Question:
Male, 38, Deletion
I have a question about what I think is confabulation. My son occasionally says things that are just not true, and I don’t really know how to respond. I don’t want to argue with him, but I do want him to know that what he said is wrong. The first time I really noticed this was about 10 years ago near the end of a long ICU stay. A nurse would come into his room, and he was convinced they had gone to school together. Or he would see someone on a TV show and insist he knew them. The doctors talked about “ICU Psychosis”, but this behavior still shows up periodically, many years after that episode. More recently he told a new caregiver that he has a step-father, which he doesn’t – and a twin, again, which he doesn’t. Is this confabulation? How should I respond?
Nurse Lynn’s Response:
Confabulation is a common cognitive characteristic for our loved ones with PWS. They believe what they are saying and believe that you should as well. I think that the bigger question should be, is this confabulation interfering with daily routines? Is this pervasive or does it come and go? If it isn’t interfering with completion of daily routines and cares, I would pick my battles.
You could try to ask something like, “Did I get married and not know it?” regarding the stepfather. You could also try to change the subject or remove the audience who is listening. Sometimes a bit of humor works but, I wouldn’t press the issue if it is not creating problems. Sometimes, the individual can become very upset when challenged about these false beliefs. I have linked a few articles about confabulation in PWS.
Resources:
PWS Lying and Confabulation PDF
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Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.