Caregiving can be a fulfilling journey, but it also entails significant emotional and physical demands. Many caregivers face the common challenge of caregiver stress. Stress may arise when caregivers find it difficult to fulfil their role optimally or encounter challenging situations.
Continuous caregiving can lead to chronic stress, which can have adverse effects on both physical and psychological health. A likely consequence of prolonged caregiver stress is burnout- a state where one will feels emotional exhaustion, depersonalization and a reduced sense of personal accomplishment. Emotional exhaustion is characterized by a sense of overwhelming burden, an inability to carry on, or feeling emotionally drained while dealing with caregiving responsibilities. Caregivers may also develop sense of cynical detachment, leading to a less engaged relationship with the person they are caring for. Depersonalization can lead to difficulties in effectively interacting with the care recipient. Additionally, a decrease in personal accomplishment refers to feelings of incompetence and a loss of confidence in one's ability to make a meaningful contribution to the care situation.
Let's explore various aspects of caregiver stress that may emerge while taking care of a cancer patient and coping strategies for caregivers to manage these difficulties.
Watching our loved one undergo cancer treatment and grappling with the unpredictability of the illness and its treatment side effects can elicit emotions of powerlessness, sorrow, fear, and anxiety.
Caregivers frequently encounter uncertainty concerning the disease progression, such as uncertainty about the required care at various stages of the journey, available treatment options, and the support. These factors can give rise to frustration and a profound feeling of helplessness.
“We've talked to many doctors, and they all say different things, which makes me confused. We also looked online, but even there, we found different answers. I don't know who to believe or trust for guidance.”
“I’ve been feeling overwhelmed and I’m uncertain about what comes next?”
To address uncertainties about their medical condition, it's important to communicate openly with the doctor or healthcare team. Don't hesitate to ask questions for clarification on the diagnosis, treatment, or any related information. This assists the caregiver in gaining a better comprehension of the medical condition, including potential side effects and complications associated with specific procedures or treatments. Being aware of the forthcoming treatment plan and available options enables the caregiver to prepare and alleviate anxiety arising from uncertainties.
Moreover, caution should be exercised when seeking health information online, as the information available on the Internet may not be applicable to every patient's unique condition. It is advisable to consult the primary doctor directly to clarify any doubts or concerns.
Caregivers can talk to friends and family regarding their emotions. Additionally, they might find it beneficial to join support groups where they can connect with others who share similar experiences, allowing them to exchange feelings, coping techniques, and resources. Seeking professional support discussions with a counselor or therapist is also an option for caregivers to process their emotions and explore effective coping strategies.
Caregivers are often thrust into their caregiving roles unexpectedly and without a choice in the matter. This sudden shift can disrupt their other commitments and responsibilities, such as caring for younger children or fulfilling work obligations. Moreover, distinguishing between the role of a caregiver and that of a spouse, child, relative, or friend to their loved one can be perplexing due to the emotional and personal connections involved. Caregivers often share close relationships with the person they are caring for, blurring the lines between caregiving responsibilities and existing family roles. This complexity makes it challenging to navigate boundaries and expectations associated with each role, leading to confusion and emotional strain.
The vast majority of caregivers lack formal training, making caregiving even more challenging during their journey. Physical demands come into play, especially when providing assistance with daily activities or mobility for their loved ones. Additionally, caregiving can consume a significant amount of personal time, leaving little opportunity for pursuing individual interests and leisure activities.
“I feel torn between taking care of him/her and managing my own responsibilities; it’s become quite challenging to balance everything.”
"I learned to look after him along the journey, and of course, there were many hiccups too. When he's not feeling well, I have to quickly prepare his medication, and he gets upset if there's any delay. I handle all the household tasks, and sometimes I wish he could be more understanding. I'm not blaming him – I know he's unwell. When he was feeling better, he used to joke with us too. My son once told me, 'Mama is always with Papa,' and I miss spending time with my son too. I feel really sorry for not being there for my son as much, but there's only one of me, only one pair of hands."
“I've been put into this role unexpectedly and have had to adapt without much choice. I’m not nurse and doctor, sometimes I accidentally caused her pain and discomfort when trying to help her move.”
It is virtually impossible to assume all the responsibilities of caregiving without regular breaks or assistance. On the other hand, It's completely acceptable to seek help from family, friends, or care agencies to share the responsibilities and divide the caregiving tasks. Some agencies offer caregiver training to equip them in providing care for their loved ones at home.
