Facing Loss and the End of the Caregiver Role
Diane Breslow, MSW, LCSW
Throughout the course of one’ s life, every loss helps prepare us for subsequent losses. Because of the progressive nature of PSP, CBD, MSA, and other neurodegenerative diseases, caregivers and others close to the patient have already experienced and grieved the step-by-step loss of the person they knew and loved. Yet, the death of the person you were caring for brings with it an additional loss and subsequent life transition: the end of your caregiver role and a period of mourning for that role. It is the beginning of a new and uncharted path in your own life.
The purpose of this article is to help you with the grieving process and to map a new course for yourself. Grief is not necessarily predictable nor the same for everyone. Every person moves through the series of steps at their own pace. Therefore, the suggestions contained here are meant to be general guidelines.
Grief
The grieving process is unique to each individual, and its so-called stages are not sequential or linear. Nevertheless, each person is likely to pass through similar phases of grief and to experience common issues and emotions. In 1969, Elisabeth Kubler Ross was the first of many subsequent theorists to posit a framework for the stages of grief.
Her theory is comprised of five stages:
• Denial
• Anger
• Bargaining
• Depression
• Acceptance
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A more recent theory, The Grief Cycle, posits the emotions of grief in a dynamic circle, rather than in stages( see the book by Shelly O’ Brian listed with the Resources at the end of this chapter), as follows:
• Shock: Numbness, disbelief, inability to think straight
• Protest: Acknowledging the deep sorrow; consequently feeling anger, guilt, sadness, fear of what’ s next, yearning. Feelings, such as anger, at the person who died or at those who tried to help them are normal. Guilt is also normal: for example, guilt about the death of your loved one, guilt that you have survived, or guilt that you feel a sense of relief that your caregiving duties are over.
• Feeling of disorganization: Depression, loneliness, anxiety, confusion( perhaps because you feel relief that the suffering has ended not only for the one you cared for but for yourself as well), loss of identity, vulnerability
• Reorganization and redefining of self: A gradual return to“ normal” functioning with new habits and routines but still feeling“ not quite right”
Give yourself permission to experience and feel these emotions, and their fluctuations. Expect“ anniversary” grief reactions on the dates of memorable occasions and holidays. With that in mind, mentally allow yourself to grieve for at least one year of seasons, holidays, and anniversary events without your loved one. Even consider planning for anniversary reactions. For example, think about what would feel right for you on a particular occasion. Let your family and friends know this, and ask them to honor your wishes. Do as much, or as little, as you can handle and allow yourself to be flexible and change plans if you feel you need to. Anniversary times are stressful enough as is, and grief can intensify that feeling of stress.