World Parkinson’s Day: ‘What I Wish I Knew as a Parkinson’s Caregiver’

"Parkinson's doesn't just affect the person who has been diagnosed. It also affects the person who is caring them."

World Parkinson's Disease Day 2022: Support, resources for caregivers and patients

(Photo: iStock)

It's hard to imagine my thin, frail grandfather having anything in common with one of the greatest, fiercest boxers of all time, but he did.

My grandfather and Muhammad Ali both had Parkinson's disease. And from what I saw, my grandfather gave it just as good a fight as Ali did in the ring.

For as long as my childhood memory stretches, my Achachan, was part of it. Although a small man, I remember him always being energetic and boisterous, extremely disciplined and fiercely independent… until he wasn't.

In his early 40s, he was diagnosed with diabetes, a side effect of which, they said, were the slight tremor in his hands.

It didn't dampen his spirits. He took his insulin shots regularly, controlled his diet, kept up his exercising, and trudged on.

When I was a child, I remember being fascinated by his trembling hands. To me, it was a quirk that was unique to him. Some people had light eyes, a mole here, a dimple there, my granddad had shivering hands.

The tremors, though, were just the beginning. His condition only worsened from there.

My grand father fought his trembling fingers every step of the way.

(Illustration: Kamran Akhter/ FIT)

A few decades down the line, many misdiagnoses and experimental medications later, he was diagnosed with Parkinson's disease.

Parkinson's Disease is a progressive neurological condition that causes tremors, reduced motor function, cognitive disfunction, memory issues among other symptoms.

According to the Parkinson's Foundation, symptoms of Parkinson's can be very diverse, often making it difficult to diagnose. Typically, no two people will experience the exact same symptoms.

‘It Can Be a Lonely Journey'

I think the hardest part of being a bystander when someone you love has a degenerative illness is watching their kind, funny, clever, energetic, thoughtful selves slowly dissolve until they're nothing of the person that makes them except a shell of what they used to be.

That's what Parkinson's, and subsequently Dementia, did to my grandfather.

He fought it every step of the way.

He relearned everyday tasks, stubbornly insisted on taking his insulin injections himself, and hand-writing addresses on envelopes right up until he could no longer hold a pen.

Which is perhaps why his weakness hit us that much harder.

We weren't prepared for it – watching my strong-willed grandfather lose little battles to his own body every day. My parents and my grandmother supported him in every way they knew how, which mostly involved helping him with tasks he couldn't do, taking him to the hospital and getting him the medication he needed.

But looking back, I wish we had known more.

I wish we had known what he needed apart from physical assistance and medication.

More than anything, I wish my grandmother (who tended to him till his last days) had more meaningful support to see her through the emotional rollercoster none of us had foreseen.

"Parkinson's doesn't only effect the person who has been diagnosed. It also affects the person who is caring for this person, because they are going to lead this journey together," says Tejali Kunte, a clinical psychologist who has been working with the Parkinson's Disease and Movement Disorder Society for the past 7 years.

"It can be a lonely journey," she says. "And it can take a huge toll on the emotions of, not only the patient, but also the caregiver."

Parkinson's can be a lonely journey, and can affect a person's self-esteem and self-worth.

(Illustration: Kamran Akhter/ FIT)

Parkinson's can be a debilitating and frustrating journey.

"Symptoms like tremors or difficulty in walking, or speech can make the person self-conscious and develop low self-confidence or low self-esteem once they are diagnosed with Parkinson's," says Tejali, who is a part of a team of psychologists, neurologists, social workers and volunteers that form the network of support for patients and caregivers at PDMDS, a pan India organisation spread across 13 states, which aims to help improve the quality of life of, not only patients of Parkinson's, but also their caregivers, free of charge.

"We give people with Parkinson's a safe space to know that they are not alone in this journey, and it also motivate them to exercise together in a group of people who understand them."

Tejali Kunte, Head of Psychology, Parkinson's Disease and Movement Disorder Society

What Caregivers Should Know

Speaking to FIT, Tejali points out some things that caregivers should know before getting into it with a loved one who has been recently diagnosed.

