I was my mother’s caregiver for nine years, my twin grandchildren’s guardian/caregiver for seven years, and am my disabled husband’s caregiver now. I’ve had this role for two years and there are more years to come. As time passed, I became aware of the losses associated with caregiving. These are ambiguous losses—painful losses lacking clarity, closure, or the acknowledgement of others.

Lack of privacy is an example of ambiguous loss. If your loved lives with you, the loss of privacy was immediate. I understand this loss. My mother had stroke-induced dementia and lived with us for a month before she moved to assisted living. She followed me everywhere, so close I could feel her breath on my neck, and asked “What are you doing” constantly. Her closeness and question drove me nuts.

Pauline Boss, PhD, a University of Minnesota emeritus professor and psychotherapist in private practice, pioneered in research on ambiguous loss. She thinks there are two types of ambiguous loss, physical absence with psychological presence (as with a missing child), and physical presence with psychological absence, (as with Alzheimer’s disease).

As she explains in her book, Loss, Trauma, and Resilience, ambiguous losses lack clarity and generate conflicting emotions. “Ambiguity feeds ambivalence; ambivalence feeds the uncertainty about which action to follow, which decision to make, which role to play, or which task to perform,” she explains. (p. 144) What a mess.

You have many caregiving tasks and coping with ambiguous losses adds to your work load. What are some of your losses?

Loss of friends. Caregiving leaves you little time to be with your friends. Staying in touch with friends gets harder and harder, and this contributes to loneliness.

Loss of a social life. Before caregiving, you used to go to the movies, concerts, plays, and luncheons. Now you feel lucky to get to the grocery store.

Loss of flexibility. The never-ending demands of caregiving can squelch flexibility. Doing things on the spur of the moment is rare, if not impossible.

Loss of dreams. “I always wanted to go to Paris,” a long-term caregiver shared, “but my husband is in the third stage of Alzheimer’s and I can’t leave him.”

Loss of hope. Hope fades when dreams are cast aside. It’s hard to be enthusiastic about caregiving without hope. You may struggle to keep hope alive as your loved one’s health deteriorates.   

Loss of self. Ambiguous losses can make you feel like you’re caught in a vise, Pauline Boss notes in Loving Someone Who Has Dementia (p. 40) We can learn to view ambiguous losses positively, according to Boss, and she cites some positives of them. Ambiguous losses:   

• allow us to continue to hope
• offer new opportunities for adventure
• keep us observant and alert
• foster emotional and spiritual growth
• spark creativeness
• give us time to say good-bye
• enable us to learn more about ourselves.

When ambiguous losses get me down, I remember something I wrote for my book of affirmations for caregivers: Caregiving is love in action. Every day, every moment, every second we spend with a loved one is a blessing. We are sharing the miracle of life.