Dealing with mental illness — A caregiver’s journey.

It isn’t a pleasant discovery–learning that your loved one suffers from an illness, as is finding out that your loved one is wrecked by mental illness. It is a harsh reality of Life that takes ages to come to terms with.

This bitter truth makes for a traumatic experience, really. A jolt out of the blue that sends your life spiraling out of control. It takes a long time for the fact to sink in that now you will have to live with this demon amidst you.

A demon who could rear its ugly, ferocious head, unannounced, and trample over all that he finds in his way, leaving your life in a state of turmoil.

Often, the initial response is denial. It gets difficult coming to terms with this sudden change in the personality of your loved one.

Difficult to fathom the reasons behind this transformation and the inability to accept that someone as young/vibrant/cheerful/successful could fall victim to such an illness.

It’s only after making the discovery that it’s an illness of the mind that makes the person someone he is not, that Life takes a whole new meaning. Acceptance is key, but it is also something that’s the toughest to practice.

Accepting that, now, the person with you is a victim of something so frightening and that Life will no longer be how it used to be up until now, gets difficult to digest.

Having experienced two illnesses–schizophrenia and bipolar disorder–and learning to live with these, changed me completely. Changed my Life in ways more than I could have imagined. And, after almost 21 years of living with these illnesses, there are a few things I have learned. A few things that could be helpful to someone out there.

That does not mean I know it all! No. I am still learning. I still get scared and panicky thinking about those moments from so many years when mom-in-law was with us, suffering from the horrid schizophrenia.

I still worry about Life in the future with a partner who suffers from Bipolar disorder.

But, to you, who find themselves sailing in the same boat as me, know, that you are not alone. There are a million people around like us, dear reader,  battling a Life that can be at once frightening, puzzling, frustrating, demanding and depressing.

You aren’t alone, my dear. We are all in it together. And, at any time you wish to reach out for support, you can. I am here. And, so are all of those like us, who are ever ready to help each other out in our time of need.

So, here are the things I experienced in these past years. Things that might resonate with you if you find yourself sharing a similar story.

Fear is the first emotion that comes rushing at you, hitting you right where your heart beats. The startling knowledge that it’s a mental illness, here to stay, is the first blow. It often happens that when you try imagining the future, all you see is a dark tunnel, with no end in sight. No light at the end. No sign of hope.

This fear can eat you up from within, day by day. It gnaws at your mind, your soul and has the capability to leave you completely broken…if you don’t try to do something about it first.

I lived in fear for the 17 years MIL was with us. Day in day out the fear taunted me, having fun at my expense. And, to be truthful, nothing helped. Nothing except living every day as it came. For nothing was really in my control, except making sure she took her meds on time and slept well.

But then, with mental illness, no two days are alike. All I could do was keep her happy, which I did, to the best of my ability. And, so will you, for your loved ones.

Frustration at the weird ways of Life sets in, or, should I say, settles comfortably in your mind as you go about caring for your loved ones. Frustration at the meds not working their magic all the time; frustration at why Life had to throw such a curveball at you without a fair warning; frustration at every damn thing going wrong.

But, truth be told, it’s pointless being frustrated. Life’s like that. You just go with the flow. Oh, and quitting is a big NO.

I remember a friend asking me after I first discovered about hubby’s illness if I didn’t consider divorce. I was stunned as she belonged to the medical profession. Moreover, don’t we all vow to be by our partner’s side in sickness and in health?

Furthermore, what if I was the one to suffer from an illness and what if my partner walked out on me? My father-in-law was a huge example for me–he took care of my mom-in-law till his last breath. How could I even imagine leaving my partner?

Then, there’s loneliness–that darn feeling can be killing, I tell you. It feels stifling, at times, facing the wretched loneliness. But, you make friends with it. That’s all. And, you gather your people close to you for support. It’s really not as easy, though.

I am still learning to deal with it. And, thankfully, times change. There are days of respite when you can spend some beautiful moments with each other.

Anger at the patients, but more so at ourselves for losing patience is another common emotion. Well, we are all humans at the end of the day, so, of course, we will get impatient; we will lose our cool!

Sometimes I wish I could run away to someplace and live a life of solitude. I get angry at hubby for not taking care of himself; at my Life for not fulfilling so many of my dreams. I get angry about the littlest of things on some days.

But, at the end of the day, I also come to my senses and realize what a waste of energy such thinking proves to be. So, in your moments of extreme anger, cry, scream, curse all you want, let it all out.

Keeping your emotions bottled up is only going to trouble you. And, you really don’t need any more troubles than you already have, do you?

Venting out your frustration, your anger, and your sorrow is of utmost importance to you as a caregiver. DO IT.

Gratitude is what you learn to express at the end of the day, every day. Gratitude for all that you have; for a doctor you can trust, for the ability to get the best medical help, for the people who surround you, support you and care for you in your time of need.

Gratitude for every little thing that could, in its absence, make Life a lot more difficult.

