Health

How to provide care for the caregiver

The person in the wings is often overworked to the extent that daily stressors add up to put huge pressure on their minds and bodies. Here’s how to cope

Devanshee’s (name changed to protect identity) favourite part of the day is the three hours she spends with her mother, after coming back from her 9-to-5 corporate job. They sit on the couch, watch Friends together, and eat good food. Often, they swap family gossip and stories of office politics. Devanshee tells her mother about the decisions she has to make, and her mother gives her advice. “In those moments, she feels like my mother again, and not a patient.” For most of the time, it is Devanshee who is looking after her mother, who has bipolar disorder, and muscular dystrophy.

Dr MR Rajagopal, Chairman of Pallium India, calls caregivers the ‘unseen martyrs’. In the case of people requiring long-term care — be it bipolar disorder, Parkinson’s, stroke, palsy, autism, or even old age — the duties we expect nurses to perform, often fall on the shoulders of family members. “In India, it’s particularly harsh on women, as daughters-in-law are expected to care for the family without being asked,” he says. Though people would, take care of their family members, out of either love or a sense of duty, he says, “We need to recognise the level of stress the caregiver too may be under.”

Stress on the body

“When I am around my mother, I always have to be on my toes,” says Devanshee. Since her mother can’t move around, she has to be at her beck and call, in case her mother needs anything. “There are days I’d rather be lost in my own world, and get irritated that I can’t.”

How to provide care for the caregiver

Saraswati (name changed to protect identity), a woman in her late 40s, has spent the past decade taking care of her mother-in-law, who is in her 70s, and has had recurring kidney problems. She helped her through the dialysis, and post her kidney transplant. “I have to constantly be around in case she needs me. It can be small things like handing her something, folding the bedsheets, helping her wipe off after a bath, bringing her dinner, but when you add all that up… I can never be ‘off-duty’,” she says.

What you can do

Rest is crucial, says Dr Rajagopal, for a caregiver. A few hours of rest in a day should be chalked into the schedule. Try as much as possible to catch up on lost sleep.

If a full-time nurse is out of your budget, get professional nursing aids for a few hours of the day. Ask for help. Other working family members may offer to chip in, take shifts, let the entire burden not fall on one person.

When you take time off, do something that takes your mind off your responsibilities. For Devanshee, working out, occasionally going on treks, post-dinner ice cream dates with her father, help.

Stress on the mind

“When somebody is suffering — either the patient, because of the pain, or the caregiver because of exhaustion, they get irritable very easily. They may snap back in anger, and that puts a strain on the relationship,” says Dr Rajagopal. Often, when caregivers want to vent about their problems, they end up feeling guilty about complaining.

“More than me feeling guilty, I am afraid to lash out or express my frustration, because then, my mother would feel guilty,” says Devanshee. “We forget that the patient is already constantly thinking about how dependent they are.”

What you can do

It is essential for caregivers to verbalise what they are feeling. Find a close friend you trust, discuss your emotions, and have them validated. Friends and family members must recognise and appreciate the caregivers’ efforts.

Avoid trivialising your situation. You may know other people who are worse off than you, but that doesn’t mean you are not allowed to rant. “Sometimes I swallow my anger and say it’s okay, but my friends will tell me that it’s not, that I am right to feel angry. That in turn makes me feel stronger,” says Devanshee.

Your life must not revolve around one thing. Your duties as a caretaker should not negate your personality. Maintain a social life.

How to provide care for the caregiver

Other stresses

Financial

“A report by The BMJ says that 55 million Indians are pushed below the poverty line due to catastrophic health expenditure,” says Dr Rajagopal. “We need to socialise healthcare,” he adds.

Sexual

When one of the partners turns caretaker for the other, it may affect their sex lives. “It’s something that we don’t talk about much. Without open communication, they draw away from each other,” says Dr Rajagopal. It’s also not just about sex; it also affects their perceived sexuality, he adds. “People start judging their worth as men or women. An inferiority complex creeps in, and they fear they won’t be as attractive to each other.” Talk about it. “There are different ways of satisfying partners. With love and communication, you can explore that, and arrive at some partial solution,” he says.

Finding support

How to provide care for the caregiver

For some people, a support group helps. Sudha Meiyappan, who runs Parivarthan for Parkinson’s Foundation, a support group for people with the condition, says, “Whenever we do house calls, and counsel family members on how to take care of patients, we also discuss what they are going through, and insist that they set aside time for themselves.”

In a support group, you would be able to speak to someone who is going through the same situation as you. If you don’t have the time to attend a physical group, says Dr Rajagopal, even a social-media group such as on WhatsApp would help.

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Printable version | Feb 20, 2020 1:38:30 AM | https://www.thehindu.com/sci-tech/health/how-to-provide-care-for-the-caregiver/article25763695.ece

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