My father is definitely slowing down. Earlier, he could shuffle-walk to the big park behind his apartment. Now he barely gets to the gate of the colony. Previously we had more hours of wakeful cogent conversations. Now, when I do have cogent conversations that last for 30 minutes, I call it a good day.
As usual, last Sunday morning I decided to take Anna out for coffee. He was waiting patiently, sitting at the dining table for me at 11am, our usual hour.
Me: Anna, are you ready to go out for coffee?
Anna: Yes.
Me: Anna, where do you want to go? To Starbucks in the mall or to the Barista where we sat outside with Mamta and the family last weekend?
Anna: Say again!
Me: Anna, do you want to go to the mall or sit outside and drink coffee?
Anna: Outside.
I check that he is warmly clothed (something I check each day!), focusing on number of layers vs thickness of woollens. He says he is feeling quite warm. And off we go!
Dementia and a New Language
At Barista, he shuffles to a table outside the cafe, waits patiently for his coffee and treat. Today we have a double treat – coffee with Irish Cream flavouring and a paneer, corn and cheese turnover. We chat about mundane things. And about his illness and the restrictions it places on him. It's like a "repeat it" game. He asks me to repeat questions and responses and I do.
After coffee and a paneer, corn, cheese turnover I ask him if he would like to go to the "really big park". He says yes, and we drive to it. That is the easy part. Getting him through chained gates, walking down an incline and wheeling his wheelchair on rough red sand takes effort. But, what the heck, he loves the 3 km "walk" in the park.
On our way home, here is how our conversation goes:
Anna: Sangeeta, you are great!
Me: Really? What did I do?
Anna: You are great!
Me: Thanks Anna. But you have to say that! You are my father.
Anna: No, I don't have to say that.
Me: Fathers always think their children are great.
(This goes on for a while. Then Anna changes tack.)
Anna: You are very patient.
Me: Yes Anna, I am.
Anna: You have listened and replied to all my questions and comments today.
Pause.
Anna: You are schtopal.
Me: Schtopal? What does that mean, Anna?
Anna: I don't know. But it says what I mean.
I have no clue what he wants to say. I think of all the possible words in Tamil, Kannada, Hindi, and English that "schtopal" sounds like, but for the life of me I cannot come up with a single word or phrase. I even google it with no luck. Yet Anna is clear that it describes what he wants to say.
Perhaps Anna's Parkinson's and Dementia brain is creating a new language!
( After working in corporate India for over 29 years, Sangeeta had taken time off to look after her father, who was diagnosed with Parkinson’s Disease in 2008 and passed away in 2017. Sangeeta hopes that these authentic stories will help patients and caregivers understand and appreciate the impact of Parkinson’s Disease. You can follow Sangeeta’s blog here.)
(This piece is being repubbed from FIT's archives to mark World Parkinson’s Day.)
Related Links in the Series:
From a Real Life Piku: Looking After an Elderly ‘Child’
My Anna Holds on to his Bata Sandals, Even as He Loses his Memory
Who Knew That Nutella Would Convince My Old Dad to Take his Pills?
For a Dad with Parkinson’s, I’d Get Him All the Junk Food He Wants
Pray, Why Does My 87-Year-Old Anna Need an Aadhaar Card?
When Anna Forgot the Words for Pain & Medicine & Suffered Quietly
I Have a Dad With Parkinson’s (& Here’s What I Don’t Need to Hear)
A Dialogue: The Day I Saw My Dad For the Feminist That He Is
Why I’m Going to Research Organ & Body Donation For My Brave Anna
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