Mental illness extracts a hell of a lot from its victims–the patients and their caregivers. It’s an exhausting, dreadfully lonely battle. And, all you can do, is reach out and seek support before you cave in!

P.S.

In my post, ‘When Life gives you a jolt’, I wrote about the bipolar disorder and ended the post with a request to respect people’s feelings, for not all are comfortable speaking about their illness. I end this post with a similar request.

Thank you!

This is a two-part post. In the next part, I write about the support you need as a caregiver and where you can find it.

(You can read the second part of this post here)

Struggles faced by caregivers of mental illness patients

44 thoughts on “Dealing with mental illness — A caregiver’s journey.

  1. Shilpa, you are so right about this—absolutely with you on every word you say! It is a lonely journey and only someone who has gone through this will be able to relate to it. Acceptance, as you say is the hardest thing of all, because most people are in denial in the initial years. I’m learning it the hard way too, right now, and realising that getting the right help, accepting the situation and staying hopeful is the only way forward. I’m sure your post will lead the way in enlightening people to share their journeys too and find strength in knowing that they are not alone in their solitary battles. Hugs, my dear. ❤ ❤ ❤

    Liked by 1 person

    1. It’s very important, Esha, that people know that they are not alone. Having said that, despite all the support one gets, it’s a lonely battle the caregiver has to fight. Tiring as it may be, all we can do is keep fighting.
      It feels so good to have friends like you, who support, encourage and cheer each other up.
      Thanks a million, my dear! And, apologies for the late reply!

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  2. Just so terrible to read this. It is not easy to live with someone with a mental disorder. It is emotionally and physically draining. My mum suffered from depression and was on medication and therapy. Those were some of the worst years of my life and that for my family. Luckily, we stood by each other. I have experienced each one of the emotions you have mentioned: loneliness, fear, anger, frustration and guilt. Most people empathize with the patient but very few understand the struggles of a caregiver. I wouldn’t blame a caregiver from leaving or going away. Life is not black or white is one thing I’ve understood. And we each need to make our decisions. Anything I or anyone else will say will be meaningless. You are keeping the chin up and being so brave. I wish you a lot of strength to get by. And if you need to talk or vent or just share, know that I am there to help.

    Liked by 2 people

    1. So true, Rachna. There are times when the loneliness and the exhaustion gets to you, and that’s when people just move away. Can’t blame them, really.

      It wasn’t easy writing it down, but somewhere I felt I had to do it. Maybe someone out there might feel less lonely.

      Thank you so much, dear!

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  3. Shilpa, you are on the right path as you mention take one day at a time as it comes. Once, I had looked at a future like this, but thankfully, we survived. Even today, I am unable to talk about the phase where the loved one did not know how to put on his clothes too. Hold on.. we are here to support you.

    Liked by 1 person

    1. Taking it one day at a time is the only way, Lata. If we think about our future, it all appears bleak to our very imaginative minds and then it leads to more heartache.

      Thank you for sharing your story, too, Lata. And, apologies for replying so late. ❤

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  4. Shilpa thus brings tears to my eyes.My father suffered from MDP and that stressful childhood and early adulthood left it’s mark on me.I became a doctor with an aim to practice psychiatry but it was too painful that I did not .It’s very difficult for me to remember those times.
    The caregiver needs a lot of help support and strength.May God give you strength dear.I could almost see you writing this.

    Liked by 1 person

    1. Amrita, I have often wondered why I didn’t take up psychiatry instead of Sociology when in college. At least then I would have been well armed to face the situation in my married life. But, that’s not how things work, do they? Yes, it’s stressful….and at times, I feel fatigued by it all. But, that’s all a part of life and if not this then it would have been something else. SO saying I console myself that all will be fine.

      Thank you so much for sharing your story! And, apologies for the late reply! ❤

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  5. Acceptance and gratitude are two extremely important aspects to sail through. However much it breaks my heart to read what you are going through, I also know how strong my soul sister is. At any point, if you feel that the journey is getting lonely, pls know that I’m just a message away. Love and hugs.

    Liked by 1 person

  6. Love and hugs for you and every caregiver out there. It is a tough task, and life must have changed so much in the due course of time. Your learnings will help so many, a lot. Thank you for penning this down. Fear, anger and the thought of giving up- it takes such a toll on the well being of the care giver too.

    Liked by 1 person

    1. it does take its toll on the mind and the overall health, Pratikshya. But, we can’t think about stopping or quitting, can we? Go on, we must. And, stay positive and grateful for every little thing.

      Thank you so much and so sorry for the late reply! ❤

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  7. Hugs to you..I am so overwhelmed after reading this post that I just do not know what to write. My youngest uncle suffers from Schizophrenia and I grew up watching him. It is a lonely journey as you say.

    Liked by 1 person

    1. It is a very lonely journey, B! And, at times, I feel tired, and wish to run away.

      But, where will I go? And, how will I be able to live with myself thinking about it?

      Thanks so much, Balaka! So sorry for the late reply!

