I have seen three generations of caregivers: my grandfather who tended to his wife, my mother who was the caregiver to my father, and my cousin’s wife who is attending to my cousin. Each is a story of immense strength and commitment. As stories go, there isn’t a single story in each one; much depends on who you talk to, and seeing a slice of a day in their lives – you get a peek into and whose side you are on. In family, there is no neutral ground – someone is a favourite, and the other, a source of annoyance. Also, it matters who the narrator is. That is the way it is.  

The caregiver is generally unwaveringly committed to the patient’s welfare, and where the ailment is not terminal, to a full recovery.

This role willingly taken, typically pushes other roles to the background and may cause little stress from competing demands. Sometimes, the caregiver deems the role a privilege, an act of gratitude or simply in line with a desire to serve. There is inner strength, quiet and a willingness to be in-step with the patient rather than ‘force the pace’ or ‘change the course’.

However, when the caregiving role is thrust by circumstances or socially determined expectations, it generates silent resentment, impacts caregiving and takes a toll on relationships. The caregiver tends to be impatient, even intemperate, inattentive and plays the victim.

I have seen a caregiver’s unflinching devotion in making the patient comfortable where the patient is barely ‘present’, with a language of silence and a dictionary of the barest expressions sufficing to address their needs, the daily routines marked by silent acceptance all around and punctuated by soulful chants.

I have also seen the ‘never-say-die’ caregiver taking a vigorous and combative approach against disease and ailments, sworn to positivity, approaching caregiving with missionary zeal. This caregiver loathes a patient’s dull moments or despondency, and exhorts the patient to try, try, try again. Often, this infection of optimism, energy and egging, however well-meaning, can exhaust the patient and trigger excuses, subtle resistance and non-cooperation, a feeling of unshakeable dependency and captivity, helplessness and oppression.

The zealous caregiver targets the ailment as (‘as if’) an adjunct to the medic, assiduously researching diets, exercise, medication, and alternative therapeutic approaches. The patient even if wary goes along not wanting to dampen the caregiver’s enthusiasm, even allowing oneself to be buoyed by cheerful reports and anecdotal evidence of improvements or success. However, the demands made on the patient at times betray a certain lack of sensitivity to the patient’s condition or readiness and thus are seeds of discord sown. Tempers rise, accumulated stresses all around erupt into angry accusations of non-cooperation from one and of indignity from the other fly thick. Everyone is aggrieved and there are loud protestations that each is doing the best possible. Residual feelings of not having been fully appreciated or understood mingle with hurt, guilt and exhaustion, and linger for a while till there is an inner reset, a reconnection with the caregiving role and the commitment to the patient’s recovery and wellbeing.

The activist caregiver redoubles efforts to wage battle and moves with a clear goal to retrieve the patient from the clutches of the enemy – disease, ailment, disability, Yama, whatever. The patient demonises the caregiver as a relentless, unfeeling monster who is unmindful of the discomfort or difficulties caused. The caregiver challenges the patient’s commitment to recover and can be relentless in having the patient do as told. After the earlier episodes of friction, the patient’s lack of cooperation is assumed and the caregiver’s tone develops an edge; an appearance of nagging laced with guilt-tripping.

Family and friends enter the picture as relief.

For the caregiver, they often provide an opportunity to share fears, cribs, and frustrations. It also brings possibilities to garner allies and have visiting family and friends convey concerns and key suggestions for much needed cooperation from the patient. These occasions are a bit like a drinks break in a marathon game rather than the game’s end. The caregiver therefore doesn’t allow expression of one’s sadness, despair, hopelessness, or exhaustion. At times like this, it is common for the caregiver to complain about the patient as fussy, tantrum-throwing and wilfully disobeying any demands for effort from the patient. It sometimes becomes necessary to remind the caregiver at this stage that the patient is not the problem, but one who has a problem.

Patients can be cruel to caregivers at times in the presence of family and friends. They use such occasions to vent about the tyranny of the caregiver, how much they have suffered at the hands of the caregiver and how they have been rendered guinea pigs; tested daily with new and exotic diets, herbs, washes, baths, massages, exercise routines… ‘If I don’t do as asked, it is because I am unable to. Is this so hard to understand?’, is the plea. ‘Of course, I want to get better. How unfair to even remotely believe that I refuse something because I don’t wish to get better. How stupid is that?’, comes the argument. ‘Sometimes I feel I should just be allowed to be’, and this evokes the image of the patient kicking and screaming while being pulled, pushed, or dragged, in a manner of speaking.

Often, the caregiver is very intimately familiar with the patient: history – medical and otherwise, needs, patterns of behaviour and idiosyncrasies – so much so that it seems impossible to welcome a substitute, however temporary. It may well be just arrogance rooted in the belief that none can understand the patient or render care and support as well as the caregiver. Or the deepest apprehensions that should something go wrong, accusations of negligence and some imagined deficiencies in caregiving might be hurled. As a consequence, the caregiver denies to oneself what is most deserved – rest and a good night’s sleep.

Caregiving is hard. It asks for vigilance and sustained attention for days without end. Every so often, nights are challenging, the patient turns restless and cranky, gnawing away at the threshold of the caregiver’s patience, treating sleep as an unwelcome guest to be kept at a distance. The patient at some stage might just decide to quieten down, even doze off, exhausted, or under the influence of medication. The caregiver hangs in the in-between space between drowsiness and alertness, and seldom feels rested. This evolves into a chronic state, difficult to shrug off and is tinged with guilt when on occasion the body simply gives in to a nap or extended sleep. It is never easy later to resolve the feeling that one has been derelict, or to perish the thought that one might have allowed calls for some help from the patient go unheeded.

It is hard to get it right. Caregiving is so often powered by adrenaline that the caregiver loses the ability to rest. Needs of the self are postponed, suspended. Other roles played by the caregiver tend to be relegated and languish.

Reconstructing a life after the caregiver role is relinquished requires dealing with the accumulated stresses, and feelings of pain, hurt, self-neglect, bitterness, guilt, and disappointment or relief, happiness, joy, satisfaction, as the case may be. There is emptiness that is a call to just be, till one feels the urge to meet life and its evocations once more, to carry forward the lessons that caring teaches us and share it around as you might do with the fragrance that you carry wherever you go.

While caregiving is not new, I first understood the caregiver role in some detail from my friend, Bhavana Issar. She founded Caregiver Saathi, an NGO in India that is committed to addressing the specific needs of caregivers and fostering their wellbeing. To know more about caregiving and how you can support caregivers, visit caregiversaathi.co.in.

Image from Pixabay.