Caring for the caregiver
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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