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Mental Illness and Trials of the Caregiver

Updated on October 13, 2015

Mental Illness

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When a Dear One Suffers

What is life like when a spouse, a child, or a parent becomes mentally ill? Mental disorders range from mild to severe, and regardless of the type of disorder, the challenges of living with, and caring for, the dear one become the daily reality for many who often find themselves lost in the world, somewhere between sanity and insanity, coping as best as they can. As a spouse of a mentally ill person, as a parent, a child or a sibling - the world can crumble and take you down the treacherous road of isolation and despair. You love this person, you feel responsible for him or her, but it tears you apart as you try to make sense of what it means for you, the normal and rational being. Should you feel guilty? Definitely not! But often, you find yourself wanting to escape, and that generates feelings of guilt that can further diminish your strength in coping.

This article is geared towards finding help and coping skills because sadly, many mental illnesses are merely manageable, not entirely curable. .

A Personal Journey

It has taken me decades to find the courage to talk about my own personal journey through my mother's mental illness. Dealing with it day to day was hard enough. It was a different time and place, and people did not expose a mentally ill relative's condition to the world. The stigma, the shame, the confusion not only affected the patient but also the family. It took us all from the normal social existence into the darkness of oblivion where we hid ourselves, not just from the outside world, but also from each other and ourselves. We were knit together as a family, close in the crisis, yet becoming lonely in our spirits. Crushing loneliness in the knowledge that this was going to be a long, winding road taking us all through labyrinths of my mother's mind that lived torments that only it knew, but the horror of those torments was felt by all of us.

My mother - a woman of tremendous courage and robust in health, who prided herself on never even catching a cold - was an epitome of sacrifice and service. My parents loved each other, and my father doted on her. She was the strong one, the resilient one, the one who rose at dawn and went to bed only after all of her family, husband and 3 children had been dutifully taken care of and tended to. We were a middle-class family with my father being the sole breadwinner. My mother dedicated herself to our physical, emotional and educational needs, ensuring each one of us received the best our means would allow. Life was stressful as those means were limited, yet still reflected the energy and vitality of a purposeful life, but what was to follow, unbeknownst at the time, would rob us of all peace and become a hell in which stress can only be defined as a particle. We were always surrounded by relatives and friends of the family who would gather every weekend to feast upon my mother's deliciously prepared meals. We would play games and life was normal.

Night Falls Upon Our Lives

To cut a long story short, the sudden and catastrophic change that occurred one night, when I was 10 years old, changed our lives forever. It happened, or seemed to happen, overnight, although subsequently we realized signs had been there before. Having concluded our day, we were handed our nightcaps by my mother, which was a warm cup of milk for each before bedtime. Minutes later, my father shrieked and called out for help.

She lay on the floor, in a delirium, having suffered from hallucinations that would rock the rest of our lives at home, but most of all the life of my father for the next 30 years. She was diagnosed with manic depressive psychosis in the days to follow. It ended with her death at the age of 76, having also suffered cancer and Parkinson's disease along the way.

Torn Apart, Yet Clinging Together

As if a hurricane had struck and washed away all our precious belongings, we were tossed about as a family in the flood, each searching for the other in the perilous waters, held together by the love, but torn apart by the storm. Clinging to whatever of the other we could find when we found it, by hanging on with dear life to our own sanity.

Isolation

After the period of the initial shock came despair and increasing withdrawal from the world outside. I was young and couldn't explain why school seemed so distant, so meaningless when I could not play with my friends as I had done before, I couldn't even talk to them as I had done before. Gone was the frivolity and frolic of childhood and I was forced to grow up long before my time. I could no longer invite friends over because home had become a cauldron of some vicious brew that carried its toxic fumes into its very walls. The woman I loved as my mother had become unrecognizable. I searched for her every time I looked at her, and could only discern her when I could see past the illness into the very depths of her eyes. There it was that I still saw the love, but the anchor and guidance, the rock that supported me, was gone. Besides the really close relatives and a few friends, our party days were over. We drifted into social oblivion and the world soon forgot us.


Don't Lose Sight of Your Silver Lining

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Finding Help for YOU, the Co-Sufferer

If you find yourself in this situation, you need as much help as the loved one you are taking care of. Whether it is a child or an adult you are responsible for, it is vital that you seek ways to alleviate the feelings of anxiety, loneliness and guilt that come with this burden.

  • If you lose your temper, feel angry, resentful or overwhelmed and blow your fuse from time to time, forgive yourself! You are human. Do not carry guilt in your heart.
  • Find a therapist you can trust, just for yourself. Talk therapy helps you gain control over your emotions while you are dealing with the emotions of your relative. You will not be judged and you will know everything you tell your therapist is confidential.
  • If you have a family member or close friend who can occasionally step in to relieve you for a few hours, accept their help. Spend that time doing something for yourself, something you love to do.
  • Contact organizations that can address your needs as caregiver and connect you with those who can support you.
  • If you are far from support groups or friends, the online world has a place for you to write, blog or share your experience with others who are just as compromised as you. Start your own blog or join one. Expressing feelings in any way at all is crucial to your own mental health.
  • Be loving to yourself. Know you are doing your best and none of what is happening is your fault.

