Pic courtesy: Sura Nualpradid at Freedigitalphotos.net
There was a time when I loved her. Her lovely eyes brimming with compassion, her beautiful smile and her warm hug. I dug them. She was my support, my moral compass, my life. Not any more! Now I find it an ordeal to step into her room. Her room minimal, her bedside littered with medicines. The stench of her bed sores and the sickly sweet smell of the ever-pervasive ointments that try hard to keep up with her infection are nauseating. She is now a caricature of her former self with a perpetual scowl adorning her face. I brace myself for her painful barbs. Why can’t she talk nicely any more? Is it my fault that she is bed ridden?
I resent her. She has taken the normal away from my life. I yearn for normal! I want to crib about normal just like my friends do. What do they know? Normal is the best thing on earth. I haven’t known normal since the past 3 years when mom had a paralytic stroke. Still in her prime, she just went from gorgeous and able to paralyzed and dependent in one stroke. Dad and I did our best to help her, nurse her, hoping, caring, praying that we get her former self back. She did make some progress. She can now speak though her speech is slightly slurred. She can lift herself a little bit and her right side has regained some function. Yet, simple things like turning on the bed bring tears to her eyes. She undergoes physiotherapy. I have heard her screams when her useless muscles are repeatedly worked. She hates daddy and I for making her go through this. Her bitterness gets worse as a result.
She wants to die. She has told us in different tones a million times. I want to scream and ask God, “Why her? Why me?” And I have done that in the shower with the water on or with the pillow over my head in my room. I don’t want my daddy to see my tears. He is so strong but I have seen him become fragile and broken since mummy’s illness. He is trying hard to manage his work and home and mummy. From being socially popular to socially secluded, I’ve seen how friends have stopped calling or visiting. We are now social pariahs. We have faded from public memory left to stew in our misery.
I hate mummy. Why did she do this to me? I need her now more than ever.
I want to go away from this family to a place where that nauseating odor from her room does not permeate every atom of my being. No amount of scrubbing with the soap takes that smell away. It is as if it is a part of me now. A Psychiatrist had come and spoken to my mother. After 3 years and not much improvement, she is well and truly defeated. She is cantankerous; she yells, screams, emotionally blackmails us because we are alive and well. She has been diagnosed as depressed. Hence the excessive swings between tears and belligerence that dad and I suffer multiple times a day. She will be put on medication now. Hopefully she will feel better. After all hope is all we’ve got left.
Who do I talk to? Dad was never the talking type. I think my brain will explode. I am 17 and hopelessly lonely. I know you must be wondering what is wrong with me. I ought to be kind, sensitive and caring. It is not her fault that she is depressed or angry. But it is not my fault either? Why must I suffer so?
Does anyone ever wonder how a caregiver survives on a daily basis? Sometimes the ailing person turns on the caregiver with anger and bitterness chipping away at their strength and compassion. Does anyone care?
This is a fictional tale inspired by real life stories I have seen around me. This is my effort to share a slice in the life of a caregiver. Often, very few pay attention to the caregiver’s trauma or show them compassion. I have seen people judge caregivers, their sympathies reserved for the ailing. It is time to build a support system for the families of the ailing and to spare them a thought.
So true. The caregiver’s trauma is so often invisible, it is something that only a loving sensitive heart can feel. The world needs more empathy not sympathy. And for that we first need to stop judging people. Thank you for writing this, Rachna.
So good to see you here, Arti. I just wish that we all be a bit more sensitive before dissecting another person’s life and pointing fingers at them.
Yes, caregiver trauma is a real problem. Too often people take it for granted that when someone falls sick, it is the duty of their near/dear to take care of them. Which is not wrong, except that the caregiver is largely ignored and everyone focuses on the sick person. Having been a caregiver, I know this. I was so fortunate to have a Mom who was cheerful and kept us smiling – most of the time – through her pain, but there were some bad days. Caregivers need a lot of care to preserve their mental and physical health.
Beautifully written Rachna. Raw and sad.
You said it like it is, Vidya. Oh the fingers that are pointed if you seek a Nursing Home or another facility because you just can’t cope or are not capable of handling the caregiving. Yes, caregivers need better support. I wonder if anyone is offering anything. Thanks for reading and for your kind words, Vidya.
I know exactly what you mean, Rachna 🙁
We were judged very harshly and made to feel terrible for admitting my aging grandma in a home when her Alzheimer’s became too advanced. It was very difficult for my in-laws to manage her as she refused to cooperate, would be violent and not even eat food. Helpless and bewildered they had to move her to a home. You should have seen the backlash and I am disgusted to say that so many people blamed my in-laws for her deteriorating health. They were compelled to take up a house and move her in there and watch her wither away and pass away after a month-long battle in hospital. And which of those sniggering folk turned up to pay their respects?
None.
I am rarely bitter but some things make me very angry and you’ve brought it out of me today. For that I thank you.
