Caregiver Secrets

Caregiver Secrets

By Reginald D. ReglusHealth & FitnessEducation
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Caregiver Secrets episodes

  • Ep 9 The Guilt with No Pleasure_ Removing The Weight of Caregiver Guilt

    Welcome to today’s episode of Caregiver Secrets, where we share practical advice, research, emotional support, and resources for caregivers of loved ones. This is part two of our 5-part series called, The Invisible Journey: The Emotional Landscape of Caregiving. As I explained yesterday, I call it the invisible journey, not because you don't experience it, but because many of us don't realize we are on this journey. We simply chose to take care of our loved one and this compassionate choice set us on an unforeseen, arduous journey fraught with untold challenges. The other reason I call it the invisible journey is because almost no one who is outside this journey acknowledges our journey, nor do they realize how difficult it is for us.

    Hi, my name is Reginald Reglus, and I am glad you are here today. I am a fellow caregiver. And as I say on almost every episode, I have been gladly 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. However, 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 challenge that you are facing. 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’ll be exploring one of the most pervasive and insidious emotions caregivers experience: guilt. It’s a five-letter word that weighs more than a bag of gabbro rocks slung over your shoulder. I said gabbro rocks because they are among the heaviest rocks on earth, due to their density. Guilt is that voice whispering, You should have done more. You should be better. You’re not enough. It’s relentless, unforgiving and sits its dense body on you. It has the bad habit of showing up when you skip a visit, when you take a moment for yourself, or even when you do everything you possibly can but still feel it isn’t enough.
    For me, guilt would creep up at the oddest moments. It could be when I am working to help mom or those moments when I had a rare, quiet minute to myself. I’d sit down to work on my business, trying to bathe in the joy of making progress in my own life, only to feel an immediate pang of remorse. I’d ask myself, Shouldn’t I be doing something more for my mom or couldn’t I have completed that task better. This pattern became so ingrained that even my moments of rest felt haunted by the ghost of guilt.
    So, what can we do with this guilt? First, we need to recognize that it’s not a signal that we’re failing; it’s a sign that we care. The very presence of guilt speaks to the deep love and commitment we have for the ones we care for. But guilt, if left unchecked, can become like a blinding fog that clouds your ability to see your own worth and the profound goodness of the sacrifice you are making.
    The next step is learning to challenge the negative self-talk that fuels guilt. Replace the I should have done more with I did the best I could at that moment. I use this phrase all the time, even in the midst of taking care of mom. I say to myself, I am doing my very best right now. It helps me tremendously. Understand that perfection is an illusion, especially in caregiving. Your best is enough, even if it doesn’t look like someone else’s version of best.
    As I mentioned in yesterday’s episode, humor helps a lot. I heard this story about a caregiver who was caring for their mom with early stage dementia. One afternoon when, in a flurry of multi-tasking, they forgot to restock the fridge with their Mom’s favorite snack. Well mom pointed it out with an expression that could rival an Oscar-winning performance, and the caregiver felt that sting of guilt again. But instead of letting it fester, she joked, Looks like even superheroes forget the crackers sometimes. They both laughed, and for a moment, the guilt lost its grip.
    Don’t underestimate the power of sharing your feelings, either. Talking to fellow caregivers who understand the nuances of this invisible journey can be a lifeline. You’d be surprised at how many people carry the same feelings of inadequacy. Sharing can lighten that burden and remind you that you’re not alone in this experience.
    Lastly, practice self-compassion. Yes, it sounds cliché, but it’s essential. Self-compassion is that internal voice that whispers back, It’s okay. You’re doing your best. Treat yourself the way you would treat a friend in the same situation. You wouldn’t berate them for forgetting a small detail or taking a break, would you? So why do that to yourself.
    Remember, guilt may never vanish entirely, and that’s okay. It’s part of caring so deeply. But what matters is recognizing it, understanding that it doesn’t define you, and finding ways to release its hold. Today, remind yourself: You are enough. And the fact that you’re even listening to this episode is proof of your commitment and love.
    Thank you for being with me today. Next time, we’ll delve into the loneliness of caregiving and how we can work to break down the isolation that often comes with this path. Until then, be gentle with yourself. You’re doing a remarkable job. Oh, if this podcast is helping you, please continue to listen and please share it with others. It really helps us to continue sharing this information.

