Schizophrenia Stories from People on the Front Lines: Caring for a Family Member with Schizophrenia

Despite a myriad of challenges, these people within the network of care have been able to make a meaningful impact.

Caring for a loved one with schizophrenia — Hear Carlos and Ana’s story

Carlos received a schizophrenia diagnosis in 2011 and has been supported and cared for by his mother, Ana. They discuss their journey and how they found a sense of purpose with the help of their health care team, support groups, and other community services for schizophrenia.

Transcript

ANA I get a call from a childhood friend of ours that’s also attending the same school and she says to me, have you spoken to Carlos recently? And I say—typical mother—I reach out to him all the time, he doesn’t answer my calls. How’s he doing? And she says, well he’s not doing very well Ana, he’s living off campus as you know. He’s not allowed to come back on campus, he’s been hit with a lot of student code violations. So now it was like, it’s no longer an academic thing, now it was student code violations.

CARLOS My mother immediately came to campus when she heard something was off about my behavior. I met with my mother, my academic advisor, and my academic advisor said Carlos with all respect you’re an adult, you have the right to privacy. In a rare moment of lucidity, and seeing the stress on my mother’s face, I said with all due respect professor, I have a Cuban mother, I’ve never had the right to privacy.
So that moment really did allow us to begin a frank conversation regarding my mental health challenges at college, and from there we were able to begin the process of getting the appropriate care.
I think a critical part of my recovery was getting community-based treatment. I saw mental health professionals in their private practice offices, or I saw a team of specialists of mental health professionals in an academic research center. But again, I think an important part of my recovery was that I did get my care in the community, and early on I returned to the community.

ANA The support group setting is important, and it’s vital to the recovery because it takes the fear away. It begins by that, you shed a little fear knowing you’re not the only person doing anything. You’re not the only person suffering from this, or you’re not the only person accused of that. So when you’re now part of a team, you’re emboldened.

CARLOS Of course, my doctor provides medication, and I think of medication as necessary, but it’s not sufficient—it’s not enough. We also need, in living in wellness and recovery, to have the support of work, to have the support of school, to engage in therapy, to engage in other wellness activities. There are days that still feel like the entire focus of my day is just actively coping. It could mean removing myself from triggers of stressful situations of people; it could mean putting my headphones on to cope with noises in my environment that are triggering or hallucinations. It could mean going back home so I could take a nap so I can get enough sleep. But there are still days that I feels like my entire focus is just coping so that I can survive. But usually I remind myself that this too will pass, and I’ll go back to a better state and maybe I’m not so stressed or I’m sleeping better, and I can resume a relatively normal day-to-day.

ANA I think family support is pivotal, and it’s one of the founding pillars of recovery. Family support is important because it’s gonna—it’s where the love comes in.

CARLOS I feel very fortunate to have my mother as an advocate for me throughout my recovery, and to this point, I think this experience has made me acutely aware of how vulnerable we can be, and how dependent we can be on others for our good fortune, our health.

ANA The bigger the team of people who are on your side helping you, the more help you’re gonna get.

ANA My name is Ana.

CARLOS My name is Carlos, and I’m a person living with schizophrenia.

Caring for family members with schizophrenia can be a tremendous responsibility1

A National Alliance on Mental Illness survey showed:

In the United States, a survey showed that more than two-thirds (68%) of caregivers of people with schizophrenia are parents or step-parents.1

  • Nearly all (90% of caregivers) worry about what will happen to their loved one when they die1

Caregiving can be a full-time and challenging job.1

  • Almost 20% of caregivers for people with schizophrenia provide care for more than 40 hours a week1
  • 63% of caregivers say they have less time for themselves, 57% have trouble trying to effectively manage time, and 55% struggle to take care of their own health and well-being1

Mental illnesses such as schizophrenia affect the entire family.1

  • Some families struggle to access services and treatment providers for their loved one with schizophrenia in the health care system1