Role reversal: Looking after ailing parents
I have just finished dinner of cold aloo paranthas and dahi when the phone rings. It's my eldest sister who lives in Gulbarga, Karnataka. My old, ailing parents now live with her making her life very difficult and that is what the call is about. "Mummy is behaving like she used to," says Didi. "Like she used to", refers to mummy at her worst, in the throes of her psychosis.
As I listen to my eldest sister, her voice cracking and unclear due to poor mobile connectivity, I can feel a sinking feeling, a small knot of tension forming in my stomach. Mummy's psychosis resurfacing is never good news and now with her in a small town, it's only likely to add to Didi's problems.
Like it did to mine when daddy woke up doing those repeated, inexplicable actions that fateful morning almost eight years ago. Trying to keep him still was proving to be impossible. Mummy not understanding what was happening to daddy, who till then was her primary caregiver and also at the receiving end of all her paranoia, starts to panic. With both my parents out of control, I start dialling my friends.
When my parents decided to move to Delhi, leaving Maharashtra and Karnataka - two states where most of their family is based - more than 44 years ago, little did they realise that I would bear the brunt of that decision. Delhi gave me a great education, career, but no extended family. My two older sisters had moved away as well after they got married. This left me alone with no family support system to turn to with two ill parents.
I called Yogi and some other people who lived close by. Yogi's first and useful suggestion was to call an agency that supplied nurses. I do that and the agency says that the earliest a nurse can reach my west Delhi house is atleast a couple of hours. Bereft of choice, I agree and hope that it would be sooner rather than later than a couple of hours for the promised nurse.
In the meantime, in the absence of any understanding as to what could be the cause for my father's strange behaviour, I call up his cardiologist who lives and practices in our neighbourhood. He refuses to come home asking me to bring my father to the clinic instead. How do I that? If I could get him to sit still enough to drive him to the doctor, would I be panicking and asking him to come home? Is a patient's well-being only the responsibility of family members and not the medical profession?
Maybe it's the helplessness in my voice that makes the cardiologist suggest a psychiatrist who may have the answer to my father's medical problem. The psychiatrist comes in early afternoon and takes one look at my father and passes the verdict: "It's dementia". He prescribes a liquid sleep drug to sedate my father, and after pocketing a sizeable amount as his consultation, is off and away in about 10 minutes.
Could there be a worse diagnosis? Mother already suffering from schizophrenia and now a father with dementia, how was I going to cope alone? As I am thinking these fearful thoughts, my mobile rings. It's Yogi asking me what the doctor had said. I tell her and she rings off. In the meantime, I give my father the sleep-inducing drug and get my mother to eat her lunch and reassure her somewhat. Exhausted by now, fearful as hell and not being able to see the future clearly, I sit down for the first time that day when Yogi calls back and says, "Are you sure about the diagnosis?" Yogi, concerned about, me had of her own accord called up a doctor who for the first time that day showed a ray of light by saying, "No one gets dementia overnight. And to conclusively establish it, neurologists run a series of tests so it isn't possible that he has dementia."
When you are surrounded by darkness even a glimmer of light seems sinister. Could I dare believe that my father had something far less serious than dementia? Before I can even allow myself to revel in that happy thought, my father wakes up groggier than before but not better in any other way. Almost on cue, my mother, too, starts her own version of "bad" behaviour. Two fully-grown adults who also happen to be your parents with serious health issues aren't easy to manage, the way little children are.
Little children from the day they are born are conditioned to understand that their parents control their lives. And parents live their lives looking into every little detail of their children's lives. When the roles reverse as they did in my case it opened up a Pandora's box. Who controls the finances? Who takes the decisions, big and small, and make the others adhere to it? Who sets the ground rules? In India, children are everything for their parents. But when old, frail, unwell parents need their children that sentiment is returned grudgingly. Sometimes it's not returned at all. And sometimes it takes over a child's life, like it did mine.
More about Archana Jahagirdar
Archana Jahagirdar has been a journalist for almost 20 years having worked for some of the most prestigious names in the media business like The Times of India, Outlook and India Today. Her last full-time assignment was with the Business Standard where she also wrote a column on luxury and fashion. She has done her Masters and Bachelors in English Literature from St. Stephen’s College, Delhi University.
‘My Parents’ Daughter’ will be a weekly update, narrating Jahagirdar’s experience in taking care of her chronically-ill parents over the last eight years. From dealing with doctors and hospitals to taking decisions regarding medical treatment to changing dynamics in other family relationships – this blog notes the journey of a caregiver.
- + Love, Actually. And what lies in between...
- + All About My Mother
- + Medicine can't guarantee my mom a quality life
- + 'My mum's 72, young still. And I want her back fine'
- + A depressed dad, being single & life in between
- + Why middle-class India can't afford to fall sick
- + When the child becomes a crisis manager