Delegating tasks is important, and being open and willing to let go of some control is equally vital. When we try to control every aspect of care, others may be less inclined to help if we insist on doing things only our way.
While the caregiving journey can be physically and emotionally demanding, some of the caregivers make a conscious and deliberate choice to provide care to loved ones. This choice stem from deeply personal reasons and motivations that differ from one caregiver to another. This may serve as a source of strength during challenging periods. It reminds caregivers of the meaningful impact they have on their loved ones' lives and reaffirm the value of their role in providing comfort, care, and stability. For an example, some may view caregiving as an opportunity to give back and show gratitude for the support they received during the upbringing or difficult time. By recognizing the significance of the choices and finding purpose in their caregiving roles, caregivers often find the resilience to face the difficulties that come their way with determination and love. Finding balance and understanding out limitations in the caregiving scenario is crucial to prevent setting unattainable expectations for ourselves.
In many instances, caregiving often requiring caregivers to make significant adjustments in their lived. One aspect that caregivers frequently encounter is the need to reassess their budgets and financial priorities. Meeting the care recipient’s needs may necessitate allocating more resources to medical expenses, specialise equipment or home modifications. In some cases, caregivers might need to cut back on personal expenses or forego certain luxuries to ensure the care needs are adequately met. Furthermore, dedicating time to caregiving can impact the caregiver’s capacity to work or maintain a regular income.
Depending on the specific circumstances and insurance coverage, certain medical or caregiving expenses may not be fully covered, placing the financial burden on the caregivers themselves.
The emotional and physical toll of caregiving can have a significant impact on the caregiver’s overall well-being. The stress, anxiety and exhaustion that come with providing care can potentially lead to health issues of their own, both mental and physical. These challenges can exacerbate existing medical condition or lead to the development of new ones, requiring additional healthcare expenses for the caregiver.
“Are these procedures or equipment rentals covered by insurance? If they are not covered, we may not be able to afford this.”
“I have to take care of him/her, yet I have to work to earn money. There are so many things to do, but I have no time to deal with them. I missed my appointment last week because I simply don't have the time, and each visit to the doctor is also costly.”
Caregiver facings financial strain have various avenue to address the financial challenge. Firstly, caregiver can explore insurance pay-out by checking loved on existing policies that can provide financial assistance such as health insurance, long-term care insurance or disability insurance. Understanding the coverage and making appropriate claims can help offset some of the caregiving cost.
Creating a well-planned budget is crucial for caregivers to manage the financial responsibility effectively. This involves evaluating income, expenses, and caregiving-related cost to identify areas where adjustment can be made. By having a clear financial plan, caregivers can better allocate resources to meet own needs and those of the loved one.
By exploring these options and taking proactive steps, caregivers can find ways to manage their financial challenges more effectively. It is essential for caregivers to remember that seeking help and using available resources is not a sign of weakness but a practical approach to ensuring they can continue providing quality care to their loved ones without compromising their own financial stability and well-being.
In summary, caregiving can be both rewarding and demanding, leading to caregiver stress and potential burnout, in the state of emotional exhaustion, detachment, and a sense of reduced accomplishment. As caregivers take on the challenging role of caring for their loved ones, they may encounter various difficulties.
1. The path of a caregiver is filled with ups and downs. Caregivers experience a wide range of emotions, including fear, anxiety, and helplessness due to the unpredictable nature of the illness. In order to deal with these uncertainties, maintaining open communication with the healthcare team can be beneficial. Additionally, considering the option of seeking support from others or engaging in professional counselling can aid in the development of effective coping strategies.
2. Assuming the role of an untrained caregiver can cause stress and disrupt our routines and commitments. It's acceptable to ask friends or family for assistance and delegate tasks. Caregiver training is available through agencies to improve caregiving skills. While finding purpose in caregiving is empowering, it's crucial to recognize our limitations for a balanced caregiving experience.
3. Caregivers face substantial life adjustments, such as budget and priority reassessment, to meet care recipient's needs, potentially affecting personal finances and well-being due to caregiving's emotional toll; those in financial strain can address challenges by exploring insurance payouts, budget planning, and using available resources for more effective financial management.
If you ever feel stressed or need assistance in finding available resources, you may contact hospital or clinic's social worker. They're available to offer valuable guidance and support during the difficult time.
Ms Jaclyn Lee, Supportive and Palliative Care Clinician, OncoCare Cancer Centre