"A Caregiver's testimony from Mumbai, India" on “The Indian Caregiver’s Corner”

Testimony edited with permission of Ms Kalpana Malani, primary caregiver of her mother.


“The Indian Caregiver’s Corner” :

This section is made in part, to explain theoretically the different aspects of Alzheimer’s Disease, the patients and caregivers have to face worldwide… like the impairment process, the different disorders: memory, language, organization… changes in personality and behavior…. But also, the impact of the pharmacological and non-pharmacological interventions like socialization, meditation, physical exercise, the caregiver’s role and difficulties encountered in India.

Readers are invited to enrich this section to make it an experience-based one, a resourceful section for other caregivers to find there helpful tips/ways to cope with the symptoms, the daily care activities and to face specific situations in their local setting, at home, outside, with family, doctors….

A Family Caregiver sharing her experience in Mumbai:

"What I am trying to tell is that I am unable to get an ordinary maid (untrained) in Mumbai. There is this huge ayah bureau set up (at least 15 to 20 of them) for patients so as soon as you mention that you want them to look after an elderly person these Rs. 270 per shift rate kicks in. All maids in Mumbai are aware of this so I feel that this is the main reason I cannot find one inspite of the fact that I was born and brought up in this city and have a wide circle of friends. It is not as if I have tried to think of a half day shift but my situation is thus.

My husband is 70 and a recovering cancer patient, 2 sons one in Chennai, one working at 9 hour job. I am working in my business from 11.30am to 8.30pm so with travel it means I am out of my home at 10.15 and come home at 9.15pm and work a full 6day week. You must appreciate that I need a full 8hours sleep and my husband cannot take my mum to the loo at night therefore I need a night shift too. My husband and I cook and clean in the morning as I cannot afford another maid for housework.

My mother is 80years old and was diagnosed with possible Fronto-Temporal Dementia- I say possible as they were unable to positively conclude that it was not Alzheimers. She is moving around, bathes and uses the toilet herself but needs constant supervision for this -eg she may forget how to wash herself - she has one picked up the faeces and flung it out of the window. Last month she had two epileptic seizures and fell down and needed to have stitches.

She has good days and bad days - on a bad day or night like two days ago she was awake and wanderingaround the house from 11pm to 6am- both the night maid and I were awake to make sure she did not fall. I was a wreck the next day but had to work so I wonder if people who don't have a dementia patient living with them have any clue about what we go through and when I hear about people putting their loved ones in homes I can empathize with them - it is very easy to sit on a high horse and tell people that they must look after the elderly- it's another ball game when you actually have to do it.

And forget about family and community chipping in - that is a utopian myth. My own son cringes if he sees that my mom has peed on the floor by mistake. I get a lot of token lip sympathy from family and friends about what a great job I'm doing but very little practical help. I am looking after my mum because I have a strong sense of duty plus I know that my parents sarificed a lot to see that their children were well educated and I had vowed to look after them.

I do get really pissed of on some days and wish things were different but realise that is not my mum's fault that she is like this. Sorry for the rant but this is my reality and I'm sure there are many like me struggling to come to grips with this. My sister lives in Bangalore and has given me great moral support and I can understand that she cannot be physically present".

Alzheimer's Disease in India :

Thank you so much Kalpana for sharing your experience with us on our Facebook group. I am sure the other Caregivers facing similar situations there would be very moved by seeing all your efforts in making your mother feel comfortable through the disease.

Indeed, each testimony is important for us because other Family Caregivers in India, may find there the support and relief they needed, benefit of your "advises and tips" and you may even have enlighten their pathway then.

So dear Members and Reader, thank you for bringing hope, by participating even if you don't have a "serious" problem/case but even just feelings/thoughts are worth to share. It is really helping us in raising awareness on this disease, to bring support and knowledge for Dementia Care Management in India.