Dealing With Anna’s Parkinson’s: A Day in the Life of a Caregiver

Life as a caregiver has been tiring lately – with dad’s Parkinson’s progressing and much of my support system ailing

Updated11 Apr 2018, 03:08 AM IST
Health News
4 min read

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 its ugly head with the humid and moist weather.

My mother-in-law (80) continues her 8-week battle with a urinary tract infection. And two days ago, one of her teeth, apparently having had enough, decided to drop off. So we add dentures and a dentist to the list of the many health-related issues we have to tackle and the people we have to visit.

Not to be outdone, my husband’s intestine and colon assert their importance. They start with fissures and add haemorrhoids, openly mocking the allopathy and homeopathy drugs he is prescribed.

The last 10 weeks have been challenging for everyone in the family. (Photo: iStockphoto)
The last 10 weeks have been challenging for everyone in the family. (Photo: iStockphoto)

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.

A Difficult Phase for Anna

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 four days for the effect of the additional / new drugs to wear off.

Anna pretty much missed his 88th birthday. (Photo Courtesy: Sangeeta Murthi Sahgal)
Anna pretty much missed his 88th birthday. (Photo Courtesy: Sangeeta Murthi Sahgal)

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.

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. (Photo Courtesy: Sangeeta Murthi Sahgal)
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. (Photo Courtesy: Sangeeta Murthi Sahgal)

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.

(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.)

Published: 09 Jul 2016, 02:23 AM IST

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