Have you heard of dementia? Alzheimer’s? Parkinson’s? Cancer? Of course, you have! Perhaps, your friend suffers from it? Maybe, you have scrolled through long articles detailing the symptoms? Or did you read about it in college?
A million sources illustrate the pains and struggles of those with a fatal disorder. But what about the gentle matron crying on the side of the bed? Or the young son conflicted between depleting finances and piling medical bills? Or the daughter drowning in a whirlwind of office, children, and a chronically ill mother? Perhaps, you haven’t heard about them; the voices side-lined in narratives; the hidden patients lauded for their bravery; the invisible force shouldering our healthcare burden. Here’s a chink in the silence to address one of the most common problems faced by caregivers- burnout!
Caregiver burnout? Never heard of that!
Job burnout, overload, exhaustion often garnish office-room conversations, student complaints, and social media jokes. However, caregiver burnout rarely breaks through the ripple of consciousness. Caregivers are everywhere; lingering in lunchrooms; fading on train stations; sitting in the doctor’s waiting room. Perhaps, you know one of them. A caregiver is a person tending to the personal and medical needs of a patient. This includes professional caregivers like doctors or nurses and family caregivers who share a personal relationship with the patient. Although caregiving is a rewarding experience, lack of adequate support and excessive demands can have debilitating consequences like burnout. Caregiver burnout is emotional or physical exhaustion due to the stress associated with caring for an ailing loved one. It includes feelings of stress, anxiety, and depression along with an attitude change from positive to indifferent. Most caregivers experience burnout which can impair their ability to care and affect their health.
Why does caregiver burnout occur?
Taking care of a loved one can be exhausting and overwhelming. However other factors associated with caregiving can also cause burnout-
Role confusion
Being thrust into the role of a caregiver can be confusing. People often find it difficult to separate their role as an objective, responsible caregiver and as an afflicted spouse, child, or family member.
Unrealistic expectations
Caregivers may expect their involvement to cause radical changes which are unrealistic in the case of progressive disorders like Alzheimer's. This can increase pressure and frustration.
Loss of control
Caregivers may feel helpless and frustrated due to a gap between their available resources and the amount realistically required.
Excessive demands
Placing all the responsibility on a single caregiver can overburden and fatigue them. Caregivers and family members should both realize that they need to share responsibility.
Other risk factors
Certain factors do not cause burnout but increase its likelihood. Patients requiring a higher level of care or those prone to aggression, apathy, incontinence, and sensory or balance impairments are exhausting to look after. Similarly, a poor premorbid relationship with a patient makes caregiving less rewarding. Other caregiver characteristics like lack of adequate finances, poor social support, and coping skills as well comorbidities like depression, anxiety, or physical illness increase the chances of burnout.
Signs that it isn’t just fatigue or tiredness
Here are some reliable indicators that you need to take some time away from caregiving responsibilities-
Loss of interest in pleasurable activities
Feelings of hopelessness and helplessness
Changes in appetite and sleep
Reduced energy levels
Withdrawal from social interactions and loved ones
Increased frequency of physical problems like headaches, stomachaches, and illnesses
Feeling emotionally or physically exhausted
Neglecting physical and emotional needs
Irritability and loss of patience with the care recipient
Feelings of wanting to hurt yourself or the patient
Prevention is better than cure!
The best way to deal with burnout is to prevent it, this is what you can do-
There is no substitute for research
One of the best ways to gain control over an insurmountable situation is by collecting data. Researching the disorder can improve adjustment to the role of a caregiver. Inquiries can be made regarding family leave benefits at the workplace to avoid being overwhelmed by pressure.
Self-acceptance is the key
The burdens of caregiving can be eased by acceptance of fallibilities. One must acknowledge one’s limits and delegate tasks to others. Assertiveness can be especially useful here! Breaking each task into smaller steps and setting realistic goals can give a sense of control in an otherwise chaotic situation. It’s also important to realize that caregiving can be frustrating. Having negative feelings does not make one a bad caregiver. Accepting one’s feelings can prevent unrealistic demands.
Turn up for yourself
Caregiving should not overshadow one’s needs. It is essential to tune in to feelings and wants. Regular breaks should be taken to relax and restore energy. Practices like meditation are effective with caregiver anxiety and depression. Caregiving should never come at the expense of social ties and hobbies. Such an attitude increases isolation and frustration. It is important to maintain balance because only when you turn up for yourself can you turn up for others.
Healthy minds have healthy bodies
Looking after one’s body is essential. Avoid missing doctor’s appointments and keep check of medicines. Setting personal health goals like allocating time to be physically active can help increase motivation to engage in healthy behaviors. Remember to maintain an adequate diet, proper exercise, and regular sleep schedules.
It’s ok to ask for help
Asking for help from your loved ones can help reduce stress. Various community services like transportation, meal delivery, etc. are also available. Local organizations often provide programs for caregivers. One can interact with other caregivers who share similar experiences through support groups. These improve problem-solving capacities and help provide validation and encouragement. Individual counseling and psychoeducation are also effective for caregivers’ concerns.
Consider respite care
One way to take leave from caregiving is through respite care services. These involve professional services for patient care that can be arranged any time and for any duration. They are of various types-
In-home respite: Professionals provide nursing, companionship, etc services at home
Adult care centers and programs: Some centers provide programs for both adults and children so that both can spend time together. This can greatly reduce the load on caregivers.
Short-term nursing homes: These include living homes, nursing homes, or memory care homes which allow short stays for patients.
Private care aides: These service providers focus on need assessment and coordination of services.
Day-care centers and full-time care centers: Various day-care centers and full-time care centers are available based on profiles of patients, charges, and types of rooms offered. Assisted living services for early or mid-stage patients and terminal care centers are also available.
Concluding note
Caregiving is not a smooth sail in the ocean. It is bound to be jolting. The key is to remember that even the strongest people have weak moments. Caregiving is not an obligation to be superhuman, but rather a reminder of our limits and our ability to create change within these limits. So, prepare that cup of tea, bring those medicines on time and handle the bills, but also remember to look at that flower outside the window, meet that old friend who is in the city again and read that book you have always been meaning to read!
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