When a person takes on the role and responsibilities of caregiving, their entire life is affected. Sometimes, the relationship between the caregiver and care recipient can become unbalanced because of the level of dependency and need (Orzeck, 2016). In some cases, caregivers spend many years caring for someone who is in a vulnerable state and reorganize their lives to revolve around the caregiving role.
Research has shown that caregiving can have impacts on a person’s physical, emotional, and mental health (Bom et al., 2019). Depending on the situation, some caregivers also reduce or stop working or engaging with their social network to redirect their time and energy towards caregiving. Sometimes the withdrawal from their regular routine is out of exhaustion or self-preservation, and it can be a conscious decision or not. This withdrawal from their regular routines can increase social isolation, which can negatively impact their grief experience (Breen et al., 2020b).
Research also shows that the caregiving trajectory can change the caregiver’s identity in many ways that can be profound and sometimes irreversible (Orzeck, 2016). The person’s sense of purpose and meaning in life can become tied to the caregiving role. Depending on the circumstances, caregivers may have also already experienced [ambiguous loss] while the person they were taking care of was still alive, which refers to losses that are unclear or without closure (Boss, 2010).
Furthermore, the impacts of caregiving do not end when the care recipient dies. Post-caregiving refers to the period after which the provision of care has ended. The post-caregiving phase brings its own set of challenges that caregivers may face, including coming to terms with their losses, adapting to the new reality, and re-building their lives and identities. The caregiving role and identity can feel overwhelming in some cases and it can be very difficult for caregivers to adjust to the death.
The experiences of grief and bereavement are always difficult, highly personal, and different for everyone.
They are not predictable or time limited.
However, bereavement of a loved one is experienced differently by caregivers as opposed to people who were not involved in the caregiving component (Breen et al., 2020a).
In an Australian research study that compared the grief, quality of life (QoL), and general health of caregivers in relation to non-caregivers, the findings demonstrated a significant impact on the bereavement experience pre and post-death. Compared to non-caregivers, caregivers’ “grief while caring was comparable to that at 3–4 months post-death, and it took 9–10 months post-death for caregivers’ grief, QoL and general health to return to a normative standard.” (Breen et al., 2020a, p. 150-151) It can take much longer for a caregiver to adjust to the changed reality and rebuild their life because of all that they have experienced.
The loss of both the relationship with that person and the caregiver role can create a set of circumstances that impact grief. In addition, the intensity of caregiving and the withdrawal of the care teams when the care recipient’s file is closed after death can lead to the bereaved caregiver feeling alone.
It is also possible that bereaved caregivers may experience compounded losses due to the potentially numerous personal losses and sacrifices made over the caregiving trajectory.
“In post-caregiving, the loss of a loved one was combined with the loss of the caregiver’s daily sense of purpose and function, as well as the loss of the social network related to the caregiving.” (Orzeck, 2016, p. 155)
After having adjusted their lives partially or completely in order to care for their loved one, caregivers must then adjust again to a changed sense of self in bereavement. In some cases, this requires that the caregiver re-evaluates their roles and rebuilds the life they want to lead after the loss (Holtslander et al., 2017).
For caregivers who have spent a long time advocating for the care recipient within healthcare systems, the caregiver may have become used to focusing the attention on the needs of others. Unfortunately, this means that caregivers sometimes neglect their own needs (including medical check-ups and follow-up, and accessing support services for themselves). The caregiver may also have been viewed and treated by the healthcare teams as a proxy to the care recipient, not an individual with their own needs and experiences. These losses over time can make the challenges of bereavement more difficult.
Factors impacting bereavement
Of course, the experience of every caregiver is different and can be influenced by many factors. In a summary of research on the experiences of bereaved family caregivers, Holtslander et al. (2017) noted that the impact of caregiving on bereavement also varies depending on these factors:
- the type of relationship between the caregiver and care recipient
- the nature of the illness and death
- the nature of the caregiver’s good-bye to the care recipient
- the pre-planning for the loss
- the perception of ‘having done one’s best’
- the perceived satisfaction of experiences with health care staff throughout the
caregiving journey
Aspects of social identity, such as gender and sexual orientation, can also impact the bereavement experiences of the individual (Holtslander et al., 2017).
Overall, although grief and bereavement is challenging for everyone, the experience is different for caregivers as opposed to people who were not in a caregiving role. Because of this, caregivers may not always feel understood by others in general grief support services or groups. It is especially important for family members, friends, communities, and health and social service professionals to be aware of and sensitive to this difference in providing support to bereaved caregivers.
If you are a bereaved caregiver, it may also be important for you to recognize your unique experience with this grief. Know that you are not alone in feeling this way and there are resources available. Caregiver Grief Connexion was created to recognize the unique realities and experiences of bereaved caregivers, and our mission is to increase support through sharing knowledge, skills, and resources.
To learn about myths on caregiver grief, click here
To access resources for caregivers, families & friends, professionals and care providers, click here.
Has your bereavement experience felt different for you because you are a caregiver? Share your experience below:
This blog post was adapted from a report written by the CGC team titled Challenges Facing Bereaved English-Speaking Caregivers in Quebec: A Review of the Risks and Protective Factors for the OLMC. A report prepared for the Community Health & Social Services Network (2022).
References
Bom, J., Bakx, P., Schut, F., & Van Doorslaer, E. (2019). The impact of informal caregiving for older adults on the health of various types of caregivers: A systematic review. The Gerontologist, 59(5), e629-e642. https://doi.org/10.1093/geront/gny137
Boss, P. (2010). The trauma and complicated grief of ambiguous loss. Pastoral Psychology, 59(2), 137-145. https://doi.org/10.1007/s11089-009-0264-0
Breen, L. J., Aoun, S. M., O’Connor, M., Johnson, A. R., & Howting, D. (2020a). Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study. Palliative Medicine, 34(1), 145–154. https://doi.org/10.1177/0269216319880766
Breen, L. J., Kawashima, D., Joy, K., Cadell, S., Roth, D., Chow, A., & Macdonald, M. E. (2020b). Grief literacy: A call to action for compassionate communities. Death Studies, 46(2), 425–433. https://doi.org/10.1080/07481187.2020.1739780
Holtslander, L., Baxter, S., Mills, K., Bocking, S., Dadgostari, T., Duggleby, W. & Peacock, S. (2017). Honoring the voices of bereaved caregivers: A metasummary of qualitative research. BMC Palliative Care, 16(1), 1-18. https://doi.org/10.1186/s12904-017-0231-y
Orzeck, P. (2016). Identities in transition: Women caregivers in bereavement. Journal of social work in end-of-life & Palliative Care, 12(1-2), 145-161. https://doi.org/10.1080/15524256.2016.1165162