Mental illness – Support for the caregiver. Part 2.

Mental illness – Support for the caregiver. Part 2.

Last month, I wrote about the caregiver’s journey as they traverse the difficult terrain called mental illness. Mental illness is debilitating not only for the patient, but also for the caregiver. It completely saps the family of its energy.

Having experienced schizophrenia as well as bi polar disorder in the family, I can vouch for the fact that it leaves the victim as well as the people around completely fatigued. The focus is wholly on the patient; their wellbeing, their medications, their sleep. Their peace and happiness being paramount, the family gives its all to the care of the patient.

Sadly, though, this often leaves the caregivers with hardly any time to think about themselves. The kind of support they need during the stressful moments is equally, if not more, important. Finding a few peaceful moments just for themselves, or a change of scene, feels like a luxury they can hardly afford.

It was during the first manic episode hubby suffered after our marriage that I realised how exhausting it can get for the family. And, how important it is to find some support for ourselves, for our wellbeing.

 

Counselling:

It was also then that I learned about counselling for the caregiver. Dr. Anand Nadkarni, the psychiatrist who we have always consulted for my mom-in-law as well as hubby suggested I give myself some respite through counselling.

I can’t emphasise enough how helpful those sessions proved to be. The therapist assigned to me encouraged me to talk–just talk all that passed through my mind. Be it anger, fear, frustration, hopelessness, sorrow–all she wanted was to give my emotions an outlet through my words.

It felt like a dam had burst. I just let it all out to a person who simply held my hand and let me be. There was no fear of being judged, or reprimanded for entertaining all sorts of horrid thoughts, or saying things I shouldn’t have. And, for all that she did for me, I will be ever so grateful, to her as well as to the good doctor.

There is this fear in people that seeking therapy could mean “something is wrong with them”. A thought process that is so untrue! It’s really simple, you know. If you would seek help for a physical ailment, why wouldn’t you seek help if you found your mind suffering?

And, it is for this very reason that I write this post.

If you are a caregiver for a patient of mental illness, you need help, too. You need every kind of support you can get because it’s you who has to look after the patient. And, if you fail to take good care of yourself, how would you look after your loved ones?

Support from family and friends:

The first people to offer help of any kind is your family. Those who know you and the victim; those who know your Life closely are the ones who can offer you their unconditional support–be it emotional or financial. So, just ask for it. In fact, you need not even ask. They will rally around even when you do not mention it.

Your friends are the next in line. Find those who are closest to you and whom you trust; who know what has to be said and when. And, who offer their silent support when words become redundant. Who understand your need for privacy and are there whenever you need them.

Support groups for caregivers:

Mental illness is slowly and steadily getting the attention it deserves. Families are coming together in caring for the patients as also coming forward and sharing their stories with the world. As a result, there are support groups for families/caregivers of mental illness patients that have been formed to help and support them as they tackle their trying situation.

Support groups (Online support groups included) at:

Institute for Psychological Health

Soumanasya Psychiatry Clinic and Counselling centre

Caregivers Link Online

Caregivers Link Online, SAATHI, Ahmedabad

National Alliance on Mental Illness

…are some support groups I came across online. The first one–Institute for Psychological health was founded by Dr. Nadkarni, and the second–Soumanasya Psychiatry clinic, by Dr. Chetan Vispute– the doctors who treated mom-in-law and hubby.

You will come across many more such support groups online that you may join. Mental illness has always has this stigma attached to it, which has been the main reason why patients and their families fear speaking about their troubles. With changing times, however, families are more open about the trauma they suffer and can get the help they need.

Caring for yourself–Make it a priority:

Sharing your fears, your insecurities about Life with someone who understands your situation helps a great deal in unburdening the nagging feelings of hopelessness.

Asking for help to give yourself a break from the busy schedule becomes a necessity when there is a mental illness patient at home. So, feel free to ask for it. Some time for yourself just to step outdoors for a walk, maybe, or even to rest, or sleep, is essential for your wellbeing.

Our sleep goes for a toss, frankly, when we are tending to a mental illness patient. Therefore, invite your close relatives or friends home to ‘babysit’ the patient for a while as you get some much-needed rest.

Read books, write down your thoughts, create an artwork, play an instrument, knit, sew, cook…work on just about anything that helps take away your attention for a while. It is so very important to give your mind that breather!

The depression that sets in can become a part of your life. So, the sooner you seek help, the better. You have enough to deal with already!

Look after your health; eat well even when you find it difficult swallowing food. I know, food is the last thing on your mind when in a tense situation. But, you need the fuel for your body to function to its optimum, don’t you?

