To the caregivers (And my brother, specifically)

This writing is based on my experiences caring for my mother in my early 20s for a few years, and my observations of my brother’s care of her for the last decade after I moved away.

It can be difficult to speak about the burden of caring for a person with mental illness. We love them too much to complain very often in public. We know the stigma they carry in addition to their illness is already terrible enough. As a result, the weight of caring for them can often become very isolating.

We need to help the helpers. They are on the front lines. They are often the only lifeline to a person who is falling away.

I wrote this as a guideline of sorts, to a person who would take on this job.

I’m writing it to my brother, Seth, who already knows all of it. I’m writing it to my younger self, who didn’t have a grasp on most of these ideas at the time I was neck deep in caring for her.

I’m writing it for anyone who is living this, or has lived this, and would take comfort in a familiar story.

How to be a caregiver to my mother, who has schizophrenia

1. Have endless patience and surrender, fully.

She has a terrible illness. Sometimes she fights against her own care.

The $150 you just bought in groceries on a credit card might get tossed on the lawn if she’s feeling psychotic. She will still need food tomorrow and she can not pay you back.

When she’s stressed, she might scream at you that you forgot to pay her trash bill, or that you aren’t picking up the phone when she calls 15 times in two hours while you are at work.

She will tell you that you are conspiring against her when you’ve taken a day off work, drained your bank account, neglected your wife and daughter and showed up to take her to an appointment you fought to get scheduled, just to have her refuse to open her front door.This is just one of a thousand examples that will push you to the brink of walking away, giving up, giving in.

When you consider what would happen if you left her, the answer is that she would probably die.

You are in a committed, abusive relationship when you love your mother with schizophrenia.

But the abuser is the disease. It corrodes her mind and makes her into someone she wishes she was not. When she says she’s sorry, and she often does, she really means it.

You understand this.

When you forgive her, you do it fully and sincerely, then move on quickly.

“It’s alright mom. We’re okay. No biggie. I love you.”

These are the things you will say.

This is the reality of this disease.

You love her anyway. She cannot help it.

She did not choose this, and neither did you.

2. Let go of guilt.

This is not your fault.

There is always, always more that can be done.

When you walk into her home and see squalor and smell animal waste and piles of laundry and your instinct is to run away, it’s okay. Run away for a bit and leave it be.

After years of this pattern of cleaning up, then filth creeping back in, there is no urgency any more. “It is what it is,” as they say.

Create boundaries to preserve your own health and protect your capacity to love her.

You know that analogy about putting on your oxygen mask first? Well, it’s like that. Kinda.

Sometimes the choices you will need to make are terrible.
Delivering her endless supplies of cigarettes while she’s in the beginning stages of emphysema because the alternative is pure, relentless, unmanaged psychosis.

You will feel pulled in all directions and never feel strong enough for all of it. Something will constantly be sacrificed to accommodate something else.

Some days you will win. On these days, you will look over your shoulder, wondering “what the catch” is going to be.

Many days you will lose. It’s okay. On these losing days, love is all you need to remember. It’s the essence of all of it. It’s all that matters in the end.

Try hard to remember it. Try hard.

Some days you will forget the love part, and you will feel anger and hatred. That’s okay, too. It will pass.

Try to give yourself the same grace you extend to her.

Try to remind yourself that you are only human, and you are doing your best, just like she is.

3. Keep your heart and your mind open and take the lessons this situation offers.

Loving her the way you do means you will be a better person.

It means you will understand people better.

You will judge less.

You will care more.

It means you will learn how to soften and harden your heart at the same time.

It means you will learn about patience and forgiveness.

It means you will have separate compartments in your brain that can allow you to deal with horrifying and sad situations while also playing with your kids on the couch and walking your dog and doing the dishes.

It means that you have an elevated experience as a human in this lifetime, for better and worse.

4. Try to live in reality as much as possible.

Stay away from your dark thoughts, or deep sadnesses or burning rages.

You will go there from time to time, sometimes completely unexpectedly.

This task of caring for her, of loving her and living with her illness will spread itself like a fog over every single thing you do.

It will color the overheard conversations in the grocery store when you are picking up her supplies and medicines.

You will feel it in your fingers, holding on to the steering wheel while making the long drives for small tasks – doctor appointments, checking on her, stopping by, the smell of cigarette smoke, the outline of her silhouette in the window when you walk up to the house.

The sound of her snoring when you’ve stopped in to make sure she’s still breathing. You will hear it in real life. You will hear it in your mind before you fall asleep.

You will wish for more money.

You will wish for a miracle.

You will wish for more time for yourself.

You will wonder what it’s like to be someone else, with a different life, a simpler life, an easier life.

You will question where the payoff is. Why is all this happening?

