“If I don’t take action soon, I’m afraid I’ll hurt Mom,” sobbed Janice. For seven years, she had cared for her ninety-one-year-old mother at home. “Sometimes she’s just plain mean,” Janice continued. “When she needs her diaper changed, she screams and tries to hit me. If anyone else had to take care of her, they’d hit her back. To make matters worse, my husband is in a wheelchair from an accident at work, and now I have to do everything for him, too. He never liked the way Mom treated me, but now he wants her out of the house, and I can’t blame him. He constantly reminds me I take care of her for free while I’m taking her abuse. Last night was the worst. I really lost it and began yelling at Mom. If the good Lord hadn’t been with me, I would have hit her back and I don’t know if I could have stopped.”
I could feel the emotional struggle within her. “Janice,” I warned her, “you are expending tremendous physical and mental energy without rest or appreciation. You are a textbook example of caregiver burnout.”
Although caregiver burnout has undoubtedly been around for millennia, it was not defined in medical literature until recently. Perhaps not surprisingly, primary caregivers are as susceptible to depression and illness as the parents or spouses for whom they care.
The ages of caregivers range widely from thirty to ninety; they can be single, married, divorced, or widowed. While I have seen dependable granddaughters and reliable friends become caregivers, more commonly it is spouses, daughters, or daughters-in-law, in that order. With life expectancies inching higher every year, caregiving spouses are often in their eighties and nineties. When one parent dies, women traditionally provide much of the informal care for the remaining parent. Stunning statistics show that after the average American caregiver spends seventeen years raising a dependent child, she can expect to spend another eighteen caring for her dependent parent. Since women today often delay childbearing, there is an increased likelihood of an overlap between child rearing and caring for a parent.
Personality-wise, caregivers tend to be rescuing types. Often, they are sensitive, idealistic people attempting to manage all circumstances that involve their parents. Setting up unrealistic expectations for themselves, adult children may become so focused on meeting parents’ escalating needs that they lose sight of the fact that there is no way to control the aging process. The result is unrecognized stress. They may hesitate to ask for help, fearing refusal will result in an unpleasant family confrontation. If you find yourself experiencing the following symptoms for more than two weeks, be aware they may affect your caregiving abilities and you may be headed toward caregiver burnout.
Physical Signs
Frequent headaches
Back or neck pain
Muscle spasms
Poor personal hygiene
Chronic fatigue or lack of energy
Disrupted sleeping patterns, including nightmares
Heart palpitations
Digestive problems, such as diarrhea, constipation, or nausea
Susceptibility to illness
Decreased interest in sex
One third of all caregivers describe their own health as fair to poor. In other words, they give care at the expense of their own well-being. If you are a caregiver, have you experienced chronic low-grade aches and pains? Are you constantly trying new drugs or alternative medicines to get more energy? Listen to your body. It is important that you begin to address your own needs before you suffer a breakdown or a serious illness.
Emotional Signs
Impatience
Anger, irritability, or resentment
Sadness or unexplained crying episodes
Inability to experience joy or happiness
Anxiety or guilt
Apathy or isolation
Mood swings
Forgetfulness
Loss of a sense of control
Feelings of hopelessness or of being trapped
Inability to concentrate or make decisions
Suicidal thoughts or the urge to hurt others
Inability to face another day
Feelings of failure
Behavioral Signs
Overreacting to criticism
Increased use of nicotine, alcohol, or drugs
Decreased productivity at work
Loss of interest in hobbies
No time for friends
Overeating or not eating enough
Refusing to take vacations
All these symptoms of burnout are also classic signs of depression.
The Hidden Patient
Denise arrived at my office weary and ready to break. “My father-in-law still lives in his own home,” she explained, “but he’s ninety and getting weaker and more forgetful. My husband, Joe, is convinced that if he goes over to his dad’s house before and after work every day to do some chores and make sure he’s eating, everything will be okay. Well, last night when he got home from Pop’s, Joe was nauseated; then he got cold and clammy, like he was ready to faint. I drove him to the ER, where we sat for eight miserable hours before they admitted him with what they think is a bleeding ulcer.
“I haven’t slept for twenty-four hours,” she went on. “When I finally left the hospital at eight this morning, I stopped to check on Pop before I went home. I found him on the bathroom floor and I could hardly get him up. Now what am I supposed to do?” Denise began to cry. “If Joe couldn’t handle this, how can I? All three of us are going to end up in the hospital.”
The effects of the caregiver’s burden have been widely documented. By attempting to shoulder not only his own responsibilities, but also several of his father’s, Joe became the “hidden patient.” Since his expectations for the outcome of his dad’s continued care were unrealistic, Joe was experiencing unrelieved stress, and he was unaware of the strain his body was undergoing.
