Who Cares For the Caregiver?

WWhen we enter a hospital room, our eyes dart to the face of the patient. We notice the IV pole, from which bags of medications and blood hang. The monotonous beeping of the heart monitors fills the room. However, we rarely observe the hand the patient holds on to, the whispers of reassurance, and the countless hours of care beyond the four walls of the room. The room seems normal when there is a caregiver sitting in a chair by the patient’s side. Yet when the chair is empty, the shift in the atmosphere is unmistakable. Caregivers take on multifaceted roles, from managing medications to providing emotional support to the patient. The demand for caregivers is expected to grow. del-Pino-Casado et al. (2021) state that “family carers will continue to be the main source of care” due to increasing life expectancy and dependency, making caregiver burden “a significant public healthcare issue” (p. 1). However, the constant responsibility of caring for a sick or injured person can pose immense psychological challenges, including anxiety, burnout, and guilt.

“The room seems normal when there is a caregiver sitting in a chair by the patient’s side. Yet when the chair is empty, the shift in the atmosphere is unmistakable.”

Anxiety is a persistent, unpleasant emotion that plagues people when future outcomes are unfavorable or unknown. Caregivers, especially those looking after loved ones who are critically ill or injured, can feel anxious when wondering what the next day, hour, or even next second has in store for them. Priego Cubero et al. (2023) found that multiple systematic reviews have identified anxiety as a common experience for carers of people surviving stroke, cancer, or living with Alzheimer’s disease. Uncertain recovery outcomes, concerns about making incorrect decisions, doubts regarding the quality of care provided, and the lack of control one can exert on the future are some factors contributing to caregiver anxiety. The burden transcends statistics, with one caregiver elaborating, “‘(…) I don’t want to think about it, but, if she ends up bedridden … [she cries] (...) … how can I leave her? [Silence] … I don’t want to think about afterwards, … because if I do it upsets me’” (Monteyano-Lozoya et al., 2024, Section 3.2 Feelings, para. 3). The caregiver’s statement, “if she ends up bedridden” represents her fear of her loved one’s illness worsening. She hesitates to even converse with the interviewer, because of the overwhelming amount of painful uncertainty she faces. Each caregiver deals with a variety of anxiety-inducing circumstances, but they also encounter challenges outside of their own minds. These challenges tire them out frequently, leading to emotional and physical exhaustion.

While anxiety stems from uncertainty about the future, burnout emerges from the prolonged demands of caregiving in the present. Lindt et al. (2026) write that “overstrained caregivers” rely on more medications and healthcare services than noncaregivers, “indicating a decline in physical health.” Carers’ dependence on medicines illustrates the unsustainable nature of continuous caregiving without adequate support. Unfortunately, some caregivers’ chronic caregiving stress has even more critical effects on their mental health. Hu et al. (2018) state, “it is reported that the main caregivers of stroke patients have an equal to or greater incidence of mental illness than stroke patients and bear high burden at the same time” (Hu et al., 2018, para. 7). When caregivers themselves require medical attention, the quality of care they can provide to others may eventually worsen. These situations ultimately harm both patient and caregiver. The growing list of responsibilities gradually leads to caregivers losing the emotional capacity and physical energy to look after themselves. Taking breaks appears to be the solution to burnout, but it adds another psychological burden to rest on carers’ shoulders: guilt.

Guilt is a distressing emotion experienced by individuals who perceive their actions to be morally incorrect or inconsistent with their personal values. Hussin and Sabri (2023) identify that caregivers feel guilty for a variety of reasons that include taking care of themselves, having fun when not presently caring for the patient, or providing inadequate care to the patient and their other family members. These factors show how guilt can be especially complex because it tends to manifest in different forms, placing additional weight on the shoulders of caregivers. Guilt can also be triggered when one’s emotional reactions to their situation contradict their deeply held beliefs. One caregiver said, “There are times that I feel guilty when I blame God for giving her this disease. There are people who deserve this pain more than she does. However, I think about it and I feel terrible. God has given us so many things in this world including support, money, energy, and love. How could I blame Him for this test?” (Hussin & Sabri, 2023, para. 22). When people are caught up in emotionally exhausting circumstances, they find ways to gain certainty of the problem. They attribute impactful yet uncontrollable events to a higher power. The husband did initially shift the blame to God, mentioning how there are other individuals that “deserve this pain more.” However, this went against his respect and gratitude towards Him, referencing several positives of his life. This contributor of guilt was caused by the violation of personal values in a strenuous situation, increasing the emotional burden on the carer.

Caregiving is an overlooked form of service, and one that can be thankless. Carers can be exposed to increased amounts of anxiety, burnout, and guilt. These psychological effects are connected to doubt, fear, and a sense of responsibility. Conversely, prolonged periods of caregiving can also benefit carers. Mishra et al. (2023) report fulfilment in caregiving. Assisting her mother-in-law has given a carer, living in Prayagraj, more purpose in her life. These positive emotions can truly be felt only when carers’ burdens are recognized and lightened. Invisible pains of caregiving are disregarded due to the urgency and priority given towards the care of patients. Balance is crucial in understanding how to best support both parties. Family, friends, and healthcare professionals can play roles in making workloads more manageable. Now imagine this scenario: a carer consoles a patient by holding on to their hand. Instead of suffering in solitude, a family member stands close by, resting their hand on the carer’s shoulder reassuringly. A doctor carefully and clearly charts out treatments and guides the carer with accurate results and honest timelines. These gestures seem small, but they can be extremely beneficial for the patient and caregiver’s well-being.