Other Helpful Resources

There was very little help or support available in the time before the wonder web came into existence. With cyber resources becoming increasingly prolific, there is always a way to connect with support groups and even find local ones that cannot help alter the course of the illness of the person you are caring for, but can help YOU gain better control over the emotional turmoil you are experiencing, to navigate through the conflicts you face.

http://psychcentral.com/lib/helping-a-family-member-with-a-mental-disorder/000120

http://www.nami.org/Content/ContentGroups/CAAC/NAMI_Basics_.htm

http://www.bbc.co.uk/science/0/22028518

http://www.youngminds.org.uk/for_parents

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    • Jodah profile image

      John Hansen 2 years ago from Queensland Australia

      Thank you for writing this important hub wordswithlove. Coming from your own personal experience with your mother makes it all the more powerful and believable. I have had a close family member suffer from mental and physical illness and have dealt with it for the last 15 years. It is not an easy road but when it is a love one you do what you have to and adapt. Thank you for sharing those online resources as well. Take care. Voted up.

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      Thank you for coming by to read my hub, John. I can so relate to what you are going through! I wrote this hub - for the first time actually verbalizing the feelings that went through me when I was ten years old - in an open post. That was over 40 years ago. I did not have access to therapists or support groups. None of my family members had it. You just hushed it up, inside and outside. Yet, we adapted, yes, but it took a toll on all of us in ways that could have been prevented if we had been able to talk, express, relate, communicate. My father's ultimate sacrifice was giving up everything to support my mother, 24 hours a day, for the last 15 years of her life. She died, utterly broken mentally and physically, and he was by her side, nursing her, serving her, loving her.

    • Jodah profile image

      John Hansen 2 years ago from Queensland Australia

      My father did the same for my mother though hers was a physical disability, however then he became ill and passed away a year before her. My wife and I had to move and care for both of them for the last few years. It must have been very difficult for you at just 10 years of age.

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      It is difficult at any age, but yes, at 10 you have no clue how to even process it. You are a wonderful son to have moved and helped your parents go through so much and your wife deserves the credit no less for supporting you in your decision. Life will always have challenges and anguish, but while we do what we must, we still need support and the ability to save a little piece of us for ourselves. Thank you for your understanding, empathy and insightful comments, John.

    • shanmarie profile image

      Shannon 2 years ago from Texas

      I have no words here. This is an incredibly moving hub, yet full of useful information for those that may need it.

    • Jackie Lynnley profile image

      Jackie Lynnley 2 years ago from The Beautiful South

      I will share this in all the ways that I can. I went through Alzheimer's with my mom and in fact that is what brought me to HP over 4 years ago; before I learned to smile or laugh at much. I just cannot imagine being 10 and being dealt what you were dealt; at least I was an adult and I guess this is where we should always know someone really and truly does always have it worse somewhere out there.

      I hope you will talk more about this; it will help you I can promise you but hopefully it will help others too. ^+

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      Thank you for reading and commenting on this hub, shanmarie. I hope, in some small way, anyone reading this will know that dealing with mental illness need not be the end of our existence as normal people. It is painful, hard, and unbearable sometimes, but we can come through if we also pay a little attention to ourselves. If anything, it helps us do a better job of caring for someone who cannot help themselves.

    • wordswithlove profile image
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      Neetu M 2 years ago from Pennsylvania, USA

      You are very kind, Jackie and I do appreciate you voting and sharing this hub. Support for caregivers is just as important as support for the mentally ill, if they are to remain sane through this struggle and help give their best in service to the ailing. Thank you. I do not have facebook or twitter accounts so I do have a limitation on passing on to the wider world what I can share, but when people like you pass it on, I am grateful. I hope I can bring myself to talk more about it; it is sometimes difficult still. There is so much buried in my mind that I want to forget, but I know it is better to let it out.

      Thank you so much! I can so understand what you must have suffered along with your mom when she had Alzheimer's.

    • Penny G profile image

      Penny Godfirnon 2 years ago from Southern Iowa

      Thank you for sharing this, I was beginning to feel REAL ALONE I have a daughter and son with schizophrenia and my son has had a total breakdown, and doesn't know us and thinks I am the enemy. He is in prison and plans to kill when he gets out. They said they can do nothing. My daughter is in a group home. SIGH

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      Oh my dear Penny, you are never alone! You just don't know how many people go through this in silence, and I did, as you do. I am here anytime you wish to share anything and will gladly send you my email, if you wish. The reason I wrote this was for folks like us. I know about schizophrenia and what it does to people. Please know that you can and must share your feelings so they don't overpower you. I am very sorry for your son and daughter, too. What you must go through as a mother!