     

    As a listener to this podcast you are invited to get a free copy of my new book called "Get Risen". 

    6 min
  • Ep 8 The Hidden Heartbreak_ Uncovering the Secret Grief Every Caregiver Faces

    Welcome to today’s episode of Caregiver Secrets, where we share practical advice, research, emotional support, and resources for caregivers of loved ones. This week we begin a 5 part series called, The Invisible Journey: The Emotional Landscape of Caregiving. I call it the invisible journey not because you don't experience it, but because many of us don't realize we are on this journey. We simply chose to take care of our loved one and now we are on this challenging journey. The other reason I call it the invisible journey is because almost no one who is outside this journey acknowledges our journey, nor realize how difficult it is. 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, in part one of this series, we’re diving into something that’s as heavy as an elephant sitting on your chest yet invisible to everyone else: anticipatory grief. This is an emotion that creeps up on you quietly, like a shadow at the end of a long day. I remember when I first felt its weight. It was early in my caregiving journey, long before I even knew it had a name. Picture this: I was walking around with an emotion that I could only describe to others as heaviness as I was taking care of mom. It was a new emotion and was very different and I could not find the right word to describe it. I thought maybe it was just exhaustion or maybe I was just dealing with worry. But no. It was deeper than that—more consuming. It wasn’t until a particularly raw conversation with a care consultant from the Alzheimer’s Association that I got my answer. There I was, trying to explain this strange cocktail of sadness and fear, struggling for words as I gestured wildly like someone swatting at invisible flies. Thank God she couldn’t see me. She paused, and I imagine she tilted her head, and said, “You’re describing anticipatory grief.” It was like she handed me the missing puzzle piece that I didn’t even know had been lost. Relief washed over me, not because the feeling disappeared, but because it finally had a name. Anticipatory grief feels like standing at the edge of a cliff, staring at the dark unknown below. You brace yourself for a fall that hasn’t happened yet, but you’re tense andready. Every time you hear your loved one say a name wrong or lose track of the day, it tightens its grip. It’s a relentless, emotional storm that swirls around you while you’re trying to cook dinner or drive to work, making everything feel surreal, like you’re living in slow motion while the world rushes on. And here’s the thing my friends: acknowledging it doesn’t make you any less of a superhero. In fact, it makes you more resilient. You don’t have to put on a brave face 24/7. Anticipatory grief is a testament to your love, not your weakness. Just like how you sometimes laugh when you shouldn’t—like when my mom once was telling a woman off like nobody’s business and when I looked she was talking to herself in the mirror. That was grief's strange way of letting in a bit of light. So, what can you do? First, name it. Trust me, that alone is half the battle. Once it has a name, it becomes a guest at your emotional table rather than an unwelcome intruder lurking in the shadows. Then, find your people—whether that’s a support group, a friend who just gets it, or even an online community that shares their own tales of caregiving with humor and warmth. Humor, by the way, is more than a coping mechanism; it’s a life raft. And remember, your goal is not to banish these feelings but to navigate them. Grounding yourself in the present helps, too. When that grief threatens to spiral, pause. Take a deep breath. Feel your feet planted on the ground and remind yourself that today, in this moment, you are here, and so is your loved one. Journaling is another lifeline. It’s not just for poets or teenagers with heartbreaks; it’s for you, the caregiver who needs a safe space to spill your thoughts without judgment. And let me tell you, it’s okay—no, it’s vital—to find moments of joy amidst all this. It doesn’t make you a hypocrite to laugh at something silly, even while facing this grief. In fact, those moments are what keep you from being consumed by the heaviness. I still smile when I remember my mom in church one time yelled out in church “That’s not true” after the pastor made a statement. That memory is a tiny, defiant flame in the face of anticipatory grief’s storm. So, hold space for yourself. Be gentle with your heart as you prepare for what’s ahead, balancing it with moments that root you in the now. This journey is hard, but you are strong. And while anticipatory grief may be a part of your story, so too can resilience, humor, and hope. Thank you for being here with me today. Next time, we’ll unravel another layer of the caregiving experience—one many avoid but we’re diving straight into: guilt, and how to show yourself the kindness you so freely give to others. Take care of yourself, and don’t forget to laugh, even when life makes no sense. Until next time, you’ve got this. Oh, if this podcast is helping you, please continue to listen and please share it with others.

