Elder Abuse Is Easy to Miss

People are living longer in their own homes outside of nursing homes or other institutional settings, which means that at some point each of us is likely to be a caregiver or looking for continuing health care for a loved one or ourselves.

Costs can be staggering. Finding reliable, consistent and safe care is often a matter of luck. Indeed, family members and in-home professionals — people who are most likely to be trusted — are responsible for most elder abuse, according to the National Council on Aging.

The problem is poised to grow as more Americans live longer and want to live at home. U.S. Census Bureau data says one in six Americans were over the age of 65 in 2020. More than 88% of older adults live in their own homes , says the the Joint Center for Housing Studies of Harvard, and almost all of them want to stay at home, AARP surveys have found.

The National Center on Caregiving has estimated that women make up about two-thirds of the unpaid and paid caregivers in this country. The financial, physical and emotional toll is so well hidden that often the caregivers themselves don't realize what's happening: how they let their own lives become circumscribed by their caregiving duties, quitting their jobs, not keeping their own doctors' appointments, losing or gaining weight.

When my husband was in the last months of his life, he said: "What a terrible burden I've put on you." I answered truthfully, I believed, that I'd never felt it as a burden.

Yet I lost over 15 pounds during that time and haven't regained it. I woke several times every night then to check on him, never sleeping through. Though Lou died over six months ago, my sleep pattern hasn't changed. I am exhausted much of the time, only now beginning to admit to the physical and emotional cost.

For some caregivers, paid help is financially impossible. Others discover that most aides you can hire are woefully undertrained . Most have no particular background that qualifies them. Many are well meaning, some are remarkably efficient, but there are some who abuse those they're supposed to care for.

The Centers for Disease Control has concluded that this national issue is serious, underestimated and "experienced by 1 in 10 people aged 60 and older." That means that every year "hundreds of thousands of adults over the age of 60 are abused, neglected, or financially exploited," according to another government agency, the National Institute on Aging.

The American Psychiatric Association reports that elder abuse worsened during the pandemic. Abuse can take many forms, financial to physical to sexual. When I first broached the subject, I was concentrating on psychological abuse and so I believed it would be fairly straightforward to outline the traps:

• Look for instances when the elder adult is dependent on one person for everything.

• Look for signs that there is discomfort of some sort.

While helpful, these don't begin to home in on what some caregivers actually face. My friend Adam (all names in this article have been changed to protect individuals' privacy) has been caring for his wife for nearly a decade, ever since she began to show signs of cognitive decline.

Now Adam's wife doesn't recognize him, so he is emotionally alone with someone who is physically well, but mentally unresponsive. He occasionally screams at her, though he knows it's useless. He admits to sometimes treating her disrespectfully.

He is someone who cares, who loves his wife and who wants to do only good, yet he feels helpless, not trusting to put her "somewhere with strangers." Adam doesn't intend to abuse his wife, yet he is strained to the breaking point and sometimes does.

It is easier to identify abuse when it occurs outside the home. Someone I will call Jana told me that when her mother Betty was in an assisted living center, she was found twice on the floor. Apparently, the side rails of the hospital bed hadn't been put up. Betty had fallen out of the bed and left there. Jana got her mother out of that unsafe situation, but she hadn't been able to prevent what happened.

Where there is consistent abuse, once it is identified, there are resources. But emotional or psychological abuse usually happens in private. The National Center on Elder Abuse (NCEA) reports that "psychological abuse is insidious and not readily observable by third parties, since there may be little physical evidence."

Then, too, there are gray areas of cultural differences that develop into a "pattern of psychological mistreatment." The NCEA emphasizes that it isn't the act that should be seen as defining the mistreatment but, rather, the effect on the older adult. Also, that "disrespect is central to psychological abuse."

According to Ann Steffan, a professor in the Department of Psychological Sciences at the University of Missouri-St. Louis, it is important to remember that "elder abuse is all about the power differential."

Where the trusted family member or health aide controls the older person, treating the older adult like an inferior, not taking desires seriously — that's evidence of psychological abuse. Even when seen, it's not easy to identify in the moment.

My husband was in home hospice for the last months of his life. He was declining physically. Doctors had diagnosed his illness as carcinoma with unknown primary, a rare disease in which cancer cells are found in the body but the source of the cancer is not known. In the last weeks, we needed 24/7 help to assist him and to keep him from falling.

