Thursday, November 26, 2015

Happy Hallucinations Are Also Exhausting

Anna: Is the lagna over? (lagna is the muhurat or auspicious time when a wedding is solomised)

Me: What lagna, Anna?

Anna, looking at me as if I am the dumbest person he knows: <xyz>'s madivay (wedding) lagna!

Me: Anna, it's 2015. <xyz> got married years ago.

Anna: So when do we go to the pandal for madivay oota (wedding feast)?

Anna thinks he has an
invitation card in his hand
I've had this kind of conversation multiple times over the last two weeks. Its always a wedding.  And always that of a first cousin's. Anna wants to know if the wedding is over, if people have gone to partake of the wedding feast, when can he meet the bride and groom to give them his blessings.  All the while pointing to various areas of the flat and talking with or referring to people who are not there.  But Anna sees them, and wants to know why I have not given them coffee, or a piece of fruit, or something to eat.

I have unsuccessfully tried to to snap him out of his hallucination, many times.  I have played along with "Anna, they've already had coffee.  You drink your coffee".  I have asked questions, "What does the bride / groom do? How many people are at the wedding?" I have tried to bring in a sense of time by asking, "When did <XYZ> get married? Anna, what year do you think it is?" I have also told him that there is no pandal, no wedding feast, no guests, no anything. But he is in a world of his own.


Then there are short periods of time when he is in the here-and-now. He will tell me that he is disappointed that he won't get idli dosai for breakfast (realizing that he is not at a wedding, and that he isn't going to have the scrumptious multi-course breakfast that is commonly served after dawn weddings in South India). Or he will ask when his majordomo is coming back from vacation - I haven't told him that Tairas is not coming back, and that I now need to find and train a new person.

So, all-in-all, the last 2 weeks have been exhausting. The bar on the definition of exhaustion seems to be setting itself higher and higher as the days and weeks and months go by.

Anna's infection has abated a bit.  The racking cough and the death rattle breathing are still there tho' they are less frequent. He has stopped sleeping propped up in bed as if he is sitting on a reclining chair. The big treatment plan is steam inhalation 4 times a day, accompanied by various complaints by Anna from "Ayyo! Amma!" to "I am dying (of steam inhalation)". It seems to be the only way to get the phlegm out of his upper respiratory tract. Possibly caused by food and drink going into the lungs and the airways to the lungs instead of the stomach - a common issue with Parkinson's patients.

For the past week, I have also been standing in for Anna's majordomo, washing clothes and dishes, ironing pajamas and bed sheets, cleaning bathrooms and courtyards, pumping water to the tanks and having drains cleaned.

And thru' it all, tho' Anna has been withdrawn and depressed when he is not hallucinating, I am comforted that his hallucinations are about happy occasions, surrounded by family and friends.

But I want them to stop.

It takes a lot of mental acuity to keep up with his hallucinations, even if they are happy hallucinations.

I just want them to stop, even tho' I know that they may be replaced with depression and disorientation.

And, I can't understand why ....... I just want them to stop! 

Wednesday, November 11, 2015

Diwali, Pollution, and the Uncertainty of Parkinson's Disease

From mildly enthusiastic about Diwali to asking questions about it in less than 3 days! That's how long it took Anna to kind-of get into the groove of things.

At 9:30pm on Sunday night, when he is normally asleep, he calls to tell me that we haven't bought Diwali gifts for the service staff. I assure him that I have already bought gifts.  He asks if it is enough, should we give money, etc.  And we go to & fro on that till he says "Ok-Amma. I leave it to you." Yes, Anna, leave it to me!!

Then on my Monday visit, he wants to know why he has been deprived of Diwali sweets! Deprive him!  Can I even try to dare to deprive him of sweets? No way!! I tell him that Diwali is a couple of days away and that I will buy him mithai soon.

And finally, there are the crackers.  Anna wants us to buy some crackers for "shastra" i.e. as a good omen.  So I go buy some crackers even tho' the pollution levels are high and I don't think we should.  But shastra is shastra.

Then on 9th Nov, Anna has a bad throat, is disoriented, spends all night coughing and doesn't sleep till 5am in the morning. I think it is the effect of the pollution. It gets worse on 10th Nov. He sleeps only at 6am after coughing again all night.  The attendant is worried about the intensity and length of the spells and his ability to breath.

So on Diwali day, we are at the hospital at 9:30 am.

Anna is very mildly responsive, slurring, disoriented, jerking his arms (something he does not do on his Parkinson's medication).

It takes 5 hours to put him on a nebuliser, take a chest x-ray, run blood tests. There is no chest infection, no throat infection, no pneumonia. Yet he is almost catatonic.

We bring him home with instructions to keep a close watch, give him steam inhalations, and to bring him back to the hospital if he takes a turn for the worse.

He sleeps all afternoon.

In the evening when I go to light the diyas at his place, he is half-asleep but still ready to light the diyas and agarbatti. But alas, he is so weak he can not strike the match hard enough against the matchbox to get it to fire up.  So I do that for him.

Eyes closed and with a weak smile he gives the staff, their Diwali gifts. And then promptly falls asleep.

So no real Diwali for him. No gorging on mithai. No watching me light diyas and candles. No being wheeled around the colony to see houses lit up in colorful lights. No enjoying the sight of flower pots and Vishnu chakras as they are lit by his staff and neighbors and he watches in glee.

Thursday, November 5, 2015

Belief in God!

I have never really known my father as a religious man.  He has never been one for the ceremonies that surround, and sometimes take over, a religion.  Yes, he would participate in them. More because he was asked to, not because he initiated them.

For ever so long, I have known him to wake up in the morning, sit cross-legged on the bed and pray.  When I have asked, "What is the prayer you say", he had responded with, "I meditate." On my trips to visit him at my sibling's homes, he would light a diya and agarbatti (incense stick) every day after his bath.

So when I brought him to Delhi, I created a small place in his home with a couple of photos and idols, thinking he would want to continue with his prayers or at least with the ritual of lighting an agarbatti and diya. But he didn't. I kept asking him why till one day he told me that he wanted a photo of Thirupati Venkateshwara (our family deity).

Given that I am not a religious person, it took me some time to find a photo for him. He still would not continue with his prayers or lighting a diya and agarbatti.

The Sparkler Exhibit
at Select Citywalk
On this weekend's outing, we talked about Diwali. He loved the decorations, especially the sparkler exhibit. He insisted that I get a snap of him smiling in front of the exhibit!

So I thought it was a good time to see if he would want to go back to praying, or even just lighting a diya and agarbatti every day after his bath.

He patiently watches me as I clean the mandapa and photos, and lay out the diyas and agarbatti stands.  He listens to me intently as I tell his attendants what to do.  And then......

Me:  "Anna, I have set up everything so that you can light a diya and agarbatti after your bath.  Its 10 days to Diwali. You should do this every day.

Anna, with little interest: "OK"

Me: "Anna, why have you lost interest in doing this? You used to be so regular"

Anna, giving me a sideways glance: "What is there to pray for now? Nothing can change. There is no need."

My heart stops.

I don't have the heart to ask him why.

I don't have the heart to tell him that it's OK if he doesn't want to pray.

I don't have the heart to tell him I will put away the mandapa and paraphernalia if he wants.

I don't have the heart to ask him to pray for no suffering and an easy end.

And then, yesterday morning, he lights a diya and agarbatti after his bath.  I think he does it for me. Because I told him to.  Because I put in the effort to set things up for him.