Why Dementia Caregivers Stop Feeling Like Themselves

0:00When was the last time you laughed? not a polite laugh, not a faint smile, but actually all out laughed from somewhere deep without having to think about it. When is the last time you felt like you? Not the version of you that's managing medications, appointments, middle of the night moments, but the you that existed before all of this started. The one who has a personality, who lit up about things, who your friends would describe in a specific way, whether that's funny, warm, outgoing, the one who always had something to say. Do you remember that person? Because I hear from careblazers all the time who are struggling to remember that version of themselves.

0:46Not always in those exact words, but they say things to me like, I'm just a shell of who I was, or I don't even recognize who I am anymore. Or I used to feel like someone. Now I just feel flat. And if that is you, I want you to know something right away. You are not broken. You have not become someone else. Careblazer, real quick. If you learn better by watching things, then you can hop on over to my YouTube channel where I post these podcasts in video format, sometimes have different visuals to help people learn even better. You can just type in Careblazers into YouTube and I will pop up. All right, let's get back to today's podcast.

1:27You have spent years pouring everything into another person. Your thinking, your energy, your emotion, your presence, all of it pointed outward to your loved one with dementia, all of it for them. And then at some point you look at yourself and you don't recognize yourself anymore. It's not a character flaw. It's not something that will last forever. It's what sustained caregiving does. And today I want to explain why so that you can understand what's actually happening to you. And I think it can help you also start to change how you see yourself. Researchers actually have a name for what this is called, what you might be experiencing, and it's called engulfment.

2:09It's what happens when caregiving slowly consumes your time, your energy, your social world, so much so that you stop having any roles outside of it. You're no longer just the sister, the friend, the teacher, the person who does something just for themselves. All of that gets crowded out. And then all of a sudden, when caregiver becomes the only role that you have left, that is all you know yourself to be. It happens gradually, so you don't even realize it's happening. Your loved one's needs slowly progress, get more and more. Friends and family who said they would be there have started to wilt away as the years have gone on.

2:49And you look up and you realize you have no idea who you are, what you are outside of this caregiving world. But it's more than just your role. There's absolutely the role piece, but there's also what's happening inside your brain. Think about what you do every single day as a caregiver, as a careblazer. You hold yourself together when your loved one's having a hard moment. You keep your voice calm even when you don't feel calm. You work hard to manage your reaction when you're hearing the same question for the hundredth time. You can't fall apart in the doctor's office, so you don't. All of that holding it together comes with a neurological cost.

3:25Research shows that constantly suppressing your emotions actually changes the prefrontal cortex. That's the part of the brain that's responsible for emotional regulation. Think of it like a muscle. Every time you're holding yourself together, pushing down your emotions, you're working that muscle. And after years and years of working that muscle day in and day out without rest, it is depleted. The resource is running low. And then there's a third piece, chronic stress. It's going to impact your ability to feel joy at all. When you're caring for somebody with dementia and you are living under chronic, ongoing stress, the alarm system in your brain is activating.

4:11Your brain is always scanning. It's always bracing for what might come. And when that happens, the neurotransmitters that are responsible for joy, for motivation, for pleasure, the neurotransmitters of dopamine, serotonin, they become dysregulated. That's the science behind feeling so flat. This is why things that may have brought you joy in the past now just feel neutral. It's why your laugh doesn't feel the way it used to. Your brain's not broken. it has just been in survival mode for a very long time. And in survival mode, our priority isn't joy and pleasure. Our priority is just making it through.

4:49So I really want you to hear that. Your flatness is not who you are. It's what years of chronic stress and caregiving has done to your nervous system. So what do we do with all this? There's a lot, but I want to share four things that you can do here today in this video. The first thing is to name what is happening out loud or on paper. Sounds simple, might even sound silly, but there's actually research behind this. Research shows that when you put language to what you are feeling, when you name it, rather than push it away, it reduces the stress response in your brain. The act of saying the words out loud or writing the words down actually helps regulate your nervous system.

