As someone who has been providing care for a family member with dementia for the past year, I can attest that I was not fully prepared for the reality until I experienced it firsthand. While I had an idea of the basic tasks involved, the continuous nature of day-to-day responsibilities, along with the physical, mental, financial, and emotional strain that caregiving entails, was beyond my expectations. One truly comprehends the challenges only when fully immersed in them.
Things About Caregiving That Nobody Warns You
But here’s the thing: understanding that I’m not alone is what has been my salvation. Speaking to others about their similar experiences has helped me navigate each day with resilience, grace, and love. While it is true that one must experience it to truly comprehend it, listening to candid accounts of the realities of caregiving can be incredibly beneficial in preparing new caregivers for what lies ahead.
Caregiving: Real Stories and Expert Advice
In this article, we will share real stories from caregivers about their journey. Additionally, we will provide insights from a licensed mental health professional on effectively managing the challenges that come with caring for a loved one.
Emotional Struggles
Initially, we will explore some of the emotional struggles caregivers commonly face. It is important to note that these difficulties vary among individuals due to diverse backgrounds and unique caregiving circumstances.
Below are some emotional struggles that resonate with many caregivers.
Anticipatory Grief
Jennifer Fink, who was a caregiver for her mother with Alzheimer’s for two decades and volunteered for the Alzheimer’s Association, explains the concept of anticipatory grief, a type of grief that is experienced knowing that a loss is inevitable in the future, but has not yet occurred.1
Anticipatory grief is particularly prevalent in cases of Alzheimer’s and other forms of dementia due to the gradual progression of these diseases. Caregivers may witness the decline of their loved ones over many years, experiencing multiple losses at each stage of the disease. Jennifer Fink notes that the journey can vary in speed, with some cases progressing quickly while others unfold slowly, both presenting their own challenges.1
Swift Changes in Roles and Identities
One challenging aspect of caregiving is the abrupt shift in identities that many of us face, particularly when a child must take on a caregiving role for their parents. Suddenly, you find yourself in the position of being the parental figure in the relationship, which can be disorienting and difficult to come to terms with.
According to Nikki Beauchamp, an associate broker at Sotheby’s International Realty who was the primary caregiver for her parents, the impact of these role changes can be significant. She highlights how caregiving can lead to the caregiver transitioning from purely being a child to taking on more of a caretaker role, a shift that is not often anticipated or discussed.
Beauchamp emphasizes that these shifts in roles and relationships can greatly affect family dynamics, particularly if the family dynamics were already strained or unbalanced.
…no one really warns you about the impact of struggling with the decline in health of your parent, of eventually being more their caregiver and being stripped of being just their child.
Feeling Alone and Misunderstood
It can be challenging for others to truly comprehend your situation, and sometimes, empathy may be difficult to find. Beauchamp highlights the constant struggle of having your life disrupted by endless doctor’s appointments and discussions about them, or spending all your spare time organizing these appointments.
She explains the sense of isolation she experienced while looking after her parents. “Unless someone has experienced being a caregiver, you’ll discover that the majority of your friends and coworkers will lack understanding and show little empathy,” she adds.
Things About Caregiving That Nobody Warns You Physical Effects
Taking care of others can significantly impact our physical health and well-being. Below are some illustrations of this phenomenon.
Caregiving: Stress, Burnout, and Sleep Issues
“Physically, caregiving can result in prolonged stress and exhaustion, with research indicating a correlation with increased occurrences of sleep disruptions, anxiety, and even heart-related issues,” shared by Becky Reiter, LPC-S, a licensed professional counselor supervisor at Resilience Counseling & Wellness. Becky focuses on caregiver stress, chronic illness, mental health, and related areas.
Sleep Quality Impact on Caregivers
Research from The Enlightened Mind in 2016 revealed that 76% of caregivers faced challenges with their sleep quality. This included difficulties such as not getting enough sleep and frequent waking throughout the night.
Caregiver stress, as indicated by MedlinePlus at the National Library of Medicine, has adverse effects on health. It is linked to a compromised immune system, weight gain, and the development of chronic conditions like heart disease, diabetes, and cancer.
Neglecting Personal Health
Caregivers often overlook their own health due to the demanding nature of caring for someone with declining physical or mental abilities. The responsibility is akin to a full-time job, making it challenging for caregivers to prioritize their own well-being amidst juggling work and family obligations. This situation can be overwhelming, making it difficult to seek medical attention or engage in preventive healthcare measures.
“I lead a support group where a member, who recently lost their spouse, is now addressing their own health concerns,” Fink reveals. “Fortunately, they have not experienced any serious health issues due to this delayed focus on self-care.”