    Get a free copy of my book "Get Risen" written specifically for you and to you my dear caregiver. Click Here for your free copy.

    6 min
  • Ep 7 Dementia Unmasked: Caregiver Secrets for Navigating Aggression and Calm

    Welcome to today’s episode of Caregiver Secrets, where we share practical advice, research, emotional support and resources for caregivers of loved ones. I'm your host, 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.

    Today, we’re diving into a topic that’s familiar, challenging, and deeply personal for many of us: how to handle anger and aggression from someone you love who is living with dementia.
    As caregivers, we often face moments where those we care for suddenly seem different—angrier, more frustrated, or even aggressive. It can be heartbreaking and unsettling, but understanding why this happens is essential. So, what causes these episodes? There are numerous triggers that can spark aggression or anger in a person with dementia. Physical discomfort is a major one—pain they can’t express, hunger, or exhaustion can easily tip them into a state of agitation. A noisy or overstimulating environment can also be overwhelming. Imagine feeling confused, not knowing where you are, and then hearing multiple voices at once—it’s no wonder frustration can bubble over.
    Other causes might include medical side effects, unmet needs like thirst or needing to use the bathroom, or emotional triggers such as fear or confusion. And sometimes, it’s the sheer unfamiliarity of surroundings or faces, even those they know and love, that sparks anger. I remember countless times when my mom would suddenly look at me without recognition. The disorientation she felt must have been profound, and it shifted her mood from calm to defensive in moments.
    So, what do we do as caregivers when aggression arises? First, it’s crucial to recognize that it’s not truly the person you love who’s behaving this way—it’s the disease. It’s dementia’s way of showing itself, not a reflection of their heart. Putting on your investigator hat, not your judgment hat, can be transformative. Approach these moments like a detective: What could be causing this reaction? Is it pain? Is the environment too loud? Is something scaring them? This perspective allows you to focus on finding a solution rather than reacting emotionally.
    I learned firsthand that sometimes, the best thing you can do is take a step back. When my mom would shout at me or tell me to leave, I took a breath and listened to what she needed—even if that meant giving her space. I would walk out, give it five to seven minutes, and come back in with a fresh “Hi.” To my amazement, it was like pressing a reset button. Her face would soften, and she’d greet me as if that burst of aggression hadn’t happened. It wasn’t just a trick; it was an essential tool that helped maintain peace in our home and preserve my own emotional stability.
    Here are four smart ways to respond:
    Number 1, Focus on feelings, not the facts. Instead of focusing on specific details, think about your loved one’s emotions. Earnestly search for the feelings behind the words or actions. Think about what happened immediately before this behavior started.
    Number 2, Even if you find yourself feeling upset, do not let it come through in your tone or your face. Remain calm, at least on the outside. If you lose it, more times than not, you will cause the situation to escalate.Limit distractions. Examine the person's surroundings, and adapt them to avoid similar situations.
    Number 3, Try to distract them from the immediate behavior. Change the subject to something you know they enjoy or that you know will shift their attention.
    Number 4, Be creative. Each person is different and if you are creative you will find a number of different things that work specifically for your loved one.

    And caregivers, remember this: while it’s important to stay calm and curious, it’s equally vital to protect yourself. Aggression, even if it’s from the disease, shouldn’t mean you accept being hurt. You deserve safety and respect. If you ever find yourself in a physically dangerous situation, step away, call for help, or take any measures needed to keep yourself safe.

    Lastly, don’t forget to breathe. One deep breath can make a difference between reacting and responding. You are navigating the complex waters of caregiving, and each challenge you face is met with strength that you might not even realize you have. And on those days when it feels overwhelming, remember that you’re not alone. I’ve been in your shoes, I see you, and together, we’ll keep sharing these Caregiver Secrets to help each other thrive.
    Thank you for tuning in today. Take care of yourselves, take that breath, and keep being the compassionate detective your loved one needs. This is Reginald Reglus and I trust you will join me and tell a friend about our podcast, Caregiving secrets. Spread the word! See you next time.

