When placed in a role that involves such a strong emotional reaction, it can become common for us to “shut off our emotions.” Setting our emotions aside is a survival mechanism that can be helpful during stress. Rather than becoming drained after each visit or engulfed by our worries, we can quickly get on with our other day-to-day responsibilities. This denial can serve a purpose for us; however, it can also prevent us from grieving and healing. This concept goes back to the idea of coming back to ourselves. Finding a good balance between acknowledging our grief and using mindfulness and reflective practice is essential.
Processing anticipatory grief is much easier said than done, especially as a caregiver. Throughout this post, we will discuss ways to embrace these difficult emotions and make meaning of end-of-life relationships to begin this process. We hope to help you find ways to work through these feelings and give you tools to keep in your toolkit for later.
Anticipatory Grief in a Caregiver
Anticipatory grief is grieving that occurs before an actual loss. It may look like mourning the loss of health in a loved one, worrying about what life will be like without that person, or even rehearsing your response to the death. You may feel sad and tearful often, experience fear of your loved one’s health, anger towards your loved one or other helpers involved, and even loneliness.
It is common for caregivers to experience this kind of grief. So common that there are many articles and resources avaliable. The Hospice Foundation of America shares some great tips about how to deal with anticipatory grief. Here are a few findings from this page:
- Allow yourself to grieve. Grief is uncomfortable but letting yourself feel the pain is okay. All these feelings are valid and natural.
- Express your grief. It is okay to cry and be angry. Find a safe place to feel your feelings. Find a friend, counselor, or someone on the hospice team that you feel comfortable talking with to help cope with your emotions.
- Have patience. There is no timeline in grief. You may think you moved forward but then feel a rush of emotions the next moment. Trust that you can and will cope with your loss.
- Journaling and exercise can be helpful. It can help process feelings that may be hard to explain; releasing endorphins can help lift your mood.
Many have heard of the five stages of grief – denial, anger, bargaining, depression, and acceptance by David Kessler. However, the stages have evolved. Kessler recently added a sixth stage called ‘finding meaning.’ Kessler defines this as the process of an individual finding a larger meaning and purpose in response to experiencing a great loss.
Finding a larger purpose in response to a loss can take years. Meaning-making can also reflect on how the individual has shaped you into the person you are today. Maybe you’ve only been a caregiver for a short time and never had a close relationship with the loved one…perhaps you’ve known this person for your whole life and have always had a close bond. No matter the relationship, the loved one on hospice for whom you are a caregiver has shaped you in some way. Reflecting on this and embracing these new aspects of yourself can help process anticipatory grief and accept difficult situations. We encourage you to consider the ways in which your loved one has influenced you to become the person you are today. All positives and negatives.
Those who are grieving may struggle with memories and/or thoughts with distressing emotional consequences. When everything is so intertwined, it’s common to interpret distressing thoughts and emotions as one and the same. This can complicate matters because it can create a downward spiral of negative thoughts and emotions, or for some it can cause them to get distracted by their emotions that they fail to address the underlying thought.
Working through individual stuck points takes patience, perseverance, the courage to examine one’s thoughts and emotions, and the cognitive flexibility to change them. Stuck points are unique to the individual and their experiences, so reflect on any stuck points that may impact your grief.
Also, try and notice the relationship between your thoughts and emotions. A simple way to do this is to find a piece of paper and divide it down the middle. On the top of the left-hand side, write “When I have the thought that…” and on the top of the right-hand side, write “I feel…” Then reflect on the last week and identify thoughts you’ve been having and their emotional consequences. If it’s easier for you, you can also start by identifying the feelings you’ve been having and then trace them back to the thoughts or situations that preceded them.
For many, the “stage” of searching for meaning and purpose is the hardest part. Take time to examine the thoughts that are discouraging you from moving forward. If it feels right decide that you want to move forward and see what might come next. Find ways to honor and remember your loved one. Below are a few tips and tricks to help find your meaning:
- Try to have gratitude for the time you had with your loved one and for the support from others.
- Realize the shortness of life and the value of our life – life doesn’t always last as long as we want.
- Create change by honoring a loved one with the transformation of your life. It can help bring meaning to theirs.
- Commemorate your loved one. Find ways, big or small, to show respect or celebrate your loved one.
- Create a foundation, movement, or project in their honor.
- Honor and show love for those still in your life, making the most of relationships still in your life.
- Do something that honors them, such as how you live your life, treating others as they did, or being more present for grieving others.
Ideas for commemorating
- Do something they enjoyed or do something that you did together.
- Listen to their favorite songs or watch their favorite movies.
- Look through photos with family and friends or even alone to reflect and remember.
- Eat or cook their favorite food.
Boerner, K., Gleason, H., & Jopp, D. S. (2017). Burnout after patient death: Challenges for direct care workers. Journal of Pain and Symptom Management, 54(3), 317–325. https://doi.org/10.1016/j.jpainsymman.2017.06.006
Granek, L. (2012, May 25). When doctors grieve. The New York Times. Retrieved January 16, 2023, from https://www.nytimes.com/2012/05/27/opinion/sunday/when-doctors-grieve.html
Remen, R. N. (1996). Kitchen table wisdom: Stories that heal. Riverhead Books.
Harris, D. and Bordere, T. (Eds.). (2016). Handbook of Social Justice in Loss and Grief: Exploring Diversity, Equity, and Inclusion. Routledge