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• Personal Growth

October 2022

Caring  for the  caregiver 

This article by Bijal Maroo explains the ordeal  that caregivers face and how they can make their  

arduous tasks more manageable

It is better to die than to live this kind of  a life.” These are the words of a middle aged man (let’s call him Rehan) who had  slipped into the throes of depression. Life dealt  him a huge blow when his wife was severely  immobilised due to parkinsonism. Suddenly,  life had taken a 180-degree turn.  

Rehan found himself looking after all his  spouse’s needs as well as undertaking household  responsibilities while continuing his work. He  was so short on time that he had to manage on  just four-and-a-half hours of sleep. He had to  forgo his daily walk, as all his time was spent  preparing meals for the family. This added  burden took a toll not only on his health but  also his income. He was forced to cut down on  his business activity, and the quality of his life  suffered. His wife’s ailment being incurable,  there was no hope of a normal life again. His  thoughts fluctuated between wanting to end  his life and wanting to stay alive to look after  her. 

Many times, life springs an unpleasant  surprise on us. A responsibility that we least  expect is thrust upon us. A family member  takes ill or a special child arrives in our midst.  The responsibility of looking after them, and  even anticipating all their needs, falls on our  shoulders.  

A ‘caregiver’ looks after a person who cannot  look after themselves, e.g., an ill, disabled, or  ageing person. In India, this responsibility is  mostly taken on by a family member, as we  rarely consider hiring a professional caregiver.  We, as a society, are largely unaware of this role  and the fallouts of the same. Hence, the plight  of the caregiver goes unnoticed. They end up  feeling like they are on an endless treadmill.  

I experienced this first-hand when a spate of illnesses hit my family members. Like a  nightmarish relay race, all three of them fell ill,  one after the other. My mom needed cataract  surgery, and my dad came down with lumbar  spondylosis. Next, my sister suffered a vertebral  fracture, followed by my mom needing a biopsy  to diagnose her post-menopausal bleeding.  

I had to wake up at odd hours to help them with  their medicines and their biobreaks. There was  no time to sleep, leave aside any daily exercise.  I was constantly edgy. 

Luckily for me, this bad dream ended within  three months. However, most caregivers  grapple with this burden day in and day out,  with the end nowhere in sight.  

I spoke to a few people in a bid to try and  understand their arduous journey: Hemali,  a psychotherapist and Arts Based Therapy  practitioner, is playing caregiver to her bedridden mother-in-law. Jay Mehta, a tuition  teacher, opened up about how she looked  after her dyslexic daughter. Trupti Saraiya, a  life skills counsellor and Arts Based Therapy  practitioner, stepped into the caregiver role a  few years back. She nursed her mother back to  health from cancer. At present, she looks after  her mother-in-law, who is recovering from  bilateral hip fractures. Rehan is the fictitious  name of a caregiver who tends to his wife, a  patient of parkinsonism. Poorna Toprani, a  creative art therapist, working at a residential  care home in the UK, shared her observations  about her colleagues who are professional  caregivers. 

A caregiver faces challenges at five different  levels: 

• Accepting the diagnosis  

Jay Mehta refused to accept that her only  daughter was dyslexic. She herself had been a  

high achiever academically, and the diagnosis  came as a rude shock to her.  

Rehan researched his wife’s early-onset  parkinsonism. The grim future she faced, of  being permanently bedridden, robbed him of  his will to live.  

Hemali was engulfed by guilt pangs when  she took the momentous decision of stopping  her father’s chemotherapy a few years ago.  Her father was suffering more from the side  effects of the chemo than from the cancer  itself. Though she knew it was the right choice,  she was constantly plagued by the guilt that  her decision might have sent him to his grave  faster.  

• Physical health  

Poorna highlights the occupational hazards of  her caregiver colleagues. Many of them suffer  from backaches, as they have to constantly  

bend and use hoists to assist patients.  

