11-year old Aryan happily potters around playing with his plants. However, his mother Simren Mehn is bone dead tired.
The dark circles show up on her eyes. lack of sleep and mental and physical fatigue is a constant in her life now.
However, she is also a parent and caregiver of a child with special needs who is honest enough not to neglect the most crucial part of being a caregiver. Herself.
Who is a caregiver
A caregiver is anyone who provides help to another person in need, such as an ill spouse or partner, a disabled child, or an aging relative.
However, family members who are actively caring for an older adult often don’t self-identify as a “caregiver”.
Recognizing this role can help caregivers receive the support they need.
Self-care regimen to tackle caregiver stress
However, in the years that have passed, and after instances of caregiver burnout which she did not even recognise as such, Simren has learnt to incorporate a regimen of self-care and self-love to ensure that she does not suffer.
She learnt to recognise symptoms of stress and chalk out a lifestyle that includes some much needed me-time, that is very important to ensure that she gives her best to the child.
As Simren succinctly puts it, self care is not selfish.
A caregiver’s story
When two-month old Aryan was found to be diagnosed with the lingering case of neonatal hepatitis, Simren was left wondering why it wasn’t receding for months.
The experience of running around with an infant when even her own stitches had not healed after a Cesarean, had been physically gruelling. However, even more stressful was the uncertainty over not knowing how long the situation would continue.
It was even harder when the doctor said in cases of neonatal hepatitis, if the child lived for a year, he would survive, or not.
The neonatal hepatitis finally receded after his first birthday but left him with a neurological disorder and slow learning curve.
Initially there was a lot of physical taxation running around hospitals in Delhi, Hyderabad and Bhubaneswar. There was the added inconvenience of her husband having to shift to another city for work whereas she had to stay back.
Coping with caregiver burnout and stress
Finally, along with the fatigue came Simren’s weary realisation that this was almost a life long series of events.
In the wake of that came a lot of anger. Anger against herself, against God, against people around them.
Stress and frustration followed because Simran, though herself not a very ambitious person, was one who liked to work.
Her career had to take a backseat and she had to leave many plum opportunities that came her way. If she left the city where she was working then there would be a total collapse of a support system and she would also lose her current job.
Along with it came the unsolicited advice telling her that she should give up and devote all her time to her child.
Ways to deal with caregiver stress
After some time and a lot of perspective, she decided that even as a caregiver, it was most essential for her to get some timeout.
Particularly for the caregiver of a child with special needs with neurological disorders, which takes a great deal out of the parent, as their lives begin revolving around the child alone.
Simren made it a point to go on trips by herself with her friends.
She made a conscious effort to start taking care of her health like yoga classes very early in the morning when nobody would be needing her, or going out with movie nights with friends or simply to take off for trips by herself.
“There is a level of physical fitness that is needed for the caregiver of a special needs child. To take care of children for a longer life, we must invest in ourselves. You have to create time for yourself, there will never be enough time,” she said.
She made a conscious effort to revamp her health after she recognised that over the years the physical fatigue and the mental stress had taken a toll on her and she was actually ageing much faster than her peers.
Importance of taking breaks
She stresses the importance of taking breaks moments of breaks, say a girls’ vacation for three four days, as long as there is a support system and can be managed with the help of friends and family.
Going for a salon visit, or going alone to a mall or sometimes just taking a break from everyone and going off somewhere has helped her to cope.
Taking a stroll, making friends and reaching out to other friends has also helped her to cope with caregiver stress.
People advised her to take hour-long breaks but that was quite impractical thanks to the Covid era, when there is full time work, lack of a support system and most importantly, a child who needs therapy sessions every single day.
She asks parents to stop being guilty to take out time for themselves, particularly mothers, who are made to feel that their life and career should take a backseat once their child needs them.
Simren also learnt, “much, much later” as she put it, to take breaks, to become a selfish mom sometimes.
She asserts that if she is not happy as an individual, she cannot pass on positive vibes.
Disclaimer: This information is educational and should not be construed as medical advice. Please consult your doctor before making any dietary changes or adding supplements.
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