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Caregiver Training Blog

Caregiver Grief, Part 1 - How to Recognize Anticipatory Grief

Caregiver griefWe often think of grief in the context of the period of mourning after a death occurs. However, feelings of loss can begin well before the event actually happens. Here’s a closer look at “anticipatory grief,” along with what all caregivers should know about grieving for a loved one before they’re gone. 

What is Anticipatory Grief? 

According to the Mayo Clinic, “Grief is the natural reaction to loss. Grief is both a universal and a personal experience. Individual experiences of grief vary and are influenced by the nature of the loss.” While the loss of a loved one may be the most common cause of grief, grief can be influenced by many different types of losses, including everything from the loss of a job to the loss of independence through disability. 

However, grief doesn’t begin and end with loss. It can also be brought on by sadness over an impending loss as well as mourning for the loss of an envisioned life together -- beginning as early as the receipt of a life-threatening diagnosis to the progression of a chronic disease or progressive illness. 

Enter anticipatory grief. Explains bereavement counselor Marty Tousley, RN, MS, FT, DCC, 

“Grief does not wait for death to happen; it occurs both in anticipation of and following a loss. Extended illness, disability, severe accidental injury, a terminal diagnosis or the aging and decline of an elderly family member can produce what is known as anticipatory grief and mourning. We find ourselves reacting and continually adapting not only to an expected loss, but to all the losses – past, present, and future – that are encountered in that experience.

What to Expect with Anticipatory Grief

Says MedicineNet.com of this normal human response

“Anticipatory grief has many of the same symptoms as those experienced after a death has occurred. It includes all of the thinking, feeling, cultural, and social reactions to an expected death that are felt by the patient and family....Anticipatory grief includes depression, extreme concern for the dying person, preparing for the death, and adjusting to changes caused by the death.”

However, there may also be an upside to anticipatory grief which isn’t present when a loss is sudden or unexpected. Continues MedicineNet, 

“Anticipatory grief gives the family and friends more time to slowly get used to the reality of the loss. People are able to complete unfinished business with the dying person (for example, saying ‘good-bye,’ ‘I love you,’ or ‘I forgive you’). 

In other words, experiencing anticipatory grief may actually help prepare caregivers to better recognize, process, and accept the eventual loss of a loved one. It can also help caregivers feel closer to the dying person while they’re still alive. 

Are You Experiencing Anticipatory Grief?

As Harriet Hodgson, co-author of the book, Smiling Through Your Tears: Anticipating Grief, wrote for Open to Hope, you may be experiencing anticipatory grief if your thoughts jump around from here to there; you feel constant stress, suspense and fear because you don’t know what each day will bring; and if every day is accompanied by feelings of loss. 

Ultimately, anticipatory grief may feel like an awful waiting game throughout which you have full awareness that the thing you dread will happen, even if you don’t know when. 

Coping Tips for Managing Anticipatory Grief

Recognizing that your feelings are both normal and to be expected is an important initial coping step. Processing the news of a loved one’s impending death takes time -- time that varies from person to person. It’s critical to accept that each member of the caregiving team may have different degrees of anticipatory grief, and some may not experience it at all. No one’s feelings are right or wrong. All are valid and should be respected. 

Dying people deal with death in different ways, so following their lead when it comes to discussing the illness is the best course. Focusing your efforts on how you can help your loved one deal with any unresolved issues in his/her own life, meanwhile, may help alleviate feelings of helplessness. 

Self-care is also imperative. Attending to your own needs-- regarding everything from diet and exercise to recreation and respite -- can help sustain you during these difficult times. Assembling a support network of everyone from family and friends to healthcare professionals and clergy members can also help minimize feels of isolation and disconnection. 

Caregiver grief

And remember: While it’s easy to get lost in your own grief, take care not to overlook the fact that you won’t get this time with your aging loved one again. If possible, use your anticipatory grief as an opportunity to slow down, share, and be together. 

C.S. Lewis wrote, “No one ever told me that grief felt so like fear.” This sentiment is particularly applicable to caregiver grief when contemplating the imminent death of loved ones. However, it's also critical to understand that anticipatory grief you feel before a death is not a precursor to the grief you’ll feel when the death occurs. Nor will experiencing it necessarily lessen or mitigate the  completely grieving process. The second part of this two-part series will address grieving following the loss of a loved one. 

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