Surviving Caregiver Guilt

Jacquelyn Benson, PhD

“I feel guilty about feeling guilty”

It has been almost eight months since my dad died of esophageal cancer. As a family caregiving researcher, I thought I was prepared for all the emotions. I realized there would be emotions both while actively caregiving and while mourning. But there is one emotion that took me by surprise—guilt. Surviving caregiver guilt has been a challenge.

Guilt surprised me not because it surfaced altogether, but because it was so relentless, pervasive, and powerful. In the last week of my Dad’s life he could barely do anything for himself. Guilt became the organizing principle of my being.

Forms of caregiver guilt

Guilt is actually quite prevalent in caregiving, and it indeed comes in many forms. Family caregivers can feel guilt for thinking they did not do enough to prevent the care recipient’s illness. Or they may feel guilt over wanting the caregiving to end so they can regain some control over their daily schedule. Hopeful that life might return to normal. There is guilt for being impatient with the care recipient, guilt for being too demanding, guilt for being too lenient. There is guilt for being bored with the monotony that often accompanies the daily grind of caregiving. Caregivers may experience guilt over feeling they may not have loved the care recipient enough when the recipient was healthy. That they did not spend enough quality time together, visit often enough, or say “I love you” enough. And the list goes on and on; rinse, repeat.

Guilt as a meta-emotion

Guilt even surfaces as a meta-emotion, which are emotions people have about their emotions—“guilt about feeling guilty,” for example. Yes, you read that right, you can feel bad about feeling bad. Talk about rinse, repeat.

Renee Thompson and her team of researchers from the Emotion and Mental Health Lab at Washington University study meta-emotions. They tell us  that meta-emotions are common and come in a variety of forms. You can feel good about feeling good.  Some also feel good about feeling bad. Finally, some feel bad about feeling good. But negative-negative meta-emotions, like feeling guilty about feeling guilty, are the most common type. These negative feelings are also found to be associated with greater feelings of depression.

Surviving caregiver guilt

Thankfully, there are strategies we can practice to manage our guilty feelings and mitigate those negative outcomes. These strategies also prevent greater physical or psychological distress from emerging—such as digestive issues, depression and anxiety.

  1. Recognize the feeling of guilt. Like other unrecognized negative emotions, unrecognized guilt can worsen one’s mental and physical health. Dr. Vicki Rackner,  University of Washington School of Medicine, suggests that it helps to name our feelings. This labeling may serve as a first step toward managing our feelings that cause us distress.
  2. Be kind to yourself. Once guilt is recognized, self-compassion can follow. Guilt in caregiving is normal. Caregivers should give themselves permission to feel guilt while also remembering that their feelings do not control their actions.
  3. Find the cause. To be able to relieve guilt, the root cause requires discovery. Guilt often surfaces because our choices are misaligned with our needs and values.
  4. Appreciate your guilt. Like other painful feelings, guilt is our body’s way of alerting us that something is wrong. Guilt propels us toward change that benefits our health and our relationships. Guilt, like grief, is love.
  5. Take action and change behaviors. It is important caregivers recognize their needs and identify which choices are causing their needs to go unmet. Once they can do this  they become empowered to change their behaviors. However, if the underlying cause cannot be changed, caregivers should resist the urge to suppress guilty emotions. Research demonstrates that emotion suppression is counterproductive.
  6. Apologize effectively. Psychologist Guy Winch suggests apologizing when we feel we have fallen short. This can be an extremely effective strategy for ridding ourselves of any accompanying guilt. Apologizing can be more difficult than it seems—learn about Winch’s “five ingredients of an effective apology.”
  7. Ask for help. Asking for both emotional and instrumental support can help caregivers feel less guilt, including less of that especially distressing meta-guilt. Sharing our feelings with others, especially our feelings about our feelings, can be healing. It can be helpful to talk to a trusted family member or friend who has personally experienced being a family caregiver. Peer-to-peer support groups have been found to be an invaluable resource for many active caregivers.

From guilt to love

Ultimately caregivers can manage negative emotions by learning to tolerate and understand them. One should be curious and flexible about the coping strategies they use. Over time, guilty feelings can resolve. The relentless, pervasive, and powerful feelings of guilt can change. The negatives will yield to more positive feelings and memories of the experience and the person.

Today, when I think about that last week of my Dad’s life, I am able to feel more positive. The guilt I had in the weeks and months that immediately followed his death is less. I no longer dwell on all the things I wish had happened differently. The most distressing details of his last days and hours are less vivid in my mind. Guilt, still present at times, no longer is the organizing principle of my being. Instead, guilt has given way to a far more relentless, pervasive, and powerful emotion—love.

About the author

Dr. Jacquelyn Benson is a founding faculty member of the Lab for Caregiving Innovation. As our resident family scientist, Dr. Benson shares with the lab her expertise in family structure and process in the context of caregiving.

Leave a Reply

Your email address will not be published. Required fields are marked *