Life can spring an unpleasant surprise on us. A family member becomes seriously ill, or a special child arrives in our midst. It is important for caregivers to find ways to revitalize themselves to care better for their patients and for the sake of their own well-being.
“It is better to die than live like this!” These are the words of a middle-aged man, Rehan, who slipped into depression. Life dealt him a huge blow when his wife was severely immobilized due to Parkinsonism. He found himself looking after all his spouse’s needs and handling household responsibilities in addition to his work. This took a toll not only on his health but also on his income as he was forced to scale down his business. His thoughts fluctuated between wanting to end his life and staying alive to look after his life partner.
Many times, life springs an unpleasant surprise on us. A family member takes ill or a special child arrives in our midst. A new responsibility that we least expected is thrust upon us.
A ‘family caregiver’ looks after a relative who cannot look after himself, for example, an ill, bedridden, disabled, or aging person. I experienced this firsthand when a spate of illnesses engulfed my family. Like a nightmarish relay race, both my parents and sister fell ill. I had to wake up at odd hours to help them with their medicines and bio-breaks. I was constantly edgy.
Most caregivers grapple with this burden day in and day out, with no end in sight. We, as a society, are largely unaware of this role and its fallout. Hence, the plight of the family caregiver goes unnoticed.
I spoke to a few family caregivers to understand their arduous journey.
Hemali, a psychotherapist and art-based therapy (ABT) Practitioner, is playing caregiver to her bedridden mother-in-law.
Jay Mehta, a teacher, looks after her dyslexic daughter.
Trupti Saraiya, a life skills counselor and ABT practitioner nursed her mother back to health from cancer. Now, she is helping her mother-in-law who is recovering from bilateral hip fractures.
Rehan (name changed) tends to his wife, a patient with Parkinsonism.
Family caregiver’s 5 challenges
1. Accepting the diagnosis
Jay Mehta refused to accept that her only daughter was dyslexic. Jay is a high achiever academically, so the diagnosis came as a rude shock to her.
Hemali’s father was suffering more from the side effects of chemotherapy than from cancer itself. Yet, she faced guilt pangs when she stoically terminated her father’s chemotherapy.
2. Physical health
Muscle aches plague many caregivers as they have to lift patients manually for their bath and toilet needs. As their exercise and meal timings go for a toss, their own health suffers.
3. Mental health
The caregivers grapple with the unfairness of life while asking questions such as, “Why me?” Often they face criticism from relatives who continue their life unhindered. This trigger seething anger, resentment, and jealousy in the caregiver.
4. Career and finances
Medical insurance helps cover costs to an extent. However, Hemali and Rehan experienced their finances dipping drastically as they were forced to cut back on their work. Rehan rues how most of his already depleted income finds its way into the pockets of doctors and pharmacists.
5. Relationships and social life
Sheer lack of time and understanding can cause a lot of collateral damage to other relationships. It can drive a wedge between spouses and in parent-child equations. Friendships too get crucified at the altar of sacrifice.
Rehan avoided socializing as taking his wife along was impossible for him.
Hemali and her husband take turns attending social events. They cannot travel in tandem and are compelled to vacation alone.
8 TLC hacks for caregivers
You cannot pour from an empty cup, as they say.
Caregivers need to find ways to revitalize themselves to care better for their patients. Here are some key TLC (tender loving care) tips.
- Accept negative feelings
Trupti would frequently sit down and let all her feelings about her ordeal surface. This self-empathy helped her feel compassion for her mother-in-law. She also realized that life offers no guarantees and that later in her life she might find herself in a similar situation. So, she made sure that her mother-in-law was treated with the dignity and respect that she deserved.
Hemali reaches out to her 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 hired a tutor. She was then able to spend quality time with her daughter instead of fretting over her studies.
However, the expenses on outside aides can prove a deterrent. An alternative is to elicit the help of relatives, neighbors, and friends. But Hemali advises resorting to friends and neighbors only in emergencies.
- Create healthy boundaries
When the resentment builds up, anger often gets directed at the patient or one’s immediate family. Slipping into the caregiver role was doubly difficult for Hemali as she shared a strained relationship with her mother-in-law. Giving in to her demands meant risking her own sanity.
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.
Trupti says that one can say no without being 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 Trupti short-fused and direct her anger at the old woman. Her husband was blunt enough to confront her which forced her to take stock and make peace with her situation.
Hemali realized 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 elicited his help to babysit his grandmother.
- Find new hacks
Hemali uses a face mask and applies balm to her nose to squelch the offensive odor emanating from her mother-in-law’s soiled clothes while giving her a 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 the girl grasp new concepts.
- Group support
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 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 realize that she needed to be strong, to discharge her duties well, and immediately went back to her self-care routine. Her extended family frequently organized online meetings to help her let her hair down.
Hemali loved taking walks in the park. Now she takes walks on her terrace to be within earshot in case her mother-in-law needs help. She advocates indulging in your hobby for at least 15 minutes daily to keep your sanity and prevent your spirits from sagging.
- Spirituality
A negative experience is only a positive experience in need of translation – is a well-known motivational quote.
Jay Mehta credits her guru’s lectures on Jainism for the strength to overcome her challenges.
Trupti now shares a much better equation with her mother-in-law. Rehan has re-prioritized his life and spends time with his wife, creating happy memories. Hemali uses 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.
A version of this article first appeared in Life Positive magazine (LifePositive.com)
Photos courtesy Pexels