Still crying, Denise added, “Joe and I had been planning to travel after we retire. I know it sounds selfish, but now we’re chained to the routine of taking care of Pop.”
“Denise,” I said, “your concerns for yourself and Joe are real. Caregivers often fail to take care of themselves. Joe has to learn he can’t do it all. He has to ask for help.”
The good news is that burnout can be minimized and controlled. When I was caring for my own parents and feeling that I wasn’t doing enough, I would stop and ask myself, “How realistic are my expectations?” This question helped me focus and set limits on what I could do. For example, my mother was invited for dinner every Wednesday. But when those dinners conflicted with a school function for my son or a business engagement with my husband, I would remind myself how much I did for my mother, not how much I didn’t do. I knew Mom was in her apartment with Maria, her live-in companion, safe and cared for because of my planning. I tried not to invent guilt where it didn’t belong. Here are some strategies that I hope will help you be a realistic caregiver:
Work Interruptions
Has caregiving significantly interfered with your job? Has it caused you to miss work? Caregivers who are also employed outside the home report more family conflict and more job stress than noncaregivers. Findings also demonstrate that caregivers who are employed use the phone excessively, make more mistakes, and have higher rates of accidents, tardiness, and absenteeism than noncaregivers.
Beverly had just been offered a promotion to senior vice president at her financial services firm. Sitting in my office, she explained her conflict. “The very same day, my mother’s neighbor, Judy, called me from Chicago. I hadn’t seen Mom for three months, but Judy always kept me up-to-date on her needs. Now she was concerned and felt I should fly out to check on her. When I arrived in Chicago, I discovered that Mom did indeed require more supervision. She needs to live near me now, which means moving her to Los Angeles. This is going to take a lot of organization, because I’m married and have two teenagers. I turned down the promotion; I just couldn’t learn the new job while getting Mom settled with the care she’s going to need. Career-wise, it was tough, but it has to be this way for my sanity.”
“Beverly,” I responded, “it may have been a difficult decision, but it shows sound judgment. You understood your limitations and put your own mental and physical health first. If you are not stable and focused, you will not be able to successfully relocate your mother or care for your family.”
Adult children who care for older parents face sacrifices like Beverly’s every day. Learn to say no and set realistic boundaries. If you keep your eye on what you can do, it will prevent you from being overwhelmed.
Waiting to Live
“I feel like I’m being held hostage by my mother’s illness.”
“My doctor doesn’t understand.”
“My friends don’t understand.”
“My husband doesn’t understand.”
“My brothers and sisters don’t understand.”
It is difficult for others to comprehend how exhausting and anxiety-provoking caregiving can be. As bystanders, they cannot fathom how the immediacy of caregiving overwhelms the rest of your daily life.
When was the last time you had fun? Has caregiving caused you to miss out on friendships? Are your children resentful of time you spend with your parent? And what about your spouse? Does caring for your parent leave you so tired you have lost interest in sex? It’s difficult to be a fantasy in the bedroom when you’re emotionally and physically drained by the demands of child care, parent care, and the workplace. Since caring for your parents can take you away from regular activities and responsibilities, balancing your time is crucial.
In order to take care of yourself, it is essential to get the support you need from family, friends, and professionals. This support is a requirement, not a luxury, and can range from financial help, assistance with meals, and adult day care to a paid companion or assisted living. Good relationships become strengthened when support systems are put in place. But you must speak up—people cannot be expected to guess your needs.
Social Isolation and Depression
Paul’s mother, Rita, was eighty-two years old and had lived with Paul for ten years. They had shared a good, close relationship. All his life, Paul had looked forward to retiring and seeing the world, but about the time he was ready to retire, Rita started exhibiting peculiar behavior. She could not remember recent events. She became angry for no apparent reason. She began acting out inappropriately. By the time I met Paul, he was tired and resentful. “Right now my neighbor is sitting with my mom,” he said, “but I can only be gone forty-five minutes, because it’s not fair to ask him to deal with her longer than that. Nowadays, I rarely get to leave the house—we can’t even go to church anymore. My brother says I have to do something.”
Families, spouses, and friends may gently try to warn a caregiver that he is in trouble, but it is hard to see the forest for the trees. A caregiver totally enmeshed in the care of a parent loses sight of life outside the home. For caregivers of Alzheimer’s patients especially, social isolation is common. When patients don’t behave as appropriately as they used to, friends and family find it awkward to interact with them and may stop visiting. Perhaps as a result, caregivers are two to three times more likely to report symptoms of depression than noncaregivers and will use on average 70 percent more prescription drugs. Depression will not go away by itself while you continue to give care. If you harbor unrealistic expectations about yourself as a caregiver, you are at high risk for loneliness and isolation.
