What happens once I am gone?

| 27 July 2026 |

Written by Kelly Lu. Kelly is an Undergraduate Summer Student Research Fellow (USSRF) working on the ICACBR's SSHRC Partnership Grant, Balancing Act.

For caregivers, there’s a version of grief that has nothing to do with loss. It’s the kind that they carry years before anything actually happens, in different words but with the same concern: What happens once I am gone?

In interviews with the ICACBR’s Balancing Act project, caregivers in almost all six global case study sites shared the same fear about leaving behind the person they are caring for, when they are often the only person who understands their loved ones’ needs, habits, and routine. They know a day will come when they’ll have to find other ways to provide that level of support, maybe to someone they might not even know, someone who would never know their loved one the way they do. It’s a thing caregivers have to accept, even if some part of them never can.

One of the goals the Balancing Act project sought to better understand was how parents and caregivers navigate healthcare and education systems while supporting their loved ones to live more independently. But for families supporting someone with high support needs, where independent living isn’t always realistic, the care currently available to them often falls short. What is missing is a sustainable and supportive system that can outlast the people providing it. The fear goes beyond “who will take care of them”; it’s also about caregivers being advocates who can no longer speak up for their loved ones.

Beneath these worries is also the stress of who will support their loved ones financially. In resource-constrained areas, such as Guatemala, the community-based organizations have shifted much of their aid towards financial support. One parent says, “Right now, they support my daughter by teaching her how to make doughnuts and bracelets. It is okay because that will be useful for her later on.” Teaching a skill that can outlast a caregiver’s own ability to provide offers a kind of stability and hope, easing the question that caregivers carry with them from the moment they wake up to the moment they go to sleep.

In the United States, this same worry is shaped by the instability of formal support systems. Families often rely on services that depend on government funding, knowing those supports can disappear at any time. The fear about “later” is built on top of an exhaustion that’s happening now.

"This could go away overnight. I need to do everything I can to make sure the person is where they need to be… the formal supports are great, they're there, use them—but definitely use them as a tool to get to those informal supports that are much more likely to be there." (Staff Member at Community Choices).

With how contingent formal support can be, there’s no guarantee of what will remain. Caregivers always have to consider the possibility that funding can be pulled out from under them at any time, which is why families need a real safety net, one that strengthens trust and support. Because underneath all of this is also a fear about basic survival. In Mozambique, one family member says,

"Some people with disabilities, especially older women without husbands, can't work odd jobs to support themselves… these are adults who can't work because of their disabilities, they really need this support."

In Bangladesh, caregivers discussed the idea of establishing Community Caring Centres that could grow alongside a family: an age-inclusive space that could still be there for someone with a disability as they moved into adolescence and adulthood, long after their parents could no longer provide care themselves. For aging caregivers, especially, this can be reassuring: that their child won’t be left behind when they were gone.

"When I am no longer alive, who will take care of my child?" (Family Member).

That question leaves caregivers anxious, even the ones actively planning for the future. If these problems go unspoken, they will go unsolved. We saw this worry take different shapes across sites. Sometimes it was about money. Sometimes about the disruption to routine. Sometimes about independence. But under the exhaustion, the same fear, the same absence of anyone telling caregivers they don't have to figure this out alone. What’s needed is something bigger than any one family can build on its own: long-term planning, community-based care, sustained financial support, and mental health resources for caregivers themselves, not just for the people they care for.

School of Rehabilitation Therapy