Serious Mental Illness: A Caregiver’s Perspective
The ECHO-Chicago Serious Mental Illness (SMI) series is now in its 6th cohort! This series helped introduce an important component of our programming: the use of a patient voice. Originally suggested by members on the SMI Community Advisory Board, this innovative approach to the ECHO model brought individuals with lived experiences of serious mental illness to the facilitation team. Though the importance of patient-provider communication is both inherent and explicit in all of our series, the inclusion of patients as experts sharing their stories is still a growing aspect of the work. In the past year, we were lucky to add a “caregiver voice segment” to the series. She has shared powerful lessons learned while caring for someone living with a serious mental illness that have been instrumental to the learning of our SMI cohorts. With her permission, please read her story below:
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“Though I’d heard the word “schizophrenia” before, I wasn’t exposed to the realities of severe and pervasive mental illness until Thanksgiving break my son’s senior year of college when he had his first psychotic episode. Since then, I have taken this journey alongside my son, working to keep him safe and healthy. My primary role as a caregiver and parent has been to protect him, both from himself and others because I have found his diagnosis has made him a magnet for unhealthy people who try to take advantage of him and influence him to make unhealthy choices. I have been appointed as his guardian and healthcare Power of Attorney, but more importantly I am his guide and champion helping him navigate his new world. I have been able to support and encourage him while he strives to reach his goals, comply with treatment, and surround himself with good, well-intentioned people. This is what being a caregiver is; it’s not an easy path, but is one that I know so many others are walking every day.
I think of my journey as a caregiver as one that has taken place in four phases: 1) the “what is happening?” phase; 2) hibernate and heal; 3) push, guide, and heal; and, 4) maintenance and backward progress. As someone who had to educate myself about schizophrenia as my son was being diagnosed, this first stage was an important one and forced me to learn more about this diagnosis in order to be a good advocate for my child. This is an especially crucial stage during which providers can partner with parents and caregivers, by sharing resources, education, and encouragement for both the patient and those who are going to be helping them heal.
Once my son was in treatment and under the care of a psychiatrist, it was time to hibernate and heal. It was often frustrating to feel like the medications he was prescribed weren’t making a difference yet, but I would encourage other caregivers to remember that this is a long game and finding the right dosages and medications can take some time. During this phase, we also had to establish a new framework and rules for his progress, sometimes making checklists to ensure that medications were taken and good hygiene practices were followed without nagging.
As we began to see progress in his treatment, we also took time to reestablish goals together, trying to make sure that they would track his progress and goals before his diagnosis. Maybe his timeline for graduating college would have to change, but graduating and working in his chosen field could still be the goal—and it’s one he’s now achieved! I would remind other caregivers that progress is not automatic and it takes more time and patience than I could have imagined, but in the 4 ½ years since his diagnosis, I’ve seen my son meet many of his goals.
The last phase—the one we’re in now—is what I call “maintenance and backward progress.” Unfortunately living with schizophrenia means that my son has new obstacles emerge that he, and we, need to address. I think of this a bit like a game of Whack-a-mole, working together to bat down problems as they pop up with the help of his psychiatrist and care team. It can be frustrating to feel like you’ve followed all of the rules and done everything “right” and still have so many issues come up. But over time I’ve seen the bumps in the road get smaller and further apart, and that, to me, is important progress.
For the primary care and mental health providers out there, I’d encourage you to listen to and engage with your patient’s caregivers. I’m on the frontlines of this work every day with my son and want to share what I know and figure out how we can work together towards his health and well-being. Even for caregivers who aren’t legal guardians, HIPAA doesn’t prevent providers from hearing what a patient’s loved one has to say even if the provider can’t share information back. I always have my son’s best interests at heart and believe that we have the best chance of helping him when we’re all working together.”