    7 min
  • 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.

    7 min
  • 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.

    7 min
  • Ep 4 Healthcare Hustle: Secrets to Advocating for Your Loved One (and Yourself)

    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 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.
    Being a caregiver is hard enough without having to figure out the maze of healthcare, insurance, and social services that seem designed to confuse and frustrate. It’s so easy to feel powerless when you're trying to secure the best care for your loved one while also managing your own well-being. It can feel like the system is working against you and your loved one. But here’s the truth: you have more power than you think. And today, we’re going to discuss practical strategies to help you advocate for both your loved one and yourself, because you matter too.
    Let’s start by talking about the importance of preparation. When you're advocating for someone else, knowledge is your best weapon. That means knowing the medical history of the person you're caring for, inside and out. It means keeping records of every diagnosis, treatment, medication, and procedure. I carry a notebook with me to doctors appointments of my mom’s eating habits, blood pressure readings, poop schedule, medicine regimen and more. I suggest you keep such a journal for your loved-one and for yourself. This information will help you make informed decisions and communicate effectively with doctors, nurses, and other healthcare professionals. I have also found that when medical professionals see you referring to notes, they take you more seriously, especially when you also write down what they say to you.
    But it’s not just about knowing the details—it’s about asking the right questions. Don’t be afraid to ask for clarification or more information. For example, if a doctor suggests a new treatment or medication, ask about the benefits, potential side effects, and whether there are alternative options. Also, ask why they have come to that conclusion. This is important because many times they are making decisions based on what they think they heard you say. Sometimes, however, they have misheard or misunderstood what you said and they end up leading you down the wrong path. Also, if you’re unsure about a diagnosis, ask for a second opinion and even a third or fourth opinion. I often check with several different and unrelated sources to see if I get a similar answer. Remember, you’re not just a passive participant in your loved one’s care—you’re their voice and advocate.
    Now, let's talk about navigating healthcare appointments. Many caregivers find these appointments stressful because of time constraints and the pressure to absorb a lot of information quickly. One great strategy that we already mentioned is to bring a notebook, or use your phone to take notes during appointments. This way, you can review the information later when you’re not feeling rushed. Better yet, if possible, bring a friend or family member with you. Having a second set of ears can be invaluable. They might catch something you missed or help ask follow-up questions.
    Ok this is also very important. Please do not forget about self-advocacy. Yes, you’re advocating for your loved one, but as a caregiver, you also need to speak up for yourself. One of the most common issues caregivers face is burnout, and it’s often because they feel like they have to do everything themselves. But you don’t. Well, let’s face it, sometimes you do for a while, but you can’t do that for long. If you feel overwhelmed, don’t hesitate to ask the healthcare team about respite care options or social services that can help lighten the load. You are not failing by asking for help—you’re being smart and ensuring you can provide the best care possible.
    This brings us to the often complicated world of social services. If you’re not sure where to start, contact your local Area Agency on Aging or similar organizations in your area. They can connect you with resources like meal programs, transportation assistance, and even financial aid, depending on your situation. Many caregivers are surprised to learn about the variety of services available. These agencies can also help with paperwork and legal matters related to caregiving, so you don’t have to navigate these challenges alone. I have personally had a hit and miss track record with social services. As of 2024, in some states, a lot of services require you to be eligible for Medicaid and my loved one is over the income threshold, so no go for me there. However, the key is to apply for everything and see what you get approved for. You need all the help you can get.
    Let’s now briefly touch on insurance and medical bills. When dealing with insurance and medical bills, it’s crucial to be proactive. Insurance can feel like an endless pit of paperwork, but staying organized is key. Keep copies of everything—every bill, explanation of benefits, and payment receipt. If you receive a denial for a treatment or service that your loved one needs, don’t accept it at face value. Call the insurance company, ask why the claim was denied, and request an appeal. Persistence is often required, but in many cases, denials can be overturned if you have the right information and are willing to fight for it.
    I want to emphasize the importance of knowing your loved one’s rights, especially when dealing with healthcare facilities. If your loved one is in a hospital or long-term care facility, they have the right to be involved in their care decisions. You, as their advocate, have the right to ask for care meetings, to participate in discussions about treatments, and to challenge decisions that don’t seem to be in their best interest. Don’t be afraid to push for what’s best, even if it means being persistent.
    Lastly, let’s talk about building relationships with healthcare professionals. Healthcare providers are more likely to listen and respond to someone they know and respect. By being courteous, prepared, and respectful during your interactions, you build goodwill that can make future conversations easier. However, if you ever feel like your concerns are being dismissed, don’t hesitate to escalate the situation. I have had to do that many times and on at least 2 occasions it saved my mom’s life. I had to fight for her to live. Also, you can ask to speak with a patient advocate or ombudsman, especially if you’re in a hospital or facility setting. These individuals are there to ensure patients receive fair and appropriate care, and they can be your allies.
    To wrap up, being an advocate isn’t easy. It takes energy, persistence, and sometimes a lot of patience. But remember, you are your loved one’s most powerful advocate, and you have every right to question, push for better care, and seek support when needed. Advocating for yourself is just as crucial—by doing so, you ensure that you can continue to provide the best care possible without burning out.
    Remember, you don’t have to do this alone—there are resources, support networks, and strategies to help you along the way. Reach out and get 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.

