You can’t remember why you walked into the room, and the panic sets in. Is this the beginning of dementia for me? Or you catch yourself daydreaming about a time when you’re no longer a caregiver.
Careblazer, my guess is you’re experiencing at least one of the five things in this post. They’re scary, sometimes sad truths about caregiving, and many, many caregivers experience them. These caregiver experiences might be uncomfortable to talk about, but I want you to know they’re totally normal.
Here they are. How many of them are you experiencing right now?
1. The Fear of Getting Dementia Yourself
You can’t remember why you walked into a room. You can’t find where you put your keys down. You forget what you were just about to do.
And you start to panic. You start to get anxious, and you think, “Oh my gosh, this is the beginning of me developing dementia.” Some of us even think, “Am I getting worse than my loved one?”
But here’s the thing to remember. Caregiving is extremely stressful and exhausting, and both stress and exhaustion affect your ability to think clearly and remember information.
It doesn’t mean you’re developing dementia. It means your brain is telling you, “Hey, this is really hard. I’m tired. I need a break.”
Now, if you’re really concerned because you’re noticing a lot of these lapses and difficulties in your thinking, that’s absolutely the time to bring it up with your doctor. And even if you have a family history of dementia, even if multiple people in your family have developed it, that does not mean you are guaranteed to develop dementia.
So let’s not assume. Let’s assess.
2. Your Health Is Declining Faster Than Your Loved One’s
This is one almost every caregiver I’ve ever worked with has worried about. Maybe you’re putting on weight. Maybe your blood pressure is up. Or maybe you’re just feeling a lot older.
This is so incredibly common, Careblazer. When we’re so focused on somebody else’s health, it’s common to neglect our own. We don’t have time to eat healthy or work out the way we want. We make sure our loved one gets to their appointments, yet we neglect our own, and we’re probably behind on appointments we really needed to go to.
If this sounds like you, start small. Starting small can lead to really big changes. Perhaps it’s:
- drinking more water throughout the day
- eating more fruits and veggies
- stretching
- praying or journaling
- reaching out to a friend
- meditating
- walking
- actually picking up the phone and scheduling that appointment you’ve been putting off
You do not have to do everything all at once. As soon as we start thinking that way, we get so overwhelmed, and if you’re anything like me, a little bit paralyzed. And then you do nothing.
So don’t put that pressure on yourself. Just do one thing. Just start.
This matters because you have to make your own health a priority. Without you, who is going to be there to advocate for your loved one? It’s not taking away from your loved one. It’s actually helping them.
And contrary to what many people believe, you can make really big strides in your overall health without extra money or time. So don’t let that be your excuse. I share more small ways to start in self-care hacks every caregiver needs to know.
3. Irritability, Anger and a Short Temper
This one might hit home for many of you. It hit home for me.
Have you found yourself more short-tempered, irritable, frustrated or even resentful? Maybe you’re snappier with the people in your life. Not just your loved one with dementia, but your children, your coworkers, your neighbors, other family members.
It’s not because you’re a bad person. It’s because caregiving is emotionally draining. Your patience bucket is running low, and that is okay.
Sometimes it’s the silliest things that set us off. I remember driving my dad’s truck once because it was due for emissions, which we have to do here in Arizona. He has an attachment on the steering wheel, a knob that’s supposed to make turning easier. It sits right at the three o’clock mark, and as I was turning and trying to drive, it kept hitting my hand.
I got so frustrated. Ridiculously mad over a knob that was there to help my dad. Unbelievably angry. I remember calling my sister and just ranting.
That’s the level of irritability I’m talking about, where your reaction is so out of proportion to the situation. I can look back now and think, “Oh my gosh, Natali, that’s ridiculous.” But in the moment, irritability, frustration and anger come out so much more easily, because we are tired. We are exhausted. We are scared. We’re feeling alone. We have so much pressure and so many responsibilities, and it’s all caving in. Sometimes it takes the littlest, silliest thing to set us off.
So when this happens, Careblazer, forgive yourself. We’re human. It’s going to happen. We just start again. We start fresh whenever we realize it.
And know that it’s probably going to happen again. It’s all okay.
4. Feeling Numb: A Classic Sign of Caregiver Burnout
This one might be hard to admit, but I’m telling you, it’s so common with the Careblazers I work with and talk to.
Sometimes you might feel like you just don’t care anymore. You might even catch yourself daydreaming about no longer being a caregiver, about a time when maybe your loved one isn’t around.
This is a classic sign of burnout. It doesn’t mean you’re a horrible person. It means you’re tired. And in some ways, it can also mean you’re ready for your loved one to stop suffering, and in many ways, for you to stop suffering too.
When you notice these kinds of thoughts, this is the most important time to be kind to yourself. It’s going to be a reflex to feel guilty and to feel bad about yourself for having them. But this is when you need to be the most kind, because it’s a sign that you are incredibly burned out.
Compassion is key here.
If the numbness feels like you’ve lost track of who you are, I go deeper in why dementia caregivers lose their sense of self.
5. The Guilt of Doing Something Nice for Yourself
This last one is something I have certainly struggled with myself: hiding it whenever you do something nice for yourself.
You’re in the middle of caregiving, with everything that entails. Then you get the chance to do something for you, something that feels good, without your loved one with dementia.
And rather than sharing that joy with other people and other family members, we hide it. Maybe we do it secretly, because we feel guilty about it. We’re afraid that if other people knew we were doing this, it would automatically translate into “this must mean I’m neglecting my loved one,” or “I’m not there for my loved one.”
Now think about how silly that really is. It’s silly to think a good caregiver could never do something alone, or never do something for joy, and that every single thing in their life has to be for or with their loved one with dementia.
Why do we feel like we need to hide this part of our lives? Why do people think that if we aren’t sacrificing 24/7, we’re not giving good care?
It’s ridiculous. But it’s so common.
This is the kind of thought I had to work on over and over again myself when caring for my mom and dad. I struggled with this one the most. I say that in the past tense because my dad passed away on November 25th, 2024. I officially have no parents.
So, Careblazer, life is hard.
I walk through more of the things caregivers feel guilty about, including going out without your loved one, in how to stop feeling guilty as a dementia caregiver.
Which of These Are You Experiencing?
Take a moment to reflect on these five experiences and ask yourself: are you experiencing any of them? Is there one you could choose and work on?
I don’t like that these experiences are considered normal. It would be a dream come true to change that narrative, and to change the way family members go through caregiving.
Careblazer, I know it’s hard. Keep showing up. Keep caring. But don’t forget that caring includes caring for yourself.
You’re stronger than you think. You really are.
That’s what we’re doing inside the Care Collective: changing what’s considered normal in caregiving, and working on it together. Doing what’s in our own best interest with our own health, as well as what’s in our loved one’s best interest. It’s not just about your loved one with dementia. It’s about you too, because you’re the one caring for them. You can learn more here.