• Mental health 

The caregivers grapple with the unfairness  of life while asking questions such as “Why  me?” Many a time, they are at the receiving  end of criticism from the patient and relatives.  They are told that they are not doing enough,  triggering seething anger. Some family  members shirk their responsibilities towards  the patient and continue their life unhindered.  This leads to immense resentment and jealousy. 

According to Poorna, even professional  caregivers may experience anger or guilt.  Sometimes, patients are demanding when  the caregivers have more patients on their  hands than they can effectively handle. The  long work hours and having to listen to the  patient’s choice of music all day can cause  irritability and resentment. They are also  subject to the secondary trauma of having to  

Caregivers need to be heard, supported, and appreciated for the sacrifices they make inorder to take care of an ailing family member

The caregivers grapple with the unfairness of life while  asking questions such as “Why me?” Many a time,  they are at the receiving end of criticism from the  patient and relatives. They are told that they are not  doing enough, triggering seething anger. Some family  members shirk their responsibilities towards the  patient and continue their life unhindered. This leads  to immense resentment and jealousy. They face so much illness, disability, and death  daily. Professional caregivers live in constant  fear as the patients can sometimes get violent,  completely unprovoked. Patients in the throes  of their senility and dementia end up soiling  the furniture or the floor. Thus, the caregivers  are saddled with an increased workload of  cleaning up. 

Hemali has observed many caregivers of  cancer patients undergoing treatment in  civic hospitals. As they end up living on the  streets, the resultant mental trauma makes  them blame the patient and curse them with a  “why don’t you die?” Often, they think aloud,  “What a sinner I am to be stuck in this hellish  situation!”  

• Career and finances 

Trupti did not feel the pinch financially, as  her mother-in-law was covered by medical  insurance. However, Hemali and Rehan  experienced their finances dipping drastically,  as they were forced to cut back on their work.  Hemali and her husband are a contented lot,  which helped them come to terms with their  situation. Rehan rues how most of his already  depleted income finds its way into the pockets  of doctors and pharmacists.  

• Relationships and social life 

A lack of time and understanding can cause  a lot of collateral damage in other close  relationships. It can drive a wedge between  spouses and cause rifts between parents and  children. Many a time, friendships too get  crucified at the altar of sacrifice.  

Rehan started avoiding socialising, as taking  his wife along was impossible for him. This  social isolation aggravated his depression.  

Hemali and her husband take turns to attend  social events. They cannot even travel in  tandem and are forced to vacation alone. 

Someone once said, “You cannot pour from an  empty cup.” 

Caregivers need to find ways to revitalise  themselves in order to care better for their  patients. Here are a few pointers which can  help caregivers in their journey: 

• Accept all negative feelings  

Trupti would frequently sit down with herself  and let all her feelings about her ordeal  surface. This self-compassion helped her feel  compassion for her mother-in-law. She also  realised that life offers no guarantees and that  she might find herself in the same situation  as her mother-in-law. In the light of these  insights, she made sure that her mother-in-law  was treated with all the dignity and respect  that she deserved.  

Hemali also made a conscious choice to look  after her mother-in-law after she accepted and  dealt with her anger and irritation completely.  Now, she reaches out to her clique of  psychotherapist friends every time she needs  to vent her feelings.  

• Seek help 

One can hire professionals to lighten one’s  burden. Jay Mehta had no stamina to take up  her daughter’s studies after a hard day’s work.  So she enlisted the services of a tuition teacher  who understood and catered to her daughter’s  needs. She was then able to spend quality  time with her daughter, instead of perennially  fretting over her studies.  

However, many times, prohibitive expenses  can prove to be a deterrent. Then, one can  solicit the help of relatives, neighbours, and  friends.  

Rehan’s son took advantage of the WFH (work from-home) culture and learnt cooking. This  provided much-needed relief to Rehan.  

Both Hemali and Trupti are very grateful for  supportive spouses and children. Hemali’s son  and spouse help to carry her mother-in-law to  the bathroom.  