     
     
     

     

    9 min
  • Ep 3 Loving Through the Storm: When Your Parent’s Memory Fades

    Well, 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. 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. 

    Now please listen closely my caregiving friends, today’s podcast highlights a difficult and painful situation many caregivers face: caring for a parent who once gave so much support and love, yet now, due to dementia, behaves in ways that feel hurtful, foreign and sometimes downright scary. This leads to intense feelings of grief, exhaustion, guilt, and even resentment as the disease alters the personality of a beloved parent, creating distressing memories in a home once filled with warmth. I know that balancing this caregiving role while honoring one's own needs and processing the loss of the "parent you knew" is immensely challenging.

    It’s a journey of love, patience, and resilience. And today I want to share seven strategies to help you not just cope, but also find moments of peace, compassion and empowerment. Stick with me until the end because each strategy is important, and I am going to throw in a bonus strategy.

    Here is strategy 1: Separate the Person from the Disease

    The first step is to remember that the anger, frustration, and even hurtful words come from the disease, not from your true parent. Dementia changes a person’s brain, often causing behaviors that are out of character. Even though they may look the same, their brains are functioning differently, causing them to act differently. I often had to say to myself, that is not my mom talking or behaving this way, it is dementia. When you can see these difficult interactions as the result  of the illness, it’s easier to feel less personally hurt and approach caregiving with empathy and compassion.
    Here is what I would like you to do for yourself: Think of a moment when your parent’s words or actions didn’t seem like them. Remind yourself that this is the disease talking, not the parent who loved and nurtured you. And frankly this applies to any loved one that is suffering from dementia.

    Ok, strategy two,  Honor the Past Relationship

    Reflect on the good memories and the love and support your parent showed you before dementia. Honoring those past moments can serve as a foundation for compassion, even when they’re difficult to reach now. Holding onto these memories reminds you of who your loved one was, providing a comforting anchor as you navigate the present.
    Here Is a Suggestion to help you navigate this strategy. Take a moment to remember or even journal about a cherished memory with your parent. This can help create an emotional buffer, reminding you of the love that still exists even if it’s harder to see.

