Stages of Caregiving

From the Spring 2000 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

Caregivers experience four clearly defined stages as they travel the caregiving path. These stages can be understood as "developmental tasks" in adapting to the role of caregiver. These stages may occur at the same time, or in any order, and may "recycle" themselves during the course of a caregiving relationship.


Surviving is what you do to keep going when you are feeling completely helpless. Surviving consists of coping: doing what has to be done and expending one's energy to just get by.


This is a time of acting, of moving forward from a reactive state of surviving. It is the beginning of a sense of control over emotions and your life; the awakening of a source of energy; a time for asking questions abut the goals, values, and priorities of your own life. Outer Searching asks, "What's wrong? Can it be fixed?" Inner Searching asks, "Why? Why him or her? Why me? Why us? What does this mean for me and for our lives?" Searching also involves seeking answers and interventions related to the illness or condition.

Settling In

This state is seeing the world for what it is and seeing yourself for who you are. It is moving beyond the intense emotions of surviving, feeling less of the sense of urgency or searching, and gaining a greater sense of control and balance in your daily life. Settling In is a time of relative equilibrium: you may not ever "forget" the reality your precarious time, but it can become a time of deepening, and more precious, moments in the relationship.


This final stage is a normal and necessary process in parent-child relationships. In a caregiving relationship, "letting go" by the caregiver may be especially difficult, with the caregiver unwilling, or unable, to experience any small separations, such as letting others help out in the caregiving and getting needed respite. However, it is necessary to avoid caregiver fatigue, and to allow the needy family member to retain or attain some level of independence.

The four stages are part of a normal process of adaptation. By understanding how they work, caregivers can better predict their emotions and reactions, and not think they are somehow "failing" when they feel a sudden rush of uncomfortable feelings. The stages help us see how we grow through the crises and hard times of our lives. The struggles and challenges of caregiving present great sorrows at times, but also opportunities for personal growth and competence.

NOTE: The MetLife Mature Market Institute offers five principles for caregivers facing difficult days while providing what surveys show is an average of 18 hours of assistance each week:

1. Don't feel guilty about occasional flashes of temper or thinking you are not doing enough; talk it through with an understanding family member or friend.

2. Explore community resources that can help ease the caregiving burden.

3. Take some time off to avoid fatigue and depression; maybe run a few errands.

4. Join a support group, often available at the local medical center.

5. Keep your own future intact. For a free copy of MetLife's "Caring for an Aging Loved One" brochure, call 800-638-5433.

Created and maintained by Renette Davis. Send comments to her by clicking here.

Created: July 4, 2000
Last updated: Dec. 6, 2010