Who Cares for the Caregiver?

People who care for their frail elderly loved ones can face the most challenging job of their lives. How do they sustain and replenish themselves in a role that inevitably involves decline and death?

Perhaps you recognize yourself in the following stories:

Barbara, a 50-year-old mother, has one child in high school and feels angry that her younger sisters don't help her with the care of their 85-year-old father, Don. Don lives in Barbara's home and she suspects that he relies on her more than he needs to, but overall she's happy to give him the emotional support her mother never did.

John, a 65-year-old semi-retired CPA, looked after his wife Pat for six years as she became progressively incapacitated due to a brain tumor. When John's own health began to fail, it became apparent that he needed to place Pat in a nursing home. He visits her daily, though she often shows little understanding of who he is. He feels sad and guilty about not being able to care for her himself. At times he feels as if he's already a widower and other times he wishes she would just "go quickly". These unsung heroes and heroines have a lot in common. Whether or not they are the primary caregiver, and whether they are caring for a souse, parent, sibling, partner or friend - the emotional impact and the difficulties they face are the same.

Common issues caregivers grapple with include:

Guilt - Caregivers often feel, "If only I had been better, Mom could still be at home with me." It's difficult to accept the powerlessness we feel when confronted with aging, disability and death. We may feel the need to be superhuman, "rise above it all," and focus only on the care-receivers' needs instead of our own.

Anger - In the face of the inevitability of death, we may feel overwhelmed, frustrated and angry at the world or at the declining person for leaving us. Often it's easier to vent our rage at doctors or other professionals who expertise fails to reverse the aging process.

Grief - Our society hides the reality of death and grief. We are urged to "put on a happy face" rather than allow ourselves to feel our loss and find our own way of marking a loved one's passing. As we age, our losses compound - from deaths of friends and family to loss of physical abilities, perceived attractiveness, jobs and roles. Today's losses often unearth sadness from earlier losses which went ungrieved.

Stress - People of the so-called "sandwich generation" are often involved in caregiving for an aging parent while raising children, working outside the home, and tending marriages. Being torn in many directions is stressful. Caregivers often suffer physical distress from caregiving. In fact, caregivers sometimes precede the care-receiver in death. Good self-care is essential for everyone in the caregiving relationship.

Unfinished business - At times of stress, individuals can often fall into old styles of coping or relating to one another which can interfere with effective communication and decision-making. For example, we may find ourselves in the "martyr" role, playing the "black sheep" or the "baby" of the family. By doing so, we may not be open to finding compromises, handling conflicts or offering support. It's important to work at healing old rifts in order to be more fully in the present and alert to opportunities to strengthen bonds.

The issues and reactions described above are natural in the caregiving process. Growth and freedom come when we identify and express our feelings to close friends and family members. If we bury these matters, they tend to erode our self-confidence, cause friction in the family and interfere with end-of-life decision-making.

At times it may seem impossible to take the step toward resolving old conflicts and misunderstandings. If so, it may be useful to seek help outside the family in support groups or counseling.

Support Groups

Caregiver support groups provide a forum for discussing difficult issues with people who are confronting the same challenges. This experience can help us feel less alone and provide ideas about how to cope with the daily caregiving role. It also gives us an opportunity to rediscover our own strengths.

Counseling

If you desire a deeper understanding of the issues that are perplexing you, you may benefit from counseling. Counseling gives you the opportunity to talk, in confidence, to a professional who can be both objective and understanding. With a counselor's help you may learn how to better share you emotions with friends and family. You may learn how to set limits on your offers to help and how to enlist support from the people around you. You may discover ways to empower the care-receiver to take a more active part in planning and decision-making. And finally, you may learn to express the sadness and grief that may lie beneath your anger, frustration and anxiety.

The caregiving role provides an opportunity to demonstrate our love and to come to know the care-receiver, ourselves and our family more intimately. As caregivers we have a second chance to transform and let go of old hurts, recall past joys and express to those close to us how they have touched our lives. The challenge of the task is to develop a healthy balance between our own and the other person's needs. In that way we become better caregivers to the other and, in turn, to ourselves.

Author: by Cindy Johnson, MA, Fall 1992
Reprinted from When You Care, Perspectives from 15 Years of the Caresharing Newsletter, with permission from Overlake Hospital Medical Center, Bellevue, WA. To subscribe to the Caresharing Newsletter call Senior Care at 425-688-5800 or go to www.overlakehospital.org/about/overlake.aspx