You will wonder why there is not more help, why doctors can’t fix this, why social workers don’t step in more, why people don’t understand, why you feel so lonely, where the hell is everyone?

You will use placeholder phrases like “Whatever,” or “No biggie,” or “It’ll be alright,” so many times, when it is not alright. Not at all.

You will keep the worst stories, the darkest moments, the saddest thoughts close to your chest and not speak of them because it’s too painful to share, or too complicated to explain.

It’s okay to stare into that dark place in your mind for just a moment, but you must never linger there. It will make you weaker than you already feel.

5. Remember gratitude.

Gratitude is your lifeboat to reality. Look up and look around. Be grateful for breathing. Be grateful for having food, a family, a home. Elevate the minimum standards to a treasure.

It could always be worse.

It could always be worse.

It could always be worse.

This mantra is the drumbeat. Believe it, look around and see all that you have, take a deep breath and try to let some joy seep into yourself.

Try hard to let it wash over you and keep your heart supple and porous to receive it.

This mantra is hers, too.

She believes it, too.

It runs through our family like a river.

6. Remember she loves you. Even when it seems like she doesn’t.

She’s so proud of you. She wishes she could do more, be more for you, for her family and herself.

She’s doing her best.

You are doing your best.

You love her.

You love your family.

You are enough. More than enough.

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25 comments

  1. This is so very well written, on a topic which is very difficult to capture in words. For me and my 2 brothers, it’s our younger sister who was diagnosed with Schizophrenia when a junior in high school. She’s now 52. Our Mom & Dad were her caregivers and life support for so many years. After Dad passed away 6 years ago at 77, Mom was afflicted with Alzheimers. It soon became apparent we needed to take over guardianship for our sister…which was a challenge in itself. We had much to learn about being the primary support system for our sister, while also dealing with caring for our Mom as her illness progressed. You’ve done a wonderful job here of capturing many of the coping skills one must learn to adopt, and the emotions which are an integral part of the caregivers’ experience.
    The hospitalizations, involuntary admissions, at times begging the police to take her to a facility to get help (she has rights too, which we respect, but my God it’s hard to get a person help sometimes even when it’s desperately needed !), resorting to petitions with the county attorney to get her help, the doctors and psychiatrists who prescribe but don’t really do much in the way of psychiatry for her… , the cleaning her apartment after bad spells, the cigarettes (cost, smell, mess, buying them than her throwing them away cuz she tells herself she wants to quit), the why-oh-why won’t she take her meds!? It all mixes with the impromptu screaming and yelling and irrational thought process balanced by her true thankfulness and appreciation and love at other times.
    In the end – we’re family and that’s what family does! I have often balanced myself with reminders… if she can deal with schizophrenia her whole life and retain a mostly positive attitude, then I certainly have no room to feel sorry for myself in the mundane situations life sometimes throws at us.
    Thank you for putting into words what is so difficult to convey. If only society could gain some insight and understanding of mental illness, the stigma would be lessened. I pray for compassion from apartment managers and neighbors who don’t want her living there, simply because they don’t understand her illness – what we don’t know or understand frightens us. She is not dangerous, she’s ill.

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  2. Thank you for writing this. It is so honest and beautiful and messy and heartbreaking. My 57-yr-old mother has Bipolar II (since teens) and has had numerous breakdowns and hospitalizations. She was in the hospital just two weeks ago. My dad and I (I’m an only child) tried so hard to keep her out of the hospital because it’s always traumatic but we should’ve done it sooner. Like you said, it’s so hard to hear things that are NOT her but the disease, paranoid thoughts, constant talking, angry outbursts. I know that she feels very guilty and shameful deep down inside but it doesn’t matter–she is my mom, she is strong, and I will always love her.

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  3. Oh gosh. This. I’m in tears. #3…so incredibly powerful. All of it, but #3 spoke to me so profoundly. Thank you for this and for sharing.

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  4. God Bless you and your brother for all the unconditional love and care you have for your Mom. I can see in the most recent video how much your Mom loves you both so much!!! My thoughts and prayers go up for your Mom, you and your brother. Could I send your Mom a card or something that would lift her up.. smile.. laugh? I’m in CA.. Thank you for sharing her story and all that you and your brother go through as caregivers.. as daughter and son. It’s unfortunate how caregivers.. whether family related or not.. are not appreciated as they should be for all that they do.. from their hearts. Sending hugs to all of you… Love, Sharron

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  5. This touched me in so many ways.
    Thank you for sharing.
    Your family has purpose .
    We take care if the ones we love.
    “And we know that all things work together for good to those who love God, to those who are the called according to His purpose.”
    “Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.”
    Amen.