We were dealing with three health aide agencies, hoping that one or the other would be able to cover upcoming shifts. Continuity of care is a moving target. There's a constant rotation of staff in this low-paying service industry. Since the pandemic, every hospital, every agency, has been stretched thin. Many qualified nurses and health aides have left the field. My husband's experience illustrates the results.

My husband was still able to get to the bathroom with some assistance, but an imposing new aide said she would bathe him in bed. I told her that the other aides had taken him into the bathroom. She didn't argue. But when I returned, she was sponge-bathing him in bed. When she washed his privates, he grimaced, but the moment passed quickly.

When she walked away, Lou asked: "What's this one's name?" He seemed worried and I asked what was wrong. "She's disrespectful," he whispered. "She won't be back," I comforted him. "Just get through tonight."

During this time, we had a spell of very warm days and evenings and then, suddenly, it turned cold, well below 50 degrees outside. I woke about 4 a.m. one night and went to check on my husband. Imagine my shock to find every window open in the living room and dining area, where the hospice-supplied hospital bed was. My husband was lying on the bed, naked and uncovered.

"It's freezing in here!" I cried out. "Why are the windows open?"

"I was hot," was the aide's answer.

I ran from window to window, closing all of them. Then I covered my husband went to the other room and called the agency's 24-hour number. "I want her out of here," I said. "Please send someone else as soon as you can."

Lou briefly rallied the next morning, but he died later that day. Did the aide hasten his death? I believe she did.

After the shock of actually losing Lou, and wishing I could have done more for him, I called the agency and repeated what I said that night on the phone: "This woman should not be permitted to deliver care." I hope my warning was taken seriously.

I protected my beloved as best I could. But even the most attentive caregiver is no match for a practiced abuser. When the aide insisted on sponge-bathing Lou instead of taking him to the bathroom as he desired, what didn't compute is how she had infantilized Lou, taken away his dignity and demonstrated to him that I wouldn't always be there to protect him. I missed that this was a form of abuse.

When she washed his genitals roughly, the event was over almost before it began. He hadn't known that I was nearby, that he could call out to me, and I couldn't know she had actually hurt him, that she was abusing him. She then demonstrated complete control by removing his covers and opening all the windows on a frigid night.

Elder abuse comes in many guises. Here are some of the signs to look for as you try to protect those you love:

• Does the caregiver downplay the needs of the older person, not responding to their wishes?

• Does the older person reflect that they don't feel respected? This government website provides some helpful definitions.

What amazed me going through the devastating last months with Lou was the presence of some remarkable people in what is a woefully underappreciated field. The day Lou died, the replacement aide stayed with me hours after her shift had ended, until the hospice nurse got to the apartment. I will always remember her caring and compassion.

One thing each of us can do is to advocate for government policies that cover both unpaid and paid caregiving. Unpaid caregivers — usually family members — should have, at minimum, paid leave from their jobs. Paid caregivers should be better compensated, so more people would seek out these positions. Good training should be legislated.

We also need to take a serious look at ageism, the discrimination faced by all of us as we age. My friend Clara loves her three sons, but she says once she turned 65, they began to treat her like a child, believing that she needed constant looking after, though she is both cognitively and physically fine.

According to the Gerontological Society of America we need to incorporate unbiased language principles and reframe how the public perceies aging. On a personal level, that means using language that is free of age bias, because words matter. Most importantly, we have to recognize that the older adults are not "they" but "us."

Every one of us, if we are fortunate enough to live into older age, will need a compassionate caregiver. Because what happens is about us, we can advocate for collective actions and policy-level solutions that can make a difference for all of us as we age.

As I grieve for my husband, I take comfort from a dream in which my father, gone for decades, gave me  some extraordinary advice. In my dream, I had regrets about decisions I'd made. But my father interrupted me: "No," he said. "In each instance, you made the right choice. You chose, based on the information you had at the time." Waves of relief washed over me as he repeated what he said.

We must treat our loved ones with respect and try to protect them as best we can. We can try to influence policy to make caregiving the respected path it should be, because some day we will all need compassionate caring. And we must be gentle with ourselves: We can only do our best.