For the last sixteen months of her life, I was one of my mother’s primary caregivers, and now that she’s gone, I feel lost.

My beautiful, strong, hilarious, and fun-loving mom not only survived but thrived after a heart attack and open-heart surgery at age 67. So 10 years later, we were all surprised to learn that the aortic aneurysm with which she had lived for over a decade had expanded to dangerous territory. We were told she would soon die without another risky open-heart surgery.

The one thing my mother feared more than going into surgery was death. Her cardiac surgeon seemed confident that she would make it through the operation, and it would increase her life expectancy. His faith sealed the deal. What we didn’t know at the time was that there was a secret third option: she would survive the surgery, need a pacemaker, get diagnosed with congestive heart failure, and spend the last year and a half of her life in a slow and painful decline.

It was apparent early in her recovery that my mother came out of surgery far worse than she went in, and it wasn’t long before my sister and I became her caregivers. Thankfully, my sister had moved our mom into her home several years earlier, so she was able to take care of Mom’s early morning and evening needs. When our mother was back in the hospital, my sister would drive straight to see her after work, often staying well beyond visiting hours.

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I took on the role of our mom’s medical advocate, accompanying her to appointments, being the doctors’ point of contact, and staying with her during the days as a companion and translator when she was back in the hospital. My mother came to the U.S. from Cuba as an adult, and her English was not strong enough to understand all the medical terminology being thrown at her day after day.

During this time I had two children in college, two senior dogs with health conditions, a husband who traveled often for business, and an 82-year-old dad who coincidentally also needed a heart procedure just weeks after my mom.

If I wasn’t with my mom due to responsibilities at home or if I just needed a mental break, I felt an immense sense of guilt. I was stretched thin, and the scariest part about it was that I had no way of knowing whether my mom would, or even could, get better. Not one medical professional said the words that in hindsight are glaringly obvious, my mother was dying.

Maybe I was in denial, or maybe the myriad of doctors led us to believe that this new medicine or that procedure or walking more or physical therapy could bring our mother back to the strong, spry lady she had once been. But I, for one, truly did not expect her to die.

This past October, Mom went into the hospital for a minimally invasive procedure, and she never came home. Not only was I shocked, but I missed her final breaths because I went home to try and catch a couple of hours of rest after being awake and by her side for the previous 28 hours. Thankfully my sister was there and Mom was not alone, but missing that moment will be my eternal regret.

When I tell my mom’s end-of-life story people will often say, “What a loving and selfless daughter you were.” The truth is, I do not feel like a good daughter, at all. I was angry inside every time I had to take my mom to a doctor’s appointment, every day I sat with her in the hospital, every hour I sat on hold with her insurance company or had to explain her condition to yet another new doctor.

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I adored my mother, but I did not want to be her caregiver. I wanted to take her to lunch or TJ Maxx, or on a trip to Spain, or sit around and gossip with her. But I did not want to see her in pain and withering away. I was a daughter who still needed her mother. I was not at all prepared for my mother to need me.

It’s been 115 days since I lost my mom, and I still suddenly have the thought, “Oh, I haven’t called Mom today.” For weeks after she died, if I was doing a load of laundry or shopping for groceries, I would get the same pangs of guilt I did when she was alive and I wasn’t with her. The grief is indescribable, and I miss her every moment of every day.

I’ve been alive for 48 years, yet the 16 months when my mother was front and center in my adult life profoundly changed me as a person. I am still learning how to navigate life without her and getting to know the person I’ve become.