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Caregiver Stress

Caregiver Stress - Depression, Anxiety, Denial and Meltdowns

by Don Drake, Connelly Law Offices, Ltd. 6.19.24

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Attorney RJ Connelly III

"Today's blog will focus on caregiver stress, particularly in the context of caring for individuals with Alzheimer's and other forms of dementia," said professional fiduciary and certified elder law Attorney RJ Connelly III. "Caregiver stress can stem from various sources. The ongoing demands of tending to someone with a serious illness can lead to exhaustion and emotional fatigue, commonly known as burnout. Additionally, the lines between being a caregiver, spouse, child, or other loved one can become blurred, presenting complex challenges. Caregivers may also face unrealistic expectations from themselves and others and hesitate to seek help, increasing their burden."

Candace's Story

Candace started noticing signs of dementia in her widowed father shortly after he turned sixty-five. He would wander around the room looking for nonexistent things and repeatedly pick up and put down pillows on the couch without any apparent purpose. She would joke with him about it, but she knew something was wrong when he would laugh and return a few minutes later.

Then, the memory issues began. He started forgetting things they had discussed only a few hours earlier, such as leaving the refrigerator door open and taking out the trash on the wrong days. These were trivial things, but they added up and worried Candace.

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When she shared her concerns with other family members, they dismissed her, saying she was "looking for trouble" or that "he's old, what do you expect?" So, instead of creating tension in the family, she stayed silent and even began to question her sanity in the situation.

In early spring, the bank called her about suspicious activity in his checking account. When she went to the bank, they showed her multiple checks written to utility companies in the same month, deposits not made, and frequent requests for a new ATM card because he kept losing them. But it was the checks that scared Candace. She recounted the incident with a heavy heart.

"He had been writing 1995 on all his checks, even though the month and day were correct. It was clear that something was amiss. When I confronted him, he laughed, unable to tell me the current year. I can still vividly recall that moment when I broke down in tears. He just looked at me, completely puzzled. That was the moment I realized the gravity of the situation."

Attorney Connelly shared his perspective on the situation. "Candace reached out for help in managing her father’s finances, but it was evident that there was an underlying issue she was hesitant to acknowledge. When we finally met, she tried to rationalize her father’s behaviors, yet she couldn't bring herself to say the word 'dementia.' But when I mentioned it, it was like a weight had been lifted. She needed validation, though deep down, she already knew."

Attorney Connelly honestly discussed the situation with Candace, shedding light on her father's condition and offering guidance. "Many people expect dementia to follow a specific pattern, but in reality, it's as unique as each individual, with symptoms varying widely," he explained.

He advised Candace to address immediate concerns, such as powers of attorney, guardianships, and Medicaid planning, emphasizing the unpredictability of dementia's progression. "Address what you can now, so you'll be prepared for the future," he urged. Additionally, he referred her to organizations that specialize in dementia care.

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However, Candace revealed that her worries extended beyond her father's illness. She feared judgment and repercussions from her family for seeking help. As time passed, Candace shouldered the burden of her father's care alone. Despite her full-time job and responsibilities at home, she made the daily trek to her father's house, where she tended to his needs and tried to ensure his well-being. But as she juggled her own family and work life, the strain began to take its toll on her.

She reached out to her siblings, hoping for support and understanding. However, instead of compassion, she was met with accusations and blame. They criticized her efforts, attributing their father's condition to her actions and decisions. "They were quick to criticize," said Candace. "But they were nowhere to be found when offering help or support."

Feeling frustrated and overwhelmed, Candace sought solace in speaking with others about her father's situation. She expressed her disappointment in her siblings, questioning where they were when their father needed them the most. As her responsibilities grew heavier, she also noticed the impact on her relationship with her husband.

Despite her relentless efforts to care for her father, Candace found herself facing constant guilt and exhaustion. She tried reaching out to her siblings, following her counselor's advice, and proposing a schedule for shared care, but her attempts were met with silence.

"In fact, the only comment I received was from my brother, who suggested that I quit my job, disregarding my responsibilities and financial needs," said Candace. "This was such an unreasonable demand that it turned out to be the breaking point for me, igniting my frustration and anger."

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Attorney Connelly vividly recalled when Candace reached her breaking point and called him. Her distress was palpable as she questioned her brother's actions, wondering if he was "crazy" and if he would provide for her family. Eventually, Candace took her father into her home, where her husband and children rallied to provide care and comfort for him. Despite their efforts, they faced criticism from other family members, with one even questioning how her father's social security funds were being used. With Attorney Connelly's assistance, they could transition her father into a care facility and manage his affairs. Tragically, her father passed away shortly after moving into the nursing home.

Candace expressed gratitude for the support she received, particularly from the firm, and acknowledged that she might not have been able to cope with the challenges without it. Despite the hardships, she found solace in knowing that she and her family had provided the best possible care for her father, ensuring his comfort, securing medical and legal assistance, and always treating him with the utmost respect. She was confident that her father would be proud of the care they provided for him until the very end.

