Alessandra

I was recently asked what the experience of being the caregiver to a person with psychosis has been like for me and my answer was: “It has made me a better human being.” My words surprised me, because my body still remembers the visceral fear and the utter hopelessness I felt when my son disappeared from our home for days. Or when he would collapse to the floor asking me: “Please make them (the voices) stop, these people who are yelling and harassing me.”

When my son first started to act in a bizarre and inexplicable manner, my family lost any sense of normality. Nothing made sense – our realities felt as altered as his. I felt hopeless when he accused me of poisoning his food. I didn’t know what to say when he would point at his arm and tell me there were tiny creatures crawling underneath his skin. The effects on our household were conflict and isolation. What my family was facing is the dilemma shared by many families of a person experiencing psychosis. In an ideal world, we would have received the assistance of specialized teams (1) to support and guide us as a family unit. Whilst that is an option in the United States, these services are scarce and not easily accessible. To further complicate the matter, often the very person at the center of the distress is confused and unwilling to seek help. It is often up to us, the caregivers, at the frontline of the experience, to learn how to approach our loved ones with compassion, kindness and understanding, and build a relationship that can start our families on the path to recovery.

For my family, that happened when I read about the Psychosis REACH program (Recovery by Enabling Adult Carers at Home) or P-REACH program. This program has been developed at the University of Washington in collaboration with experts from Stanford University and Newcastle University and is based on principles of Cognitive Behavioral Therapy. Psychosis REACH is a community-based intervention developed with and for caregivers and its goals are to increase the ability of caregivers to relate with their loved ones, find mutual support and solidarity, and set the foundation for recovery.

At the core of Psychosis REACH is a set of communication approaches called the FIRST skills, with the main goals being to rebuild a connection with our loved ones and to reduce the distress and isolation they are experiencing. As part of my journey with Psychosis REACH, I connected with Angela, a psychosis REACH Family Ambassador who is a trained family peer. As she helped me strengthen my connection with my son, she shared with me how the Psychosis REACH program has changed her relationship with her adult daughter, Tara.

Angela, as a single mom, had spent years trying to find help for her daughter, with little guidance. Because of her psychosis, her daughter has been paranoid, which led to eviction. She was afraid of leaving the house and verbally abusive. Because she was unwilling to seek help, she was eventually court-ordered into treatment.

Angela was lost in the agony, frustration and heartache of wanting a good relationship with her daughter and a path of care and coping for herself. In the absence of guidance or community, her first approach was to try to “fix” Tara: she would arrange appointments, support groups, direct Tara on what to do, setting all of the rules, all the while living in a state of high anxiety about Tara’s behaviors and mood swings.

In 2021 Angela took the Psychosis REACH training and learned the FIRST skills. With time, these communication skills changed their relationship. Here’s how Angela used the FIRST skills in her relationship with Tara:

F-Falling back on the relationship: Angela focused on finding neutral topics of conversation, discussing positive shared memories, and highlighting Tara’s strengths and goals. Her main goals were showing Tara that she was cared for and accepted, empathizing with her distressing experiences, and communicating the idea that her responses made sense given her reality. For example, instead of criticizing Tara for staying in her room most of the day, Angela might say, “Tara, I love the way you set the table. I know it’s hard for you to come out of your room since you’ve been so scared today. I remember all the times you’ve helped me in the kitchen. This brings back some really good memories, doesn’t it?”

I-Inquiring curiously: With open-ended questions, Angela dropped her assumptions and let genuine curiosity lead her conversations instead of dismissing Tara’s perceptions. In the face of Tara’s fear and paranoia of the neighbors, she might say, “I haven’t really thought that our neighbor Bob is secretly spying on our movements. What makes you think that? Is there something that he’s doing that is making you scared?”

R-Reviewing what she had learned: Building on the information she had gathered, Angela made links between the event and the subsequent thoughts, feelings and behaviors, so that they could come to a shared understanding of what was happening to Tara: “Let me see if I have this right: Since last Thursday, you haven’t been able to sleep. This morning, when you looked out of the window and saw Bob talking on his phone while he was looking at our side of the street, you thought that he was talking to the FBI and that’s when you started feeling scared and locked all of the doors and shut all of the blinds. It sounds like you were feeling unsafe. Have I understood that right?”

S- Skill building: Once they have reached a shared understanding, Angela and Tara might think together about how she can feel less scared, which is a shared goal they both agree on. Angela said, “Thank you for helping me understand what you felt. It’s hard for me to keep the front door always locked because I need to open the door to let your little sister in. What if we try to brainstorm to find some ways for you to feel safe and for your sister to be able to come inside the house?”

T- Try it out: When Tara suggested that she could go in her bedroom and lock the door so that her sister could come in, Angela would respond to the idea saying: “I like the way you came up with the idea of letting your sister in while you are in your bedroom. How would you feel about practicing this for a while, so you get used to it? You could put the date on the whiteboard every time you feel safe, and we’ll see if you feel safe the next 5 times. What do you think?”

Going through these skills was not a quick journey. It took years of trying, staying calm, and trying again. But over time, changes began to occur. Angela and Tara learnt how to communicate respectfully, Angela acknowledged and appreciated her daughter’s unique behaviors and thoughts, and she once again felt joy spending time with her.

In response to these changes Tara, feeling safer and understood, started her own journey to recovery, though it began 9 years after she first experienced psychosis. She started rebuilding her sense of self-esteem and her own identity. At this time, she has more positive thoughts about herself and feels like she has more control over her life choices. She now lives on her own without incidents with the neighbors; she leaves the house and goes to doctors or to get groceries; she sees a psychiatrist and receives counseling; she allows maintenance people into the house without fear; and Tara and Angela talk or text about their days positively and with respect. Most importantly, their conversations include Tara verbalizing her thoughts and behaviors and coping skills that she can use when she starts experiencing distress.

Angela’s journey is no longer about “fixing” her daughter, but it’s about enjoying their relationship. She has also learned self-care skills that have helped her when she feels fear, anxiety, and stress. Furthermore, she has become an advocate helping other families through the Psychosis REACH Family Ambassador Program (2) and with this “community of care” she is no longer alone.

In fact, Angela coached me in using the FIRST skills with my son and our understanding and communication have become honest and supportive. I am learning how to get closer to the truth, to respect and to be kind to myself and others, and to use meaningful, sensitive, and honest words. He recently told me “Mom, I see you with a drive for understanding something that has affected me so much, and it makes me so happy!” When I heard those words and saw his smile, I knew we were on the path of recovery.

For more information on Psychosis REACH and developing FIRST skills, please visit https://www.psychosisreach.org/

  1. Special Report: What is “coordinated specialty care” and why is it effective?
  1. A thematic analysis investigating the inaugural psychosis REACH Family Ambassador Peer Training Program.