Depression can be a vicious cycle: You feel that it’s useless to ask for help, and besides, you don’t have time to go to the doctor. So you take no action. If you’re a primary caregiver and you can relate to any of the symptoms listed in this chapter, you may be experiencing depression that would best be addressed by a health professional. Do yourself and your parent a favor—take the following steps:
Take care of your own mental, emotional, and physical health. Your caregiving abilities depend on it. When you acknowledge your limits and accept help, it lifts the burden for everybody.
Alzheimer’s and Burnout
Alzheimer’s has been described as a disease of two people—the patient confined by the caregiver for his own safety, and the caregiver virtually imprisoned because the patient cannot be left alone. As Alzheimer’s progresses over time, it taxes every level of physical and emotional life for the caregiver.
Spouses, who compose approximately 50 percent of all primary caregivers in dementia care, are the most susceptible to illness. Because stress and depression can permanently alter the responsiveness of the immune system, these spouses are at higher risk for heart attacks, high blood pressure, depression, and other diseases.
Nina, Ralph, and Burt. “How can I just leave him here and go home alone?” eighty-eight-year-old Nina lamented. “I’ve been married to Louis for sixty-eight years!” When a geriatric psychiatrist recommended that Nina begin looking for long-term care for her ninety-two-year-old husband, her sons Ralph and Burt brought her to see me.
“In effect, Dad has already been taken from us,” said Ralph. “Now we need to protect Mom.”
When the Alzheimer’s developed to a difficult stage, Nina had managed with the help of a twenty-four-hour live-in aide. Now, Louis needed help walking, required feeding, and was incontinent of bowel and bladder. Most difficult of all, he was sometimes verbally abusive.
“The boys love us both and mean well, I know that,” she said. “But how can I move Louis out of our home? I’d be abandoning him at the time he needs me the most. No one knows Louis like I do. He has to have warm milk before bed. He doesn’t like the dark. And if I don’t check him frequently during the night, he’ll be soiled.”
Burt added, “Mom has been waking up the aide every two to three hours at night to check on Dad. No one is getting enough sleep, and the aide is complaining to Ralph and me.”
“Don’t be concerned about my getting enough sleep,” Nina said. “I just worry about Louis.”
I asked Nina about her relationship with her husband, and she spoke about the former days, idealizing the relationship. “Oh, Louis and I have had no problems. After a lifetime of living together, we can anticipate each other’s needs. Everything is fine.” Then she paused, broke down in tears, and confided, “Everything is not fine anymore. Sometimes Louis says very cruel things to me. He doesn’t mean them, but I get so sad and angry. And sometimes I get scared.”
“What frightens you?” I queried.
“I just get so tired even with live-in help. I’m afraid I’ll break down. Then who will take care of Louis?” Turning to her children, Nina said, “Boys, I haven’t talked about this before, but lately my nights have been unbearable. When I sleep, I have nightmares. When I can’t sleep, my heart pounds so hard it scares me. I haven’t wanted to burden you with this.”
“You can’t handle this much stress alone,” Ralph asserted.
“Mom, we’ll do whatever it takes to help,” Burt added as he stood up and hugged her. “We aren’t ready to lose you, too.”
“I’ll be fine, son,” she responded, placing her head on his shoulder.
Handing Nina a tissue, I explained to her that handing over the care of Louis would be one of life’s most difficult transitions. As the World War II generation has aged, they have proven to be faithful and enduring caregivers. But, typically, these spouses in their eighties and nineties have had a difficult time recognizing when their own health was in jeopardy. In a recently published study of fifty-four thousand female nurses, it was found that a woman’s risk of heart attack and heart-related death nearly doubled if she took care of her ill or disabled husband for at least nine hours a week.
“Mom,” Ralph said, “we know you’re dedicated to Dad, but you can’t go on like this anymore. If something happened to you, Dad would have to go to a nursing home anyway, and then there wouldn’t be anyone to visit him every day.”
Shortly after our meeting, Nina was indeed found to be at high risk for heart attack. She was briefly hospitalized and received a pacemaker. With the emotional support of her children, she realized she could no longer provide the best care for Louis, and she placed him with us the following week. Despite a family’s best efforts at home care, most Alzheimer’s patients are eventually placed in nursing homes when their needs become too great or when stress threatens to overwhelm the caregiver.
Ask for Help Now
Caregiving can be a thankless and physically grueling job. While the stress of caring for a young child is offset by the anticipation of a bright future, caring for an aging patient holds no such hope. Caregiver burnout must be treated with compassion and awareness. Until you walk down that road, you will not understand the guilt, frustration, and exhaustion of trying to deliver adequate twenty-four-hour care to someone you love. Oddly, caregivers traditionally do not give themselves credit, because they never think they’ve done enough. If you are a primary caregiver, you must learn to care for yourself and start asking for help now.