ADVERTISEMENTREMOVE AD

Living With Anna’s Parkinson’s: Here’s How Best to be a Caregiver

I have been caring for my ageing Anna, who has Parkinson’s Disease, for years now – and here’s what I’ve learnt.

Published
Blogs
6 min read
story-hero-img
i
Aa
Aa
Small
Aa
Medium
Aa
Large
Hindi Female

My father, Anna, who has Parkinson’s Disease, Dementia, and Diplopia has been in the hospital since July 20, 2016. He needed emergency hospital care when he stopped eating while battling viral fever. Within a few hours he was diagnosed with aspiration pneumonia. He was on 24-hour oxygen support for 5 days. The IV fluids continue as he is eating enough to keep a sparrow alive, barely!

Here are lessons learnt from this and other medical emergency experiences. I hope these will help you if you are a caregiver too. Remember, some of these learnings may be valid only for India and/or only for caregivers of patients with degenerative diseases.

ADVERTISEMENTREMOVE AD

Have THE Conversation on End-of-Life Preferences & Care

I have been caring for my ageing Anna, who has Parkinson’s Disease, for years now – and here’s what I’ve learnt.
However hard it may be, have the conversation. (Photo: iStock)

It is hard to ask a parent what kind of interventions / care they would like at end-of-life. However hard it may be, have the conversation. A deep detailed conversation.

Anna is clear he wants no cardio-pulmonary resuscitation, and no tubes to drain his lungs or feed him. We have talked about how this would lead to more suffering, but he says he does not want to die hooked up to a machine, nor does he want life to be prolonged by drastic interventions. He wants a dignified exit.

0

Tell the People Who Need to Know...

I have been caring for my ageing Anna, who has Parkinson’s Disease, for years now – and here’s what I’ve learnt.
Tell the people who need to know about the patient’s end-of-life choices. (Photo: iStock)

...About the patient’s end-of-life choices. I have had detailed conversations on the possible progression of his disease and what it can result in. I have let his doctors know what he would like done and not done, with Anna in the room. I have tried to be as detailed as I can, so that his doctors know exactly what is and is not acceptable. I have also communicated Anna’s wishes to the immediate family. In India, this can mean in-laws, uncles, aunts, cousins, etc. I don’t want to hear criticism and second guessing decisions that are my onerous task to make and not theirs.

ADVERTISEMENTREMOVE AD

Abide by the Patient’s Wishes

I have been caring for my ageing Anna, who has Parkinson’s Disease, for years now – and here’s what I’ve learnt.
I stick to my guns and tell them I am abiding by Anna’s wishes / instructions. (Photo: iStock)

It is a sacred covenant. In an emergency, you will be asked time and again to take medical decisions. I just stuck by what Anna wants even though I die a little inside, knowing that this could be an end-of-life situation. Everyone, from the medical staff to the attendants and the neighbours have a point of view. Some repeat themselves ad nauseam – I stick to my guns and tell them I am abiding by Anna’s wishes / instructions. Once I have been forced to tell someone to just “stop it!”.

ADVERTISEMENTREMOVE AD

Identify the Hospital for Emergency Care

I have been caring for my ageing Anna, who has Parkinson’s Disease, for years now – and here’s what I’ve learnt.
We want a place where Anna and we are comfortable, where we are listened to. (Photo: iStock)

We prefer to take Anna to a small nursing home because we like the doctors and it is nearby. The doctors are nurturers and healers. They may not have all the specialists that one sees in big places, but we don’t want all that. We want a place where Anna and we are comfortable, where we are listened to.

ADVERTISEMENTREMOVE AD

Keep a Hospital Bag Ready

I have been caring for my ageing Anna, who has Parkinson’s Disease, for years now – and here’s what I’ve learnt.
Even if the hospital you choose provides all these things, I would still recommend a bag as it will have the things that the patient is comfortable with. (Photo: iStock)

A bag with all the essentials – clothes, towels, diapers, toiletries, etc. In an emergency, it’s easy to pick up a bag. Even if the hospital you choose provides all these things, I would still recommend a bag as it will have the things that the patient is comfortable / familiar with – from the taste of the toothpaste to the feel of the body lotion.

