Caregiver Burnout: An Ignored Epidemic
Across the country, parents raising children with severe to profound disabilities, especially those caring through adulthood are living through a crisis that most people will never have to face: caregiver burnout has become an ignored epidemic. It is easy to look away when it is not something that many others have to experience, and because of stereotypes place on the people with these disabilities it is often misunderstood and feared.
As caregivers we are not silent. We are screaming. We are begging doctors, writing letters, contacting government officials, posting on social media, and reaching out to the news media. Yet our cries fall on deaf ears, because the majority of society will never have to experience this kind of life, they can afford to look away. They don’t have to see it, and they don’t have to carry it.
And for those of us living it? None of us chose this. Unless a parent made the intentional choice to adopt, none of us chose to have a child with profound disabilities. We didn’t choose seizures, medical emergencies, endless appointments, aggressive behaviors, sleepless nights, or the weight of being responsible for another human being’s survival every single day. We didn’t choose broken systems that abandon us once our children reach adulthood and provide minimum supports during childhood.
What we did choose and continue to choose is to love our children with everything we have. Yet love does not erase exhaustion. Love does not cure autoimmune disease or cancer. Love does not rebuild the bodies of parents who are breaking down under the stress of decades-long caregiving. Many of us live with C-PTSD, we are in survival mode without a break. Imagine living in constant turmoil and never getting relief from it.
Many of us can’t do this anymore. Our children’s behaviors are too much. Their medical needs are too much. We are so drained that we feel completely broken, desperate, and isolated. Yet, because there are no safe solutions for our children, we have no other choice. We suffocate under the pressure. It is too much to put on one person. It is too much to put on two people. It is not fair. Where is the community outrage as you watch your neighbors suffer and struggle?
For single moms like me, without family support, without friend support, it is crushing. And the question becomes: What can we do? Who is going to throw us that much needed life preserver?
Where do you turn when the waiver programs aren’t providing backup?
Where do you turn when the doctors aren’t giving proper medical care?
Where do you turn when your government officials don’t even contact you back?
Where do you turn when you reach out to the news media and say, this is happening, and the media ignores your story?
Where do you turn when nobody cares and you can’t breathe?
Where do you turn?
For those who have cared for an elderly parent, you may have had a small glimpse of what this feels like. Even then, there are usually options nursing care, hospice, siblings who can step in to share the load. Now imagine what it would be like if you could never step away. For many of us, we gave birth to our children in our twenties or thirties, some even younger. This is a lifelong commitment. We will spend the majority of our adult lives’ caregiving for another human being without a break, without backup, and without an end date. If people could see it through that perspective, perhaps they would begin to understand what parents and caregivers of children and adults with disabilities are really carrying.
And this isn’t just about us. Disability can happen to anyone, at any time. None of us are immune. Until others are able to put themselves in our shoes, it’s difficult to grasp the depth of what families like mine live with every day. But if people choose to fight with us, to stand with us, to build solutions alongside us, they are also protecting themselves and their families. It is a possibility that the day may come when disability touches their lives, the systems we fight for now could be what saves them later.
Caregiver burnout is not silent. It is not hidden. It is right here in the open, in plain sight, ignored by the very systems that created it. Until the world chooses to listen to truly see caregivers and provide real, sustainable support families like ours will continue to fracture under impossible expectations.
We need help. We need people to see this, to care, and to step up. We need doctors to listen, government officials to act, and communities to surround us. If you are reading this and you can help whether through support, advocacy, or simply showing up please don’t stay silent. Be part of the solution. We cannot survive this epidemic alone. It will take a large community to carry what has been unfairly placed on the shoulders of a few.