Trupti acknowledges how her friends and  extended family sometimes pitch in to stay  with her mother-in-law so that she can spend  quality time with her husband.  

However, Hemali wisely advises using all these  resources (friends and neighbours) sparingly,  to be called upon only in emergencies. 

• Create healthy boundaries 

When the resentment builds up, anger often  gets directed at the patient or the immediate  family. Slipping into the caregiver role was  doubly difficult for Hemali, as she shared  a strained relationship with her mother-in 

law. Hence, she created a physical distance  between the two of them. She says it is  important to define what is acceptable and  what is not, how much or how little you are  willing to do. Her mother-in-law was not only  bedridden but suffered additionally from  Obsessive Compulsive Disorder. Giving in to  her demands meant risking her own sanity. So,  Hemali refused to indulge her obsessive needs.  

Trupti says that one can say no, but there is no  need to be harsh or rude. 

• Communication 

Trupti was compelled to wake up more than  2–3 times every night to change her mother in-law’s diapers. The lack of restful sleep made  her short-fused. Her anger and resentment  were directed at her ailing mother-in-law. Her  husband was blunt enough to confront her and  told her that she was no longer her usual caring  self. This forced her to take stock and make  peace with her situation.  

Hemali could not forgive or be loving to her  mother-in-law because of their past history.  Instead, she discharged her duties more out  of compassion and a sense of responsibility.  Having an honest conversation about this  with her husband helped strengthen their own  relationship. She also realised that she could not take her son’s help for granted and made  it a point to ask him about his convenience  every time she solicited his help to babysit his  grandmother.  

• Employ useful hacks  

Hemali uses a face mask and applies Vicks  VapoRub to her nose to overcome the offensive  odour emanating from her mother-in-law’s  soiled clothes while she gives her a daily bath. 

Jay Mehta came up with jingles to aid her  daughter’s memory. She also tried enacting  and breaking down complex information into  bullet points to help her grasp new concepts.  

• Join support groups  

Trupti recalls how her mother would use her  time in the waiting room to chat up fellow  cancer sufferers. They exchanged useful tips to  tackle day-to-day difficulties, unique to their  own situation.  

Hemali had observed a group of mothers,  who waited as their children went in for  chemotherapy sessions. These mothers  laughed, sang songs, joked, and pulled each  other’s legs. Thus they relaxed before the roller  coaster ride started all over again. 

• Look after yourself 

A month was all Trupti took to realise that she  needed to be strong to discharge her duties  well. She immediately went back to her self care routine, which has held her in good  stead. She is grateful to her extended family  who frequently arrange online socialising, in  keeping with the pandemic trends. Thus, she  

can let her hair down and keep her sanity.  Hemali too vouches for the same. Though  earlier she walked in the park, she now takes a  walk on her terrace. In this way, she is within  earshot in case her mother-in-law needs to  reach out for help.  

She also advocates indulging in a hobby for at  least 15 minutes daily. This me-time can help  keep your spirits from sagging.  

• Spirituality 

Jay Mehta credits her guru Rakeshbhai’s  satsangs (spiritual gatherings) on Jainism for  the strength to overcome her challenges.  

“A negative experience is only a positive  experience in need of translation.” 

Trupti now shares a much better equation with  her mother-in-law. Rehan has re-prioritised his  life and spends much more time with his wife,  creating happy memories. Hemali has decided  to use her experiences to help any newbies ease  into their role as caregivers.  

Mahatma Gandhi once said, “The best way to  find yourself is to lose yourself in the service of  others.” There can be no better words to sum  up a caregiver’s journey. 

An Arts based Therapy practitioner, Dr Bijal Maroo is a homeopathic consultant,  counselling and health psychologist since 20 years. She reflects on life through  her gifts as a writer, poet and singer. Contact- drbijjalmaru@rediffmail.com or  visit www.drbijalmaroo.com 

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