After recently giving birth, a friend of mine was diagnosed with a terminal and aggressive form of brain cancer. In disbelief, I wrote to her about holding onto hopes for advancements in medicine and new treatments. True to her nature, she thoughtfully replied that while it’s safe and normal to hang onto those hopes, it’s also important and meditative to just be aware of her true time range and recognize that there’s no way of knowing how it will really play out.
She went on to write, “I will say that understanding and respecting my own mortality has a huge ability to amplify the importance of life. Life is so low but also so high in this position, and I don’t take that for granted.”
It can be incredibly painful to cope with the news of someone you care about’s terminal illness. For many people, the grieving process begins before their loved one passes.
What is anticipatory grief?
Watching someone you love struggle with a medical condition like Alzheimer’s, Parkinson’s, or terminal cancer, knowing that death is on the horizon, is heart-wrenching.
Anticipatory grief, which has also been called pre-loss grief or pre-death grief, describes a person’s grieving reaction in anticipation of the death or decline of oneself or a loved one. It can also refer to the distress before another form of loss.
Not everyone experiences anticipatory grief, and experiencing the grief beforehand doesn’t necessarily mean that you’ll experience less grief after a person dies. In fact, sometimes it’s an indication that you’ll experience more.
Grief is one of the most unpredictable and uniquely individual psychological experiences. There’s no set amount or normal pattern that can be expected or predicted.
Why do we grieve?
Christopher Hall, the Chief Executive Officer of the Australian Centre for Grief and Bereavement described grief as “the price we pay for love, and a natural consequence of forming emotional bonds to people.”
In other words, when death or disease severs our deep connection to others, the loss can be felt just as deeply as the love and care.
Grieving can also center around a dramatic change in your life caused by your loved one’s illness including a loss of freedom or a new set of caretaking responsibilities.
Anticipatory grief symptoms
Anticipatory grief is experienced in multiple ways. Sometimes it’s similar to the grief that people experience after a loved one passes, and sometimes it’s different. For example, you may notice profound distress at disease milestones such as your loved one no longer recognizing you or transitioning to hospice, or an overwhelming panic every time the phone rings.
Additional feelings and experiences may include
- Depression
- Anxiety
- Anger
- Concern for the dying person
- Hyper-alertness
- Exhaustion
- Fear
- Frustration
- Guilt
- Loneliness
- Mood swings
- Loss of sense of self
- Appetite changes
- Insomnia
- Physical aches and pains
Prolonged grief disorder
Over time, the experience of loss is usually incorporated into a person’s life so that while they still feel it and even continue to mourn their loved one, they’re also able to function and experience the full spectrum of their life.
In 2018, The World Health Organization approved the diagnosis, Prolonged Grief Disorder, which accounts for an intense experience of grief that impacts a person’s daily functioning for more than 6 months.
The diagnostic criteria are flexible depending on cultural and religious contexts and include
- Bereavement following the death of a person close to you
- Continued intense emotional pain and excessive preoccupation about the loved one who passed
- “Significant impairment” in your capacity for day-to-day functioning (e.g. completing your work, interacting with your friends, going to school, being present with your family)
Additional symptoms may include:
- Inability to experience a positive mood, emotional numbness, or difficulty engaging with others
- Avoidance of reminders of the person who passed
- Inability to cope with the loss
- Lack of positive memories with the person who passed
- Difficulty trusting others
- Social withdrawal
- Feeling that life is meaningless
- Increased substance use
- Thoughts of suicide
Stages of anticipatory grief
Although grief is an experience that touches nearly everyone, there’s still so much that we don’t understand about it.
Freud described grief as an experience that could be actively worked on in a process of creating an emotional separation between you and the person you’re grieving. In this view, grief work is a process to undertake in order to fill the void and move on.
The idea of grief work dovetailed into the once-popular stages of grief theory proposed in the late 1960s by Elisabeth Kübler-Ross, which included
- Denial
- Anger
- Bargaining
- Depression
- Acceptance
The stages of grief theory is now widely understood to be an inaccurate and oversimplified depiction of grief. It turns out that there is a tremendous amount of variation in the ways and amounts of time that people grieve.
Other theories of grief involve the ‘dual-process model’ which describes an oscillation between different forms of coping, meaning-making as the central issue in the experience of grief, and the concept that grief is like a growing pain that can lead to powerful life lessons of loss and resilience.
Any form of grief, including anticipatory grief, can be any of these things or none of these things to each of us. And it might not be a straight line. A person can experience grief in ebbs and flows without any real pattern or map.