Lastly, try not to keep your feelings, your emotions bottled up within you. Your patient and their happiness is important, no doubt, but then, so is yours. Give yourself the freedom to cry, feel bad, hurt, feel angry, but also remember to pat your back and congratulate yourself for having handled a tough situation so remarkably well! Remember, positivity helps.

You need all the cheering you can get, even if it’s coming from within you!

Caring for patients of mental illness is not easy. The most important steps you could take towards finding a balance in your Life is to speak about your troubles, look after yourself, find the support you so need and take it all one day at a time.

Remember: ONE DAY AT A TIME!

And, yes, ask for help.

Love,

SHILPA…

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help for the caregiver

 

Dealing with mental illness — A caregiver’s journey.

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 a 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 spiralling 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 bi polar 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 Bi polar 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 some place 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 for the littlest of things on some days.

But, at the end of the day, I also come to my senses and realise 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 bi polar 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.

Love,

SHILPA…

 

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

 

Struggles faced by caregivers of mental illness patients

 

 

 

 

When Life gives you a jolt.

When Life gives you a jolt.

What part of Life is, actually, in your control?

We live each day planning for the next day, the next week, the next month, the next year. Rarely do we pause to live in the present; rarely do we pause to consider if the plans we make for our future will come to fruition, living, as we always are, in a world of illusion that we are the Masters of our destinies!

And, it’s as we go along living for our tomorrows, when Life gives us a jolt, straight out of the blue. Like the one I received three weeks ago.

Busy planning my tomorrows, I was blithely unaware of the storm looming on the horizon. A storm that threw life in a disarray and brought all my master plans to a standstill.

Hubby had a manic episode of Bipolar disorder, and we all found ourselves caught in the burning lava of a raging volcano. No offence meant, but, yes, that’s how a manic episode feels like. So, I won’t go much into the details except share with you how all of my best-laid plans had to be tossed into the sea, and how I came out of it all a lot more enlightened, a lot saner.

A week in the hospital and home since two, hubby is recuperating at home and getting better.

And, for me, my Life took a turn–for the better.

Yes, it’s only when our Life is in turmoil that we learn the true meaning of Life, of the trials and tribulations we face throughout and the lessons we learn from them all.

For, it’s precisely in such moments of immense stress and hopelessness that we learn to look at Life from a whole new angle, with a clarity we lacked earlier. Stressful though these past three weeks were (and that would be an understatement!), I am sorta glad we went through it all.

The stuff I learned from it is something I would never have learned otherwise.

Hubby is recovering. Touchwood. And, I got back to blogging, which I had put on the back-burner all these days. I didn’t even have the will to open my laptop or pick up a book or go out for a walk. Watching animal videos on Facebook and solving Sudoku puzzles was all I did when I felt bogged down by all that was happening.

But, nothing lasts forever, and so here I am, doing what I do best — sharing my thoughts with you. The loneliness during such periods can get rather stifling, though, so I had to get back to connecting with you all!

There are some lessons I learned from all that happened, as I said earlier, and I would like to share those with you.

Health lessons:

The saying, “Health is Wealth”, is rather underrated in today’s world, or so I believe. The mad rush to achieve success, earn money, reach ahead in “the race” has us completely disregarding our health. The result: Life decides to take matters into Her own hands and gives us a jolt.

So, prioritize your health over all else, for the simple reason that if your health doesn’t cooperate, what will you really gain in Life, except, maybe a super deluxe room at a private clinic!?

Look after your mental health, too, even if you aren’t suffering from a mental illness. Remember, it’s our mind that guides us in caring for our wellbeing.

Sleep. 8 hours or 9, or as long as it takes to rejuvenate you, but, sleep. Don’t skip it for work. Ever.

DO NOT consider yourself to be a superhero, because you are not. You are just a human being with a body that needs energy, rest and relaxation. Give yourself the necessary TLC. You need it. Always.

Life lessons:

Live in the TODAY!

Live in the present that’s been gifted to you, and, tomorrow will take care of itself. I can’t reiterate this point enough. It’s a known fact that despite knowing the preciousness of the present, we continue living in the future, for the future.

Make a Plan A and a Plan B and a Plan C, and toss it all out into the sea! Life has already made a foolproof master plan for us all and it’s according to Her plans that we will proceed. Best to just let Her take over the controls, isn’t it?

Be grateful for everything.

While running around getting things under control at the hospital, I felt abandoned by God. How I failed to see that in everything that was working out, God was at work, standing beside me, making things happen.

It’s a fact we fail to notice when in times of distress when things are not going our way. But, trust me, God never abandons us.

Push aside every negative thought, focus on the moment and count your blessings. And, breathe.

Cherish your family and close friends.

