sought out therapy yet, I’ve confided in others who’ve supported me and helped me overcome emotional and mental obstacles.
Although I’ve made tremendous personal progress in working to control my grief, I’ve been reflecting and thinking how I can better support others. I decided one appropriate avenue is working to amplify voices of fellow caregivers, patient advocates, and patients. One grievance I still carry with me (and probably will for a long time to come) is the feeling that I did not do enough to explore every possible option for my father, or that I didn’t do enough to advocate on his behalf. These thoughts are irrational yet I can’t rid myself of the ‘what ifs’.
As my father’s cancer quickly progressed, his ability to communicate with others drastically declined. Doctors and nurses would speak at him, and he would look back at them with blank stares. I vividly remember the moment my father’s doctor hold him he had to make a decision whether or not he wanted to get treated. However, it was left up to me to tell him how long he had to live.
My father was diagnosed with some sort of metastatic cancer after they found lesions in his brain after his seizure back in early August 2020. He had a seizure the day of my uncle’s funeral (my uncle passed away after a gruesome battle with pancreatic cancer). ER physicians determined the source of my father’s seizure was severe brain inflammation, likely caused by salt-and-pepper metastatic lesions sprinkled throughout his brain. My father spent weeks in the hospital as they searched for the origin of the cancer. After about a week, they determined it was end-stage small cell lung cancer. My father spent a few weeks in the hospital undergoing whole brain radiotherapy to try and minimize the brain lesions.
After his discharge, he was summoned to a pulmonary oncologist. At his first appointment, his pulmonary oncologist marched into the room and pulled me aside — he let me know that with treatment, my father might have a few months (maximum up to a year) to live but without treatment, he surely wouldn’t make it longer than 1–2 months. The brief exchange left me speechless. It was the beginning of September 2020, about half a year into the pandemic. I was wearing 3 masks, including an N95. I immediately began crying and ran to the restroom — my glasses steamed up and my masks drenched with my tears. I could barely breathe. I could only afford a minute to collect myself because I had to return to my father.
The doctor sat across the room from my father, who blankly stared back at me. For a second, my father and I locked eyes and he pulled down his mask and smiled. He could tell I’d cried, as my make-up was smeared across my face. I couldn’t tell if he understood what was going on but I knew he felt my pain. Even when he’d lost his mental acuity, we had a way of connecting with each other.
I asked the doctor when we could start treatment if my father decided to get treated. The doctor matter-of-factly replied that before we could even discuss treatment options, he had to tell my father how much time he had to live, based on his assessments for with and without treatment. I turned to my father and asked him if he wanted to know. My father blankly stared through me, out the window. My heart sank as I saw him tear up: did he overhear our hallway conversation, or did he just somehow know things didn’t look so good?
I asked my father again whether he wanted to know the prognosis. My father shook his head ‘no.’ I asked my father if he wanted to get treated. My father shook his head ‘yes.’ The doctor quickly replied that would be impossible without letting him know how much time he had to live either with or without treatment. My father’s mask was still pulled down and his lip began quivering as tears collected in his eyes. I turned to the doctor and asked him if we could continue the conversation another day.
My father refused to speak to me the entire ride home. When we got home, he refused to eat. He sat at the dining room table, nervously tapping his leg and fidgeting with his reading glasses. I didn’t want to bring up the conversation from earlier that day but the doctor made it very clear time we were racing against the clock for all possible treatment approaches. As soon as I said we needed to talk, my father began screaming at me to leave him alone. The doctor wanted to start treatment the next week, so I screamed back at my father, begging him to talk to me about his wishes. It took three days of the silent treatment before he agreed to let me tell him how long he had to live, with or without treatment. That night I slept in his bed with him and we cried for several hours, holding each other. We took turns talking to each other, reminiscing about fond memories we had fishing when I was young and how we’d go on a fishing trip as soon as he finished his first course of treatments. The next morning I called his doctor and we scheduled his first chemotherapy session.
My father never finished his second round of chemotherapy. I still have nightmares flashing back to the night I told my father how long he had to live, and how things might’ve been different had he not agreed to get treated, or whether I should’ve sought more opinions prior to beginning his treatment.
The bottom line is that you’re never ready to tell your loved one they’re dying. No matter what, you’ll have regrets and ‘what ifs’ and you have to learn to live with them, especially after your loved one passes away.