Caregiving: Mental Health Impacts
Caregiving can significantly affect our mental well-being. In this section, we will explore the typical mental health difficulties experienced by caregivers.
Mood Changes
The demands of caregiving can impact your mood and focus, according to Reiter. This can result in challenges to fully engage in your own life. Feelings of ongoing overwhelm, frustration, isolation, and potentially anger are not uncommon in caregivers. These emotions may be heightened if one person is solely responsible for caregiving, even if there are other family members present.
Increased Rates of Depression and Anxiety
“One of the most challenging aspects of being a caregiver is dealing with the intense emotions of grief, guilt, and resentment,” Reiter explains. It is common to feel a deep sense of loss as your loved one’s health deteriorates or to experience guilt when you need a break. These emotional ups and downs can raise the risk of developing mental health issues such as depression and anxiety. For example, research in 2022 revealed that 28.6% of caregivers face anxiety and 38.8% grapple with depression.
Becky Reiter, LPC-S
Caring for a loved one can be emotionally challenging, often leading to feelings of grief, guilt, and resentment.
Caregiving: Financial Strain
The financial impact of caregiving should not be underestimated. According to Reiter, caregivers often experience significant financial burdens such as unpaid time off work, purchasing medical supplies, and managing household expenses with reduced income. Research conducted by the AARP revealed that caregivers typically have to dip into their own funds to cover their loved one’s needs, spending an average of $7,242 annually, which equates to around 26% of their yearly income.6
The financial challenges associated with caregiving can have long-term implications, leading many individuals to make difficult decisions between their career and caring responsibilities. Fink notes examples of women in their 30s who forego paid employment to provide round-the-clock care for their family members. This choice can impact their future retirement savings, ability to purchase a home, travel, and start their own families.
Social Isolation
Caregiving can lead to a sense of isolation and loneliness. It can be challenging to balance caregiving responsibilities with maintaining social connections. The effort involved in attending social events and interacting with others may feel overwhelming compared to the benefits, leading caregivers to withdraw and isolate themselves.
Additionally, the presence of dementia in a loved one can further contribute to social isolation. Interacting with someone who may not recognize or remember them, struggle to converse, and lack the ability to engage can deter friends and family from visiting. This lack of social support can leave caregivers feeling isolated and alone.
Navigating Healthcare Systems
Ask any caregiver, and they will mention that managing healthcare becomes a significant responsibility on top of caregiving. The complexity of healthcare systems and the lack of preparation and support make this task challenging.
“Caregiving requires working with healthcare professionals, comprehending intricate treatment strategies, and navigating through insurance and legal procedures—all without a definitive manual,” Reiter explains. “It can seem like a constant struggle with scheduling appointments, enduring long waits, and dealing with paperwork.”
Lack of Preparedness
In general, many individuals start providing care to others during a time of crisis, such as after a hospital stay, an accident, or a series of distressing events that indicate their loved one can no longer manage on their own. Therefore, most caregivers find themselves in a situation where they lack preparation or training, akin to a startled deer in the glare of headlights.
According to Reiter, many caregivers begin their roles without any formal training and are suddenly tasked with responsibilities that require new skills, like administering medications and providing physical assistance. This “trial-and-error” method can be overwhelming and exasperating.
Troubleshooting: Developing a Care Strategy
Feeling overwhelmed at the beginning of your caregiving journey is normal. However, once you find your footing, it is crucial to establish a structured plan to effectively handle the upcoming responsibilities.
It is recommended to draft a care strategy in collaboration with all individuals involved in the care of your loved one. This plan may encompass:
Getting Support and Finding More Resources
It is crucial to seek assistance as you start this process. Here are some recommendations from Reitner:
Caregiving Bottom Line
Providing care to others can be incredibly challenging, and it’s difficult to be fully prepared for all the uncertainties that come with it. Having a sense of what to expect and being aware of the common difficulties caregivers face can offer some comfort and a feeling of solidarity in your journey.
It is essential to remember that you do not have to handle this responsibility on your own. Seeking support is crucial, particularly if you find yourself struggling with your mental or physical well-being. Do not hesitate to turn to your healthcare provider or a licensed mental health professional for the additional assistance you need during this period.
Caregiver Health: Understanding the Impact on Mental Well-Being
A recent study published in BMC Geriatr sheds light on the prevalence and factors associated with anxiety and depression among caregivers to assisted living residents during the COVID-19 pandemic. This research highlights the challenges faced by caregivers, emphasizing the importance of addressing their mental health needs.
The Financial Strain Faced by Family Caregivers
According to the American Association of Retired Persons (AARP), family caregivers experience significant financial burden, spending an average of $7,242 annually to support their loved ones. This financial strain adds to the already demanding responsibilities of caregiving, underscoring the need for support and resources to alleviate these challenges.