    Strategy 3, Take Breaks and Accept Help

    Caregiving can feel all-consuming, so give yourself permission to take breaks often. If family or friends offer to help, take them up on it, even if it’s just for a short time. Regular breaks help restore your energy and well-being, which makes you a stronger, more compassionate caregiver. This one was hard for me at the beginning because I have always been an independent get-it-done-myself person. I think it’s the generation X in me. I have since learned to take all the help I can get. 
    Here's a Tip: Make a list of tasks others could help with, like running errands or providing company for your parent. When people ask, you’ll have ready suggestions to make saying “yes” easier. And don’t be surprised that they may be taken aback because you said yes. Follow through and let them do what they said. They will be helping you, your loved one and even themselves. Think of it as giving them the opportunity to be unselfish.
    Before I go to strategy 4, I want to throw a bonus one in here. You have to learn to laugh and use humor. Let’s say you love one keeps telling you the same story, all day. By the fourth or fifth time, try to jazz it up a bit, throwing in some extra details. Like, like, 'And then the llama showed up!' And she will probably be like, 'That’s exactly what happened!  Things like this help break the tension.
    Strategy 4 is this, Set Boundaries to Protect Yourself
    It’s essential to protect your mental health by setting personal boundaries. Decide how much time you can give and what kinds of behaviors are manageable for you. Setting limits isn’t failing to care; it’s showing care for yourself so you can continue this journey without burning out.
    Here is an Example: A boundary could be setting specific visiting or caregiving hours, or deciding not to respond when conversations become abusive. Boundaries will help you sustain the care you give.

    Ok, here are the last three strategies I will share., Strategy 5 is to Create a Supportive Environment

    Find people who understand what you’re going through. Support groups, whether online or in person, can offer practical advice, shared experiences, and emotional relief. Hearing from others who face similar challenges helps you feel less isolated and can offer new ideas for handling difficult situations.
    Quick Tip for you: Check out local or virtual caregiver support groups. These can be a great way to find understanding, connection, and advice from people who are in the same situation.

    Here is strategy 6. Prioritize Self-Care and Mental Health

    To avoid burnout, prioritize your own physical and emotional health. Eating well, staying active, and finding time to rest can make a big difference in your resilience. Therapy or counseling can also be invaluable, helping you process feelings of grief, guilt, or resentment without judgment.
    Here is a easy practical exercise: Set a daily goal for self-care, whether it’s a 10-minute walk, reading a chapter of a book, or a quiet moment with tea. These small acts add up, giving you the strength to face each day.

    This last strategy is very important, Give Yourself Permission to Make Difficult Choices

    Sometimes, the best choice for both you and your parent may be a specialized care facility. This decision is valid and doesn’t mean you’re abandoning them; rather, you’re choosing what’s safest and most supportive for everyone involved. Remember, your health matters too.
    This strategy may require a Mindset Shift. I would like you to reframe this choice as ensuring your parent gets the best care possible while honoring your own needs.

    Let me say this as we close, know that you’re not alone on this journey. Dementia changes relationships in heartbreaking ways, but by honoring both your parent and yourself, you can navigate this path with compassion and resilience. Remember to lean on these strategies, reach out for support, and allow yourself grace in this challenging but rewarding role.

    Well that’s it for today. This is Reginald Reglus and I hope you will join me and tell a friend about our podcast, Caregiving secrets. Talk to you soon.

    8 min
  • Ep 2 - From Plate to State: Mastering Diet for Mental Wellness in Caregiving

    Welcome to today’s episode of Caregiver Secrets, where we share practical advice, research, emotional support, and resources for caregivers of loved-ones. Today we are continuing our new series called Fighting for Their Care: Advocating for Your Dementia Loved-One in the Hospital. This is the second installment of our series, and I believe it is more important than ever to advocate for our loved ones who are not able to adequately advocate for themselves.

