MindSpace: The incredible loneliness – and strength- of being a caregiver

Read why the author believes that being a caregiver, no matter what the condition of the patient is, is one of the most underrated jobs in the world.

A few weeks ago, my mother took my father for his annual check-up. During the examination, the doctor, a neurologist who specialises in movement disorders, asked my father some questions.

Here is an excerpt of that conversation:

Doctor: How old are you?

Dad: 24

Doc: Are you sure you are 24, and not 84?

Dad: 24 (more firmly, not bothered by laughter from the attendant nurses in the room)

Doc: Where did Prime Minister Modi go recently (after the PM’s US visit)?

Dad: Let him go where he wants.

Doc: What did you have for breakfast?

Dad: I had light tiffin and tea. (A remarkably coherent answer that covers up the fact that Dad doesn’t remember what he had for breakfast, or whether he had breakfast at all).

Image Source: www.modern-senior.com

Pic – www.modern-senior.com

“The doctor said his health is okay, that his responses indicate that the memory loss is not so advanced,” my mother told me later, during our daily evening phone call.

My father has dementia. And he is not alone; there are over 40 lakh (4 million) people in India now living with various kinds of degenerative disorders where the brain no longer functions properly. Basically, in a dementia patient, the slow loss of brain cells affects behaviour, character, memory, judgement, and their daily living habits (personal hygiene often goes for a toss), among other things.

In dementia, patients live in an alternate reality almost where the present no longer exists—they become suspicious, aggressive, and violent to people around them. And they become increasingly disoriented about their surroundings. Sometimes, they wander off from home and go missing. They do this apparently because they are enacting an old habit (going to office, going for a daily walk, etc.) or because they feel they have to reach a particular place. My father, for instance, is constantly trying to “go to Calicut/Kozhikode”, (in his own words), though my mother repeatedly tells him that he already lives in Calicut. His need to “go to Calicut” has led to him going missing twice. We got him back, both times, thanks to concerned strangers.

Image Source: alzheimerdiseaseinindia.blogspot.com

Pic – alzheimerdiseaseinindia.blogspot.com

As health worsens, dementia patients need round-the-clock care, require the use of adult diapers, and often, are bedridden. My father is not bedridden yet, but he will be, at some point. Then he too will need 24×7 care.

 Lifelong care

Over 13 years ago, my father was losing huge sums of money every month because he couldn’t distinguish between say, a Rs. 100 note or a Rs. 500 note. Yet, he would deny anything was wrong. He was aggressive and violent. A simple request like “Why don’t you go for a bath?”, would provoke him into lashing out at my mother. And he drank heavily too.

Today, he is physically frail and much more passive, and the drinking has stopped. But if he is given alcohol at a social function, for instance, he can keep drinking unless prevented from doing so. On the whole, he is easier to handle. How does my mother do what she does? She tells me she is motivated by a sense of duty. “He is my husband, so I have to care for him as long as I am able.” That acceptance, she says, gives her strength. And because of that, she says she doesn’t grudge us – her daughters – in our own “hassle-free”, normal, lives.

Image Source: ken-foundation.blogspot.com

Pic – ken-foundation.blogspot.com

For personal and family reasons, I live in Bangalore and my older sister is based in Dubai. So that is why my 72-year-old mother, a retired English professor, cares for our father. The fact that our parents live in a small city in Kerala helps too.

We don’t ‘hide’ my  father’s condition because he is at risk of wandering. All our family friends, acquaintances, even neighbours, know about my father’s dementia. Also, Amma, along with being a caregiver, continues to teach Spoken English twice a week at an institute in Calicut. When she has classes, or a social event to go to, she contacts agencies that supply security guards and drivers on demand. A guard comes home to watch over my father, and a temporary driver comes along to take her to wherever she needs to go to.

A child again

Today, my father is a shell of the man he used to be. He is unpredictable. Some days he lies in bed all day; some days he paces up and down the house. And he has reverted to childhood, in many ways; he loves junk food, burgers, pizza, pastries, and ice cream, and hates rice, dal, and sambhar or vegetables. If he sees someone eating a sweet, for instance, my father is quite capable of taking it from them. There is no sense of shame, or self-control anymore.

To be brutally honest, my sister and I don’t really know what it is like to live with my father—what it is to be constantly alert (so he doesn’t slip out the front gate); what it is to hide the food/edible items in the house, especially sweets, (he keeps eating if he finds any); what it feels like to fall sick and not have anyone around to nurse you; what it feels like when your spouse doesn’t care or remember your birthday, your wedding anniversary. Only my mother knows, because she lives with my father.

 Living with courage

We try to ensure that Amma has the support (domestic help for cooking/housework, a trained nurse to clean, shave, bathe my father), she needs to manage. We ensure that financially, there is never a lack of funds too, though Amma insists that her monthly pension is more than enough. And as a journalist, on my part, I try to write as many articles as I can, on dementia, dementia care, the need for awareness, and the need for support systems for caregivers. For people like my mother.

Image Source: www.thehealthsite.com

Image Source: www.thehealthsite.com

But how does Amma stay cheerful through it all? She goes for walks, reads avidly (mysteries, romance, historicals, Booker-winning authors), is on Facebook and family email groups, watches Homeland, and – if she has company – loves to go for movies. When Amma and I have our daily telephone call, she relates the day’s events and then we laugh together at the sometimes ridiculous things my father says (like the matter of his age).

My parents, Sreedharan and Radha

My parents, Sreedharan and Radha

Caregiving is an incredibly lonely job. It requires immense courage and immense patience. Yet Amma never complains. She makes the best of things. Such is life, she says.

As for my sister and I, we live with guilt in our hearts, because we owe Amma everything—our very existence, our own families, and our ‘normal’ lives.

Divya Sreedharan is a journalist and author in Bangalore. She writes on gender, health, lifestyle and ageing-related issues for various publications and has a blog titled Connected Lives on Citizen Matters. more


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Divya Sreedharan is a journalist and author in Bangalore. She writes on gender, health, lifestyle and ageing-related issues for various publications and has a blog titled Connected Lives on Citizen Matters. more

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