The cost of Caregiving: A peek into the Mental and Emotional health of Caregivers

What is Caregiving?  

Caregiving is the act of providing daily support, be it is emotional or physical, to people affected by aging, disability, injury, or chronic conditions.  

If you are a caregiver and someone comes up to you and asks, “Do you feel physically and emotionally exhausted by taking care of someone who cannot take care of themselves due to their health issues?” And if your instant answer is “YES”; then caregiving might be impacting you more than you know.  

The Real cost of Caregiving 

Historically, the nature of caregiving, both formal and informal, has been invisible to society. The burden of heavily taking care of a close family member or a patient, battling disabilities, chronic or terminal illness may take a drastic toll on both a caregiver’s mental and emotional health. If you are a formal caregiver like a nurse, or especially, if you classify as an informal caregiver, meaning you are an immediate family member of the care recipient and are providing unpaid care and fulfilling demanding duties, then you may experience mental exhaustion and emotionally strained days. 

‘The Caregiver Effect’ 

You might engage or hold onto caregiving out of love and responsibility. Caregiving is known to have both positive and negative effects. It is theoretically known as ‘the caregiver effect.’ Positive impact includes resilience, sense of purpose and meaning and a social life. The negative effects on the other hand include burnout, caregiver burden and even stretch to compassion fatigue if ignored.  

Addressing the difference between caregiving burnout, caregiving burden and compassion fatigue: 

• If you, constantly, over the years are caring for someone and feel emotionally, mentally and physically exhausted then you might be experiencing caregiving burnout.  

• If you feel that the stress of caregiving and weight of responsibilities is affecting you and increasing, whether it’s mental, emotional or financial, then you might be experiencing caregiving burden. 

• Lastly, if you feel emotionally exhausted and lack empathy to carry on your caregiving because you have been exposed to something traumatic, then you might be experiencing compassion fatigue.  

These are not signs that you aren’t doing enough, these are warning signs that are normal and it is okay to feel overwhelmed because you are trying your best. Understanding the difference between them is equally essential to get the right resource of help. 

Highlighting the Early warning signs of the negative Trio of caregiving:  

According to the views of the social psychologist Christina Maslach, burnout may include the following signs focused on three dimensions: 

1. One can start experiencing depletion in emotional energy, which transforms into emotional fatigue.  
2. One can start distancing from the care receiver, also known as depersonalization. 
3. One can start feeling a reduced personal accomplishment, which can impact one’s self-concept.  

So, you might feel frustrated easily at the person you care for, anxious about tasks because they seem endless, have difficulty sleeping or eating and even have headaches or joint pain, then these are the caregiving burnout signs worth paying attention to. 

Caregiving Burden as defined before takes up a lot of a caregiver’s life moments, you can feel stressed easily, you can feel like everything is piling up and you have nowhere to run but at the same time feel like escaping everything. For example, if your daily schedule includes feeding, bathing, changing clothes, tracking records of doctor appointments and medicinal arrangements of a care receiver and worse if you are doing it all alone; it can start consuming your emotional health and trigger mental health issues which can lead to a dysregulated nervous system. It is essential to rely on someone to divide the tasks and have a strong backbone so that everything does not fall on you.  

Compassion Fatigue is a more serious concern amongst caregivers. It is closely associated with secondary traumatic stress through repetitive exposure to caregiving demands. If you are exposed to traumatic incidents revolving your caregiving, you might feel helpless, start to feel the need to release your pent-up anger, try to show your empathy but still won’t feel enough, you might lose your motivation or hope to take care of the affected person and start blaming yourself that “maybe, I am not doing enough.” Moreover, you might feel the inability to experience joy in life, commonly referred to as anhedonia. These signals can be managed with professional help. 

What does Research say? 

Over the decades, research has spanned considering the mental and emotional impact of caregiving. A research study concluded that more hours of caregiving and co-residing with the care recipient can lead to psychological distress, less life satisfaction, and onset of anxiety and depression. Another study discussed the absolute impact of emotional labor that often goes unnoticed. 

Emotional dysregulation showcases in the form of mood swings, guilt, emotional suppression, and grief for the care recipient diagnosed with a terminal illness. Along with emotional and mental struggles, caregivers also face social burdens. They can endure feelings of isolation, no external support or a lack of reciprocity in relationships including communication problems can often be the core of caregiving difficulties.  

Almost 90% patients in India with chronic mental illness, live with their families. This is not limited to mental illness; family members remain the sole caregivers to ageing relatives as there are limited alternative welfare facilities. To shed light on Indian society, collectivistic values like always being a part of a social group and cultural expectations can normalize the negative consequences of caregiving responsibilities. 

Caregiving duties are seen as an act of common sense and paying back to the family. Gender stereotypes like the woman should handle caring for the elderly people is relevant to the Indian mindset. Women are at most risk of burnout and fatigue due to such expectations. It can also extend into one making caregiving their entire identity or losing sense of identity in the process.   

On knowing how to ‘Care for Caregivers’! 

• Building a strong support system is important as social support, healthy relationships and resilience can protect you from the stress of caregiving. 

• Sharing the load of caregiving tasks with other family members is essential as it takes off the weight from you. 

• Boundaries should be set if you think the demands are non-essential. 

• Psychoeducation is the need of time to understand the reality of caregiving, undertake educational interventions and initiatives to manage, create awareness about coping strategies and therapeutic components.  

• You need to seek professional help if you experience warning signs discussed above which are interfering with your daily life. Counseling and psychotherapy which utilizes psychologists or therapists help you to overcome and manage the concerns related to caregiving. They help you learn healthy coping mechanisms and make sense of your experiences.  

• These coping strategies can include physical exercise, meditation, hobbies, emotional expression, sitting with overwhelming emotions and channeling them into productive activities, reframing negative thoughts into more neutral ones, etc. 

• Support groups can also provide a feeling of warmth and universality wherein, you can get opportunities to meet fellow caregivers who support you through your journey.  

• Consider Respite care as it is the promotion of taking a break from caregiving which involves in-home care or adult day care centers which will reduce your caregiver strain.  

• You can also work with the healthcare team to improve their services of case co-ordination and management of the patient. 

• For formal or professional caregivers, workshops on self and mental health care are significant to bounce back from caregiving stress.  

To conclude, our viewpoint of caregivers should move beyond the frame of only looking at them as fulfilling their duties to knowing that they are humans fighting their mental health on turbulent days but still showing up and giving their best efforts to help somebody and pave a way for them towards little glimmers of hope. 

You are not alone and it is normal to be affected by caring a lot. It is our responsibility as people and even your responsibility as fellow caregivers, to be aware and endeavour to build safe spaces and systems for caregivers from all walks of life to be seen and heard.  

Written By Khushi Joshi

Psychologist and Mental Health Advocate