Anticipatory grief: Giving a name to the feeling

By Patricia Montoya, 04/03/2023

After losing my brother and my mom to cancer, I went on a quest to understand a feeling that I could not name. I was confused about how I could already feel despair when the people I love were still with me. For me, anticipatory grief is that feeling when I know something horrible is going to happen; I just don’t know how to explain it, because it yet has not happened. Anticipatory grief also encompasses those feelings of not being understood, because I was not directly affected by illness. Over the years I’ve learned about this challenging feeling and how to cope with it.

My senior year was taxing. My brother was in and out of the hospital for a year fighting against a very rare form of leukemia. I went from one day telling myself that my brother could not die, to planning his funeral in my mind the next. Then, he had had a relapse. My parents made the difficult decision not to begin chemo again, and to provide my brother with the best care through the end of life. He was 16 years old, and I was 18.

9 years after my brother’s death and 11 years after my mother had beaten breast cancer, we found out that she had pancreatic cancer. It had already spread throughout her body, even into her bones. We all knew that there was no decision to make. My mom and dad got to work on her end-of-life plan. These are some of the most beautiful and painful memories I have with her. She was going back into a cocoon, relaxing into what it was, embracing that fear of the unknown, but knowing with certainty that she had lived a full life. I saw that her relationships with friends and family had a tie stronger than death.

At both of these times, I thought I had to be strong for the people who were leaving. However, with time I have learned some lessons that I want to share with you:

  • You can grieve someone who is still alive. That is why it is called anticipatory grieving. You are anticipating the hurt, the pain, the loss.
  • It’s okay to acknowledge what is happening. When I had some time alone with my brother, this was one of the hardest parts—we were both ignoring the elephant in the room. I was trying to hold back tears so that I wouldn’t hurt him, but now I think that crying would show him how much he would be missed.
  • You do the best you can do with what you have at the moment. I remember my mom talking about being scared of death, of the unknown. I also remember how scared I was of the conversation. I held her hand without talking because, to be honest, I was scared myself, scared of a life without her, scared of not saying the right thing.
  • Palliative care can make a difference. When I was alone with my mom, I asked her very clearly what she wanted for her end of life. She said she did not want to feel pain. So from that moment, my sole mission was to do precisely that. We worked very closely with the palliative care doctor and nurses to understand when she needed more medication, what she was feeling, what she was hearing.
  • Asking for help is hard but is vital. When my mom was diagnosed, I did not know how to ask for help. I was starting a new job. I was heartbroken and did not know how to manage the corporate world while grieving. My employers were understanding with my situation, including that I had to travel to my family in Colombia. However, looking back, I wish they had explained that I did not need to attend so many meetings until I got back on my feet.

Sometimes it is hard to know what we need. Meanwhile, people around want to help, but may not know how. Try to communicate.

  • Nobody knows what to do or what to say. Sometimes the right thing will be wrong at a specific time. When people said to me, “They are in heaven now,” I would think to myself, “What good does that do me?” However, I have been in their shoes, and it is hard to know what to say to comfort someone.  For me, it helped to give people a break by remembering they are hurting as well.
  • Whatever you are feeling is okay. You do not have to explain it to anyone. I had just graduated from high school two weeks before my brother died, and I was leaving for college in another country. I partied and cried. I allowed myself to do what I wished at that moment. Grief does not come with a handbook; permit yourself to feel.
  • Take all the time in the world to heal. You experienced a loss. People understand that your body needs time to recover from injury. The same is true when you lose a loved one. Just because it is not evident to the human eye, it does not mean it does not exist.

Anticipatory grief is the anticipation of a loss. It is facing the idea of and planning the death of this person before they have transitioned. The feelings that come with this are normal. Do not be afraid to talk about it and discuss it with your loved one passing away. The more open you can be about the situation, the better it will be for you. Saying goodbye to someone you adore might feel like the end of the world, but let me tell you, you will stand again. We all cope with anticipatory grief in many different ways. For me, it was understanding that no matter what people said or suggested, they didn’t have all the information to make decisions for me. I needed to know that my feelings were valid.


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One Response

  1. Marcia Taylor says:

    Our Health & Wellness Ministry has been hosting small group gatherings to discuss various mental and emotional health issues including grief of life and death.
    This is so helpful. Most of us know anticipatory grief well, we just didn’t know what to call it and/or may have felt too ashamed to acknowledge the feelings.

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