      Liked by 1 person

  8. Dear Shilpa – you are made of steel. It’s not easy to face reality and even harder talking about it . Your heartfelt posts give succour to all those in a difficult position . Hugs

    Liked by 1 person

  9. Ahhh Shilpz… hugs my dear. This indeed gets frustrating and tiring, caring for an ill person. I know too well what a toll it takes mentally on the caregiver. Staying positive and keeping oneself indulged in other activities is very very tough.
    Reading your post, I could hear all your anguish in this post and wanted to me you one big hug.

    Liked by 1 person

  10. Shilpa, I can’t tell you how much I admire you for staying positive through very tough times and the authenticity with which you are sharing about them. I’m sure you don’t realize how you must be inspiring other people to be brave too, but you are. I know, I’m one of them. Hugs.

    Liked by 1 person

  11. Your strength and courage are admirable, Shilpa! One of my closest friends has bipolar disorder, and I never know which mood she will be in on any given day. You’re on a tough road. May you stay strong, but please take a break on occasion and do something nice for yourself; otherwise, you will burn out. When I was taking care of my elderly parents, I found even a 30-minute break, listening to some favourite music was helpful. Best wishes!

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  12. Hugs, Shilpa. I’m so proud of you for sharing your experiences while battling the demons as they are. Both the patients and caregivers are victims here and the caregivers need a lot more support during this tough time. A reader can’t feel nothing but admiration for the strength and bravery that you had displayed as a caregiver but I know that it wasn’t easy and it never will. Sharing your journey will serve as support to many others. That’s noble, Shilpa. Keep writing and drawing and share you works. Love! ❤️❤️

    Liked by 1 person

  13. Shilps, you rightly said ‘quitting is not an option’ and loneliness above all can be the worst feeling. I really think we are all broken to an extent- sometimes there is a name to the illness other times it’s not diagnosed and the rest of the time- it’s just life. I love that you have the courage to share this and be so open about the negative feelings. If we all were able to write about our truths, this world would be less lonely. Life is a mixed bag and no person has it all. If we share good news and success, why don’t we share the bitter reality and failures too. #showupwhole

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  14. Its tough indeed Shilpa. And hats off to you for enduring it. Life has its own way of sometimes bestowing upon us difficulties, yet we need to emerge as warriors to fight it all out. Loads of hugs and strength to you Shilpa

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  15. Shilpa, I’m all hugs for you after reading this. You’ve got nerves of steel. I’ve seen how people easily disown their family members after discovering that they have a mental illness. It’s really not easy to come to terms with something so serious & living with it every day. And I like how you’ve elucidated that it’s the illness that makes your loved one behave like that & not the person himself/herself what he/she used to be.

    Our love for them is what keeps us stay strong & be by their side till eternity come what may. It takes a lot of grit to share your experience with others about an issue so sensitive, especially when it’s within your own family. What scares me is the attitude of people who’re merely onlookers & don’t think twice before saying loathful words out of judgement & lack of empathy.

    I never knew you battled something like this so close, Shilpa. All I have for you & your family is huge respect. Specially for your father-in-law, who’d have been an iron man. Here’s me sending a lot of warmth down your way. And, I feel so emotionally connected with you.

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  16. My mom was depressed and I kept begging her to visit someone who could help. But, she just could not accept it. After years, of asking she finally went and now is in a better state of mind. I feel in India, people judge a lot.
    The irony is that the patient to feels, that he should not see a specialist.
    Thankyou for this post. I will read the part one as well.

    Liked by 1 person

    1. That’s the root cause of the problem, Zainab. People are scared about the judgements and the labels society gives those with a mental illness. I wish people were kinder towards everyone around. The world would have been a better place and Life much more bearable!

      Apologies for replying so late, Zainab! ❤

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    1. It’s a necessity to be open about this issue. People shy away from speaking about it, but are quite frank when it comes to other lifestyle diseases, like diabetes, for example.
      Mental illness is something that leaves the entire family drained, and the caregiver feeling lonely, desperate. Having been in the situation, I felt it would be therapeutic writing about my experience. Just hope it helps someone out there feel less lonely.

      Thank you for visiting, Kayl! Will definitely visit your blog!

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  17. Shilpa, I haven’t personally experienced these diseases from close quarters, but reading your post gave me a brief insight into what life would be both for the patient and the caregiver. Appreciate your thoughts on it and how rightly you have said you can’t walk out on your partner. It’s very easy to throw away a good marriage than to stick around.

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  18. Thank you for sharing your experiences. It helps knowng that I can relate to someone.I have anxiety and depression and have loced ones wgobalos have this. It can be difficult but it comes with time.

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    1. It sure can be difficult! And, it does take time to recover, whether you are a patient yourself or a caretaker. And, yes, it also feels good knowing that you aren’t alone in your battle. There are so many of us like that who are trying our best to emerge out of it stronger. I hope you do, too.
      Please, don’t lose hope!

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