I am not a Bollywood fan, but when I watched the Piku trailer I immediately wanted to take my in-laws (who are 91 and 80 years old), and my dad (an 86-year-old child) to watch the film. Amitabh Bachchan’s “A human being’s emotion is linked to his motion” is spot on! His antics, quirks and refrains of being a “burden”, though loveable, frustrate Deepika Padukone, much like what my father does to me.
Dad lives in a flat near where I stay. Anna, as we affectionately call him, suffers from Parkinson’s disease and mild dementia. He cannot run his own home, manage his finances, or take care of medical and personal needs.
When I moved him to stay near to us, I had a full time job. So I addressed managing three elderly people and two homes like a project and used all my stakeholder, project and resource management skills, not to mention patience and sense of humour. Just as I imagine working parents of young children do, I set up a schedule for my father – when to wake up, when and what to eat, when to go for a walk/exercise, take a nap, shower, take medicines etc.
This schedule register is updated almost on an hourly basis by one of his two attendants. It also has details of water intake, urine output, bowel movements, whether there are episodes of disorientation and how long they lasted and the like. So it is something like the logbook of KVS Murthi “star date” today!
Every morning and evening when I visit my father, I spend precious minutes reviewing what has happened over the past 12 hours.
The three big, big things I monitor are:
- Bowel movement (some years ago, I would have thought this was too “gross” a topic to talk about!). With age it seems that bowel movement determines happiness. Anna has severe constipation. For a man who pooped first thing in the morning with no help from hot coffee or water, to a man whose bowels do not evacuate naturally for as long as five days, is very, very hard.
- Nightmares: Each morning, ask Anna two questions. First, ‘Did you sleep well, Anna?’ Followed by ‘Did you have any nightmares?’ His neurologist has told us that nightmares can lead to hallucinations. So most evenings, I try to leave him in a good mood, wish him good night and tell him to dream of pleasant things – Hema Malini (he was a huge fan), swimming, eating davangere dosai, laughing with his brothers, travelling with his family (Paris, Vienna, Amsterdam, Athens), etc.
- Exercise: The more Anna exercises, the better it is; for it keeps his joints flexible. His schedule has walking/exercising two times a day. Often he misses one of the two sessions, sometimes both. When I learn of the misses, I wag my finger under his nose and mock admonish him. Or hold the top of his ear and playfully pull it (play-acting twisting his ear), and ask why he did not walk/exercise today. He takes me seriously though and responds with “OK. I’ll walk tomorrow, ‘ma”.
I also have to think up of meals that are nutritious and appealing. Outings that are interesting and stimulating. Conversations that recall past joys and present foibles.
But, above all else is structure and schedule. Both bring me and him a sense of being in control, though there is really no control over Parkinson’s. It will ply the course it wants to. We will manage the best we can – with as much playfulness, fun and laughter as we fit into each day.
(After working in corporate India for over 29 years, Sangeeta has taken time off to look after her father, who was diagnosed with Parkinson’s Disease in 2008. Sangeeta hopes that these authentic stories will help patients and caregivers understand and appreciate the impact Parkinson’s Disease. You can follow Sangeeta’s blog here.)