The Spousal Caregiver: Caregiver Journey

The Well Spouse® Association (support for spousal caregivers) has identified three main stages of the long journey of caring for a spouse with a chronic illness. Of course, every caregiver’s journey is unique, but many of the major issues and coping mechanisms are more universal.

The first stage is called the heroic: after a diagnosis, the caregiver is determined to do whatever is possible to either cure the ill spouse or slow down the decline of a degenerative illness. There is some optimism and a feeling that maybe in this case, a way will be found to conquer the illness. The spouse who is becoming a caregiver determines to “climb every mountain and ford every stream” to find a way to stop the illness.

However, as the illness progresses and more care needs to be given to the ill spouse for months and years … at some point, the caregiver begins to feel fatigue, despair, and a fear that they cannot continue on this difficult path. This is called the ambivalent stage, which is in a way a time of crisis. Frustration builds as the ill spouse’s condition worsens to the point where the care demands become overwhelming. Sometimes the illness stabilizes at a certain level, but requires so much day-to-day care that the caregiver becomes drastically worn down. The caregiver begins to doubt the care plan and feels life slipping out of control.

At this point, the caregiver needs to reassess the situation and figure out how to make daily life more livable. Do you need to hire a home health aide for your spouse? Can you get help from family, friends or neighbors? Do you need to consider a nursing home? Do you need to acquire handicap items, like walkers, wheelchair, grab bars, stair lifts, etc.? How about your own care: Do you need medical care? Need to speak with a therapist to deal with your burdensome emotions? Do you need to find new recreational outlets for yourself? These additions to your life probably will happen gradually—not all at once. It is never easy to make these adjustments, but the proper changes should lead to the third stage, which is somewhat more stable: the new normal.

In the new normal stage, your life is probably still far from “normal,” but you feel that what has gotten out of control has settled down to a workable daily routine. You’ve gained some acceptance of the illness, and acceptance of the limits of how much you can realistically do for your ill spouse. Perhaps you can feel gratefulness for what you and your ill spouse still have, and not be just focused on what you have lost.

These three stages are not always clearly demarcated, and you will likely cycle through the different stages as the situation changes: if a new drug or therapy appears that may help your ill spouse, you may again feel heroically optimistic; but if your ill spouse has another decline or setback, you may be back in the ambivalent crisis stage, needing to make yet more adjustments to get back to the new normal.

Caring for a spouse with a long-term, chronic illness or disability will never really be “normal” as we think of it; but as you go through the most stressful trials and mourn what you have lost, you also can gain a new appreciation for the simplest pleasures of life wherever you can find them.

**Coming next: How Illness Challenges the Marriage Relationship

About the Author

Terri Corcoran lives in Falls Church, Virginia, and has been a full-time caregiver for her husband Vince since 2004. Vince is severely disabled physically and mentally by the genetic condition Fragile X-Associated Tremor Ataxia Syndrome (FXTAS).
Terri is on the Board of Directors of the Well Spouse® Association (www.wellspouse.org), which offers support and resources for spousal caregivers.

She also serves as the association’s PR chairperson and the editor of their quarterly newsletter Mainstay. She has published articles, and has been interviewed for magazine articles and on radio shows about FXTAS and the unique challenges of spousal caregiving.

Although not formally trained in caregiving, Terri has, by necessity, become well-educated in the trials of family caregivers.