    Hi, my name is Reggie, and I am glad you are here today. I am a fellow caregiver. As I often say, I have been serving my mom for about 10 years after she was diagnosed with dementia. I am her sole caregiver and her only child. 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’s episode is all about preparing for a hospital visit. As caregivers, preparation can be the difference between feeling powerless and feeling in control. It’s not about eliminating all the challenges—because let’s face it, hospital visits are inherently stressful—but about equipping yourself with the tools to navigate them with more confidence and calm.
    Let me be honest with you: I’m still a work in progress when it comes to preparation. I really dislike going to the hospital. It’s draining and often chaotic, and I don’t always prepare the way I’m suggesting here. But I’ve learned that you don’t have to be perfect to make things easier on yourself and your loved one. These steps might take a little effort, but they can save you so much stress in the long run.
    One of the most important things you can do is have a go-bag ready at all times. Think of it like a diaper bag for caregivers. You never know when an unexpected trip to the hospital will come up, so being prepared can make a world of difference. In your go-bag, make sure to include essentials like a list of medications, a copy of your loved one’s medical history, their identification, insurance card, and any legal documents such as a power of attorney or advanced directives. These are non-negotiables. I can’t tell you how many times having these documents ready has saved me when a nurse or doctor needed quick answers. Instead of scrambling or panicking, I could calmly pull out what they needed.
    Another thing to include in the go-bag is comfort items for your loved one. A familiar blanket, a soft pillow, or even a favorite sweater can provide a sense of security in an unfamiliar environment. I also pack snacks and water—not just for my mom, but for myself too. Hospital visits can mean long waits, and hunger doesn’t help anyone’s stress levels. I’ve learned that even something as small as a bag of crackers or a piece of candy can make a huge difference in helping my mom feel more grounded when everything else feels foreign and overwhelming.
    Speaking of being prepared, I want to talk about creating a medical binder for your loved one. It doesn’t have to be anything fancy—a simple three-ring binder will do. In it, you can organize sections for current medications, allergies, a history of past procedures or surgeries, and emergency contacts. I even include notes about my mom’s daily routines and typical behaviors. Hospitals are busy places with rotating staff, and care often gets handed off from one person to another. Having everything written down in one place ensures that nothing gets lost in translation. It also shows the medical staff that you’re involved and on top of things, which can make a big difference in how they approach your loved one’s care.
    Now, let’s talk about preparing emotionally. Hospital visits can be taxing, not just for your loved one but for you as well. The role of caregiver doesn’t stop just because you’ve walked into the hospital. In fact, it often intensifies. You’re not only their advocate and voice but also their source of comfort and stability. Before I step into a hospital, I take a moment to center myself. I remind myself that I’m here for a reason and that I have the strength to handle whatever comes my way. I also make it a point to reach out to friends to vent or get advice. Talking to someone I trust gives me perspective and helps me release some of the tension I’m carrying. It’s been incredibly helpful for me, and I highly recommend it.
    Another tip is to practice explaining your loved one’s condition in clear, simple terms. Doctors and nurses have limited time, and the more concise you can be about your loved one’s needs, the better. For example, I usually start with, “My mom has dementia, and here’s what you need to know about her.” Then I outline her baseline behavior, any current symptoms, and any changes I’ve noticed recently. This gives the medical staff a clear picture of what’s going on and helps them focus on what’s most important.
    I also want to emphasize how important it is to know your rights as a caregiver. You have the right to ask questions, request second opinions, and advocate for the best possible care for your loved one. Being prepared means knowing these rights and being ready to stand firm if necessary. Don’t be afraid to speak up if something doesn’t feel right. Trust your instincts—they are often your best guide.
    Finally, let’s talk about mindset. Hospital visits can feel like stepping into the unknown, and that can be intimidating. But I want you to remember this: you are your loved one’s biggest ally. You know them better than anyone else. You know their quirks, their habits, their strengths, and their weaknesses. That knowledge is your greatest asset. When you walk into a hospital with the mindset that you are part of the care team, it changes everything. You’re not just a visitor—you’re an integral part of their care. Your presence matters, and your advocacy makes a difference.
    Thank you for listening to today’s episode of Caregiver Secrets. I hope you found it helpful and empowering. Please continue to support this podcast by listening, sharing it with others, and letting me know your thoughts in the comments. I truly want to hear from you. Remember, together, we can make a difference. See you next time!

    8 min
  • Ep 1 7 Secrets to Stop Sundowning: How Caregivers Can Calm Dementia Chaos and Regain Peace

    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. A little about me, I am a caregiver for my beautiful mom and I have been for about 10 years, when she was diagnosed with dementia. I have learned so much about so many things from this experience and continue to learn and I want to share it with you.

    Important note is that is 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 your alone are totally responsible for doing your own research and taking the proper action.

    Today, I want to talk about a topic that many caregivers of loved ones with dementia face. It  is called sundowning. If you’re caring for someone with dementia, chances are you’ve experienced or at least heard of something called "sundowning." It’s one of the more challenging aspects of caregiving, and today we’ll dive into what sundowning is, explore the latest research, and provide you with seven strategies to help manage it.

    What is Sundowning?