I feel for you Shailaja and for your in-laws. How cruel are people! They are only there to point their fingers. No one comes forward to offer any real help. I totally understand your bitterness. Some of the post came from my own experiences so you can imagine how deeply it hurt. Thanks for sharing this. Makes us stronger, I guess.
We ape the west in a lot of things, many of which are bad and useless, but we don’t learn from their good ideas, one of which is support groups for caregivers. Such a group is very useful to share ideas, be there for each other, even if only to spend some time together to recoup for the next week/fortnight/month. As Shailaja has said, all those who sit in judgment will disappear when they are needed. Many people are beginning to take the best course for their loved ones and themselves thankfully. Very relevant post, sensitively done.
Absolutely, Zephyr. What you say makes a lot of sense. People just point fingers and often are very rude. What hurts most is the isolation and the non-caring attitude at a time when the caregivers really need emotional help. I do wish that such support groups start here as well. Thank you for your precious comment.
Right Rachna. I’ve seen my mum struggling with my grandmom who was an Alzheimers patient. And it’s hard. Not just the physical aspect of it which is difficult enough, but also the emotional and mental trauma. Care givers should also seek some kind of psychological help or a support group of some kind.
I can only imagine how terrible it must have been for your mother, Tulika. I wonder if anyone even thinks of the caregivers.
This is truth which is generally not accepted and not discussed much. Just day before yesterday I was watched the movie “The lunchbox” where is the lady pours her heart out after death of her husband who was bed-ridden for years. The life of caregiver is very challenging.
It indeed is challenging. Thanks for reading, Sapana.
I see my mother and her siblings struggling with me grandmother who has Alzheimers. She literally makes them dance to her tunes. The caregiver is the most ignored person. They need special training – both emotionally and physically to take up the role.
Reading all your experiences, I realize that it is quite a rampant problem and an issue which no one addresses in our society. I completely agree with you, Lata.
We focus on so many things in our healthcare system, but not enough on peer support and counselling. Which is so important for caregivers, for example. Hopefully, things are changing there too, even if slowly.
A very unusual post from you. This is a second one about a disturbing subject that I have now read in succession! Remember I had pinged you about the first one?
I wonder if things are changing at all, Rickie. At least I haven’t really come across any such groups.
Yep, I know. This was lying in the drafts for a while now. I remember that I read an article in Reader’s Digest about a man who had a long and painful journey of caregiving to his dad who suffered from Parkinson’s. It was heart rending. Of course, I saw some of this first hand when my mother was ailing after her fractures — the fickle nature of friends, of society. It sort of cuts through you. I guess somewhere all that got reflected in this post. Just hope that someone reading it would think twice before saying something rude to a caregiver. Thank you for caring enough to ask.
This Reminds me of a Week i was on Rota to sit in a hospital with someone (cant go into details but i am sure you can understand what i mean).. and inspite of what this person had done the nurses and care assistants were so good to this person… Hats off to those who do this work, THey are truly people sent by GOD to look after the ailing..
Would I be able to do it , I dont think so .. We the people need to do more for them and think of them in a different picture.
Maybe I will post my experience tooo 🙂
Oh yes, that part is true. I often marvel at the hospital staff who see so much death and disease and care lovingly for the sick. Do post your experience.
Very sensitively written, Rachna. Your post took me back to the last couple of months of my dad’s life- as he struggled with heart related and dementia issues. My sister and mom bore the major brunt. Yes, it’s harrowing for caregivers. they definitely need all the support that they can get.
Thank you, Kamini. I wish that as a society we were a bit more sensitive about these issues. And also that there were groups that I could turn to.
I have seen my mother suffering from bed sores (she was bedridden only for a month). My brother’s wife did her best and we went there to help her often. Still I appreciate the way she helped my mother. It is not easy, I know.
It is wonderful of you to acknowledge that, Sandhya. Because most people behave as if it is their right to demand caregiving without an iota of compassion for them.
there are old age homes for people who need assistance.if you can afford 6 lakhs per annum,it will be easy for her and for you.people these days are open minded.old people want comfort and independence where they can’t adjust with daughter in laws or their family members.one can visit every weekend and it will be easy for old people and young married people.
i wrote long back that euthanasia is part of humanity where you want someone die peacefully and people around should let it happen for good.anyone who can’t do their daily chores on their own is eligible for euthanasia.
we should also remember how many sleepless nights one’s mother has spent to bring up her kids and how many tantrums of kids did she face with patience .when i was down with fever,my mom was awake all the night when i was school kid and even when i was engineering student and used to check my fever and she used to give me glass of water at regular intervals,1am,2am,,,,, 5am and she never complained about her sleepless nights and stress she has undergone.we should always remember our childhood when we treat older people like mom n dad.
Not everyone can afford that. Not all ailing people can think straight or even know what is good for them.
It’s not selfish at all to want a normal life; especially for such a young girl. We adults get exhausted with the burden of constantly doling out emotional and physical support. I wish there was a better professional support system that could be easily used without social stigma! Often, people have the money to afford professional caregivers but don’t because of what society will say!
So true, Roshni. Sometimes, you just don’t have the physical or emotional strength to deal with the ailing person who is close to you. And then not only individual guilt but social stigma makes the life utterly miserable.
