Caregiver Anger, Guilt and Remorse

by: Stan Goldberg, Ph.D.

Every caregiver has been the recipient of at least one unprovoked outburst from a loved one. The hurtful experience is difficult to accept when the caregiver made a substantial sacrifice, one involving irreversible social and financial losses.

Choices and Regrets

Joyce, a mental health administrator, was married for forty years to a considerate man she loved. Mitch, who smoked for sixty years, developed Stage 4 lung cancer forcing him into an early retirement.

With an insufficient company health plan, no retirement program, and limited savings, the couple faced a crisis: where Mitch would receive care for the last six months of his life.

Medicare would cover all costs at a poorly rated nursing home facility, some costs at a mediocre facility, and few costs for 24/7 in-home care. Stand-alone hospice facilities did not exist in their area.

Losses and Personality Changes

Joyce faced a painful choice: place her husband in the poorly rated nursing facility since that was all they could afford or quit her job, take early retirement and care for Mitch until his death. She chose retirement. As Mitch’s condition deteriorated, the loving partner of forty years became an ungrateful, demanding patient who could not recognize Joyce’s sacrifices. She began feeling regret about her choice during these outbursts, followed by guilt.

People whose health deteriorate to a level requiring care experience substantial losses.

Mitch lost his job, social contacts, golf (his passion) and dreams of blissful years in a retirement community with Joyce. The “pre-lung cancer” Mitch was not the same person as the terminally-ill Mitch, who knew his life would be over in six months.

Losses change people in ways often misunderstood.

People who were kind, understanding, and compassionate, still have these qualities, but express them less often and with less intensity. Folks who were ornery their entire life, remain so, but have a little more intensity in their expression. I’m sure exceptions exist to my thirteen years of caregiving observations. Yes, some people regardless of their pre-illness life become more grateful, but expecting gratitude for everything you do can lead to disappointment and even burn-out.

Changing Identities

What I and other caregivers found helpful was not to take the anger or ingratitude personally of those for whom we care. Their losses overshadow the need for “good manners.” Yes, a husband should be grateful his wife eliminated most social contacts to care for him. A mother should be grateful her daughter moved back home to care for her. But what the husband should do may be overwhelmed by his fear of dying. The mother might find the expression of thanks unimportant compared with the acceptance of trashed retirement dreams.

Changes in identity occur as losses accumulate. Rarely are the changes positive. Life and interactions change when significant portions of a person’s identity are stripped away. The avid tennis player who anticipated her outing with friends is not the same person who sits in her wheelchair on Saturday wishing she was on the court.

The anger, ingratitude and criticism hurled at you by your loved one says more about his losses and needs than anything you did wrong, as was the case with a woman I counseled.

She and her husband had a wonderful life together for fifty years until the first signs of dementia appeared. The neurologist was blunt: his decline would be dramatic. Within a few months, the once compassionate husband became an angry, ungrateful spouse finding nothing positive in his wife’s caregiving efforts. She had professional caregivers help for a few hours a week although she could afford many more, believing nobody could care for her husband as well as she could.

She admitted feeling both angry and guilty when I counseled her. Angry because he didn’t appreciate her efforts. Guilty because she couldn’t meet his needs. These two emotions, anger and guilt, are common among caregivers and often result from not understanding how the changes in their loved one’s health affect interactions.

Anger and Guilt

Anger can stem from someone’s behavior or words. You think “If I were him, I wouldn’t act that way.” But the world of a healthy person and someone requiring care is different. Each produces its own set of perceptions often resulting in clashes. What seems obvious to a caregiver may be obscure to the person receiving care, and vice versa.

Guilt implies the caregiver should have the ability to meet a loved one’s needs. But should they? Some people believe only compassion and love are necessary for quality caregiving. While important, they alone aren’t sufficient but serve as a starting point.

Knowledge of how to provide care is obtained either through experience or written information. The intensive caregiving knowledge required by Joyce and the woman whose husband developed Alzheimer’s had no precedents in their lives. And when they assumed a caregiver role, the time available to read about the how’s of caregiving were limited.

How to Interpret Anger and Ingratitude

The next time you experience ingratitude or are the brunt of anger, don’t take the affront personally. Rather place yourself in your loved one’s position to grasp the significance of her loss. Try to imagine how your life would change if tomorrow you started experiencing the constant fatigue of congestive heart failure, the inability to communicate basic needs because of a stroke, the nausea resulting from chemotherapy or any of the hundreds of significant losses loved ones experience. You’ll come to understand unskillful words and behaviors are an expression of an identity’s disintegration. It’s not about you.