Caring for a son with schizophrenia

As I said to Nicole Audrey Spector

Grant is my oldest child, and as a child he never gave us any reason to worry. He was very smart, generous and very comfortable in his own skin. When he left home at age 18 to study graphic design at Northeastern, my husband, John, and I were confident he would do well. And so it was for a while, but when he was about 20, it became clear that he was going through a hard time.

John and I sensed that Grant struggled with anxiety, and it made perfect sense that he would too. His work/study program was intense and competitive and he was just going through some heartbreak. He headed to school, looking at the world through rose-colored glasses. Now the harsh tones of reality were coming in.

The truth about how much he was struggling became apparent during a family vacation to visit his sister Symmi in South Carolina. During the trip, Grant seemed to be in his own world and, unlike him, had little interest in spending time with his family. His anxiety was high and he was easily agitated.

Grant was generally very open with us, so it was scary to see such a drastic change. What was even scarier was observing them smiling and laughing when no one was around. We realized he was going through something more serious than we could understand. We started asking ourselves, “What is happening? Could this be mania?”

Soon after, Grant returned to school in Boston. It was March 2020. COVID-19 hit the United States and the world went into lockdown.

Two of his roommates called to let him know that Grant was saying strange things.

“He thinks he can move the paint in a painting with his own energy,” said his roommate. “He’s standing in front of the painting, moving his hands around, but we can’t see what he’s seeing.”

2025, Jen (right) with Symmi and dogs Chica, John and Grant (left to right)

Roommates said Grant was smoking marijuana several times a day. It was definitely a new behavior. We thought he was trying it, but now it’s become a regular habit. It was all shocking to hear.

At the time, how COVID-19 worked and the severity of its symptoms were still almost completely unknown. I wondered, “Could Grant’s delusional behavior be related to COVID-19?” It was reasonable to ask questions like this, especially since Grant had shown no signs of delusions or psychosis until very recently.

John and I drove from Rhode Island to Boston very worried. What we found there was Grant, who was suffering from bipolar disorder. He was dancing in euphoria and his thoughts were grandiose. He explained to us that he could teleport around the world to help those in need and resurrect the dead. I was scared and heartbroken.

It was clear that I would need to be admitted to the hospital.

Finding a hospital for Grant during COVID wasn’t easy, but we were able to make it happen. Grant was hospitalized in a psychiatric unit for a month. He stopped communicating with us and the situation became hopeless. During that time, he thought, it was home to great artists and inventors like Picasso and Steve Jobs. He didn’t get any better.

When Grant was released, it was not because he was healthy or diagnosed. Because the doctors had given up on him. They sent him home saying they would get along better with us. When we took him in, a nurse who didn’t say anything to us took him out the back door where he was mentally ill. The whole experience was a shocking demonstration of how incompetent our mental health care system can be.

Even after Grant was released, his enthusiasm continued. He eventually escaped our care and returned to Boston, where he remained for two months before being discharged by a commitment judge who determined he was “not causing harm to himself or others.”

Grant wanted nothing to do with us and went to live with a friend. I tracked him down by observing his credit card transactions. Every time I see him making a purchase, my mind becomes at ease for a moment. It was proof of life.

There were many times when I felt helpless, but I never once gave up my resolve. I have spent countless hours with mental health professionals from the National Alliance on Mental Illness (NAMI), community health centers, and other families caring for loved ones with mental illness.

After several months in Boston, Grant decided to return to our home in Rhode Island, and John and I discovered that he was still suffering from manic depression. He had barely slept and was clearly reacting to his inner voice. He had a hard time having conversations that were grounded in reality.

One day, Grant said something vaguely threatening, which alone led to a medical examination and readmission to the hospital.

The main psychiatrist working with Grant was fantastic. It was nothing like anything we had dealt with before. He suggested I get a formal diagnosis in Boston. We did, and Grant was diagnosed with schizophrenia.

Knowing basically nothing about the disease other than what she had seen on TV and in movies, she dedicated herself to learning about it and assembling a team to support Grant, which included a psychiatrist, therapist, health and wellness coach, and personal trainer. I also made sure Grant’s family and friends stayed in touch with him. Community is so important.

I have also invested in mental health support for myself, John and Symmi. I will not allow this to weaken or tear our family apart.

Grant’s Northeast Graduation Party, 2024.

Grant’s psychiatrist put him on a powerful but infrequently used atypical antipsychotic medication used to treat severe symptoms of schizophrenia. It was a game changer. Over time, Grant’s delusions lessened and we began to get our son back. He was eating, sleeping, exercising and communicating with friends. He graduated from Northeastern and began selling his art and working part-time.

Grant is doing something truly amazing today. His life may not be exactly what he planned, but he is thriving. He works, paints, produces music and has passion, purpose and a strong support network of family, friends and professionals.

2025, Jen’s Hiking in Italy

We keep stress to a minimum (routine is very important to Grant). People who meet him now without knowing his backstory will never know that he suffers from schizophrenia. He is making significant recovery.

Me and the rest of my family are doing well. We are all part of #TeamGrant and we are closer and stronger than ever.

Although it still feels overwhelming at times, I feel at ease knowing that my hard work to get Grant’s help is paying off. My son is living a purposeful and creative life and is adding so much to his community. That was an important place for him to help me get there so I could live my life comfortably again.

It is important for other caregivers for people with serious illnesses like schizophrenia to advocate for their loved ones while also caring for themselves. Don’t be afraid to ask for help. And know that this is a marathon, not a sprint. Making the most of your community can bring light and joy back into your life. And don’t forget to find time to laugh and love.

resources

Cures Foundation

Realize your potentialSCZible

Schizophrenia and Psychotic Behavior Association (S&PAA)

This training material was created with support from: Bristol Myers Squibb, She is a member of the HealthyWomen Corporate Advisory Board.

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