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  6. wow, yes, this! Thank you for writing and sharing. It is definitely a group effort caring for my mom with schizophrenia, but I am the only child that is physically here and I often don’t feel like I am enough. For anyone. It’s not often I see my feelings expressed in words about this whole experience. You’ve done it very clearly. Now to continue to practice your advice. Its these things that I strive for. But the challenge of maintaining them in reality, is not always successful. To say it, is easier than to live it and I know how hard saying it can be. But I will continue to try. I will continue to learn. I will do my best to share my mom’s love with the world even if it’s through me. Thank you for helping me grow to a new level. Thanks for reminding me that we are not alone. ❤

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  7. My heart aches for not only life now but what life must have been like as a child, and the feeling of hopelessness that must have been experienced.

    I am a mother to a daughter who is bipolar and a borderline schizophrenic. She has two children. Thankfully my daughter and grand babies live with her dad and I. We are able to help raise her children and try to intervene when she has a psychotic episode which could last for days, weeks, and even months.

    We have people (even ones very close to us) who say that we spoil our child and that is what is wrong with her. We should shove her out the door and let her experience life as an adult and stop sheltering her. Only another who lives and breathes the reality of being caregiver to someone who suffers with a mental illness would understand exactly how wrong the mentality is. My baby needs our guidance, but most of all , my baby needs my love.

    I congratulate and commend both you and your brother for being what your mother needs and are able to think outside of the box and KNOW in your heart what she really needs is YOUR LOVE!!

    My best to all of you but most of all I want to pass along my love to you from afar. I too know how her life directly impacts yours.

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  8. My heart is so full of all the things that know this story well. Illness has been in my family for a very long time, multiple people, different mental health issues. I have a role that is appreciated by the the ones I choose to help and chastised by those close to me who chose not to be caregivers and chastise me for the choices I make to help, when it costs me mentally, emotionally, physically and financially. I know they think they are being practical and protective of me but is is anger and pressure to my ears and telling me it’s not my job or problem and someone else can do it is so unrealistic. There is no one else. Mental health systems, courts, health care, police, felony supervision systems? There is no real “help” It’s only a maintenance system that verifies that the ill person is in compliance with something and as long as they are not offending somehow and causing others problems it’s a good day. They try, but the number of people is staggering that need attention. Protecting oneself and helping someone with mental illness is a never ending story. But that is what family should be. A never ending story. Blessings to you for sharing your love and your struggle. C

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  9. You are an amazing writer and your familial love is truly an inspiration. I am so touched and moved by your mother’s story. The positivity you exude is amazing yet you are also so real and honest with everything. I wish the best for you, your children, your brother and mother. You are living walking angels on earth.

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  10. This has been such a blessing for me. I’m almost 60 and I fully understand every aspect of what you are living and loving with. My Mother has schizophrenia…she is 84 now. In all my years mental illness has always been pushed aside and not recognized. After all of these years I’m painfully aware that support and recognition of this desease still remains the sole responsibility of the families today. We have protected and cared for our Mother for a lifetime and the only thing I can feel is heartache and sorrow for her and what could and should have been. This is the first time anything I’ve read or heard comes close to the reality. I will have my children read this as I have never found the words. Thank you. I feel like I finally found a friend!

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  11. I have been deeply touched by the courage and love expressed in all of these posts. I personally have not had a family member with these mental illnesses, however, God has blessed me with an empathetic heart and the desire to help others. I have worked with a handful of individuals as a mental health provider and formed the most amazing relationships. As an individual outside the family unit it was much easier for me to deal with since I was not there 24-7. Each visit I made 2 -3 times per week were as unpredictable as most of moments you dealt with on a daily basis. The bad days were heart wrenching but the good days are What kept me going back. The look of excitement and love in their eyes to see me and the huge hug and thank you for coming … This filled my heart and soul each and every time. The four individuals that I cared for did not have amazing families like yours. They were alone except for caregivers in these group homes where they were kept highly medicated and left very lonely. I am so grateful to have had the opportunity to share in the lives of these individuals. I received as much as I have. Thank you for creating this blog and opening your hearts to the world. Mental illness effects so many families and it is all kept so quiet through shame and embarrassment. It is real and each person dealing with it deserves respect and genuine concern. My thoughts and prayers are with Each and every one of you who love your family members so unconditionally. They are blessed to have you!

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  12. I am in awe. I would never have had the courage to share my mother’s story. Thank you for doing this. Your mom seems wonderful. Mine is bipolar, and I’ve always had a hard time with it. But I try to keep in mind that she doesn’t mean to be ill; it’s a non option. Thank you for being strong.

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  13. I’m here to bear witness to your struggle and connect with your story. And in this tragedy of circumstance you are spectacular in your ability to discern meaning and love from hopelessness. Thank you so very much for sharing this reality.

