Caregiver Abuse: Is It Caused By Illness or Personality?

Abusive father

“How do I separate my loved one’s old abusive behaviors from those caused by his illness?” It’s a question I often hear from caregivers and one that’s difficult to answer definitively. Yet it routinely impacts relationships between caregivers and their loved ones.

Abuse Occurring in Short-Term Caregiving

During short-term caregiving, abusive behaviors are transient and usually subside when the illness abates, or caregiving responsibilities end.

For example, when my wife had a stroke and my daughter and I cared for her, the changes I witnessed were all related to the effects of the stroke: short-term memory loss, frustration with the inability to recover words, emotional instability, and confusion.

Within three months most of these problems were gone, since her recovery was almost complete. As a speech-language pathologist, I realized the new behaviors did not arise from the personality I had known for 40 years. I anticipated that the aberrant behaviors would soon disappear and the changes in her personality were temporary. I wasn’t disappointed. By the end of three months, the old and loving Wendy had returned.

Long-Term Caregiving and Abuse

Much of caregiving is long-term, and chronic illnesses can result in life-changing losses. Unfortunately, the magnitude of a loss is often thought of in terms of someone else’s beliefs of what’s important.

An active person might think that no longer being able to walk is tragic, but the inability to knit inconsequential. Yet for someone with rheumatoid arthritis whose entire life centered around knitting, the loss is far more devastating than being unable to walk.

Many less than skillful behaviors develop because of losses.

The compassion shown by a loved one may have disappeared after the illness made it difficult for her to maintain independence or engage in cherished activities. The joviality that lighted your day may have been replaced by ingratitude, depression, or a host of other less than pleasant characteristics.

Much of what you appreciated about your loved one may have disappeared (e.g., expressing her love for you). Many of the personality changes or unskillful behaviors may be directly related to loss. It can be something physical, emotional, or psychological. For example, a loved one who was always concerned about the welfare of his family may appear uninterested in their lives and problems after experiencing a debilitating condition.

How we view ourselves—our identity—is based on what we do, the roles we play, activities we enjoy, affiliations we have, the values that structure our lives, our abilities, and relationships. Change one feature and the person who has always expressed her love for you may have become someone who doesn’t appreciate the sacrifices you have made.

When a loved one loses a meaningful part of life, their self-perception and place in the world may change. And with those losses can come behaviors you may not understand, including ones that are abusive.

A Tragic Story: Long-Term Personality Issues and Problems Arising from New Losses

Life isn’t quite so simple that we can differentiate abuse stemming from long-term personality issues from those emanating from the illness. For example, When I was still doing hospice volunteer work I was assigned to a man with congestive heart failure. His condition had been progressing over many years, eventually making it difficult for him to function on his own. As his heart lost its ability to provide adequate oxygen to his muscles, his daily walks, which gave him great pleasure, now resulted in a shortness of breath. During the first year after his diagnosis, the walks had to stop.

By the second year, even minimal movement within his apartment exhausted him. As his disease progressed, independence became more difficult. He prided himself his entire life as never needing help from anyone. Self-reliance was a cherished attribute. With little funds and a minimal support system, he had to rely on his daughter for basic needs, such as food preparation, transportation, and the cleanliness of his apartment. His physician made it clear that even the limited independence he still had would shortly disappear.

Initially, his daughter carved out a few hours a week to help her father. But gradually, the time necessary to care for him increased, severely restricting her social life. By the second year of her caregiving, it was impossible to provide care for him and maintain a full-time job. They had never been close, and the strain between them increased when her mother died 10 years ago. Yet, she gave up her career to become a full-time caregiver since no other family members were alive and neither she nor her father had sufficient funds to hire professional caregivers.

During the third year of his illness, he became eligible for home hospice care after a doctor certified he had less than six months to live. I was assigned to him as a bedside volunteer to provide three hours of respite to his daughter each week. It would give her time to shop for her weekly supplies, take care of errands, and spend precious time with friends. Without the respite time the hospice provided, she would have been completely isolated, caring for a person who during his best times, was disagreeable.

On my first visit, I witnessed my patient’s verbal abuse of his daughter. Since I didn’t know their history, I wasn’t sure if what I was witnessing was due to the psychological effects of the illness or something long standing. He criticized her cleaning ability, placement of objects, cooking, and commitment to him. Throughout his tirade, his daughter remained expressionless, nodding her head and silently preparing to escape his presence for the next three hours.

The same type of interactions and verbal abuse occurred during the next few visits. When she left at the beginning of my fifth visit he went through a litany of complaints, not once acknowledging what his daughter had sacrificed because of his needs. I knew that without her compassion, he would have been placed by the state in a care facility for the indigent.