These few people are the only ones who will be by your side in your time of need. Treasure them. And, those who reach out to you in the virtual world, from miles away, enquiring about your wellbeing. There are really only a handful few people in your world who truly care.

I am thankful my dear sis-in-law was by my side for two entire weeks. My parents, brother and couple of hubby’s close friends. Can really never thank them enough! And, of course, the prayers of dear ones!

Learn to rescue yourself.

And, finally, this was a phase when the man who vowed to care for me for the rest of my Life needed to be cared for, himself. I had to take over the mantle of the Knight in the shining armour to fight the battle and slay the dragon.

It did get rather lonely and scary. I really don’t know how I functioned that week in the hospital. Maybe, it was the adrenaline that pushed me from one moment to the next, or maybe, I was running on autopilot. I have no clue. God was with me, of course.

But, I guess, I was put through this test to see if I was strong enough to rescue myself. And, I did.

So, yes, there will come a time in your Life when you will need to rescue not just your loved ones, but also yourself. You will be a bundle of nerves, exhausted, sleep-deprived and lonely, ready to flee the scene. But, believe me, you will stay put and play the rescuer, with a strength you never knew you possessed. Trust yourself. And, the Almighty.

Getting back to blogging has not been easy. The depression threatened to swallow me if I didn’t do anything about it. But, all I had to do, was look at hubby, who despite his slow movements–thanks to the anti-psychotic drugs and mood stabilizers–has gotten back to work, albeit a few hours a day.

How could I not get inspired!

 

Life is a mystery (don’t even try to solve it!). It has weird ways of teaching us lessons and giving us a reality check when we least expect it. Life can be scary, too. But, during some quiet moments, when we look at it closely, we realise that Life is also beautiful. Really, really beautiful. All we need to do is count our blessings.

There’s this quote I read recently:

“Life is constantly talking to us. Are you listening?”

To learn our lessons, we so need to listen to Life, isn’t it?

 

 

Love,

SHILPA…

P.S.

A gentle request, if you happen to be hubby’s friend. He is on the road to recovery and needs his privacy. Kindly refrain from contacting him to inquire about his wellbeing.

Thank you!

SHILPA…

 

Life is constantly talking to you. Are you listening?

 

 

The man who shone a spotlight on mental health. #WATWB

The man who shone a spotlight on mental health. #WATWB

 

For me and my family, as for  countless others, he has been an angel in disguise. For,  the ability to not only treat patients of mental illness, but also offer ceaseless support and encouragement to their caregivers with love and warmth is something only an angel can carry out, isn’t it?

Image courtesy Google (pic by Prassanna)

I met Dr. Anand Nadkarni around 20 years ago. He treated my mom-in-law, who was a patient of schizophrenia. The anxiety I experienced on learning about her condition eased quite a bit after I met him.  The most important reason behind it being, I knew he would always be there to help us and support us as we traversed the rough terrain life can be with a sick family member.

But, the instance when my belief in him grew profoundly was when I discovered my hubby suffered from bi-polar disorder. I remember we were out of town when hubby had an attack. He had been suffering since some days, but I was not aware of the storm brewing in our lives.

I called up the good doctor at an ungodly hour from the resort we were staying at, and he made all the arrangements for hubby to be treated by another doctor at a hospital where hubby had to be admitted, till he himself took over hubby’s case.

Dr. Nadkarni not only treated hubby, but ensured I went in for counselling as I was under enormous pressure. The fact that I am here today, sane and stronger, is all thanks to Dr. Nadkarni.

Dr. Anand Nadkarni has been practicing psychiatry since 30 years now. He began his journey towards bringing the concept of mental health in the spotlight 27 years ago. He established the Institute of Psychological Health, an NGO at Mumbai, where mental health professionals work towards treating mental illness patients, as well as organise  support groups and conduct community projects that help spread awareness regarding mental health.

He not only consults patients, but also conducts training programs for corporate executives, and mentors young athletes, artists and players to optimise their performance. He conducts training for elite commando forces and is also the founder and trustee of Muktangana de-addiction centre at Pune, Maharashtra. He is also a prolific writer with 17 award-winning books to his credit.

For a man who is so deeply immersed in his work, it will come as a surprise to many to meet this warm, friendly person, who has the knack of putting you at ease the  instant you meet him. The time he gives you as a doctor, a counsellor, or even a friend/guide, is all yours, without any distractions whatsoever. I would like to add, simplicity and humbleness are this wonderful man’s forte!

I remember pouring my heart out to him – how I feared losing my sanity from all the stress I went through at home – to which he  smiled, kindheartedly, and said, “You are doing absolutely fine, my dear. And, you really need not fear, I am here for you!” These words – spoken almost 15 years ago –  echo in my mind as I type this post today.