ADVERTISEMENTREMOVE AD

Keep Medical Papers Organised (& in Another Bag)

I have been caring for my ageing Anna, who has Parkinson’s Disease, for years now – and here’s what I’ve learnt.
I just think of Anna and me as the customer and do what makes me happy. (Photo: iStock)

File papers (prescriptions, results of tests and investigations, etc.) chronologically. Sometimes this is an issue when you see more than one specialist as they don’t like to flip through “other doctor’s papers”. I don’t bother about this. I just think of Anna and me as the customer and do what makes me happy. I have two major categories – one is Anna’s neurologist and then the others.

ADVERTISEMENTREMOVE AD

Make a Cheat Sheet of Medications

I have been caring for my ageing Anna, who has Parkinson’s Disease, for years now – and here’s what I’ve learnt.
I created a cheat sheet to help me fill Anna’s pill boxes. (Photo: iStock)

Specially if the patient takes medications from more than one doctor. I created a cheat sheet to help me fill Anna’s pill boxes. Every time we have taken Anna to a hospital emergency room, the intake / resident doctor has used the cheat sheet to fill in his chart or change medication / dosage fast.

ADVERTISEMENTREMOVE AD

Keep Strips of Medication Available

I have been caring for my ageing Anna, who has Parkinson’s Disease, for years now – and here’s what I’ve learnt.
After understanding the medical history and current medication, some medication will be stopped in an attempt to stabilise the patient. (Photo: iStock)

When a patient is brought into emergency, after understanding the medical history and current medication, some medication will be stopped in an attempt to stabilise the patient. Then, medicines will be re-introduced into the system. At this point the nursing staff may need only 3 of the 15 tablets a patient takes. I keep at least one strip of each medicine available so that I can pull out and give the nurse what is needed at short notice.

ADVERTISEMENTREMOVE AD

Ask the Medical Staff Questions

I have been caring for my ageing Anna, who has Parkinson’s Disease, for years now – and here’s what I’ve learnt.
Don’t feel guilty about keeping a doctor from other patients – your patient is also important. (Photo: iStock)

You need to know what is happening, and why. Ask the doctor questions, and as many as you want. Don’t feel guilty about keeping a doctor from other patients – your patient is also important. Ask the resident doctors and nurses. When I get similar answers from all of them, it gives me confidence. Also, it helps me answer questions from well-wishers.

ADVERTISEMENTREMOVE AD

Bribe the Patient Shamelessly!

I have been caring for my ageing Anna, who has Parkinson’s Disease, for years now – and here’s what I’ve learnt.
Getting him to eat was difficult till I bribed him with custard, mashed banana, blitzed mango, upma, halwa, sprite, green coconut water, etc., and voila! He started to eat.(Photo Courtesy: Sangeeta Murthi Sahgal)

I tried all I could to get Anna to eat. All his medication has to be taken orally, and hence we had to crush pills and mix it with a teaspoon of soft food / liquid for him to ingest. Getting him to eat was difficult till I bribed him with custard, mashed banana, blitzed mango, upma, halwa, sprite, green coconut water, etc., and voila! He started to eat.

ADVERTISEMENTREMOVE AD

(Read tips 11-20 on my blog post “20 Tips For Caregivers To Make Hospital Stays Easier”.)

Anna is still in hospital and not getting any better.

ADVERTISEMENTREMOVE AD

(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.)

ADVERTISEMENTREMOVE AD

Read Latest News and Breaking News at The Quint, browse for more from voices and blogs

Speaking truth to power requires allies like you.
Become a Member
3 months
12 months
12 months
Check Member Benefits
Read More
×
×