Ep 6 Lost in Translation: The Emotional Toll of Caring for Someone with Dementia

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 Reginald Reglus and I am glad you are here today. I am a fellow caregiver. I have been serving my mom for about 10 years after she was diagnosed with dementia. As usual let me remind you that I say that to impress upon you that I personally understand the challenges of caregiving.

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 I want to say something that no one may ever tell you about caregiving. This is something you may not realize at first and indeed this is hidden from most of your family, co-workers, friends and acquaintances, unless they have personally dealt with it. Caregiving for a loved one by yourself is indescribably hard. Caring for a loved one with dementia can feel like you’ve stepped into another world or an alternate universe—one where the rules have completely changed, the familiar becomes unrecognizable, and communication feels like an alien language. It’s not just the day-to-day responsibilities that make caregiving hard, but the unexpected and unpredictable emotional and psychological toll that accompanies it.
One of the main reasons it’s so difficult is that dementia alters the essence of who your loved one was, yet on the outside they look the same. You may have known them as someone who was independent, strong, maybe even the rock of your family. And now, they’re losing parts of themselves that were once so defining, specifically their memory, the ability to communicate, their awareness. Watching this change can feel like you’re losing them little by little every day and you have no way to stop it. It’s grief in slow motion. You’re mourning the person they once were, even though they’re still physically present. This is current grief mixed with anticipatory grief.
There’s also the constant unpredictability. Each day can be vastly different from the last. Some days, they might recognize you, and you’ll catch a glimpse of the person they used to be. Other days, they may seem lost, confused, or even agitated. This emotional rollercoaster can be draining because there’s no consistency. You can’t plan ahead in the way you used to because dementia doesn’t follow a predictable path. It can make you feel like you’re always on edge, always bracing for the next challenge.
Getting other people onboard to help you can also be a major challenge. Sometimes, just getting others to accept that something different is going on is a challenge. This is especially true if other family members or friends are not usually around our loved ones on a daily or hourly basis. In the beginning, many times our loved ones seem to be perfectly fine. This can be very frustrating. It’s like only you know something is going, it seems like no one else can see it.
Communication becomes one of the toughest hurdles. Dementia affects not just memory, but the ability to find words and understand language. So, you’re left trying to connect with someone who, at times, can’t express what they’re feeling, what they need, or why they’re upset. It can feel like you’re speaking different languages, and the frustration of not being able to truly understand or help can be overwhelming. You want to reach them, comfort them, but often, there’s a barrier that feels impossible to break through.
On top of this, there’s a deep sense of responsibility. You’re not just caring for their physical needs, but their emotional and psychological well-being too. That’s a heavy load to carry. You’re trying to be patient, kind, and understanding in moments where it’s incredibly difficult to do so. Whether it’s repeating the same conversation, managing outbursts, or calming their anxiety—this is exhausting work. And often, caregivers like us feel isolated, because it can be hard for others to truly grasp what it’s like unless they’ve been in our shoes.
In many ways, dementia forces both of you into a new reality, one where the rules of the past no longer apply. It’s like you’re navigating uncharted territory without a map. The rituals, routines, and rhythms of life that used to be second nature are now unfamiliar. You might find yourself grieving the loss of shared moments or a future that will never happen the way you imagined.
And then, there’s the emotional toll. It’s natural to feel conflicted—love, sadness, frustration, guilt, and sometimes even resentment. You want to be there for your loved one, but the demands of caregiving can take a toll on your own well-being. It’s easy to lose sight of your own needs when you’re so focused on theirs. Many caregivers struggle with burnout because they don’t feel they have permission to take a break or ask for help.
But remember, this is not something anyone is ever truly prepared for. You’re learning as you go. And while it may feel like you’re alone in this new, foreign world, there are others who understand the challenges of caregiving. It’s important to acknowledge how difficult this journey is, not just for your loved one, but for you too.
You’re doing the best you can in a situation that is, by its nature, incredibly hard. It’s okay to feel lost sometimes. It’s okay to grieve. What you’re doing is an act of love, but that doesn’t mean it’s easy. You’re navigating a world without a guidebook, and that’s incredibly tough—but you’re not alone in this. Reach out to the resources around you and you will find that you can find some help.
Well that’s it for today’s episode of Caregiving secrets. This is Reginald Reglus and I trust you will join me and tell a friend about our podcast, Caregiving secrets. Spread the word!
Until next time, take care of your loved ones, but don’t forget to take care of yourself. Talk to you soon.