On my mother’s 50th birthday last year, I wished for her to pay attention to all those things that she had neglected all these years while making herself available to us – including her health, her passion for music and her career. Little did I realize that she would begin her second innings of caregiving very soon.

My grandmother was diagnosed with dementia last year and moved in with my parents. At first, the symptoms were mild and could be managed by my parents independently. However, as the days went by, my grandmother’s condition deteriorated rapidly. She now needed assistance to carry out simple tasks, like using the washroom and taking a bath. She also required continuous monitoring. Looking after my grandmother was now akin to caring for a young child. What was especially concerning for me, was the toll that caregiving was taking on my parents, their mental health and their relationship. There was also a lot of conflict within the extended family about the level of care and medical attention being extended. Sitting many miles away from my parents and listening to their predicament made me feel guilty. My defence mechanism was to intellectualize the situation and understand it in greater depth.

The case for informal eldercare in India

Longevity of life achieved through economic well-being, improved medical facilities and reduction in fertility rates has led to a spike in the proportion of elderly in India. There has not however, been a corresponding increase in requisite resources and infrastructure.

Eldercare and palliative care in India are still largely unorganized. Although it has emerged as an organized industry over the past few years, it remains largely wanting in scale and quality. The number of organized players offering assisted living facilities or even trained nurses who can look after the elderly at home, are far outnumbered by the demand for the same.

Additionally, the quality of care offered is also contentious. Even the best players struggle to attract, retain and train good nurses. What is more revealing, is that there are hardly any recognized programmes for geriatric nursing in India.

Finally, the financial burden of seeking professional help, even if it is available, is an area of concern.

Given this scenario, informal help at home seems to be the only alternative to care for the elderly. In the Indian context, more often than not, this refers to immediate family members and more specifically the women in the family.

 The caregiver’s predicament

Despite the growing need for informal care and the important role of caregivers, there is very little that is said or done for this cohort. The predicament of caregivers is quite complex and needs to be understood from various perspectives:

Challenges related to caregiver’s life stage

Most care receivers fall in the age bracket of 80-90 years. This means that their children who are caregivers are senior citizens themselves and are going through a difficult life stage. They are questioning many of their life choices and are coming to terms with their age. They are often faced with an empty nest, with children moving out or relocating to a different city or country.  This is the first layer of the caregiver’s predicament.

Caregiver’s health and well-being

A senior age implies the onset of associated health issues including diabetes, high blood pressure and other lifestyle diseases for the caregivers. In the case of women this is often compounded by the vagaries of hormonal changes and menopause.

Caregiving can contribute stress and feelings of resentment arising from having to confine oneself to the house or having to juggle multiple responsibilities.

The financial well-being of these caregivers is also an area of concern; since they are mostly out of regular employment and are quite likely tapping into their savings.

Relationship with the care receiver

This is the socio-cultural perspective that is unique to India. In India, it is considered the duty of the son and his wife to care for aged parents. A survey by HelpAge India* reveals that 60 percent of the ‘Oldest Old’ (80 years & above) depend on their daughter-in-law, while nearly 50 percent depend on their son for helping them with daily routine activities.

 This is a practise that has been carried out for decades and is considered part of family tradition. However, with the passage of time these relationships gather their own baggage and make relationships between caregivers and care receivers very complex. The disintegration of the joint family and the rise of nuclear families add an additional layer of complexity to the mix.

 Absence of sound support systems

As mentioned earlier, despite the growing acceptance of seeking professional help for the aged and using assisted living facilities; cost and quality considerations remain deterrents and continue to discourage caregivers from taking advantage of these facilities.

How to care for the caregiver?

Having understood the context and current state of professional eldercare in the country, it is safe to conclude that the reliance on informal caregivers is here for the long haul. Given this scenario, it is important for caregivers to come up with innovative ways to look after their mental and physical well-being while caring for their loved ones. The following are a few alternatives that may be considered:

Support groups

The need to be listened to non-judgmentally and be understood is probably the greatest need for any caregiver. This need can be effectively addressed with the help of formal/ informal support groups within the neighbourhood. This exercise has been carried out by a few NGOs with a lot of success.

Volunteers

College students can be employed as volunteers by local NGOs or assisted living facilities. These students can volunteer a few hours of their time every day to supervise and care for elderly citizens in their locality. This time can be utilized by caregivers to engage in activities that they enjoy or simply to get some rest. These student volunteers can also help in carrying out tasks such as re-stocking medication, buying groceries or making trips to the bank for the caregivers and care receivers.

Creating an ecosystem of help

It is important to enlist as many family members or members of the immediate network in caretaking responsibilities. Carrying out all responsibilities alone can be quite an arduous task for any caregiver. Taking the support of children, neighbours or domestic help for a few hours a day can really ease the load of caregivers.

Equipping oneself with knowledge

In the case of most ailments that plague care receivers, particularly those which affect the mind and lead to cognitive impairment, it can be difficult for caregivers to understand their loved ones. It becomes hard for them to understand when the care receiver is acting out because of the mental condition versus when they are merely being difficult.

In such cases it becomes especially important for caregivers to equip themselves with enough knowledge and develop a more clinical and logical approach. This would also make caregivers realize that they are not alone in their experiences.

Coping strategies

Psychological literature on coping with the stresses of caregiving suggests the adoption of two coping strategies for caregivers:

  • Problem focused coping strategies – These strategies focus on the root cause of the problem and aim at reducing or removing the stressor using practical approaches. These strategies could include enlisting social support, gaining information about the problem or planning schedules and activities
  • Emotion focused coping strategies – Emotion-focused coping involves trying to reduce the negative emotional responses associated with stress such as fear, anxiety, depression, excitement and frustration. This is especially useful when the source of stress is outside the person’s control. It could include distracting oneself with other activities or emotional disclosure like keeping a journal or sharing with a confidante.

Research shows that caregivers who do not experience burnout are more likely to utilize problem-focused coping strategies (e.g. confronting the problem), while caregivers who experience burnout are more likely to use emotion-focused or avoidant coping strategies#.

Hence, the most critical strategy for caregivers is to use problem-focused coping strategies or a dexterous mix of problem and emotion-focused coping strategies to come to terms with their predicament.

What this exercise has helped me realize is the importance of planning well ahead for the eventualities of life.

And my only concluding tip for caregivers is – “Know that you are certainly not alone and that like Love, Caregiving will one day be its own reward!”

References

*The State of Elderly in India Report 2014, HelpAge India.

#Branscum, A. (2010). “Stress and coping model for family caregivers of older adults”, Iowa State University Capstones, Theses and Dissertations.

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