5:30So when the flatness shows up, the blankness shows up, or the moment you look in the mirror and you're like, I don't even recognize myself anymore. Instead of asking what is wrong with me, try saying out loud or writing down, I'm experiencing a loss of self or my brain has been in survival mode a really long time or what I am feeling makes complete sense given what I am going through and what I have been through. This is what it looks like and sounds like to name it. We're not fixing it. We're not pushing through it. We're just calling it what it is. And that's an important shift because we're moving from judgment of ourselves to understanding of ourselves.

6:12The second thing is to find a role that has nothing to do with caregiving. One role. We don't have to do a lot. We don't have to add a whole new personality to ourselves. We don't need to uplift and unroot our whole life. But what I am asking is that you find one thing that can be outside of you being a caregiver. Maybe it's calling a friend, not to talk about caregiving, not at all. You can even tell your friend, hey, I want to talk about anything, just not dementia, just not caregiving. Maybe you just become the person who calls. You're the friend who picks up the phone and calls. Maybe it's going somewhere alone, just for some alone time.

6:53Maybe it's sitting with a book for 20 minutes and you're becoming a reader. Research on engulfment, that term we talked about earlier where we just lose ourselves because we have committed to somebody else for so long. Research shows that choosing this one thing, this one task outside of what has been taking up your primary role, it helps bring us back to a sense of self. It protects against that feeling that we have lost ourselves. The size of the role does not matter. What you do does not matter. the fact that it is yours, it is yours only, and it has nothing to do with dementia or your loved one.

7:28That's what matters. Number three, so important, give yourself permission to grieve. This does not mean you sit in grief forever. This just means, again, instead of trying to push away or outrun or ignore the feelings that we are actually feeling, we acknowledge to ourselves, there are things that I miss. I miss who I was before this all happened. I miss my person with dementia. I miss the life that I knew. That's it. We're not fixing anything. We're not making a plan. We're not coming up with the 12 steps to never feel grief or heartbroken again. We're literally just giving ourselves permission to have that grief.

8:05You're letting the loss be true because it is. And similar to the first tip, research shows us that by acknowledging a loss, naming it as an actual loss, that is a necessary step before we can truly start to shift. It's impossible to move through grief that you are not allowed to feel. And many, many caregivers, because I have talked to them, have not given themselves permission to grieve who they were before this started. There's so much talk about grieving our loved ones with dementia and their losses, but we get to grieve what we have lost as well. And the fourth tip is micro moments, not big overhauls.

8:46When caregivers hear the word self-care, often it makes them feel more overwhelmed or frustrated because they are thinking significant time to themselves, vacations, bubble baths, things that just feel so impossible or so frivolous or so selfish, they don't want to hear about it anymore. That is not what I'm talking about here. I'm talking about, again, one small thing. What is one thing you used to do that made you feel like yourself? Even a small version of that. Perhaps it's a song you used to love, a dance you used to do, 10 minutes of being outside alone, journaling. Maybe it's a show you used to watch or a type of show you would watch or a type of book you would read.

9:29Small, regular acts that are connected to who you were before caregiving, even if it is just 10 moments can have a measurable effect on your mood and how you perceive yourself. The goal isn't to feel like your old self immediately. The goal is just to send yourself a signal, send yourself a small signal to your brain. I'm still here. And over time, those signals will add up and grow stronger. Now, Careblazer, if you are searching for a community of people who are actively working through these griefs, through this loss of self, through all of the hard emotions of caregiving, people who understand what it feels like to lose your role in life, who you were before, I would love to invite you personally into the Care Collective.

10:17It is where Careblazers come together every single week for support, guidance, connection from people who actually get it. You can access a member area 24-7, so it doesn't matter where you live or what your schedule looks like. We have developed this and made it around the busy real life of Care Blazers. The link to that is in the description of this video. You can also go to our website, www.careblazers.com. And there's a little button for families where you can learn more about how we specifically help family members. Care Blazers deal with all the emotional hardship that comes with dementia caregiving.

10:56You're absolutely doing something incredibly difficult, but you are also absolutely doing something incredibly meaningful. I'm sending you so much love. I'll be back next week as always. Bye care, Blazer.