Grief is typically associated with some type of loss. This can be the loss of a loved one, the loss of a pet, or the loss of a relationship. However, for caregivers, different types of grief can be experienced throughout the caregiving journey. Each caregiving situation is unique; therefore, how individuals process and express grief is also different. For many family caregivers, caring for a loved one can take up a significant amount of time, energy, and attention. One type of grief caregivers may not recognize or even know about is anticipatory grief. Anticipatory grief can occur when caring for someone over a prolonged period of time, and caregivers start to grieve for their loved one before they pass away (Family Caregiver Alliance, n.d).
What is Anticipatory Grief?
Anticipatory grief is a normal process, even though it is not discussed as much as grief after a death (Whitley, 2020). Anticipatory grief can be experienced while caring for someone whose abilities change. These changes can range from dietary restrictions to decreased mobility to cognitive changes. Caregivers have to adjust to these changes and may grieve the loss of a loved one’s previous self. Caregivers may also experience more personal losses such as loss of control, independence, family harmony, and more (Family Caregiver Alliance, n.d). Frequently facing these losses and anticipating the loss at the end of life can be just as difficult to experience as grief after a death. Again, anticipatory grief is a normal experience that results from the anticipation of loss.
Anticipatory grief is believed to occur in stages, generally beginning with shock about the anticipated loss, then denying the reality of the loss, and eventually acceptance. Thus, anticipatory grief changes over time and is a process for caregivers to adapt to the patient’s illness and potential death (Toyama & Honda, 2016). It is important to identify the feelings associated with anticipatory grief to avoid the physical and emotional issues grief can cause, such as sadness, anger, depression, and sleeplessness (Family Caregiver Alliance, n.d). Anticipatory grief is associated with higher levels of anger, loss of emotional control, and irregular grief responses (Toyama & Honda, 2016). Therefore, noticing and identifying anticipatory grief can help caregivers constructively face it and continue to provide quality care to loved ones.
Signs of Anticipatory Grief
Anticipatory grief can present itself in the following ways:
Scattered Thoughts (Hodgson, 2015)
- Your thoughts may be all over the place, thinking about the past and present with your loved one as well as a future without them.
- You may appear to be just distracted, but this is one sign of anticipatory grieving.
Lost Sense of Time (Hodgson, 2015)
- When you care for someone for a prolonged period of time, you may be constantly on alert because you never know exactly when the end will come. Your sense of time may be distorted through feelings of not having enough time in the day to balance caregiving responsibilities and other aspects of life. Alternatively, you may feel like there is no endpoint to the caregiving journey.
- While providing care, each day is full of uncompleted loss. Your loved one is still around, but the anticipatory grief can amplify feelings of ongoing grief.
- Waiting for someone’s passing can prolong anticipatory grief while also putting other aspects of your life on hold.
Suspense and Fear (Hodgson, 2015)
- Fearing misunderstandings from others, you may not talk about your anticipatory grief because it is a concept they may not be familiar with.
- You keep your feelings to yourself, letting worry, uncertainty, and sadness fill you.
Worrying About the Future (Whitley, 2020)
- You may become increasingly concerned for your loved one and your future without them.
- Similarly, you may wonder what your loved one’s death will be like.
Other Feelings (Whitley, 2020)
- Other emotions associated with grief include anger, anxiety, depression, fatigue, guilt, and loneliness.
- Grief may also present itself through a desire to talk, emotional numbness, and poor concentration or forgetfulness.
Coping with Anticipatory Grief
While anticipatory grief may be difficult to deal with, it may also be a way to emotionally prepare for the loss of a loved one. Identifying and understanding anticipatory grief can help caregivers cope with the grief and losses of caring for a loved one.
- Identify Losses (Family Caregiver Alliance, n.d)
- Losses associated with loved one:
- Decreased mobility, cognitive decline, memory loss, etc.
- Personal losses:
- Control, free time, financial stability, etc.
- Losses associated with loved one:
- Identify Feelings (Family Caregiver Alliance, n.d)
- Recognize the feelings associated with the losses.
- These feelings can include sadness, guilt, shame, regret, and anger.
- Remember that these feelings are normal.
- Allow Yourself to Grieve (Family Caregiver Alliance, n.d).
- Grieve these losses and express your feelings.
- Doing this can help decrease the intensity of feelings associated with loss. In turn, this can create fewer angry outbursts and feelings of hopelessness.
- Suppressing negative emotions is not a helpful solution. Although anticipatory grief is difficult to deal with, it can also provide you with the opportunity to spend more time with your loved ones and prepare to say goodbye.
- Express Your Feelings (Family Caregiver Alliance, n.d)
- Find a way to channel your feelings. Finding an outlet for your feelings such as talking with family, friends, counselors, or spiritual advisors can help.
- Personal hobbies such as meditation, relaxation, prayer, support groups, and art are some methods to let go of intense feelings to better cope with grief.
- Take Care of Yourself (Whitley, 2020)
- Minimize the stress of anticipatory grief by taking care of your physical and mental health.
- Exercise regularly, eat a well-balanced diet, and get enough sleep each night.
- Join a support group to learn how others have coped with anticipatory grief.
- Spend time with family and the care recipient. Enjoy the time you have together.
Similar to traditional grief, anticipatory grief is a process, and everyone experiences it differently. As a caregiver, it is important to be able to identify anticipatory grief in order to constructively cope with it. Recognize feelings of anger, anxiety, fear, guilt, and sadness. Understanding that there is a name for these experiences and that it is not a unique phenomenon may help normalize these feelings of grief. Allow yourself to adjust to and grieve the changes or losses associated with caring for a loved one. Expressing your feelings, grieving, and taking care of yourself are helpful tools to cope with anticipatory grief.
Family Caregiver Alliance. (n.d.). Grief and Loss. Retrieved from https://www.caregiver.org/resource/grief-and-loss/
Hodgson, H. (2015). Why is anticipatory grief so powerful? Retrieved from https://thecaregiverspace.org/anticipatory-grief-powerful/
Toyama, H. & Honda, A. (2016). Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home. Global qualitative nursing research, 3, 2333393616682549. https://doi.org/10.1177/2333393616682549
Whitley, M. (2020). Anticipatory Grief: Learning the Signs and How to Cope. Retrieved from https://www.aplaceformom.com/caregiver-resources/articles/anticipatory-grief