10 Strategies for coping with anticipatory grief
While there’s no way around the challenging and sometimes overwhelming experience of grief, there are some things that you can do to work through your feelings, minimize the damage, and make the most out of the time that you have.
1. Know that anticipatory grief is natural
If you feel uneasy about grieving someone before they’re actually gone, you might find comfort in knowing that this type of grieving is incredibly common and completely valid.
Grief usually only gets worse if you try to shove it down, so allow yourself to feel what you feel and know that it’s part of being human.
2. Do what you can to prepare
Communicate with your friends and family members throughout the process so you can understand each other’s perspectives and experiences. It can be very helpful for everyone to be on the same page around your loved one’s end-of-life wishes so that you don’t have to argue or second guess yourself when the time comes to plan or make hard decisions.
Educating yourself about the person’s illness can also help you prepare for what’s to come. But if you notice yourself ruminating or feeling worse and worse as you spend hours on end on the internet, it’s likely time to take a step back and focus on the here and now.
3. Ask for help
When you’re in a caretaker role, it’s easy to forget or ignore that you also have needs. But ultimately, this will cause more damage than it will help. Life is not a one-person job, and it’s important to be able to say aloud what your needs are and reach out directly for support.
Keep in mind that it’s in no way indulgent or selfish to make sure that you have space to continue the normal daily activities that are important to you such as cooking a meal for yourself, taking a walk, connecting with friends, reading, or even watching your favorite show.
4. Express yourself
Journaling, painting, collaging, or other forms of creative self-expression can support you in honestly expressing or releasing stuck emotions. In addition, practices like yoga, meditation, exercise, or playing music can help ground your body and offer a sense of healing amidst the pain.
5. Make the most of the time you have now
While your loved one may not be able to do the things you used to enjoy doing, there are still ways that you can share pleasurable or meaningful experiences together. It might be feeling the fresh air on your faces, listening to the bird sounds that you record from their favorite park, looking at old photographs, giving them a massage, or taking an afternoon nap together. Think about how you can create pockets of joy and connection while they’re still here with you.
Ira Byock also offers some words that you can consider exchanging with the person including
- I love you
- I forgive you
- Please forgive me
- Thank you
6. When possible, forgive
If your loved one is still well enough, you may consider using this time to process unresolved feelings or issues and make amends. While it’s not always possible or even necessary to forgive, if it feels like it could be healing for you, consider resolving lingering issues before (or even after) the person passes. This might turn out to be you forgiving them, them forgiving you, you forgiving yourself, or both of you forgiving each other.
7. Consider how you want to honor their legacy
Thinking about the ways that you can continue to carry someone’s torch after they pass can be a powerful connection point. What are some qualities about them that you love and respect? Maybe it’s standing up for themself, wearing bold clothes, stopping to smell the flowers, or finding the humor in any situation. Whatever it is, think about how you can fold that into your life.
You can also consider writing down their stories, recipes, poems, or other mementos and gathering them into a physical legacy such as a cookbook, scrapbook, movie, or biography.
8. Nurture your spirituality
Spirituality is often an important aspect of dying. This doesn’t mean you have to connect with any type of organized religion. Your spirituality can show up in a lot of ways including prayer, a connection to nature or music, meditation, or even making room for stillness.
After a person dies, you may find ways of continuing to connect with them that feel healing. Perhaps you’ll talk to them from time to time, dream about them, visit their grave on important days, or recognize the ways that you are carrying their spirit forward.
9. Connect with a support group
Community support is one of the cornerstones of mental health, and there’s nothing quite like connecting with people who have first-hand experience of what you’re going through. Support groups can happen online, in person, or even over the phone, and are able to offer a unique therapeutic space where you connect and learn from others who are also grieving.
10. Talk to your therapist
Grief is a deep and wrenching sorrow that’s hard to navigate alone. In therapy, you can explore your unique experience of anticipatory grief or loss, develop healthy coping strategies to manage the complex emotions that arise, and pay tribute to your loved one.
Connecting with an online therapist from the comfort of your own space can be a great way to build the support network you need to get through this.
Kate Dubé is a Licensed Clinical Social Worker (LCSW) and mental health writer trained at UC Berkeley and UCSF. She specializes in creating a therapeutic space to work through daily stressors, anxiety, depression, trauma, relationship issues and life transitions, including parenthood. Kate incorporates her clinical expertise to create well-researched, accessible content on topics ranging from the individual to the systemic. When you-or a loved one-is struggling with a mental health issue, you can rely on her for evidence-based, empathetic, and useful information.
Read more
