The Challenge of Caregiving
Separating the person from the illness
Recently a friend posted on social media about a visit with her adult son who suffers from an SMI. His brain illness, she said, still isn’t responding to medications, and he’s experiencing delusions. During that particular visit, she was the target of the delusions, and it left her sad and shaken when the visit was over. She noted it wasn’t the first time she’d been the target, and it likely wouldn’t be the last.
In mental illnesses like schizophrenia, delusions are fixed, false beliefs that a person firmly holds despite evidence to the contrary. The person firmly believes the delusion is true, even when presented with evidence to the contrary. The belief is not based on a reasonable interpretation of events or reality, and the person doesn’t doubt or question the truth of the belief, even when faced with conflicting information.
Delusions in Real Life
My friend Chase and I have talked a great deal about his past personal experiences with delusions. Before his incarceration and he was properly medicated, he suffered persecutory delusions where he believed people, like law enforcement, were following him, trying to “get him” all the time, and that he lived in a constant state of paranoia and high alert. He described how his “fight-or-flight” response was often in overdrive. Even today he sometimes has minor bouts of persecutory delusions and we’ve developed a system to help him talk through them until they dissipate.
With my family member who suffers from an ongoing untreated SMI, I’ve noted multiple types of delusions. Grandiose delusions—beliefs in special abilities, powers, or importance—where he believes he’s cracked a hidden language in letters and words, and uncovered secret answers to the universe. I’ve seen somatic delusions—a belief that something is wrong with their body or that their body is being affected in an unusual way—where he’s convinced there’s something wrong with his skin or body temperature and that his insides are “on fire.”
Additionally, he’s had brief instances of erotomanic delusions—a belief that someone, often a celebrity, is in love with them—where he believed he’d formed a romantic relationship with a comedic actress from Saturday Night Live and even drove from Des Moines to Denver to see her perform at a show in person.
Like my friend, I’ve also been a target of his persecutory delusions. During two incidents, he raised his voice and cursed at me, accused me of things I hadn’t done, and told me to never contact him again because I couldn’t be trusted. I know his immediate family members have been targets of more serious delusions, too.
Even though those two incidents I experienced were minor, they were still unsettling, so I can only imagine how difficult more serious delusions can be.
But more than anything, those incidents were heartbreaking because I know the young man who, when healthy and thriving, is loving, dedicated, smart, and funny. I remember the little boy with the chubby cheeks who loved video games, and the teen who excelled at sports.
I’ve learned some skills along the way, like using the LEAP method of communication, and setting some personal boundaries, like meeting in public for our visits, and declining to meet with him when it’s clear he’s using again.
The times my family member was suffering from delusions and lashed out at me, I had to make a conscious effort to differentiate between him, and his illness. To know it wasn’t personal to me. It was his illness.
Later, when his delusions abated and he was more stabile, he apologized.
I told him I appreciated his apology, but that I knew it was his illness saying those things, and not him.
And I still believe that, even though it’s easier said than done.
I often think about what an enormous emotional task it must be for primary caregivers to separate the symptoms and behaviors of an illness from the person they love and care for. How hard it must be for the heart and mind to make that distinction when you’re the target.
But as my friend said in her social media post, primary caregivers can’t, don’t, and won’t give up. Making that separation is critical, “Because, if not for us, our loved ones with SMI are even more at risk - even if they are too sick to ever know all that we do for them.
So, dry the tears, take a deep breath, and move on.
Tomorrow is another day.”
I’d love to hear from readers about their own thoughts and experiences as caregivers.
I’m a member of the Iowa Writers’ Collaborative with my “Minding the Gaps” column.
We’re a group of writers from all around the state and contribute commentary and feature stories of interest for those who care about Iowa and beyond.
We’re a group of writers from all around the state and contribute commentary and feature stories of interest for those who care about Iowa and beyond.
Click here to meet our writers and column topics.
This week I want to highlight a fantastic column called True Justice by fellow IWC member Lynn Hicks where he shares stories from the human side of the law and courts through his experiences as the chief of staff and public information officer of the Polk County Attorney’s Office in Des Moines, Iowa.
(And let me tell you, his column is thoughtful and fascinating.)
Paid subscribers are also invited to the IWC “Office Lounge” held the last Friday of the month at noon. Here is the Zoom link for April 25!
Such a thoughtful, tender look at the challenges of caregiving. Thank you for sharing, Kali.
I can remember so long ago that both of my parents were burdened with mental illness. They both at times became people I did not know. These experiences are more than fifty years ago, and I do not have the fancy clinical definitions for their specific conditions. I do still remember the experiences and have much empathy for you Kali and all care givers that are so brave and so loving. God bless you.