As a primary caregiver to her mother with Alzheimer’s, Latha, (name changed) had a tough and stressful life. However, it had also become a routine for her, something that she had settled into or at least that is what she thought until one day, she felt disoriented and cold. When she went to the doctor, he told her she had experienced an anxiety attack. He told her that it was common in someone who had been caregiving for a long time and was in trauma subconsciously.  

How did this happen? Was everything not alright until then? 

This is what caregiving is about, a round-the-clock job and largely thankless. It makes the person forget to take care of their own health and well-being. While it teaches a person to be resilient and patient, it also brings a lot of guilt and denial – and over time, can affect mental health. When a person has been left decapitated due to some illness or when there is an elderly at home, they need constant care and attention for many days and sometimes months. This kind of dedicated service requires commitment and puts a lot of pressure on the caregivers’ mental and physical health. On the one hand, there is the frustration of compromising on one’s social and personal life; there are also other factors in play. According to research, more than 25 per cent of caregivers suffer from severe stress and fatigue, leading to lack of compassion and empathy towards their patient. 

While institutional caregivers receive training, those at home do it on their own, based on understanding. From administering intravenous fluids and injections to giving medications, they take up responsibilities for which they are not skilled. This brings the fear of something going wrong and can wreak havoc on their mental health. Home caregivers are not paid for their service and their unstated duty fails to illicit a simple ‘thank you’. All this is what is called caregiver burden and affects their overall quality of life. They can experience emotional fatigue, physical exhaustion, and burnout. There are no guidebooks that can tell a caregiver how to function under difficult circumstances since it is all a matter of trial and error.  

Institutional caregivers face different challenges. They are prone to problems due to insufficient funding, poor infrastructure and resources and are sometimes expected to work for hours without any breaks. When someone is constantly surrounded by ailing patients, it can cause depression and other mental problems over time.  

Here are some suggestions on what can be done to overcome these challenges.  

Back-up plan 

Caregivers are as human as anyone else and should be allowed some “me time”, wherein another person can take charge briefly. Many caregivers deny themselves this opportunity since they fear that it can have repercussions on the patient. This is where reassurance from the family can come as a help and offload their stress albeit briefly.  

Basic respect 

As mentioned earlier, care giving is a thankless job. Caregivers must feel respected for their work and having someone to just listen to them can be a huge support. Make sure to talk to them and give them the space to take an emotional break periodically. Going beyond the perfunctory can help break the ice and bring to the surface, their concerns, inhibitions and fears. Often, what caregivers need is not advice but support.  

Training and assistance 

Informal caregivers are mostly working out of their instinct without any training. Even basic can empower home caregivers. Often, caregivers may be hesitant to ask for help. However, there is quality and affordable, trained assistance or specialized end-of-life care (hospice) facility available if needed – even in the comfort of one’s home.  

An organised community of caregivers 

Given the rise in non-communicable diseases and the population of elderly, India is staring at a care giving crisis. In the last decade or so, the number of elderly who require assistance has tremendously increased. We are also witnessing a cultural shift in terms of the acceptance among elderly and families in general for institutional care giving and retirement communities.  

Institutional and home care giving  

The growing demand has opened up new avenues for caregivers at home and in institutions today, there are health tech start-ups that offer specially trained nursing and care giving assistance to the elderly and people with illnesses at home. Irrespective of the ailment, these caregivers are trained to be empathetic and loving. Their training also entails ensuring mental stability and understanding the demands that care giving brings.  

Technology as an enabler  

Today, there are wearables and other devices that can help in analysing patient vitals and automating other tasks. Home healthcare companies are enabling the use of these technologies to offload the burden on home caregivers thereby allowing them more time to perform tasks that essentially require human touch. Patient-facing mobile apps, home-based connectivity and digital platform integration are making life easier for both patients and caregivers.  

Building a strong organized framework 

Formal care giving is rapidly evolving from a large custodial institutional set up to a more community-based care system. Many organizations are stepping up to address the problems associated with unpaid care giving. There is also an urgent need to create awareness among people about the existence of such a formal support system so that the true potential of this segment can be tapped into.  

When selfless care giving gives way to frustration, the life of a caregiver can start sliding downhill. Relieving stress is not a luxury for caregivers but is essential and urgent need of the hour. Just as in the case of an aircraft emergency, where we are told to put on our oxygen masks first before helping others, caregivers should also be trained and taught to care for themselves first. This and other measures as mentioned above can go a long way in addressing the mental health burden of caregivers.