Generally, the caregiver role emerges slowly from a role that existed before (such as a spouse, child, sibling, parent, friend, neighbour, etc.) (Orzeck, 2016). That role was part of a relationship between two people where there was an initial balance of roles and responsibilities. That balance changes when one person in the relationship needs care. As that person requires more and more support (an increase in the quantity and intensity of care), the other may take on these care tasks as part of their responsibilities.
In some cases, the level of need remains the same but can last many years, as with a chronic condition. These shifts in the relationship also impact the personal identity of the caregiver and the care recipient.
However, before considering the phases of caregiving, there are a few key points to remember.
- It is important to recognize that your experience is unique, as unique as the relationship you have with that person. Even if you have had experiences with caregiving and with death in the past, the particular circumstances of this caregiving role and relationship are different. Comparing yourself to other people is often not representative of your experience, and may be unhelpful.
- The caregiving trajectory can begin slowly, however, it can also begin very suddenly. In situations where there is a sudden change in a person’s health condition (such as a stroke, an injury, an accident, or an infant born with a life-limiting condition), one can be very rapidly thrust into a caregiving role. While the earlier phases described below may not apply in these cases, the impact of caregiving on the caregiver’s identity and on post-caregiving bereavement are still relevant.
In order to try and make sense of the role and identity changes that a caregiver might experience, it may be helpful to consider the caregiving trajectory in phases (based on Montgomery & Kosloski, 2012). These phases are not unidirectional, meaning a person can move between phases in either direction depending on their circumstances, and they are not time limited. There is usually a significant amount of stress for the caregiver due to the new and unknown aspects of change. It is important to remember that although this representation can illustrate the progression of the impact of caregiving, it may not be representative of your experience.
Figure 1. Phases of the caregiving trajectory
Phase 1:
A partner, child, sibling, friend, etc. begins to help the other with some tasks that were not initially part of their role. The shift in responsibility for these tasks leads to minor changes in the balance of roles and relationships. Examples can include giving the person reminders of daily activities, calling them to check-in more frequently, accompanying them to the occasional medical appointment, etc. Since these tasks represent small changes, caregivers likely do not recognize this new caregiving role yet. They retain their main identity as the partner, child, sibling, or friend in the relationship, with the caregiving only representing a small slice of their role (see figure 1).
Phase 2:
The caregiver (partner, child, sibling, friend, etc.) begins to take on more tasks that are beyond their regular scope of responsibilities. There is a larger shift in the balance of roles and responsibilities between the two people. Examples of this phase can include organizing and coordinating health care services, grocery shopping, etc.
At this point, the caregiver may begin to recognize the changed reality and their new caregiver role, but they still maintain their regular identity as the partner, child, sibling, or friend.
Phase 3:
The caregiver (partner, child, sibling, friend, etc.) is now actively involved in the caregiving role as the needs of the other increase. This requires a much larger time and energy commitment from the caregiver and there is a noticeable shift in the balance of roles and responsibilities in the relationship. Examples of this phase can include doing some household chores, preparing meals, continued coordination of health care, help with managing finances, etc. This caregiver role often takes time away from the person’s other roles, hobbies, and relationships, influencing their identity significantly.
Phase 4:
At this point, caregiving is a significant commitment due to the intensity and quantity of the care recipient’s needs. Caregiving often becomes the caregiver’s main role and identity because of how consuming it is physically, mentally, emotionally, socially, and even financially (see figure 1). Examples of this phase can include preparing meals, doing all household chores, general home maintenance, managing their finances, helping the person with dressing, showering, toileting, eating, mobility, etc.
Phase 5:
This phase is when the caregiver is no longer responsible for the care recipient’s care anymore because of a change in the situation. In some instances, this change might be a move to a residential care setting or facility. However, placement in a care facility does not always lead to the caregiver feeling relieved of their caregiver role or responsibilities.
Another change that can lead to the caregiver no longer being responsible for care anymore is the death of the care recipient. This change can be a shift back to the initial role that the caregiver had as a partner, child, sibling, friend, neighbour, etc. of the person they were caring for. This is when the post-caregiving phase begins.
Post-caregiving:
Post-caregiving refers to the period after which the provision of care has ended. This can be due to the death of the care recipient or other life circumstances (such as a move to a care facility, or a change in circumstances). This website is focused specifically on post-caregiving, because caregivers continue to be impacted by their role within and beyond the active caregiving phase.
Many people wrongly assume that the needs of the caregiver disappear after the death and they can now ‘move on’. In reality, caregivers continue to require support. Bereavement and grief are also different for caregivers compared to people who were not in a caregiving role. Post-caregiving is an important part of the caregiving trajectory and should be considered as such.
What have you learned about post-caregiving that you did not know before?
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References
Eifert, E. K., Adams, R., Dudley, W., & Perko, M. (2015). Family caregiver identity: A literature review. American Journal of Health Education, 46(6), 357-367. https://doi.org/10.1080/19325037.2015.1099482
Montgomery, R. J., & Kosloski, K. D. (2012). Pathways to a caregiver identity and implications for support services. In Caregiving across the lifespan: Research• practice• policy (pp. 131-156). New York, NY: Springer New York. https://doi.org/10.1007/978-1-4614-5553-0_8
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