Anticipatory Grief – What is it and how do you cope?

This article was authored by Corrie Sirota M.S.W., P.S.W, and was published in the World Alzheimer’s Report 2022.

You or your loved one has just been diagnosed with an illness – Alzheimer’s’, Parkinson’s, cancer or any number of degenerative conditions. You start experiencing a range of emotions – shock, denial, sadness, anger. In fact, it feels a lot like grief, but wait, no one has died. You then begin to worry that there is something psychologically wrong with you or wonder what kind of person grieves a death before it has actually occurred? Welcome to Anticipatory Grief.
To understand anticipatory grief, one must explore the definition of grief. Grief is that feeling or emotion that is traditionally experienced when an unwelcome change occurs or someone we love dies. Whereas, Anticipatory grief is the process associated with grieving the loss of someone before the person dies. (Burke et al., 2015; Johansson & Grimby, 2011; Patinadan et al., 2020; Shore et al., 2016). Some refer to these emotions by utilizing other synonyms such as premature grief, pre-bereavement reaction, anticipatory mourning, pre-loss grief, pre-death grief.

Anticipatory grief can be distinguished from grief in a number of ways. To begin with, unlike grief, anticipatory grief can be experienced by both the person who is diagnosed with an illness and their loved ones. Additionally, the process of grieving typically begins as early as when a person and their family members receive a diagnosis and will likely last until that person dies.

Anticipatory grief can manifest in many different ways, including physically, emotionally, cognitively and spiritually as grief is a holistic response to change and as such it is not limited to feelings (Shore et al., 2016). The diagnosis can also pose a threat to the stability of the person’s life and/or the life of those around them. These feelings of uncertainty can be experienced at various stages throughout this illness from the onset of diagnosis through middle stages culminating with the death of the person.

• Anticipatory grief can affect the person who has been diagnosed with an illness as well as and their family & friends whereas grief will only be experienced by the family.
• As previously stated, anticipatory grief will be experienced upon receiving a diagnosis and will end when the loved one dies whereas post death grief may last indefinitely.
• The emotional intensity of anticipatory grief increases as death approaches whereas emotional intensity of grief after a death may dimmish over time (Shore et al., 2016)
• Anticipatory grief helps provide time for the person with the diagnosis and their loved ones to prepare for their deterioration and subsequent death and make necessary adjustments around the impending loss (Costello & Hargreaves, 1998).
• Anticipatory grief also gives loved ones the opportunity to develop coping skills for the life changes that will take place after the death, attend to unfinished business and engage in important discussions that may have not been previously addressed.
• Anticipatory grief can also be the impetus to make the most of the time the person who has received the diagnosis and their loved ones have together.

For the individual living with a diagnosis, they may experience multiple losses and numerous stressors concurrently. These include but are not mutually exclusive to physical losses, cognitive losses, loss of their perspective on life, loss of hopes and dreams, and loss of the future with their loved ones (Cheng et al., 2009; Shore et al., 2016). They may also experience multiple feelings such as denial, shock, disbelief, anger, depression, bargaining, and potentially acceptance as identified by Elizbeth Kubler-Ross (Smaldone & Uzzo, 2013). Further to that, they may experience distressing thoughts about their loss of functioning and eventual death, this may include unexplained symptoms and uncertainty regarding treatments (Cheng et al., 2009).

The loved ones of someone diagnosed with an illness may also experience multiple losses and numerous stressors such as loss of hopes and dreams, loss of the future with the terminally ill person. They may also be impacted physically, emotionally, cognitively and spiritually by the anticipatory grief they are experiencing (Cheng et al., 2009; Shore et al., 2016). Furthermore, they may experience a significant amount of uncertainty about their future as they navigate the imminent death of their loved one (Brighton & Bristowe; 2016).

While there is no one size fits all model about how to support someone navigate anticipatory grief, the following are a list of suggestions:

Remember that anticipatory grief is normal – many individuals may think that these feelings are wrong and harbor guilt about thinking this way. It is important to acknowledge these losses as part of your lived experience and explore these thoughts and feelings rather than avoid them.

Anticipatory grief shared, may be anticipatory grief diminished – try to connect with others who may be experiencing these types of losses. Consider joining a support group in your area that will help bond with other like-minded people. IF you are not a “group person” please consider seeking some sort of social emotional counselling that can offer much needed support and validation.

Experiencing anticipatory grief doesn’t mean you are giving up – you can grieve the changing circumstances and still support the person with the diagnosis by identifying the necessary resources to help them maintain a level of comfort as the illness progresses. Make the most of the remaining time – the ‘silver lining’ in knowing that someone has a limited time provides all those effected with the opportunity to cherish the remaining time and make the most out of it. Communication is integral for both the person with the diagnosis and the loved ones. Don’t leave anything left unsaid.

Self care is not being selfish – For those who become caregivers to the person with the illness, it is essential that you remember to find sometime for yourself. This includes creating and accessing your support systems that are available to you. Grief shared can be grief diminished.

Anticipatory grief does not diminish grief – Just because you have mourned your love one when they were ill, that does not mean you will not have strong feelings of grief when they die. The type of grief changes it does not disappear.

Essentially, it is imperative that you recognize that anticipatory grief is a very real emotion when someone is diagnosed with an illness and for their loved ones. While it is painful to watch someone you love or you personally to experience anticipatory grief there may also be some positive aspects to it in that you are able to make some arrangements, share feelings and emotions that you would not have when someone dies of a sudden death. Always keep in mind that support is available and that no one must experience this alone. Acknowledging anticipatory grief allows all those who experience these feelings to plan the best possible quality of life for the remaining time they have as well as a dignified death.

Submitted by,
Corrie Sirota M.S.W., P.S.W,
Clinical Social Worker & Psychotherapist, specializing in grief, loss and bereavement.
www.corriesirota.com

Brighton, L. J., & Bristowe, K. (2016). Communication in palliative care: Talking about the end of life, before the end of life. Postgraduate Medical Journal, 92(1090), 466–470.

Burke, L. A., Clark, K. A., Ali, K. S., Gibson, B. W., Smigelsky, M. A., & Neimeyer, R. A. (2015). Risk factors for anticipatory grief in family members of terminally ill veterans receiving palliative care services. Journal of Social Work in End-of-Life & Palliative Care, 11(3-4), 244–266.

Cheng, J. O., Lo, R. S., Chan, F. M., Kwan, B. H., & Woo, J. (2009). An exploration of anticipatory grief in Advanced cancer patients. Psycho-Oncology, 19(7), 693–700.

Shore, J. C., Gelber, M. W., Koch, L. M., & Sower, E. (2016). Anticipatory grief. Journal of Hospice & amp; Palliative Nursing, 18(1), 15–19.

Smaldone, M. C., & Uzzo, R. G. (2013). The Kubler-ross model, physician distress, and performance reporting. Nature Reviews Urology, 10(7), 425–428.