For caregivers of persons suffering from Parkinson’s disease, taking one’s own physical and emotional well-being often takes a backseat. Parkinson’s disease is a long-term, progressive neurological disorder without a cure. Happiest Health spoke to long-time caregivers and psychologists who outlined a few simple tips to help cope with Parkinson’s caregiver stress and burnout.
Beating Parkinson’s caregiver stress: Accept the diagnosis
Ameeta Patel, president of the Parkinson’s Disease Society of Karnataka says that caregiving becomes easier when one is able to fully accept the diagnosis.
“We should accept the condition ourselves and the fact that this is a progressive disorder. This is important because if we keep living in the illusion that this is going to stop or get better, it becomes detrimental to our mental health. Once you accept the diagnosis, caretaking becomes a lot easier,” says Patel. Her mom suffered from Parkinson’s disease (PD) for more than two decades.
Supreet Kaur Bhasin, assistant professor of psychology at Indraprastha College for women, New Delhi says that the irreversibility of the disease can itself be difficult for caregivers to accept.
“Caregivers reported feeling misinformed about the patient’s ailment. Providing them with the right kind of psychoeducation, information about the nature of PD and the kind of roles they will undertake can make caregivers feel better prepared,” Bhasin says.
Preventing Parkinson’s caregiver stress
Ameeta says that it is normal for caregivers to feel guilty for taking time off to pursue their own interests.
“As a caregiver, one must get over that feeling of guilt that creeps in,” says Ameeta, “You have to take time off to get refreshed. Both the person with PD and the caregiver should understand this.”
At times, frustration as a caretaker may also creep in, says Ameeta.
Mamta Prasad (59), homemaker from Bengaluru whose husband Hari Prasad was diagnosed with PD in 2008 says she takes her ‘me time’ seriously.
“I love meeting new people and enjoy playing games like bridge. I have made it a point to step-out of the house often to do things that interest me and keep me happy,” says Mamta.
Mamta says that it is important for both the person suffering from Parkinson’s and their caregiver to understand that to be effective and prevent burnout, one must focus on one’s own physical and emotional wellbeing.
Initially, Mamta was judged for putting herself first. But she let it go and thankfully her children and Hari himself remained supportive. “I would step out only a few hours in the day and gradually my family members became fine with it. I trained my family to manage in my absence and slowly started increasing the time spent outside the house. Hari also started getting used to this over time,” Mamta said.
To be an efficient caregiver, Mamta says she has to first take care of herself and be happy and healthy. “It is not possible to be a caregiver for a person with Parkinson’s 24 hours a day. One must understand and accept this. At times, you can’t help but feel a bit depressed. At these times, you’re not able to take care of your loved ones to the best possible extent,” she says.
“If you’re shunning your own needs and happiness, then you may not be as effective as you can be as a caregiver. Be it reading books, going out to watch a movie or meeting people, do whatever it takes to destress yourself. I joined dance classes and attended them thrice a week,” Ameeta says.
Bhasin who is also the lead author of a 2021 paper on ‘the lived experiences of caregivers of people with PD’ says caregivers must become aware of the different emotions they are experiencing. They should learn how to move beyond feelings of guilt and shame when they want a timeout from the caregiver’s responsibility.
Bhasin says that enquiring about a caregiver’s health is important. “Even a simple phone call during which the caregiver has a regular conversation without talking about the disease, would sometimes help improve one’s emotional wellbeing. This makes sure that the caregiver is not just limited to thinking about the care they’re providing and whether it is sufficient or not,” says Bhasin.
Have a good support system in place
Mamta says that the support of their family and friends made a vast difference.
“After Hari broke the news in our friends’ circle, the positivity they showed and the way they reacted made a lot of difference,” said Mamta, adding that Hari has not been discriminated against for his Parkinson’s.
Hari and Mamta have taken three road trips since Hari’s Deep Brain Stimulation (DBS) surgery in 2015 travelling from Bengaluru to Bhutan, Madhya Pradesh and Nepal with their friends.
On the trip to Bhutan, the couple drove for more than 40 days, spreading awareness about PD in the process. They are planning a fourth road trip in September 2023, from Bengaluru to Leh, Ladakh.
“We realised that his passion is travelling and I love driving. We decided to drive around and see the country when he got the idea to spread awareness about Parkinson’s disease during the journey,” says Mamta.
“Hari also started a Whatsapp and a Facebook group since he realised so many people needed help. We wanted to make sure that people had the right information,” she adds.
Bhasin agrees that social support can play a crucial role in the life of caregivers.
- While caring for someone with Parkinson’s disease, it is important to not neglect your own physical and mental wellbeing.
- Feelings of guilt, frustration are normal among caregivers.
- Accepting the diagnosis, practising self-care, getting over feelings of guilt and having a strong support system in place are all important steps to dealing with Parkinson’s caregiver burnout.