S3 Ep 7 - Gone But Still Here The Silent Grief of Dementia Caregiving

Welcome back to the Caregiver Secrets Podcast! As many of you know, this is the show where we share practical advice, heartfelt stories, and encouragement for those who give their all to care for loved ones. Thank you for listening today. I want you to know that you’re not alone on this journey, and together, we’ll share the joys and challenges of caregiving with compassion and support. As always, let me remind you: this is not medical, financial, or health advice. Please consult with the appropriate professionals for specific concerns. My role is to inform and support you as best I can, but the actions you take are totally up to you. With that said, let’s get to work. Here is a heartfelt story that highlights what we are discussing today. Jason adjusted the pillow beneath his mother’s head, tucking the blanket gently around her frail frame. The once-unstoppable woman who had raised him, who had worked double shifts to put food on the table, who had cheered at every one of his high school basketball games, now lay in bed, her mind a distant echo of the person she used to be. Tonight was a hard night. The doctor had told him weeks ago that her memory would fade in waves, but nothing prepared him for the moment when she looked at him—her own son—with a vacant stare. "Who are you?" she whispered. Jason felt his chest tighten, as if an invisible force had reached inside and squeezed his heart. He had spent months preparing for this moment, reading articles, joining support groups, even repeating to himself that when she forgot him, it wasn’t personal. It was the disease. But now that it had happened, it felt like a fresh wound, raw and deep. "Mom, it's me—Jason," he said, forcing a smile. "Your son." Her expression remained blank for a moment, and then, as if searching through the fragments of her past, she murmured, "Jason? My little boy?" Tears pricked the corners of his eyes, but he swallowed them down. "Yeah, Mom. Your little boy." She sighed and turned her head toward the window, staring at nothing in particular. "I used to have a son named Jason," she said softly. "He had the biggest heart." Then she closed her eyes, drifting off as if the conversation had never happened. Jason sat in the chair beside her bed, the weight of grief pressing down on him. It wasn’t the kind of grief that came with death, but something heavier—an ambiguous, ongoing loss. His mother was still here, breathing, alive… and yet, the mother he knew was slipping through his fingers like sand. That night, he sat awake for hours, staring at the ceiling, replaying the moment over and over in his mind. He had given up his social life, his career aspirations, even his health to care for her. And for what? For her to forget him? The thought clawed at his soul, filling him with anger and despair. He had always believed that love was enough—that if he just cared for her well enough, she wouldn’t slip away. But love couldn’t hold back time. Love couldn’t undo dementia. The next morning, as he brewed his coffee, the exhaustion felt different—heavier. He wasn’t just physically drained; he was grieving a loss that had no funeral, no closure. A few days later, Jason found himself scrolling through a caregiving forum online, looking for someone—anyone—who understood this feeling. That’s when he stumbled across the term ambiguous grief. He read through the descriptions, and for the first time in months, he felt seen. Ambiguous grief is a unique kind of pain. It is grieving someone who is still alive but no longer the same. It is the mourning of a relationship that no longer exists as it once did. It is the slow, painful realization that your loved one is fading while you are forced to watch. Jason realized that what he was experiencing was normal, even expected. And while the grief wouldn’t disappear, he could learn to live with it. That night, he sat beside his mother’s bed again, but this time, with a new understanding. When she called him "the little boy with the biggest heart," he didn't try to force her memory. He simply took her hand and said, "He loves you very much." She smiled in her sleep. And in that moment, Jason realized that maybe love wasn’t about holding on—it was about being present. Loving the person she was now, not just the person she used to be. If Jason’s story resonates with you, know that you’re not alone. Ambiguous grief is a silent weight that many caregivers carry. The sadness of watching someone fade while still having to show up, day after day, with love and patience, is one of the hardest challenges a caregiver can face. I still remember when I first heard the term. It was a relief to know that the emotional pain I was feeling had a name and that others had experienced it too. Up until that point, I had never been exposed to the concept. Although, from that day about 7 years ago, until today, that grief still comes in waves, I now know what it is and how to deal with it. So how do we navigate this type of grief? First, acknowledge it. Pretending it doesn’t exist won’t make it go away. Naming it gives you power over it. Say it out loud if you have to: I am grieving, and that is okay. Second, find ways to honor both the past and the present. Look at old photos, tell stories, and cherish the memories. But also find joy in who your loved one is today. Even if they don’t remember you, you remember them. And that matters. Third, seek support. Grief—especially ambiguous grief—needs to be shared. Whether it’s a therapist, a support group, or a friend who understands, do not carry this weight alone. And finally, give yourself permission to feel. Some days will be harder than others. Some days, you’ll smile at the memories, and other days, they’ll break your heart. That’s okay. This journey is not about suppressing emotions—it’s about moving through them with grace. Before we close, I want to share a mantra from my book Get Risen: “I Am Experiencing Grace and Life, and Living Free from Strife.” Repeat this to yourself when the weight of caregiving feels too heavy. Let it remind you that while grief may walk beside you, so does grace. I’d love to hear from you. Have you ever felt this type of grief? Share your story in the comments or email me. And if this episode resonated with you, don’t forget to subscribe and share it with another caregiver who might need it today. And don’t forget to join our Facebook community at bit.ly/CaregiverSecretsOnFacebook, where we share stories, tips, and encouragement. Together, we can build a village of support and make this journey a little lighter. Finally, I’d love for you to grab a free copy of my book, Get Risen. I wrote this book for my fellow family caregivers and you can get it at bit.ly/GetRisen. Until next time, remember: You are seen. You are loved. And you are never alone. You’ve got this.