Ep 5 Isolation, Love, and Everything In Between: The heartfelt realties of Caregiving

Welcome to today’s episode of Caregiver Secrets, where we share practical advice, research, emotional support and resources for caregivers of loved ones. Hi, my name is Reggie Reglus and I am so glad you are here today. Listen, I am a fellow caregiver and I just want you to know that I personally understand the crazy challenges of caregiving. I am my mom's sole caregiver and I have been doing it now for about 10 years.

But before we go any further, it is important to note that this is not medical, financial or health advice. Please seek out a proper professional for any matter you are dealing with. My goal is to inform you as best I can, but you and you alone are totally responsible for doing your own research and taking the appropriate action.
Today we’re tackling one of the most important—and sometimes overwhelming—topics that every caregiver will face at some point: how to advocate for yourself and your loved one when navigating the healthcare system and accessing social services.

Well my dear caregiver, today we’re diving deep into a topic that’s close to many caregivers' hearts, especially those caring for loved ones with dementia. The emotional journey of caregiving is intense and deeply personal. It’s filled with an entire spectrum of feelings—some of them conflicting and unexpected. If you’re a caregiver, you’ll likely recognize these emotions. And for those who haven’t experienced it firsthand, this episode may offer a window into a journey of incredible love and, at times, overwhelming challenges.
As a caregiver to my mom for the past ten years, I’ve felt a mix of emotions that have sometimes surprised me, even conflicted me. Let’s start with a core feeling that’s common for many caregivers: isolation. When you’re caring for someone with dementia, the world seems to shrink. Social events, hobbies, and even simple outings start to fade into the background. It’s easy to feel cut off from friends, from the world you once knew. I’ve spent countless nights feeling that quiet solitude, wondering if anyone else truly understands what it’s like.
Then there’s guilt—a heavy and complicated emotion that seems to stick around. You might want your loved one to live as long as possible because you cherish them. At the same time, the thought of an end to their suffering—and perhaps to the endless cycle of caregiving—crosses your mind, and that’s okay. These conflicting desires, like wanting peace for your loved one while also yearning for your own release, are normal yet can leave you feeling immense guilt. Research from the Alzheimer's Society highlights how common these emotions are, especially among dementia caregivers who often face years of caregiving with few breaks.
If you’re an adult child caring for a parent, the role reversal can be confusing and painful. You remember a time when your parent cared for you, protected you, guided you through life. Now, the roles are reversed, and you find yourself managing their needs and making decisions on their behalf. The confusion of these shifting roles adds another layer of complexity, creating sadness and sometimes even resentment.
For me, the highs and lows are real. There are moments of joy and fulfillment in caregiving. The joy comes from the little things—seeing my mom laugh or have a good day reminds me that, despite everything, she’s still here. Fulfillment stems from the knowledge that I’m making a difference in her life. I’m giving her comfort, familiarity, and dignity. That knowledge can be deeply gratifying.
But alongside joy, there’s anticipatory grief—a sadness for the slow, inevitable loss of the person she once was. It’s like a shadow that lingers, reminding you that each day is both precious and painfully fleeting. This anticipatory grief is well-documented, with scholars noting that dementia caregivers often grieve as they witness cognitive decline, experiencing a “slow goodbye” that starts long before the physical end.
Through all this, love remains. The love for my mom is what keeps me going, even on the hardest days. It’s that love that pushes me to show up, day after day, even when I’m tired, frustrated, or just overwhelmed.
If you’re a caregiver, you might wonder how to manage this whirlwind of emotions. My first tip is to name your emotions. Using an emotion wheel can help you identify exactly what you’re feeling, whether it’s guilt, sadness, or joy. Naming these emotions can be surprisingly freeing; it helps to validate them rather than pushing them aside.
Second, accept what you feel without judgment. Every emotion you experience, even the ones that seem contradictory, is valid. Allowing yourself to feel them without guilt is part of caring for yourself, which is essential for sustaining your caregiving role over time.
Being kind to yourself can be challenging, but it’s a vital practice. Remind yourself that you’re doing the best you can, that this journey isn’t easy, and that it’s okay to have bad days. Laughter is also important. Find moments to laugh—whether it’s with your loved one, through a funny show, or with friends. Laughter has a unique ability to ease tension and bring a sense of normalcy, even if just for a moment.
Lastly, don’t be afraid to reach out for support. Whether it’s through friends, family, or support groups, sharing your journey with others who understand can lighten the load. The Alzheimer's Society, for example, offers numerous resources for caregivers, acknowledging the emotional strain and providing ways to cope.
In this caregiving journey, there’s no perfect way to feel. The mix of emotions is a part of the experience, and it doesn’t mean you’re failing or that you love any less. Embracing this emotional journey with compassion for yourself can help make the road a bit easier to travel. Thank you for listening, and I hope this helps you feel seen, supported, and understood in the challenging, beautiful, and often conflicting journey of caregiving.