We brought Anna home on 7 August, after 20 days in hospital with aspiration, pneumonia and a critical respiratory distress incident. The first 10-12 days were touch-and-go. The last 8-10 days were spent trying everything we could to wean him off oxygen and IV fluids.

Both were difficult tasks given the fact that there were no tubes and no drastic medical interventions to keep him alive as per his instructions and wishes. No ventilator, no lung drainage tube, no feeding tube. The only “tube” was the IV.

His medical staff were great, looking at “other” means to get him back on track i.e. well enough to be sent home.

We brought Anna home on 7 August, after 20 days in hospital with aspiration, pneumonia and a critical respiratory distress incident. (Photo Courtesy: Sangeeta Murthi Sahgal)

The key was to first get him to breathe on his own and maintain his O2 level above 90% – something we managed with medication and physiotherapy.

Then, there was the eating! Anna did not want to eat anything, could not eat anything.

I decided to do two things simultaneously – one was to cook foods that would dredge up fond memories of his childhood. The other was to grind everything into a baby-food-like consistency. So there was pureed upma, sooji-ka-halwa, vada sambar, idli sambar, curd rice... you get the idea.

The Beer Jokes & the Barista Bribes!

Every time he woke up, we’d find a way to shovel a few teaspoons of favoured-foods-of-his-childhood into his mouth. We’d add his powdered medication to a couple of spoons to ensure that he was orally ingesting his medication.

In a desperate attempt to add some nutritional value to his food (after I ran out of Nutralite Protein Powder), I tried Pediasure, a supplement for young growing children. Rich Kesar Badam. He loved it. We are now on our third carton of that thing! And I am not moving to a more age-appropriate supplement till he is bored of this one.

We’ve had him home for four days. His disorientation and hallucinations have increased. And through his bouts of “not being rooted in reality” we are trying to get him to eat. Eat anything at all. Focusing on calories with nutrition. At least 1,200 power packed calories per day. Quinoa, eggs, paneer, vegetables, rajma, brown rice, oats, banana, mango, milk, curd, nuts, figs, dates, raisins.

And through his bouts of “not being rooted in reality” we are trying to get him to eat. Eat anything at all. (Photo Courtesy: Sangeeta Murthi Sahgal)

On Thursday, as I drive him to meet his doctor for a review, I lecture him about eating more, re-starting regular physiotherapy sessions, and walking.

Me (deciding to use a threat): “Anna, I will have no choice but to re-admit you into hospital and put you on IV fluids, if you don’t eat properly.”

The father does not react to this threat at all!

Me (in jest): Anna, will you drink beer? It has lots of calories. If you say yes, then I will ask the doctor.”

Anna (giving me a sideways glance): Beer has lots of calories. The doctor will say it has no nutrition. I need nutrition.” Pause. Then a little grin. “I am happy to have beer, if you think it helps!”

The logic and playful parts of his brain are working well, I see!

As we wait for the doctor, I continue to remind him to eat properly. This time I decide not to threaten him with a hospital stay, but use an incentive.

Me: “Anna, if you eat properly, you will build up enough strength for me to be able to take you to Barista.” Pause. “You remember coffee at Barista, right?”

Anna (with a small smile): “Yes, Barista.”

“Anna, if you eat properly, you will build up enough strength for me to be able to take you to Barista,” I tell him. (Photo Courtesy: Sangeeta Murthi Sahgal)

Me: “Anna, you can have coffee and a muffin. You like muffins, right?”

Anna (the grin widens, and in a teasing tone): “I know you want to go. I will join you just to give you company.”

Appreciate the great sacrifice and hardship father!

Thanks for the favour.

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(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 of Parkinson’s Disease. You can follow Sangeeta’s blog here.)

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