    Sundowning, also known as "late-day confusion," refers to a state of increased confusion, agitation, and restlessness that often occurs in people with dementia during the late afternoon or early evening. This behavior can be stressful for caregivers, as it typically happens when they are already exhausted from the day. For someone with dementia, sundowning can present as irritability, disorientation, pacing, or even aggression. The exact cause isn’t entirely clear, but it is believed to be linked to changes in the body’s internal clock, fatigue, and sensory overload.

    Here is some Recent Research on Sundowning for you.

    A 2022 study published in Alzheimer's & Dementia journal took a closer look at the neurobiological changes that might contribute to sundowning. The research showed a connection between disruptions in circadian rhythms (our body’s natural 24-hour cycle) and increased sundowning behaviors in those with dementia. Specifically, disruptions in the production of melatonin—a hormone that regulates sleep—may play a key role.

    Other studies have shown that environmental factors, like poor lighting, excess noise, or overstimulation during the day, may also exacerbate sundowning symptoms. While there is no definitive cure for sundowning, these insights offer hope for better management through environmental adjustments and caregiving strategies.

    Now, let’s explore seven practical strategies you can implement to manage sundowning and help both yourself and your loved one through these challenging moments.

    1. Establish a Consistent Routine

    People with dementia tend to feel more secure when their days are structured. Try to create a daily routine that includes regular times for waking, meals, activities, and bedtime. This consistency can help reduce anxiety and minimize the unpredictability that often triggers sundowning.

    2. Adjust Lighting as Evening Approaches

    As daylight fades, the lack of light can confuse and disorient someone with dementia. To combat this, gradually increase indoor lighting in the late afternoon and evening. Soft, warm lighting can create a calm environment. In some cases, exposure to natural sunlight during the day can also help regulate the body’s internal clock.

    3. Limit Stimulants in the Afternoon

    Be mindful of what your loved one eats and drinks, especially later in the day. Caffeine, sugar, or heavy meals in the afternoon can contribute to restlessness in the evening. Instead, opt for light, easily digestible meals, and avoid stimulants like coffee, tea, or chocolate in the hours leading up to sundown.

    4. Provide Calming Activities

    Keeping your loved one engaged in calming, purposeful activities can help reduce anxiety. Consider activities like listening to soothing music, gentle stretching, or even folding laundry. Avoid overstimulating tasks like watching fast-paced TV shows or having loud conversations, as these can trigger more agitation.

    5. Create a Peaceful Environment

    An overstimulating environment can worsen sundowning behaviors. Try to create a peaceful atmosphere in your home during the late afternoon and evening. Reduce noise, dim screens, and remove distractions. A calm environment will help your loved one feel more at ease.

    6. Promote Daytime Activity

    Encourage your loved one to stay active during the day, whether it’s through light exercise, short walks, or social engagement. Regular daytime activity can help improve sleep at night and reduce agitation in the evening. Be cautious not to let them nap too much, as excessive daytime sleeping can disrupt their circadian rhythms.

    7. Care for Yourself as a Caregiver

    It’s easy to lose yourself in the daily care of a loved one, but your well-being is just as important. Caregiver stress and burnout are real concerns, especially when dealing with challenging behaviors like sundowning. Take time to practice self-care—whether it’s taking a break, asking for help, or seeking support from a caregiver community. Studies show that caregivers who maintain their own mental and physical health are better able to provide quality care to their loved ones.

     

    Listen to me my friend, caring for someone with dementia can be emotionally and physically draining, especially when sundowning becomes part of the routine. But by creating a calming environment, establishing a consistent schedule, and focusing on both your loved one's and your own well-being, you can make these late-day episodes more manageable. Remember, you’re not alone in this journey. Reach out to other caregivers, professionals, and communities for support when you need it.

    Thank you for tuning in to this episode of Caregiver Secrets. If you found this helpful, please subscribe, and share it with others who may benefit. 

    This is Reginald Reglus and until next time, take care of yourself and your loved one. 

    7 min

About Caregiver Secrets

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Welcome to Caregiver Secrets, the podcast created to empower and uplift family caregivers. Hosted by Reginald D. Reglus, a seasoned caregiver with over 10 years of experience, this show dives deep…