Your article is so poignant, Rachna. Yet, the part that resonates the most with me is the last line, which is especially important in the everyday lives of parents I work with. Mothers of children on the autism spectrum are expected to sacrifice their physical and emotional health to take care of the child – it’s as what occurred was their fault all along. Instead of pressuring them to ‘suck it up’ and ‘do what is expected of them’, it is essential to build a support system to enable them to perform their duties better.
Women (neighbours, friends, acquaintances etc.) must begin with supporting each other and then work on spreading awareness among men. It’s the only way to improve the quality of life of not only mothers but their children as well.
I can only imagine, Kamini. I think a support group of women is a great idea. I wonder if there are any support groups that already exist in India where one can just gather and share the sorrows and the little triumphs.
A sensitive and realistic portrayal of a caregiver’s emotional struggles, Rachna. I can relate to some of it because of my personal experience during my mother’s last couple of years. I have also heard similar stories from a few other people who were primary caregivers for their aging or seriously ill parents. Such things are very real and nobody from the outside can understand or sit in judgement. A few years ago I worked with an American student who was designing a research study on documenting some of the experiences of caregivers. Our class ended before she could gather much data. But it was educational for me to see that she was so interested in studying this topic for her research thesis.
Thanks a lot, Beloo. Like you I had also experiences some of this angst when I tended to my mother when she was ailing. Those were the days of no internet and we felt so isolated back then.
The other side of the story, so many forget to tell. And till the time someone becomes a caregiver, they dont know. Very sensitive portrayal Rachna. I saw a short film on this..will be writing on it soon.
Thanks, Asha. Will be reading your post.
It’s very hard to be a caregiver..so much emotional upheavals are involved and as you rightly point out, often we forget to think about the caregiver and what he or she must be feeling
Oh yes, Naba. It is a tough job.
As a young child I have had similar feelings for my grandmother who was mostly bed-ridden on our vacation trips and because of that we could not travel to any place. Vacations meant just roaming around in the courtyard of our ancestral house because Mom was busy for the next two months attending to grandma and preparing her ayurvedic medicines at home. And I have also seen my paternal aunt taking care of my paternal grandma who was so sick and had lost memory. She thought she was a child. It needs a lot of will, caring attitude and patience to tend to bedridden people. I have always wondered about those who have been doing it for years. Perhaps you’ve actually written what many have felt but never bothered to accept. Touching post, Rachna!
Thanks, Rekha. I hope so. From the comments, I can see that many have seen caregiving from close quarters especially when it came to their grandparents. And we do recognize how tough it is from close quarters. Yet, the society can be really cruel and judgmental.
I remember your words, “Kabhi to emotional hone dena chahiye.” It’s good to let out our emotions instead of repressing it inside. I could very well relate with your words. Most think that child needs mother more than an adult. From my experience, I can tell that children’s need are very minimal and anyone could fulfill them easily. They only need mother at the time of feeding but grown ups have emotional needs. It cannot be fulfilled by everyone but only mother.
Oh absolutely, Ravish. The needs change so much when the children are older especially teens. That period is so crucial in their lives that without a firm, guiding hand that does it with love, they may go awry. Thanks for recognizing the importance of the message.
This post shines light on the plight of caregivers, one that often goes unnoticed. Very poignant, Rachna. Our hearts go out to those who work so hard and yearn for what was once normal.
I know somebody who was in a similar state; and greatly mistaken by everybody around. And the hearsay was even worse.
A much-needed post.
Thanks, Divya for reading and sharing your experience as well.
Rachna, I had tears in my eyes while reading this. How true, do people realize the suffering a family undergoes when any one member is thus debilitated? Day in and day out taking care of such persons, is truly an uphill task and most often thankless. I have experienced the same in my family as well, and can empathize with the feeling of helplessness and impending depression. A reach out for help is what caregivers should try for, finding and exchanging notes on coping with similar families. A support even moral, is very helpful in such cases.
Thanks so much, Kala. I have been there albeit for a short period and I know how tough and thankless that job is especially because it involves a person you love. I really wish there are more support groups for caregivers.
I can only remain quiet at the end of this piece. In barely 600 words you have created in front of me a picture which feels so real. And experienced.
I think a care giver at the end of the day needs an outlet. And freedom from guilt. Which is plenty.
You aptly summed it up. Having been a caregiver, the emotions burst forth quite naturally for me. And tales of other caregivers have fascinated me. I guess this post was a confluence of all those influences. Thanks for reading it with the heart that it needed.
It so could have been me and my sis. My Mom was paralyzed by spreading cancer for nearly a year. She, though, suffered the trauma by herself.
I have only read how courageous your mother was and how warmly you remembered her through your posts, Suresh.
Having been through this twice, once with my Nani and the second time with my Nana, I know what that feels like. Your description was so right, it was as if I was back to those days. I remember how I hated that odor, of the room. That is so ingrained in my memory. Care givers sometimes, require more attention and support, I feel.
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