The Spectrum 6

In this emotional installment of The Spectrum, we follow Karen Sadler as the weight of unrelenting caregiving catches up to her, physically, mentally, and emotionally. When she collapses in her kitchen from exhaustion, it becomes clear that caregiving without rest is not sustainable. This episode explores the hidden toll of caregiver burnout, the shame that keeps so many suffering in silence, and why planning for respite isn’t a luxury—it’s a lifeline.

Transcript

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Welcome back to the Tells and Exhales of Caregivers. I'm your host, Beverly Nance and in this series titled The Spectrum, we have been exploring the unseen stories, the untold struggles, and the moments of quiet endurance that shape life with autism. If you're just joining us for the first time, go back and listen to. Episodes one through five, and it'll kind of give you some perspective on what we are talking about. The Martins and the Saddlers who are neighbors, they are bound by a diagnosis and divergence both families have sons with autism, both born just weeks apart. They live on the same street. But while Sean Martin, he thrives with support as a high functioning young adult Greg Sadler. He lives on the profound end of the spectrum, requiring 24 hours care, we have been exploring snippets of each family's life and what it's like to be on the higher end of the spectrum and the other end of the spectrum. These families, like many others, are navigating a world that rarely sees, let alone understands what life looks like after the school bus stops coming during their school years. What happens after? And now we are talking about something different. This episode is for the ones who keep going, even when their tank is empty. And this episode is titled, caregiving on Empty. Because a lot of times we focus on the person needing the care, but this episode focuses on the person giving the care. Karen Satler didn't notice the warning signs right away. They were easy to dismiss and occasional headache, feeling short of breath after climbing stairs. The ways her hands would tremble. When she tried to open a medicine bottle, she chalked it all up to age, stress, maybe even hormones. But the truth was her body was whispering. What her mouth wouldn't say, I'm exhausted. Like many caregivers, Karen wore strength like armor. Her friends called her resilient. Her church called her faithful. The social worker called her an exceptional advocate. But no one called her tired and she was bone tired, soul tired. Greg's care needs didn't pause. They were, there were meds to manage, behaviors to monitor paperwork to complete, and alarms that sounded from her inner clock, even in her sleep. She hadn't slept through the night in almost six years. Daniel, her husband and Greg's father did what he could, but his job meant long hours and unpredictable shifts. Most days, Karen didn't resent him, but on days when Greg screamed for hours or refused to eat, when the house smelled of bleach and burnt up spaghetti and the neighbor's dogs barked without end on those days, she wished someone would just see her. The first scare came one evening when she was stirring pasta and felt the room tilt. She grabbed the counter, the spoon, clattered to the floor. Her heart pounded so loudly, it echoed in her ears. She didn't tell anyone, not that night, because caregivers do that. Minimize delay, brush off because saying, I need help feels like weakness And there's no room for weakness when you're responsible for someone who needs you all the time. Karen's body had been warning her for weeks, but on a quiet Tuesday morning, it stopped whispering, and started shouting. As she stood at the stove stirring Greg's oatmeal, the edges of the room began to blur. A sudden wave of nasea hit her. Followed by the pounding in her ears. She gripped the counter, but her knees buckled the spoon, clattered to the tile floor. Just before she collapsed, her body finally surrendered to the years of ignored exhaustion. Greg was in the other room watching his favorite cartoon oblivious Daniel found her minutes later, still on the floor. Her breath shallow and her eyes close. It wasn't just fatigue, it was a full body reckoning, and it had been building for years. An ambulance was called, her blood pressure was dangerously low. The EMT said she was lucky. Daniel found her and called 9 1 1 at the hospital. Doctors asked if she had been under stress. She laughed weakly, and then she cried. Daniel rushed in, panicked. Why didn't you say anything? He asked. She didn't have the words because she had said it in the bags under her eyes. The unwashed dishes, the untouched books she used to love. She had whispered her pain in size and silence, but no one had been listening, not even herself. When the nurse handed her her discharge papers, it came with a warning. If you don't make changes, your body will make them for you. When Karen came home, her neighbors who had witnessed her leaving in the back of an ambulance rallied at first meals were dropped off, phone calls were made, and a local nonprofit offered two days of respite care, but two days wasn't enough. It barely scratched the surface of her sleep debt, let alone her emotional backlog. Respite sounds like a simple solution. Just take a break. But for parents like Karen, it's not that easy. Greg isn't the kind of child you can leave with