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  14. I cant thankbyou enough for this video…. your words…..my son was diagnosed 2 years ago and is also an active alcoholic. Its is such a relief to read this. There are no words to even express my feelings. This disease that my son has is one of the hardest things i have ever had to deal with. Most of the time i question if what i do helps or hinders him. At times i feel lost and guilty. Thank You for this. It truly is life changing!

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  15. My mom has schizophrenia too, along with many other disorders. It’s so hard to find people who can be supportive. The family runs dry, they can’t do anymore for her when you try to work so hard, only to have it thrown in your face. My brother is also showing signs of having schizophrenia too, which leaves me the only one with a sane enough mind to take care of our mom. This post really hits home for me. I’m so glad I found this blog because I hope this helps find more clarity in it all. It helps to know that there are people out there that understand what this is like.

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  16. Thank you for sharing your story. I hope that writing here brings you all the release that it brought me. I wish courage, love and everlasting strength for you and your family.

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  17. Thank you for sharing. You and your brother are so strong and admirable. I have a friend with schizophrenia and have seen how hard it is on his family. It must be so difficult for all of you. My prayers are with you and your family.

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  18. Wow, this struck home. My mother has paranoid schizophrenia. Myself and my brother ended up separated in foster homes. I was 14 years old, my brother was 7 years old. I have stayed in touch with my mother for the past 27 years since being placed. She calls me every day….numerous times a day. Some days I feel so guilty because I can’t be there for her the way she needs me. I moved far away while I was in foster care. I have a family and a job here. Sometimes, she wants me to run and be there for her. I feel guilty because I can’t. My brother tries the best he can for her. It breaks my heart that we can’t do more for her. You described her so well. Thank you for this. Having a mother with mental illness makes one feel very much alone.

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  19. ,
    Hello amazing human beings,

    I rarely write a comment but words are not enough,to express you how you made me feel this morning by reading this post.Your story brought so many tears in my eyes because I feel you to the bones.
    My story doesn’t differ a lot.Mental illnesses have a lot in common.My mom was diagnosed last year with schizophrenia and It was a sock. I stayed with her under the same roof for a year.We had to go through wild nights and days ,in order to keep her in an normal state.She has been many times into the clinic and each one of them I thought she would get better but she would go off again
    .Everyday was a new day.At the beginning the feeling of fear was all over me.She would call me and I would immediately put myself in a urgent mode.I was scared,I though I couldn’t manage to deal with this.There were times I though I would be sick as well.I was feeling embarrassed by taking her into the hospitals every time she had panic attacks.
    Sometimes,I got so overwhelmed that I caught my self hoping that doctors would advise me to keep her a night in the hospital,so I could have two days to get peace on my mind as well.Yes,taking care of a person who has mental illness is one of the toughest. To me ,one of the hardest,is that I cant digest the fact that is not her anymore,she is not as cool and as cheerful she used to be.That made me cry a lot .Acceptance was a hard thing to accomplish.When I did, daily life was a bit easier.The illness is not going to change,it will be there from now one.Hiding the reality is like hiding facts.I stopped caring that much for what everybody else believed about my mom and focused of how we can get better from this.This is a one way path,so don’t put your guns down.
    .Stigma in my country goes along with mental illnesses so it so hard to speak to people about it.What I have secretly promised to my mother and my self is that I will praise awareness and I would do everything I can because I owe it to her,to her past,to her life,to her spirit,her family to what she is.She is sick ,that is as simply as that.

    It needs a lot of courage to go public as you guys did and for that you need a big bravo and an even bigger support.Pain is healing when you sharing the problem.You are not alone in this battle and in the bad days remember that.

    .

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  20. Thank you for sharing all these experiences. I work on a geriatric unit at an acute psychiatric hospital. I love my patients, and will share your site so others may see that caring for these people can be hard, but loving can be oh-so-easy as well!

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  21. This was passed onto me by my sister who just recently has taken on the roll of managing both my sister with schizophrenia and my mother who remains undiagnosed. Their episodes, mania, depression and psychosis are intertwined these days. I learned the compartmentalisation part earlier than most and I think it was my saving grace. My sister is now just learning the hardening and softening part without leaning on anger or drinking to manage the pain and frustration. I know already it’s making her a much different, stronger, better and more loving person to be in it fully, and not just a distant bystander. I still have to remind myself that my mother is ill too. It’s too easy to just cut her out and call her evil or manipulative. She’s supposed to take care of us, not the other way around. But, she’s categorically perfect for diagnosis, it just hasn’t happened. And we don’t really need a doctor to tell us what we’ve been watching our whole lives. I’m going to try and apply this to my relationship with mom and read and reread it as often as necessary to help with the dark places I still have with both if them. Thanks for passing it on, Char and to the author… really is so nice to see it in written words how we’re not alone.

    Thank you kindly!

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