"That's why I need to care" - Sachdev and Mito's story
Sachdev and Mito have been married since 1973. 49 years, a move from India to England and 4 children later, Sachdev is now a full-time carer for Mito, who has multiple health problems, including Parkinson’s. Here he shares their story.
Mito first noticed Parkinson’s symptoms in 2007, while she was visiting India for a wedding. She was sitting on the floor in a temple and felt stiffness and pain, but put it down to a pulled muscle.
2 years later, a neurologist diagnosed her with Parkinson’s. Her husband, Sachdev was terrified by the news.
“We didn’t know much about Parkinson’s at the time,” admits Sachdev. “You don’t see much information in the South Asian community about the condition.
“We were shocked. All our dreams, ambitions and plans to see the world came crashing down.”
Mito is fighting. The only way I see it is we cannot give up. We need to fight it bravely, as much as we can.
Turned upside down
Mito’s Parkinson’s diagnosis turned her world upside down.
She had to leave her job as a gift box maker, which she’d been in since 1974, because of the company’s policy on safety.
Things have been further complicated as in the last 10 years, Mito has been diagnosed with diabetes, high cholesterol and lung cancer. Last year, Mito was admitted to hospital with coronavirus (COVID-19).
In hospital, it was tricky for Sachdev and their family to be able to care for Mito, because of the visiting restrictions in place.
“At the end of the day it was tragic for us,” says Sachdev. “They said she can’t come home. I was angry and fearful. I have to be everywhere with Mito to help her with eating, talking, sharing life with her. To make sure she’s comfortable.”
When Mito came home from hospital after recovering from coronavirus, Sachdev and Mito’s son Sanjeev moved back home to help care for her.
“My son made a welcome poster that said ‘Get well soon’ and I think that’s the dream. It’s coming true in a way against all the odds. Mito is fighting. The only way I see it is we cannot give up. We need to fight it bravely, as much as we can.”
Knowledge is power
Sachdev has found power in knowledge. He’s taken time to learn more about Parkinson’s in order to give Mito the best possible care.
“I attended a conference in Birmingham to understand more about Parkinson’s. I was told that it doesn’t affect the lifespan but the lifestyle is impacted.”
He’s a passionate advocate for understanding Parkinson’s, particularly in the South Asian community.
“We have to get Parkinson’s understood in the South Asian community because there is a stigma around it,” says Sachdev. “There’s a misconception about Parkinson’s and what causes it. It’s not about fate, destiny and past lives. These beliefs have to be broken down.
“It’s far more important to understand what Parkinson’s is, how complex it can be, how many symptoms there are and what is available to treat it.”
Caring, loving, living, understanding and valuing life is the first step to being human. If we don’t believe in a healthy society we won’t value life, we won’t love life.
What makes us human
Sachdev’s day revolves around caring for Mito. He typically wakes at 2am to change her continence pad to keep her dry and protect her skin. At 6am he records Mito’s medication and checks her temperature, blood sugar, oxygen levels and blood pressure.
He does it because he loves her, and because he believes caring for Mito is part of a bigger picture.
“Why do I care for Mito? It is not just one thing. She is my wife. She is my life partner. She is a mother. She is a grandmother. She is a sister. She is an auntie. She is a friend. She is a daughter and granddaughter. That makes her the centre of a small community. That’s why I need to care.
“Caring, loving, living, understanding and valuing life is the first step to being human. If we don’t believe in a healthy society we won’t value life, we won’t love life. We don’t want that type of society.”