• Don't compare

"Parkinson's affects different people differently. Some people will have some symptoms while others may not. My advice would be don't compare your loved ones' journey to that of someone else's."

Tejali Kunte, Head of Psychology, Parkinson's Disease and Movement Disorder Society

• Commit for the long haul

"Caregivers must prepare themselves and understand that it is a continuous thing because Parkinson's is a progressive condition. It's not that you have to take care of the person only for a month or so," she says.

• Acceptance is key

"With Parkinson's, because it is a progressive condition, and there is no cure, a lot of times the diagnosis comes as a shock."

Tejali Kunte, Head of Psychology, Parkinson's Disease and Movement Disorder Society

Parkinson's is a progressive illness. As a caregiver, you must be prepared to be in it for the long haul.

(Illustration: Kamran Akhter/ FIT)

"So, acceptance is very important," says Tejali. "As a caregiver also, it helps if you can help your loved ones accept this condition and continue with their daily routine."

• Don't restrict their activity

"We see some cases where the patients have stopped socialising, and so have the caregivers. They just don't let the person with Parkinson's do anything. At home or outside."

Tejali Kunte, Head of Psychology, Parkinson's Disease and Movement Disorder Society

"This might lead to loneliness and depression in both of them. So I don't think Parkinson's should limit them from having a productive life."

According to Parkinsons.org, exercise can not only help manage some symptoms of PD but also provide neuroprotection.

• Be honest

"There will be days when as a caregiver you might feel burnt out too. And that is okay."

Tejali Kunte, Head of Psychology, Parkinson's Disease and Movement Disorder Society

It's okay to feel overwhelmed, and its important to communicate it to the person you're caring for in a gentle yet honest way.

• Don't be afraid to ask for help

Having a support system is very important (even for the caregiver), "because it is a condition that requires a team of people to help them," says Tejali.

"You shouldn't feel guilty to take time out for yourself and also reach out for help and support for your own wellbeing as well."

Tejali Kunte, Head of Psychology, Parkinson's Disease and Movement Disorder Society

Encourage them to do their daily tasks themselves to help keep the mind sharper.

(Illustration: Kamran Akhter/ FIT)

Resources for Patients & Caregivers

With Parkinson's, medication is definitely very important, but it is not enough to control the progression.

According to Tejali Kunte, people with Parkinsons may also need multidisciplinary therapy like physiotherapy, speech therapy, counselling, advice on diet and motivation.

As a caregiver, paying attention to subtle changes in the patient and knowing what they need help with goes a long way.

"We have a lot of resources including booklets, videos, webinars, and strategies for how to help someone who has balance issues, motor skills issues like how to help someone get up from a chair safely, swallowing, hallucination, mental health etc. Or how to deal with people who have memory issues or other cognitive difficulties."

Tejali Kunte, Head of Psychology, Parkinson's Disease and Movement Disorder Society

During the pandemic, she says, PDMDS expanded their reach to caregivers seeing a void in support systems in place for them.

"We also have resources, counseling and group sessions for the caregivers on self-care," she adds.

Building a Support System

Patients and caregivers can build their own support system with others like them.

(Illustration: Kamran Akhter/ FIT)

Group therapy sessions can especially help people with Parkinson's feel less alone and more understood.

"Group therapies can really help because here they know that everyone has the similar condition. A lot of times it is a first step for them to meet other people and share their own concern and learn from each other."

Tejali Kunte, Head of Psychology, Parkinson's Disease and Movement Disorder Society

"I think this kind of a group sessions really gives them the confidence that enables them to integrate with their family, relatives, colleagues and friends," she adds.

Slowly, they start building their own support network.

"We also have separate sessions for the caregivers apart from sessions for people with parkinson's. A lot of them have expressed how they have also now formed a mutual support network which has helped them deal with their own loneliness," says Tejali.

(If you or someone you know has Parkinson's disease and is seeking help, you can reach out to https://www.parkinsonssocietyindia.com)