Thursday, July 7, 2016

A Caregiver's Challenge

Neptune Hospital, Navjivan Vihar, New Delhi

The last 10 weeks have been challenging to say the least. We've been to the hospital innumerable times and spent so much time there that if Neptune Hospital had been a country, we could apply for residency status!

Not just with Anna but with everyone in the family.

My father-in-law (91) was treated for a skin infection. Now his old back injury pain has raised it's ugly head with the humid and moist weather.

My mother-in-law (80) continues her 8-week battle with a urinary tract infection. And 2 days ago, one of her teeth thinks it's had enough and decides to drop off.  So we add a dentist and dentures to the many health-related issues and people we have to visit.

The ramp into Neptune Hospital
Not to be outdone, my husband's intestine and colon assert their importance.  They start with fissures and add hemorrhoids, openly mocking the allopathy and homeopathy drugs he is prescribed.

And just in case things weren't hectic enough, my father's housekeeper is diagnosed with non-contagious TB that needs aggressive treatment. And of course he is allergic to one of the medicines prescribed and we have to treat the allergy too!

And with all this happening simultaneously, I start to notice that Anna is slowing down dramatically. Lethargic, sleeping more, often non-responsive, moving and walking much less. I first think that it is the heat and then dismiss the idea as Anna is in air-conditioned rooms most of the time. Then he starts to collapse, becoming loose-limbed and dead weight without provocation. I take him to his GP. We do all the blood tests needed, and find that everything is OK. So next stop, neurologist.

30 Jun 2016: 2 days after his birthday, Anna is 90%
asleep when I try to get him to cut a cake
Anna's neurologist says his Parkinson's has progressed. So we increase the dosage of Syndopa (Carbidopa-Levidopa) and add medication to make him more alert.

Anna gets worse. Much worse. All his symptoms get worse and he is delirious. We rush him back to his neurologist, who stops all additional medication saying that in all probability Anna may have reached the max dosage of Syndopa his body can take.

Anna pretty much misses his 88th birthday. It takes over 4 days for the effect of the additional / new drugs to wear off.

Anna has coffee and quiche
at Barista, SDA Market
After 3 weeks of not being able to take him out, he is conscious enough for us to go to Barista for coffee on Sunday. The highlight of our outing is a stranger gifting Anna dark chocolate, saying it is good for him.

This morning for the first time in more than 3 weeks, he is awake and eating his own breakfast (vs being fed).

Me: Good Anna! You've had your own breakfast today.  Pause. What did you have?

Anna (his eyes are closed): Upittu (Upma)

I look at his bowl and from the one bite left I can make out that it is not upittu.

Me: Anna, it's not Upittu. It is Vermicelli. Vermicelli in sweet milk.

Anna: Oh.

I then notice that he is drinking the litchi juice I bought. A change from the standard orange / apple / guava juice he normally has.

Me: Anna, do you like your juice?

Anna: It's OK.

Me (not sure if he is really awake and aware): Anna, do you know what juice you are drinking?

Anna: I am still doing research on it.

We share a chuckle. His eyes stay closed throughout. We take him back to bed.

We now have to wait a week to take Anna back to the neurologist to see if we can do anything to improve his quality of life.

I am tired. Just tired!


  1. A touching post. A caregiver's job is tough; just balancing love and warmth with logistics and ensuring everything is tickety boo can drive one insane. But remember to take care of yourself, and take time out. Maybe share the load with in-laws and out laws, siblings and cousins, friends and relatives! Ask, request, bully if necessary! :)

  2. That's the loneliest part of being a caregiver, not being able to find someone to help out. In-laws themselves elderly and ill, siblings not in the country, cousins all in different cities, friends that my father does not recognise. I do manage to get out for a lunch / dinner with friends. I write. I started to go to yoga class. I am hooked on some TV serials (conveniently recorded on Tata Sky). But still does not seem enough many times. So hanging in there.

  3. I can so relate to you. My dad was diagnosed with brain cancer towards end of 2014. I was the primary caregiver till he passed away at end of August last year. Lack of trained help was the biggest thing - even if you throw money there just isn't enough good talent available. I used to sleep for 2 hours a day for over 1 year. Wish you and your family lots of positive energy . Blessings.

    1. Sorry to hear about your dad. It is so difficult to see loved ones fade away. It's tough.
      Thanks Harsh for your wishes!