A man who has spent so many years of his life working towards sensitising the public about mental health; who has made it his life’s mission to bring awareness about mental illness deserves to be called a Hero, isn’t it?

Damyanti Biswas   Shilpa Garg   Simon Falk, Eric Lahti, Lynn Hallbrooks, and Guilie Castillo   are co-hosting the We Are The World Blogfest this month to share a snippet of positive news that shows our essential, beautiful harmony, and restore our faith in humanity.

Do join in with a real life story that speaks of something positive in a world that can be quite a scary place with all the negativity we see around. 

The Real Heroes.

The Real Heroes.

                                                                                                                                                                            A few days ago, Bombay Times carried an interview of  the Indian rapper Yo Yo Honey Singh. It was a tell-all about his disappearance from the public glare for around 18 months; a period  during which he battled a very frightening        monster called Bi-polar Disorder.The state of mind he described reminded me of what I have seen a dear one go through.  A person very close to me suffers from the  illness, and I have been a witness to the struggle – his and ours.

 

We had never heard the name, or known someone who suffered from the illness.   So,  it was akin to solving a jigsaw puzzle where the pieces just wouldn’t fit!  Our psychiatrist did explain it in detail and so did my counsellor, but, ultimately, we were on our own.  We didn’t have anyone coming up to offer solace, or assure us that this wasn’t the end. 

At times, as I sat in the hospital lounge, I would look around trying to find someone who was in a similar predicament as I; on whose shoulder I could cry and from whom I could hear some words  of hope. But, alas, I found none! It happens to be an illness – like every other mental illness – which people would rather conceal from outsiders.

There aren’t any visible symptoms for the world to make out any difference in the patient. And, divulging such information might lead to who-knows-what!  Finding oneself all alone at such a juncture in life can be devastating, to say the least.

Coming back to Mr. Honey Singh, I know the amount of  courage it takes to reveal such private (and delicate) information to the world, especially,  if one belongs to the glamorous world of films and music. I can only imagine the number of people in this glitzy world, who may be actually suffering from this, or some other illness, but who lack the courage to come out and speak about their travails!

The dark periods of the mind-boggling highs and lows that one goes through thanks to bi-polar, can be unnerving. And, if one belongs to such a  world, where one is always portrayed as an epitome of perfection, then revealing such facts could be detrimental to not only their image, but also to their career. But, here is Honey Singh, who has admitted to the world the truth about his life and come out a winner in many ways!

Some time ago,  Deepika Padukone   revealed the bout of depression that she had been through. The hopelessness and the despair she spoke about, made her a hero to many a sufferer in our midst. An actress of her calibre, coming all out about such a delicate issue was a brave decision indeed! And, now we hear about Honey Singh’s struggle with bi-polar disorder.

Unsurprisingly, these are  only two such  brave-hearts, who have opened up their wounds for the world to see;  people, who are otherwise expected to be flawless entities!

However, as opposed to the denizens of our Indian film industry, the stars of Hollywood seem to have no such inhibitions in speaking about the trials they suffer, vis-a-vis their health issues. We know a greater number of Hollywood actors who suffer from bi-polar disorder or depression than we do of our Bollywood actors.

Maybe, over there they are treated like normal human beings, whilst our actors are revered as gods!  Why isn’t it accepted that these are  illnesses that could strike anybody,  irrespective of social standing, religion or gender?  Why don’t we all – including our screen idols – accept that they are, after all, mere mortals, who are prone to maladies of any and every kind?  Why don’t we  just accept it and live, and let live?

I think the fact that we deify them is the reason they fear coming out of the closets they hide their imperfections in. Wouldn’t their acceptance of themselves, and openness about their problems make them more real  to us? 

The confessions these two  brave hearts made may actually give strength to many a troubled soul who suffer behind closed doors, away from  prying eyes. Frankly, I have no knowledge about the kind of music he makes, but, Honey Singh’s  story of  the battle he has fought could surely motivate others like him.  And, so could Deepika’s story – she, who reigns the box-office today!

We all need heroes in our lives, to look up to, to draw inspiration from. And, who better than those who have the guts to reveal their true selves,  their trials and tribulations, like Dipika and Honey Singh? They would definitely make better heroes than those who flaunt attributes which are as artificial as the smiles that adorn their faces on the giant posters along the streets!

If the stories of these two  exceptional beings are able to inspire even a handful few,  it would be an achievement in the truest sense for these celebrities, isn’t it?

A big ‘Thank you’ to you, Deepika and Honey Singh!  May your tribe increase!