At some or the other point in our lives, most of us become caregivers.
Caregiving generally involves taking care of someone who is either a geriatric, mentally or physically disabled or diagnosed with a terminal disease that makes them unable to perform the activities of daily life by themselves.
The recipient of care could be an elderly person, an adult or a child, while the caregiver could be the patient’s partner or spouse, parent, adult or minor children, sibling, any other relative, friend or even neighbour. Caregiving is not restricted to caring only for an old person. It is important to understand that the person supporting the patient is a caregiver regardless of the patient’s age.
Sometimes, one may employ a nurse or a helper equipped with medical knowledge to help with the caregiving. But in most cases, the bulk of the responsibility falls on one or more family members. For instance, if a married woman in her 40s needs care at home after a stint at the hospital, her husband would be mainly responsible for her daily activities and would be her primary caregiver. Her teenage daughter would support her father in taking care of the woman, and would be the secondary caregiver.
The roles and responsibilities of the carer broadly encompass:
• Seeing to the health, hygiene and nutrition of the patient.
• Supporting them with their everyday activities such as cleaning their surroundings or shopping for their essentials.
• Supervising or handling the timely administration of medication and support with any other medical procedures.
• Ensuring comfortable living arrangements for the patient; and
• Ensuring that the care recipient has access to companionship and entertainment.
The magnitude of such constant, hands-on care of another person poses several major challenges for the caregiver. First, being responsible for the recipient’s physical, mental and emotional wellbeing means the carer has little to no time for themselves. The second chief cause of stress is finance. Medical treatments are expensive and can strain a family’s financial income, causing further conflicts within the family. The third major factor is the carer(s) neglecting their own health and wellbeing because they believe that thinking about their own needs is selfish when another person is dependent upon them. In fact, many times it doesn’t even strike them that they should be looking after their own needs too. A fourth factor affecting the carer is not knowing whom to turn to for support.
In addition, there are other unique stress factors depending upon the type and needs of the patient. For instance, a carer for a geriatric will face different hurdles as compared to those faced by the carer of a cancer patient, a disabled person or someone suffering from dementia.
As a result, the physical strain and emotional stress of being a carer has a high impact on their mental and physical health.
It is extremely important for the caregiver to take out enough time for themselves to focus on their own wellbeing. Some methods of coping include taking regular breaks to participate in activities not related to caregiving, attending caregiver support groups, seeking the help of a counsellor or a mental health professional, and regular health check-ups to avoid neglecting one’s own health.
A couple of points must be emphasized here. First, it is vital to self-identify as a caregiver instead of defining themselves in terms of their relationship with the care recipient (i.e. spouse/child/parent etc.). This is imperative because being in denial about the patient’s condition makes it much harder to cope with the role of a carer. Moreover, if the carer does not identify themselves as a caregiver, they may not know where to look for the support a caregiver requires.
Second, it is very important to remember that being a carer is not that person’s only and entire identity. They are first and foremost individuals by themselves, with their own lives and needs. Most of the information, support and resources available are aimed at helping the carer cope so that they can continue to function as a competent caregiver. Resources aimed at the personal benefit of the carers themselves are sorely lacking.
The importance of these two points can be inferred from the fact that a considerable segment of caregivers around the world comprise of child/young carers (i.e. children aged 5-18 who care for an adult family member) and sandwich generation carers (i.e. adults who care for their aged parents while simultaneously supporting their children).
According to the BBC, there were 244,000 young carers in England and Wales in 2013 – nearly a quarter of a million. And a 2013 report by the Pew Research Centre on sandwich generation carers in the United States says 47% of American adults aged 40-60 years care for an elderly parent while simultaneously raising a child (below 18 years) or financially supporting an adult child (above 18 years). Similar figures for India were hard to find, but one gets an idea of the sheer number of carers across the world who need support.
The responsibility of caring for an adult is often well beyond the scope of a child or a young carer, and it negatively impacts their education as well as depriving them of their childhood. Sandwich generation caregivers bear the responsibility of supporting two generations of family members with vastly differing needs, often leaving them with no time for themselves. Such carers especially need access to emotional support and sometimes, financial support as well.
With the stigma surrounding mental health issues, many suffering from a mental health disorder such as depression, anxiety, or panic attacks do not access help for it. This prevents those most in need of professional support, like caregivers, from reaching out.
But caregivers need to remember that in order for them to be able to continue supporting the patient in their care, they must give their own physical and mental health importance as well. Taking care of themselves will make them a better caregiver, not a worse one or a selfish one. After all, you can’t pour from an empty cup. You need to take care of yourself first.
*With inputs from caregiver.org, BBC, and Pew Research Centre
**The authors of this post are Maitreyi Nigwekar, Founder & CEO of Adveka Foundation and Samyukta Maindarkar, Editor & Content Manager, Adveka Foundation.