CW: Filicide & Death
For a parent of a child with an intellectual or developmental disability (IDD), there have probably been moments where they have wondered: What will happen to my child when I’m gone?
Members of Ireland’s parliament were recently discussing the reality faced by aging parents of adults with IDD. Independent TD Seamus Healy told the Dáil that around 2,000 people with intellectual or developmental disabilities are living with parents over the age of 70, while 500 are living with parents over 80. He talked about Before We Die, an organization formed by parents who have spent years asking who will care for their son or daughter when they no longer can. “It is not uncommon to hear a parent say, ‘I hope they go before me,'” Healy said.
For many parents, it is not only about death. It is about fear. Parents are afraid that their children will be institutionalized or neglected. They worry that after a lifetime spent fighting for services and support, the person they love most will be left in the hands of a system they do not trust.
Many parents of disabled adults have spent decades caring for their children. They know every routine, every appointment, every medication, every accommodation, and every need. They have spent years filling gaps that should never have existed in the first place.
Sometimes that fear turns into heartbreak. In Florida, Marilyn Elise Therrell, 68, was recently accused of attempting to kill her two sons, ages 32 and 30, both of whom have severe autism, before trying to take her own life. On Sept. 17, investigators interviewed Therrell and she reportedly told detectives about how taking care of her severely autistic adult sons has gotten harder since the death of her husband last year.
More than a decade earlier, Illinois mother Bonnie Liltz killed her 28-year-old daughter, Courtney, who had cerebral palsy, in a failed murder-suicide attempt. Liltz, who was battling cancer, later told the court she could not bear the thought of her daughter spending the rest of her life in a nursing home after she died. Courtney had previously stayed in a facility while her mother underwent surgery, and Liltz believed she had been neglected there.
Nothing about these tragedies should be excused. Disabled people have the same right to life, dignity, safety, and autonomy as anyone else.
These stories reveal something that is rarely discussed openly. Behind them are parents growing older while carrying an enormous weight of uncertainty. They worry about who will advocate for their child when they are gone. Who will notice when their child is not feeling well? Who will understand their needs? Who will take care of them?
The conversations about disabled people’s lives often focus on funding, waiting lists, staffing shortages, and housing. But underneath all of those issues is something deeply personal. Parents want to know their children will be safe.
For too many families, that reassurance never comes. Instead, parents grow older carrying the same worry they carried decades earlier, only now it feels heavier because time is running out. The hardest part of aging is not their own death. It is the possibility of leaving this world without knowing what will happen to their child whom they’ve cared for for decades.
Sources:
Jordan, Jake. “Kissimmee Woman Accused of Trying to Kill Her Two Autistic Sons with Medication Overdose.” WFTV, 18 Sept. 2026, https://www.wftv.com/news/local/kissimmee-woman-accused-trying-kill-her-two-autistic-sons-with-medication-overdose/CG2TSNT6ARETTBQYEFGK7EW7VQ/.
O’Halloran, Marie. “Ageing Parents of Adults with Disabilities Say: ‘I Hope They Go Before Me.’” The Irish Times, 22 Sept. 2026, https://www.irishtimes.com/politics/oireachtas/2026/09/22/ageing-parents-of-adults-with-disabilities-say-i-hope-they-go-before-me/.
Sgueglia, Kristina. “Mom Sentenced to Jail for Killing Disabled Adopted Daughter.” CNN, 19 May 2016, https://www.cnn.com/2016/05/18/health/mom-jail-killing-disabled-daughter/index.html.