Author Mark Lukach On Why He Writes About Caregiving

By May 2, 2017Blog

The nurse told me that my wife Giulia was “clearly psychotic,” but I didn’t know what that meant. Before I could even ask a question, she went away to deal with paperwork and I sat in the waiting room and did what I had been doing for the last few weeks: I took out my phone and tried to google my way to answers. I had already been searching “sleeplessness” and “paranoia” and even “delusions” but now I had a new term to add: “psychosis.”

This was my introduction to mental illness. My wife was being admitted in the psych ward, the nursing staff was being pretty unhelpful, and with nowhere else to turn, I went down the rabbit hole of the internet to try and make sense of what was going on.

I eventually found some helpful resources that helped me grasp some of the medical terms, but as the days of her psychosis stretched into weeks, and the subsequent depression stretched into months, I couldn’t find anything that helped me to make sense of my own situation. Sure, I was learning a ton about schizophrenia, bipoloar, and mania, but nothing about caregiving for someone who is mentally ill. I was facing all sorts of terrifying choices, and didn’t have any guidance: Giulia hated her medication, but it seemed to be working, so what was I to do? She wanted to head back to work, but that felt too risky to me. When we were home together, how was I supposed to structure our days?

When a loved one sinks into any type of health crisis, many of the emotions of a caregiver are unavoidable: the overwhelming worry and fear; the helplessness of not being able to do enough; the guilt when trying to take care of yourself.

But there is one feeling that’s unnecessary: the loneliness, and in my time supporting my wife, I’ve never felt more lonely. In times of crisis we tend to wall ourselves away from each other because we’re too afraid to talk about what we’re experiencing. In all of my internet searching, it felt like I was the first husband who had to take his wife to the psych ward, because no one out there was talking or writing about it.

It’s for this reason that I’ve spent the last few years writing a memoir about supporting my wife Giulia through her bipolar diagnosis and her three hospitalizations. I think it’s so important that we become more open about how mental illness is shared by the family, and although only one person may have a diagnosis, all loved ones are impacted.

It’s also why I’m so grateful for the work of organizations like Bring Change 2 Mind, who are trying to end stigma so that we don’t feel isolated into our silos of diagnosis and caregiving. In my years of writing and talking to other people whose lives have been touched by mental illness, I’ve realized how much our struggles and our joys are universal.

In the years since that nurse at the ER called my wife “clearly psychotic,” I’ve learned more about mental illness than I ever imagined I would need to. I’ve felt aching heartbreak and worry. We wouldn’t wish what we’ve gone through on anyone.

But at the same time, I wouldn’t change a thing, because in our journey, I’ve learned what it means to truly listen and care for someone, and what the deepest rewards of love can feel like.

3 Comments

  • Margaret says:

    Couldn’t have said it better myself, as one who learned my 20-year son was diagnosed with schizophrenia. The loneliness you describe is something I experienced every day and just now recognized what it really was, thanks to your words.

  • Tami F says:

    I love what you had to say! That is why I started a blog/online support group for parents and friends of special needs children. Being one of these parents can feel so isolating and judged. We all need a safe place to discuss our feelings and get some assurance that we are not alone in whatever emotion we are having!
    http://Www.thepowerofsupportgroup.com

  • Jayne says:

    I’m blown away. My story is similar however it was my husband locked up intermittently with bp2. To experience this with your little kids begging for you to let them go..i know .. the fear is over

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