a neighborhood babysitter or drop off at a friend's home. His needs are complex, his behaviors unpredictable, and his care requires a level of patience and understanding. That few possess. Every time Karen considered asking for help, she run through the list of people in her life and come up empty. Family lived far away. Friends didn't understand. The agencies had long waiting lists or staff who didn't stay long, so she stayed because the fear of something going wrong while she was away was worse than the exhaustion she lived with every day. For many caregivers, the absence of qualified, trustworthy help makes respite feel like a luxury instead of a lifeline. Karen struggled to accept help. I. The guilt was loud every minute away from Greg felt like betrayal. Could someone else handle his meltdowns? Would they be gentle with him if he lashed out? What if something happened while she was gone? Or what if she simply wanted to stay home and have him go out of the house for respite? That's the paradox of respite. It's essential. Yet caregivers often feel guilty for taking it. Karen's doctor encouraged her to make a respite plan. But where do you even start when you spent 25 years putting your child first, Karen didn't know, but her body did. We often hear the phrase, you can't pour from an empty cup. I. But what happens when there's no faucet, no refill station? What happens when the caregiver becomes the crisis? It sounds harsh, but it's the truth. Life will carry on if you die from exhaustion or stress. The world won't pause. Your child will still need care, and someone else, likely, less prepared, and more overwhelmed will have to step in. That reality isn't meant to scare caregivers. But to wake them up rest is not indulgence. It's insurance, it's strategy, it's survival. Caregivers must begin treating rest the same way they treat medication schedules, IEP meetings or doctor's appointments as non-negotiable because planning for respite is planning for longevity. Not just for the caregiver's life, but for the quality of care their loved ones receives Karen and Daniel reached out to a care coordinator. They built a basic respite plan. One evening off per week, a quarterly weekend, and scheduled time for medical appointments. Not for her son, but for her. They added her name to a massage therapist email list, and arranged for a friend to take her out once a month. It felt awkward at first, like she was cheating, but it saved her life. She started journaling. She bought herself a new coffee mug. She even went back to singing in the church choir. Slowly, Karen rediscovered that her identity wasn't solely Greg's mom. She was Karen, woman, wife, writer, friend, and she was allowed to matter too! Many caregivers mask what chronic stress has done to them. The physical toll is obvious. High blood pressure, migraines, autoimmune flareups. But the emotional toll often remains hidden. There's shame in admitting you're not okay. There's guilt in saying, I'm tired of this. There's fear in asking what happens if I break? And yet the silence serves no one. It isolates it. Roads respite isn't a luxury, it's a survival strategy. So how do we build a culture where caregivers feel safe asking for help? It starts with conversation with telling the truth. With sharing stories like Karen's, it continues with action. Creating a respite plan may feel daunting, but here's a simple way to start assess your needs. Physical, emotional, mental. Where do you need support? Set boundaries. Identify time blocks you need daily, weekly, quarterly. List, trusted helpers, family, friends, professionals, programs, have a backup plan. Emergencies happen, build in flexibility and put it in writing. Even a simple checklist on the fridge helps everyone stay aligned and most importantly, commit to using it because rest isn't selfish. It's sacred. If you're listening to this and you're a caregiver, I want you to know you matter. Not just the care you give you. Visit take care time.com for a printable respite planning checklist. Start small. Start somewhere, but start. For resources. Consider your state's Department of Developmental Disabilities caregiver action network. The National Respite Network, and your local parent support groups like our group on Facebook at Take Care Time, caregiving Life. This episode is brought to you by. the take care time Respite box, a curated box for caregivers filled with relaxing, thoughtful items that remind you to take a breath. From journals to candles, wearables to wellness treats. The box says what caregivers rarely hear You Matter Too! subscribe today@takecaretime.com. On our next episode of this series, the Spectrum, we speak to someone who's spent his life loving someone with autism from the other side of the sibling bond, my son, co-guardian of his sister, and the biggest champion, joins me to share his journey, his struggles, and his hopes for the future. It's the voice of a brother. It's the story behind the support. It's episode six of The Spectrum. Don't miss it. Please note. That this episode features reenactments and dramatized details. While in most cases the exact verbatim dialogue may not be known, all dramatizations are grounded in thorough research and crafted to honor the stories shared to respect the privacy and confidentiality of the individuals involved names, and some identifying details have been changed. Until next week, take care.