"Caring for a loved one with Alzheimer’s or another form of dementia is an enormous responsibility that is frequently underappreciated and can quickly become daunting," said Attorney Connelly. "It's normal and understandable to experience high levels of frustration when providing care to someone with dementia. However, when these feelings escalate to extreme frustration and even anger, it can have serious implications for the caregiver and the individual receiving care."

Stress and Caregiving

Stress has become a common part of everyday life, from responsibilities such as raising children to work performance. We often find ways to adapt and cope with stress, such as receiving a paycheck or expressions of appreciation from our bosses and loved ones. This positive reinforcement plays a significant role in managing stress.

However, caregivers for someone with dementia do not receive the same level of reinforcement in most cases, leading to increasing levels of stress and frustration. In cases where they also face adversarial family dynamics, the stress can become overwhelming, affecting their physical health and emotional well-being. This can manifest as verbal outbursts or, in severe cases, physical aggression. While coping mechanisms exist, addressing the impact of thought processes and responses to stress is crucial.

It's also important to remember that stress is not caused by one major event but rather by combining various factors, such as events, actions, perceptions, and belief systems. When we fail to address these factors, they can accumulate and lead to burnout. Recognizing and tending to these stressors can help prevent the crash-and-burn effect.

The Best Representation of Stress

The video below provides a powerful demonstration of how stress affects us far more than mere words can. Imagine if someone told you that a simple rubber band could rupture a twenty-pound watermelon. It might sound unbelievable, but when multiple rubber bands apply pressure to the fruit, it gradually destroys it. Similarly, the impact of stress on us may not be apparent after a single incident. Still, over time, the accumulation of various stressors can eventually push a person to their breaking point.

"The outcome demonstrated above was not from a single event but rather a gradual build-up of stress and pressure," said Attorney Connelly. "Each challenge stacked upon the next, fostering an increasing sense of tension. This demonstrates the sneaky nature of stress - when there's no outlet, it only takes one final push to unleash a chaotic response. How does stress appear in a caretaker? Let's look at a few manifestations."

Depression - Persistent stress from caregiving can potentially lead to a diagnosis of depression if healthy coping mechanisms are not established. This issue is commonly reported by caregivers and requires attention. While the impact may not be immediately visible, the emotional toll can be significant. Research indicates that middle-aged women providing extensive care to a spouse or parent are at a higher risk of experiencing mental health challenges compared to non-caregivers.

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Anxiety - Anxiety and depression often coexist, with one potentially leading to the other. Anxiety involves feelings of worry, unease, and nervousness about the future. For example, Candace, overwhelmed by anxiety about others judging her, tried to alleviate her anxiety by increasing her efforts. However, this approach only exacerbated the situation.

Denial - One stage of grief involves coming to terms with a loved one's dementia. It can also be a stage of caregiver stress, as the constant pressure to demonstrate capability and well-being adds to an already heavy load. Previous life experiences can further intensify this situation.

Learned Helplessness - When caregivers finish their day, they may feel tired, moody, exhausted, frustrated, and unappreciated. Experiencing these feelings day after day takes a toll on the spirit and can lead to physical problems. Moreover, loved ones may also be affected, receiving less quality time and being snapped at.

Decades ago, behavioral psychologist Martin Seligman experimented with dogs. He electrified a portion of the floor of a cage. After receiving an electric shock, the dogs would move to another area without electricity. Eventually, the entire floor was electrified. In response, the dogs stopped trying to avoid the shocks, exhibiting what Seligman termed "learned helplessness." Although initially related to animal psychology, this concept can also be applied to humans.

For instance, a caregiver experiencing stress may begin to believe that nothing they do will help them manage their stress. This sense of helplessness may lead them to stop trying to solve the problem, exacerbating their stress and its consequences. Not everyone experiences this learned helplessness, and some individuals may be more prone to it than others.

Withdrawal - Potential signs of a problem can manifest when someone discontinues activities like going to the gym, watching favorite TV shows, or engaging on social media. Conversely, friends and loved ones may also withdraw from the person, exacerbating their isolation and contributing to a downward spiral. This situation can often present a difficult dilemma.

Health Problems - According to researchers, one out of every three caregivers who assist others needs care. The study found that nearly one-quarter of women who are caregivers suffer from health problems, and they are twice as likely as non-caregivers to experience heart disease. This underscores the significant impact that caregiving can have on the health and well-being of those who selflessly care for others.

A Final Thought

"Caring for someone can be extremely challenging and emotionally taxing, often leading to stress, anxiety, and sheer exhaustion," said Attorney Connelly. "Many caregivers feel like they are constantly on call and worried about whether they are providing enough care, making it hard for them to prioritize their well-being. When caregiver stress is left unaddressed, it can lead to burnout, which not only takes a toll on the caregiver's physical and emotional health but also affects their relationships and overall mental state. Furthermore, burnout can significantly hinder the caregiver's ability to provide the necessary level of care. We will discuss this topic further in future blogs."

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