Every week for three hours I watched television with him. It was the only activity he wanted to do in his smoke-filled apartment. Despite being told smoking would shorten his life, he persisted, lighting a new cigarette before the last one was finished. I wondered how was it possible for his daughter—a non-smoker—to tolerate the constant cloud of smoke that filled the apartment.

On all of my previous visits, his daughter would return 10 to 15 minutes before the end of my three-hour shift. I would help her put away supplies and give her an update on her father’s condition. I became concerned when the three-hour period elapsed and she didn’t return.

When I mentioned to my patient she was late, he didn’t show concern, but rather anger that his daughter could be so inconsiderate. “That’s just like her,” he said. “She’s never shown any regard for other people.” The harangue about his daughter’s irresponsibility continued until it was time to light up another cigarette and watch a re-run of Law and Order.

I had her cell phone number and called. She didn’t answer so I left a short message. “Hi Jane, it’s 30 minutes past the time when my shift was supposed to end. I can stay longer if you need me too, but I need to know when you’ll return. Please call as soon as possible.”

After an hour, I called the hospice office and asked if they heard from Jane. Possibly she had a car problem or something that delayed her. They had not heard anything. According to the hospice representative, this was something that rarely occurred since most people were appreciative of the services they were receiving from hospice.

“You’re under no obligation to stay,” she said. “Our patient is not in any imminent danger if you leave. But if you want to stay longer, just call us when you leave or his daughter returns. We’ll start inquiring at hospitals and with the police about her.”  I decided to remain.

When the patient realized it was almost two hours past the time when his daughter should have returned, he apologized and went on another rant about his daughter’s inconsideration. Five hours after I arrived, she returned and apologized for being late. She didn’t offer any explanation nor did I ask for one. But her eyes were red and she sniffled into a handkerchief.

Instead of showing concern, her father was furious, assassinating her character, ticking off her negative personality faults, and past violations of his trust. He even implied she was the cause of his heart condition. During my eight years of hospice volunteering, I never heard any patient be so abusive to their family caregiver.

During his verbal abuse, she remained silent, eventually apologizing to me. When I was about to leave, she asked if she could speak with me outside the apartment. She explained it was becoming more difficult to tolerate her father’s emotionally abusive behaviors. He never had been a loving parent, but his ingratitude and demeaning words had gotten so bad she decided to abandon him without telling anyone.

She had packed a few possessions and was prepared to drive north from San Francisco to rural Washington where she would disappear until her father’s death. After crossing the Golden Gate Bridge, guilt took over, and she decided to return.

Look at Your Loved One's History

From our conversation about her family history, I felt the behaviors her father exhibited in my presence had a foundation in their history. The intensity of his abusive behaviors may have been related to his illness, but not their origins. This was a nasty person before his illness and became more so as his life changed.

After consulting with hospice staff and an attorney, the daughter took the necessary steps to withdraw from caring for her father. She left for Washington, he was placed in a facility for indignant patients and died three months later.

Losses Exaggerate Negative Behaviors

Losing something that gave meaning to life changes personalities. It can result in someone becoming kinder, more compassionate, or more grateful. But often as it was in the case with my client, disagreeable traits are enhanced. The wonderful parts of a loved one’s personality can be replaced with unexpected and disappointing behaviors and words.

How to Differentiate Between Illness-Based Abusiveness and Prior Unskillful Ones

There aren’t any easy ways of pulling apart the two. I’m sure you would have wanted to read, “Here are x number of ways of determining if abusive behaviors are coming from the illness or a loved one’s personality.” Unfortunately, separating them doesn’t come about by adhering to lists.

Often, it involves a comparative exercise: “Would these behaviors have been present before she was ill?” In the case of my patient, verbal abuse was present throughout his relationship with his daughter. Was it as intense? No. That appeared to be illness-related. As someone who treasured independence, having to rely on someone he didn’t have a high opinion of, was troubling.

While the above suggestion may offer a path for distinguishing between personality-related abusiveness and those related to the illness, it doesn’t provide help for stopping it. While the simplest approach is one my patient’s daughter eventually chose—leaving, it’s not something that’s viable for most caregivers.

So what’s the solution? People under stress (i.e., the person being cared for) have difficulty hearing accusations (e.g., “You aren’t appreciative of what I’ve given up for you.”) without becoming defensive (e.g., “How can you make that claim when I’m suffering so much?”) A better approach is factually describing how their behaviors make you feel (e.g., “When you don’t say anything about the effort I made to make your favorite dinner, it makes me feel you don’t appreciate what I’m doing.) At times, understanding and not compassion is the most realistic goal of caregiving.

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