Caring for Caregivers: Demands, Burden and Strain

In the United States of America, about one-third of adults are cared for by some other adult. Such objective data on caretaking is not available in our country. Caregiving is becoming a complex medical care pursuit. It has metamorphosed from an unceremonious household level affair to an extensive section of wellness protocol [1,2].
As such a caregiver is anyone who aids another person in need, that is, the people who need someone to care for themselves. Various instances include children, the elderly, and people with chronic diseases, disabled persons, and so forth. Commonly we come across a family member or a very intimate relation playing this role [1,3]. However, health care personnel, social workers, friends, and other relatives can take up the task as well [4].
This can be accomplished by some professional fellows, independent personals, private ones (who work on payment commensurate with their task), or someone belonging to a nonprofit non-governmental agency (NGO’s). A primary one is a person shouldered with the responsibility of looking after a friend or loved one who is no longer proficient enough to care for him (her)self [4]. They may be looking after children, a senior family member, a terminally ill spouse, or any friend or family member who requires assistance with daily activities [5,6].
Assignments can be as diverse as the requisites of the sufferer and may range from trivial bits of help to more intricate jobs. The concerned person ought to be practical with multitasking abilities. Physical help as with daily tasks, personal care, preparing meals, collecting/dispatching official documents and, and performing other daily domestic chores having bearing on the patient can be rendered. Other duties include companionship, transportation to a health facility, or any recreation, medical management (including punctuality regarding medication), general health care which may include physiotherapy as well. It is not uncommon for elderly patients to struggle with day-to-day tasks [7]. So, it becomes part of the duty to avoid acts that could be reasonably foreseen to injure or harm the person [8]. So, he should be always attentive and keenly observant. He must appreciate the risks and take care to prevent them from coming to harm.
This form of guardianship can be displayed by interacting and listening to the patient; being friendly, flexible, communicative, and having respect for the emotions of the patient. This will aid in confidence-building and, set in motion more intimate bonding with the person. As one goes, one can realize that patience is the most important virtue in such a tough ball game. He needs to understand that the patient is not always in control of his actions. So, he/ she should exhibit kindness, empathy, and compassion [8]. He/she should be sensitive and caring with a cheery demeanor. All these attributes qualify for healthier outcomes.
It is a substantial responsibility as well as a liability. So, the janitor should be dependable, reliable, and trustworthy. We are all familiar with the caregiving/nurturing of a baby and, undeniably, this is an uphill but pleasing task as all parents may acknowledge. However, what happens when it is needed anew in the life of a person following the cessation of the same (as the person had been savoring an independent existence for several years). There may be numerous circumstances wherein one has to face the calamities which knock down the capacities of a person, and is, thus, becoming a candidate to be looked after [6]. In such a state of affairs, the child-parent dependence/association can be said to have reborn. Though it doesn’t appear so hard a task, I suppose this renewal to be one of the most arduous toils. As a matter of fact, many details and features are swapped since. Currently, the conditions are transformed in physical essence as well as psychologically and motivationally [4]. Howsoever hard the aide may strive; most often they lag behind in one facet or the other in dispensing their commitments. However, their role can neither be underestimated nor brushed aside. Their contribution is as crucial as the primary treating physician for the long-term management and amalgamation and integration of the patient into the family and society.
Training/instruction is a very relevant aspect of this assignment-whether or not the job is being accomplished in the unerring direction [9]. Maybe the duty is being imparted in such a fashion which in due course may not bear out to be productive; it can be a part of the rehabilitative protocol (e.g., technique of performing physiotherapy, provision of nutrition, or any other care) [10]. So, some sort of training facility, at least, in the form of small booklets, pamphlets, or short demonstrations or video clips may save someone’s bacon [9]. In today’s digital (social media, e-education) age, much more can be done in this regard for the benefit of both the giver and the seeker [8,10].
Mental preparedness for this devotion can’t be ignored. Any person who is not mentally occupied in a task cannot be expected to do justice [10]. They should be time and again counseled regarding the exhausting endeavor they are carrying out. They ought to be assured that they are moving forward on the proper/right track, and it is going to fetch the desired outcome [11]. This may add to their obligation and dedication towards the holy task and invigorate their conviction in their daily apparatus.

Having said that, we focus so much on the patient that we often tend to overlook the caregivers; their emotions, feelings, needs, and so on. I mean to say that this group of work force too needs to be cared for [12]. This sounds a little exaggeration in our scenario. But it is a fact that lack of care/confidence building, and appreciation may be one of the detrimental factors affecting the outcome of the goal [13]. There can be a lot many challenges and difficulties which he/she may face. They often find less time for themselves and other family members. Personal care and privacy get sacrificed at the altar of this heavenly task. In fact, they carry out many tasks and other activities of daily living when the patient is actually sleeping. To add, sleep deprivation may be another pressing factor that, along with emotional and physical stress, may lead to depression and isolation [1,5]. The truth is that the patient wants/ expects more and more time and attention from him/her; however, bitter truth is that the care nurse is also a human being with a lot of its own needs and limitations!
Caretakers too may suffer from physical, mental, and emotional exhaustion [12]. It typically results from neglecting own physical and emotional health because they are more focused on nurturing an ill, injured, disabled one [5]. Striving to accomplish to the best of their abilities, they may suffer from burnout by feeling empowered. Carer burnout includes lack of energy, overwhelming fatigue, sleep problems, change in eating habits, weight gain/loss, withdrawal, neglecting one’s own physical needs, seclusion, and mental disorders like depression [1,12,13].

Every employment/occupation has its perks which can be financial or otherwise. But most of this home nursing is carried out by near relatives in our setup. So, it becomes a wage less job (and sometimes even a thankless job too) done for one’s pleasure and satisfaction [3]. But, if an allowance can be added to it in the form of acknowledgment, it can do wonders. Instead of being critical, they should be appreciated for what they are giving away. They entail physical and emotional support to cope with the stress of caring for an elderly person. Also, they should seek to grab some opportunities to share their challenges and difficulties with the persons in their care. This may in some sort of lead to some ease in the duty [7]. A reward in the form of a wide smile, a hug, a warm handshake can do sufficient to let them continue the task. This may work as a kick to boost motivation for the cause [14].
They should be taught to practice acceptance, embrace it as a choice way to show their love and intimacy, look for a silver lining, don’t let it take over their life, focus on control over the situation, celebrate small victories like the healing of a small sore or a little improvement in some cognitive function; imagine how the loved one would respond if they were healthy [5].
They should be appreciated, allowed to give vent to their thoughts and feelings. Others ought to listen passionately to their viewpoint. Taking a keen interest in their health needs and happiness cannot be underestimated. Encouragement and inspiration can be heralded by small activities like giving them some small gifts of their choices, asking about their engagements during the day, talking to them for some time, discussing with them, proposing them a day off from the work, and so forth [5]. Some recreational material (audio/visual, printed material like novels, journals, etc. some small handy games) may be made available so that they can spend some free time with them.
They also need adequate rest; let the other family members and friends help at times, giving them a holiday/ off. Emotional support, recognition and understanding, and time to recharge are what essentially, they need.

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