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.