How Caregivers Play an Important Role in Schizophrenia Treatment
“For me personally, I realized when I stopped fighting against the illness so hard it actually became easier because, I think like you, I was looking for how to beat it rather than how to manage it or help him live with it. Once I dropped the idea of trying to beat it, it actually became easier for us and for me to really help him become the person he is now and live the life he has now that he’s happy with and fulfilled with.”
– Chrisa, caregiver for her son who is living with schizophrenia
Chrisa and Maye are sharing their experiences as mothers and caregivers of adult sons living with severe mental illness. While many adults living with schizophrenia are able to pursue their goals and lead meaningful lives, accepting a schizophrenia diagnosis and finding a treatment plan that works may be difficult due to the stigma associated with the chronic brain disorder. Both Chrisa and Maye learned that finding the right treatment plan for their loved one involved shared decision making, open communication, patience, and a strong support system consisting of doctors, family, and friends. By talking to his doctor about the available treatment options, Maye and her son decided to switch his schizophrenia treatment to a once-monthly injection, which has helped control his symptoms.
They are sharing their stories to help others who are supporting an adult with schizophrenia with their treatment journey in order to #ChangeSchizophreniaExpectations. Hear more from Chrisa and Maye about what advice they would give to fellow caregivers and how a change in a schizophrenia treatment plan can make the difference.
Chrisa has partnered with Janssen Pharmaceuticals, Inc., to share her story. She has been paid an honorarium for her time.
Maye is a volunteer with the SHARE Network, a Janssen Pharmaceuticals, Inc., program made up of people who are dedicated to inspiring others through their personal health journeys and stories of caring. She has been paid an honorarium for her time.
Chrisa: My name is Chrisa, and I’m a caregiver for my son Tim, who lives with schizophrenia.
TEXT ON SCREEN: Chrisa, Caregiver
Maye: And my name is Maye, I’m also a caregiver for my son Jason, who is diagnosed with schizophrenia.
TEXT ON SCREEN: Maye, Caregiver
TEXT ON SCREEN: The Importance of Caregivers
Chrisa: So what did it feel like when Jason was first diagnosed with schizophrenia?
TEXT ON SCREEN: Chrisa is partnering with Janssen Pharmaceuticals, Inc., to share her story. She has been paid an honorarium for her time.
Maye: Oh, it was completely a shock. I mean, he had had some minor, what I would call minor symptoms that maybe indicated that in hindsight that there might have been a problem. But there was nothing overt, nothing that would have really told us this child, this young man has problems. So it was a shock.
TEXT ON SCREEN: Maye is a volunteer with the SHARE Network. In consideration of her time spent participating in this activity, she has been paid an honorarium by Janssen Pharmaceuticals, Inc. Jason was diagnosed with schizophrenia when he was 23 years old.
Chrisa: What role did you play in the choice of Jason’s treatment plan?
Maye: I think it’s the support that we give him. We rely on his doctors because they are the professionals and they are the most knowledgable about knowing what medication is the best for him. And the last time he was hospitalized, his doctor recommended that he began this long-acting injectable. And you know, it’s why not, why not try this, because the other was not working, and this seemed like it would just be an ideal situation for him because he would only do it once a month and the convenience of that was a really strong selling point in my opinion.
Chrisa: I think that’s a big factor for the long-acting injectable because you know, compliance is such a difficult thing to manage with people who have a mental health issue, of trying to regulate when they take meds. They may take them more than one or two times a day even, and remembering to do all that…
Maye: Oh, yes.
Chrisa: …on top of everything else, this really gives another option that takes away that variable. So if you were sitting with another caretaker whose loved one had just gotten a schizophrenia diagnosis, what advice would you give that caretaker?
Maye: I think I would say to her or to him, I would say you know, just get ready for a long process that’s going to take place. In fact I’ve never met or talked to anyone who found that magic thing that worked right at the beginning. So it takes being in close contact with the doctors, it takes being in very close contact with your loved one who is suffering with this mental health disorder, it takes a lot of different steps in order for you to gain the information that you need. So don’t give up. Patience, oh my goodness it takes a lot of patience as you well know.
Chrisa: It really does, it really does.
Maye: But it’s easier, it gets easier. It has for us, it has gotten easier, I have to say that.
Chrisa: I think for us, for me personally, I realized when I stopped fighting against the illness so hard, it actually became easier. Because I think like you, I was looking for how to beat it, rather than how to manage it or help him live with it. And once I dropped the idea of trying to beat it, it actually became easier for us and for me to really help him become the person he is now and live the life he has now that he’s happy with and fulfilled with.
TEXT ON SCREEN: For more support and resources for caregivers, visit choicesinrecovery.com.