The onset of the disease

The Sarawgis were one happy family. DP Sarawgi retired from Bharat Heavy Electricals Ltd. where he was an engineer. Tragedy struck the household when his wife got afflicted with progressive supranuclear palsy (PSP). The onset of the disease resulted in her losing control over her speech and balance. Things took a turn for the worse when she had a bad fall and sustained a head injury. Diagnosis at the hospital indicated PSP. PSP is a brain disorder that affects movement, control of walking (gait) and balance, speech, swallowing, vision, mood and behaviour, and thinking. The disease results from damage to nerve cells in the brain.

As the disease progressed, the patient’s tendency to fall increased and she was in need of help all the time. Her husband soldiered on with some support from his daughter-in-law. But the increased attention that his wife needed started taking a toll on Sarawgi’s health and his lifestyle got affected. This is when his son stepped in and suggested that the family seek help from Life Circle, a home nursing care provider.

 

Rekha, the cheerful caregiver


Rekha supports Mrs. Sarawagi during her “puja”
Rekha, a home attendant with Life Circle was entrusted with offering home nursing care to the patient which included helping her out in activities of daily living (ADLs), performing daily puja (offering obeisance to the family deity),  giving her medicines as per the time table, taking her out for walks in the evenings, help her perform light exercises and keep her in good humour. It also helped that Rekha was a cheerful person.

Impact on Rekha

Rekha finds satisfaction in her assignment. She sums up, “Humko seva karne mein khushi milta hai, humko aage bhi yahin kaam karna hai” (I find happiness in assisting the elderly, I want to continue working as a caregiver over here)”.

 


Caregiver Rekha with her husband and children
Beyond satisfaction, Rekha’s job at Life Circle gives her financial stability. Her earnings enable her to pay off the home rent and her children’s school fees. Most importantly, she is able to share the financial load of the household with her husband.

What the family caregiver has to say


Mr. & Mrs. Sarawgi
Sarawgi comments in an anxious tone, “100 times patient can perform a job but 101st time if she falls, what secondary damages can happen, that no one knows”. He continues, “My wife has never experienced any falls since we availed professional help”.

He states that before the family hired a certified nursing assistant, they skipped bathing/sponging the patient sometimes. Ever since Rekha arrived, she bathes and grooms the patient before her morning prayers and worship.

Sarawgi states, ” I can now focus on financial investments; i wanted to do this even when I was working at BHEL. This has always been an area of interest for me and I can finally pursue it during my leisure time. When Rekha is around, I can have a siesta, this reduces my fatigue. I am also 71 now, I need some rest because at night I need to wake up if my wife needs any help, but Rekha’s presence during the day provides some respite”.

 

Treatment and care for PSP

As of now, there is no cure for PSP; the treatment mostly focuses on relieving the symptoms while trying to make sure that the patient has a good quality of life. Because PSP manifests differently in each patient, treatment and care are tailored to meet the patient’s individual needs. Along with medication, doctors recommend physiotherapy, speech and language therapy, constant support and caring.

Medicines and good care can help patients live with the symptoms. Though the disease itself isn’t life threatening, its complications can be. The caregiver and family members must be aware of the symptoms like problems with balance and mobility, including frequent falls, difficulty in swallowing, sudden changes in behaviour, such as irritability, etc. Good care and assistance can help someone with PSP to be more independent and enjoy a better quality of life.

 

About the author

Aparajita, has a background in dentistry and has done a Masters in Public health from the EHESP- French school of public health. She has worked at organizations such as WHO(Geneva), URC- Eco(Paris), HandsOn Suburban Chicago & NWSRA(Chicago). Now she is working at Life Circle as the care coordination officer. She believes it’s best when career and passion come together. Her vision to bring some grass- roots level change through organized efforts gives her the drive to work. In her spare time, she loves moving around the city, exploring new places and making memories.

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