    • Penny G profile image

      Penny Godfirnon 2 years ago from Southern Iowa

      So glad you are willing to share these hard sad things with others and reach out. So many people act like it should be a secret, but if I can't share with others I think I will sink in sadness.

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      I am willing, yes, Penny. This is my first time opening that chapter of my life openly and it took me decades to realize how vital it is that we don't lock the feelings we go through as if they don't exist. I lived buried in the rubble of my childhood for too long and so much of who I am is directly linked to it that if I am to understand myself, I need to confront the truth hidden there.

      It is true that you must share so that not only you, but others with like experiences don't sink in sadness. Enduring it alone is very painful.

    • Jackie Lynnley profile image

      Jackie Lynnley 2 years ago from The Beautiful South

      I found the tree you mention and it did indeed have leaves that look like a locust but it is a walnut tree and had walnuts on it and a couple of others near by so very old. Sorry to be so long; thought I would get by there yesterday but didn't.

      Will share your hub again since I am here!

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      Oh, thank you, Jackie! A walnut tree, wow! I wouldn't have thought of it. I did not see the walnuts on the one I saw, but then again, I wasn't looking for them! And please, no apology needed! It is never too late to learn something new. :) I appreciate you coming back.

    • AudreyHowitt profile image

      Audrey Howitt 2 years ago from California

      Thank you for sharing this intimate part of your life with is. The caregiver's role is so difficult really--and you were so young--we all do the best we can really--and life is not always easy--hopefully you have found your peace --Take care.

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      Thank you, Audrey, for coming by to read this hub. Yes, I have found my peace with it. Above all, I remember how my ailing mother loved me and that is the most valuable thing to me, now that I am a mother.

    • suzettenaples profile image

      Suzette Walker 2 years ago from Taos, NM

      My heart goes out yo you. This is such a heart wrenching story. You tell the story so well that I feel right there with you. It must have been devastating to see your mother change so before your eyes. How sad that the onset of manic depressive suddenly happened one day. I had no idea it could start that way . Your suggestions are good ones and good of you to include the web links. Thanks so much for sharing. It will certainly help others.

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      I hope so much that caregivers and relatives can find help in this kind of situation, Suzette. There is so much pain and anguish they have to cope with that is often forgotten in giving care to the mentally ill dear ones! Thank you for your kind words and wishes and for reading my hub.

    • Mekenzie profile image

      Susan Ream 2 years ago from Michigan

      wordswithlove, your story is moving and gut wrenching at the same time. Your mother, as you describe, was such a beautiful loving woman. How tragic to watch that beauty fade until she was no longer recognizable. My heart breaks at the thought of you, a 10 year old, having to live that.

      Your father is a saint and a devoted husband. It must have broken his heart to see the love of his life in such torment.

      I too wish you had the resources that you offer to those who read your story today. Through our pain we are often able to point others to answers and resources. You've done that!

      God Bless you dear lady for being both vulnerable and holding out hope to others!

      Blessings!

      Mekenzie

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      I am grateful for your kind words, Mekenzie. Thank you for reading this and if you know of anyone who is going through such trials, please let them know there is help and they need help as much as the person they are caring for. I survived it, not without a price, but I have also learned the cherish the mother whose love was boundless, no matter how lost she was, no matter how ill she was.

    • Mekenzie profile image

      Susan Ream 2 years ago from Michigan

      You've got a beautiful heart dear words! I'm sure your own mother's heart, before illness, lives on in and through you. You would make her proud!

      Have a great day.

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      Thank you, Mekenzie. I dedicated myself to becoming a full time mother to my own two girls because of what I learned from mine. There is no substitute for a mother.

    • kljones86 profile image

      Along with the wind 2 years ago from colorado

      Wow....this is an amazing hub! I lost my grandfather to Alzheimer's, it hurt very much, and to make it worse, I was deployed in Afghanistan at the time, so I never made it to the funeral. Very touching hub....

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      Thank you, Kelvin. I am so sorry you went through the loss of your grandfather without being there to hold his hand, to give one hug, to say goodbye. I know just how that feels. When my mother died, I could not be with her. My last contact with her was over a broken phone line and she could not speak. All I heard was the clanking of her bracelet she always wore, on the phone receiver. I told her many times I loved her but I am not even sure she heard me. I cried and I hope she heard me. That is all I have of the last contact with her. It hurts.

    • kljones86 profile image

      Along with the wind 2 years ago from colorado

      I am sure she heard you...Blessings to you and your family.

    • wordswithlove profile image
      Author

      Neetu M 2 years ago from Pennsylvania, USA

      Thank you, Kelvin.

    • Larry Rankin profile image

      Larry Rankin 23 months ago from Oklahoma

      Interesting look into mental illness.

    • wordswithlove profile image
      Author

      Neetu M 23 months ago from Pennsylvania, USA

      Thank you for coming by, Larry. It is so often the caregivers who become isolated along with the patient that it takes a heavy toll on their lives, too.

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