How to Help a Loved One Stick With Schizophrenia Treatment
Helping Someone Stick With Schizophrenia Treatment**By Dawn Brown, Director of the National Alliance on Mental Illness HelpLine Services, as told to Danny Bonvissuto**
“My son, Matthew, was diagnosed with schizophrenia at the unusually young age of 8. Typically, this condition manifests in the late teens or early 20s.”
When he turned 18, Matthew had a psychotic break that required hospitalization. Finding effective treatment took quite some time, but eventually, we found a plan that addressed his symptoms on multiple levels.
Once we found the right approach, Matthew became treatment-compliant, meaning he takes his medication on schedule. However, medication is only a small part of his overall treatment. He also keeps his appointments with his psychiatrist and therapist and actively works to maintain his overall health and wellness.
Now, at 38, Matthew enjoys his life. He has friends and engages in activities that keep him connected with others. But it’s been a long journey.
The most challenging part is when someone first begins to experience symptoms. It’s a rocky path with many ups and downs. Over time, it does get better. An engaged and informed loved one is often the best indicator of a positive outcome for a person with schizophrenia.
‘The Perfect Storm’
When people first start showing symptoms or experiencing full-blown psychosis related to schizophrenia, they often resist treatment. It’s a perfect storm: young adults coming into their own, experiencing confusing and frightening symptoms, while people around them start using labels. Naturally, they resist accepting that they have a serious mental health condition.
For a parent or caregiver, this is an incredibly difficult situation. At 18, they are legally adults and can make their own decisions about going to the hospital or taking medication. As a parent, you lose the authority to make them do these things.
Listen and Empathize
When trying to encourage someone to engage in treatment, we advise family members to truly listen to their experience. Don’t just hear, but actively listen. Their reality is different from most people’s. While you shouldn’t agree with delusions, you can empathize with their feelings.
If they believe someone is out to get them, you can respond with, “That sounds very scary. You must be very worried.”
Recognize that this is their reality. Imagine it were true—that’s what your loved one believes.
Next, listen for anything that might motivate them to seek treatment. Many people with schizophrenia struggle with sleep, and you can point out that treatment might help with their sleep cycles.
If they want to return to college, you can say, “I know you’d really love to go back to college, and I want that for you too. Let’s see what we can do to get you back there.”
Work with them to achieve their goals—not what you want, but what they want.
After listening and empathizing, ideally, you can get them to agree to some form of therapy. At that point, you become a recovery partner, working with your loved one to find solutions and support.
At First, Treatment Is Trial and Error
Many people discontinue their treatment because the medications available for schizophrenia can be ineffective and often come with severe side effects. This can lead to a loss of hope, causing them to stop their medication.
One common side effect is weight gain. Imagine a young woman being told she needs to take a medication, and within three months, she gains 30 pounds. She might want to stop taking it because, although the voices have stopped, the weight gain is distressing. But within a week or two of stopping, the voices return, and the cycle begins anew.
It’s typical to try different medications at the start of treatment. This was true for my son, Matthew, who went through four or five antipsychotics targeting the active symptoms of schizophrenia, such as hallucinations. When he finally found one that worked, it was like a light switch turned on in his brain.
Matthew does experience obesity and other unpleasant side effects. However, he understands the necessity of the medication and that the side effects are more manageable than the psychosis. This level of awareness is very mature.
I encourage people to keep searching and not settle. Always work closely with a psychiatrist and have the person with schizophrenia sign a Health Insurance Portability and Accountability Act (HIPAA) consent form so that the psychiatrist can collaborate with other mental health professionals. If you remain persistent in seeking treatment options, it’s very likely that you’ll eventually find something that works.
Explain What The Medications Do
People with schizophrenia should be fully informed and aware of anything they take. Being an active participant in their treatment involves understanding the benefits and drawbacks of any medication and knowing how it is expected to affect them.
Positive Reinforcement
Once the medication has taken effect and the symptoms have subsided, you can discuss it with them. Say something like, “Do you remember last month when you were hearing voices and couldn’t sleep? How scary and awful that was? Now that the medications are working, it’s a good thing. This is a really important step.”
This approach provides positive reinforcement. You’re connecting with them intellectually about their actions and the results they’re experiencing. They can understand the cause and effect: “I like the effect, so I’m going to keep doing this.”
Taper Treatment if It’s Not Working
Abruptly stopping treatment for schizophrenia is never advisable. If they’re unhappy with side effects or find the medication ineffective, emphasize the importance of consulting with their psychiatrist.
These medications significantly alter the brain’s chemical balance. Sometimes, it’s necessary to taper off one medication while gradually introducing another to maintain sufficient blood levels. Avoiding extremes and maintaining stability is crucial.
Listen respectfully to their reasons for wanting to stop and explore alternative options. There are many combinations available, and finding the right one requires patience. Remember, medications don’t work immediately; it often takes a couple of weeks. Discuss what options will be least disruptive to their life.
