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Submitted by Sen on 2 November 2017

Mala Sen had caregiving thrust upon her when her nonagenarian mother-in-law with full blown Alzheimer’s appeared in her life. She faced the challenges head on and says that she has emerged a stronger person in the process. A personal account:

A caregiver, all of a sudden

I became a care giver by default....

My husband's mother was developing Alzheimer’s which none of her 3 children were aware of .. A simple reason ..We have an insensitive approach to aging!

When she would repeat anything multiple times ..it was considered a part of growing old....

And this started somewhere in her 70s I would think.

At this juncture, I think it is important to mention the relationship I shared with my mother-in-law. We had a cordial relationship but her affections were always reserved for the two younger children and their families! My husband was the eldest. This naturally hurt me a lot as a young bride and as a new mother too. My husband did not understand any of this, perhaps because he loved his mother to distraction, one of the reasons why I took it upon myself to care for her, not knowing what it would entail, of course. Caregiving, for me, thus became a very lonely affair.

But I do owe it to my own father who helped me through this very tough episode in my life. When it was decided to shift my mother-in-law from Kolkata to Delhi, as it was difficult for us to travel every month, my father told me, "It's a big decision, just make sure you look after your mother-in-law better than you look after us"! I have always been attached to my parents and I was also naturally responsible for their well being.

The beginning

My father’s words kind of set the tone and intent for what my life would become from the moment my mother-in-law arrived on a stretcher to my 2nd floor flat with septicimia of the brain through UTI, an infection she had developed in addition to the Alzheimer’s that she was already suffering from!

My mother in law arrived with her two caregivers, a couple, from Kolkata, and I found my space suddenly invaded by people. So much so that even my son had to be shifted to another flat!

The Travails

But for now let me tell you about the patient. By now she was in fairly advanced stages of Alzheimer's but still, in moments, her dislike towards me was apparent!  I, with age and wisdom gained, and my parents’ constant monitoring chose to ignore that bit.. But it was a fight for me alright, since my husband went into a defensive mode and his siblings just didn't care! They washed their hands off any responsibility and were even indifferent to our effort which just added to my frustrations and started affecting my relationship with my husband!

I did not know who to turn to for any guidance. When I heard about Dr. Manjari Tripathi, Professor of Neurology at AIIMS, we took my 90 year old mother in law to her after pleading she consider my helplessness (she has a 6 months waiting period for appointments, I was told). Dr Tripathi told me there is little or nothing that could or would help my mother in law except medicines to calm her. Yes she would get aggressive and hit the care givers. I could sense her frustrations at such moments.

I must mention here we had about 20 strangers (attendants & caregivers) walk into our lives since her old hands decided to leave. They were a couple who had served my mother in law for a long time. They themselves developed health issues, so could not continue with caregiving anymore. My husband was busy earning and bearing the expenses that the siblings were hardly interested in sharing the burden of. And expenses naturally were huge.

So there were times when there was no help and I was cleaning her up and washing her soiled clothes and now it wrenches my gut to write about all that I had to go through........I slipped into depression.

But I had friends and my side of the family. My sister even offered to come and stay and look after my mother in law while we as a family took a break ! My son was hugely supportive. He would come to visit from his side of town which was about 7 kms away. I did not even know how he would take care of himself at the time, what he would eat, etc.. I had no mental space at the time to worry about him and he was so understanding that he did not even complain.He was in his early 20s' and dearly loved his grandmother and yes his mom too. My dog Ketchup, an adopted Dachshund, was a source of comfort then, who soaked in my moments of extreme anxiousness, which even verged on suicidal!

My husband lived in his shell of confusion, but was very defensive till the very end ....My mother in law passed away at the age of almost 95 on 25 May 2015!

How I went with the flow

My mother-in-law’s health improved in leaps and bounds soon after she arrived. She lived with dignity in my home with a lot of attention..One day I saw her trying to tie her shawl around her like a saree and I felt really sorry. The caregiver and me dressed her up in one of her saris ...and we carried her down and even took her for a drive. She had lost strength in her legs but would try to get up and walk, which was again risky. One had to keep an eye on her 24/7 so she wouldn't fall! We got all kinds of aids and accessories to ensure she never did!

The battery of attendants/caregivers that came and went is another chapter in our saga! The quality of attendants/ caregivers was often an issue, and that was one of the reasons for my health going down during that time! But my faith in the Almighty has got stronger than ever before. I survived and now I feel I was chosen to go through this ordeal.. I was not born to that family. The lady was blessed with 3 kids, but I was chosen to care for her. There must have been a past life connect for this, I believe.

No regrets at all

Life just doesn't shape up the way one would want it to. It can take off on a total tangent! But it is how one learns to face the challenges. I now feel blessed that I went through these trying experiences. After my mother-in-law passed away, I had to look after my parents as well. I lost my father the same year though. I count it as my blessing that I had the strength to carry on after the precious loss of my beloved father. I don’t have any regrets. I now have my mother and I want to make her remaining moments beautiful and I am convinced I can!

If you are feeling depressed or suicidal, ask for help. Please call the helplines here: https://www.patientsengage.com/resources/suicide-prevention-helplines-i…

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