5 Dementia Caregiving Truths I Wish Every Caregiver Knew

If you have been a dementia caregiver for any length of time, you already know that no amount of preparation makes this easy. You are not imagining that. This journey is genuinely one of the hardest things a person can go through, and most of what makes it hard never gets said out loud.

I have worked with thousands of dementia caregivers over the past 17 years as a geropsychologist, and I keep coming back to the same five truths. These are not based on a research study. They are based on what I have seen, over and over, in the caregivers I have sat with. And I think the more of us who understand these five things, the more peace, ease, and belief we can build that we are going to get through this.

My hope is that you will not just read these truths, you will start to live them. Some of them go against everything we think is right. But when you can actually let them settle in, caregiving gets a little more bearable.

Truth #1: It Is Going to Hurt, No Matter What You Do

No matter who you are caring for, no matter how much you love them, no matter how much they love you back, no matter how good or how strained your relationship with this person has been, this is going to hurt.

Think about it. We are caring for somebody with a disease that does not have a cure, that progressively gets worse no matter what we do to help. 

In fact, the more we do to help as dementia progresses, it does not stop, delay, or change the outcome. The end result is still inevitable. 

That is heartbreaking. There is no way to get through this caregiving journey without emotional hurt.

So instead of trying to get rid of the hurt, or wishing it would go away (two things that are simply not possible), what we want to do is get better at feeling it. Get better at coping with it, processing it, moving through it. Just like people go to the gym to build physical muscle, we need to go to the gym to build our emotional muscle, our emotional strength.

We build that muscle by knowing we can support ourselves through the really hard moments. Let’s stop pretending this isn’t supposed to hurt. It is supposed to hurt. That does not mean you are doing anything wrong.

I hear from so many caregivers who think there is a version of this journey where the hurt eventually stops if they just find the right strategy, the right routine, the right way of explaining things. I understand why we want to believe that. But the hurt is not a sign that something is broken in how you are caregiving. It is a sign that you love someone who is losing pieces of themselves, and that you are grieving that loss in real time, over and over, long before it is final. Building emotional strength does not make the hurt disappear. It means you know you can feel it, get through it, and still show up for your loved one tomorrow.

Truth #2: You Cannot Control What Other People Think of Your Choices

This one matters most if you are the primary caregiver, the one making the hard calls, and you have people in your life who do not agree.

Here is the truth: you cannot technically cause other people to feel anything. Their feelings are based on their own thoughts, no matter what you tell them. That means whatever your adult daughter, your sibling, or a friend from church is thinking about your decisions, whether it is about placement, about keeping your loved one at home, or anything in between, that is their thought. Their opinion. Their feeling.

And no matter what you say, no matter how much evidence you give them, no matter how hard you try to convince them, you actually have zero power to change their viewpoint. If someone’s opinion changes, it is because they changed their own thought. We do not have the ability to go into someone else’s brain and make them see what we know to be true.

You are the one doing the majority of the care. The people offering opinions from the outside, whether it is a family member who visits occasionally or someone quoting “in sickness and in health,” are only seeing a small snapshot. Nobody truly knows what is best for your loved one but you, the person who is there.

So we have to let go of trying to convince people and instead put our energy toward simply letting them know what is going on, while releasing the pressure to get their agreement. 

You are not being selfish. 

You are not making bad decisions. 

You are not dishonoring anything by proceeding the way you are proceeding.

This is often the hardest truth to actually live, because we want the people we love to understand us. But notice how much energy gets spent building the perfect explanation, gathering the evidence, rehearsing the conversation, only to have the other person walk away with the same opinion they started with. That energy is better spent on your loved one, and on yourself. You can share what is happening without needing anyone’s approval to move forward.

Truth #3: You Cannot Stop Your Loved One’s Emotional Pain, and That Is Not Your Job

This is a hard one to sit with. We cannot stop our loved ones with dementia from feeling emotional hurt and pain themselves. 

They are still human, and they are going to feel emotions.

Think about what they are going through: strangers coming into the home to help with personal care, eventually moving into a place where other people provide their care, leaving their home, no longer being able to drive safely, manage their own finances, or stay home alone. Even if their memory is failing and their judgment is no longer sharp, even if they will forget the reason why something changed, they still feel the pain of life being different. They still feel the confusion of not fully understanding what is happening.

Their emotional pain is not a sign that you are doing something wrong, or that you did not explain it well enough, or that you are a bad caregiver. 

Their emotional pain exists because they are going through painful things, just as you are going through painful things, and I am going through painful things, because experiencing emotional pain is part of being human.

Instead of thinking we have to fix it right away and get them to feel better instantly, we can simply be present. 

Sit with them. 

Comfort them. 

Reassure them. 

Hold their hand. 

Let them have their feelings. 

We cannot fix their feelings, just like we often cannot fix our own. They have to feel it first. So do we.

What This Looks Like in Real Life

You do not need the perfect words. If your loved one gets tearful and cannot tell you why, you do not have to solve it or redirect them out of it right away. Sitting quietly next to them, or saying something as simple as “I’m right here with you,” does more than any explanation could. Just being there is enough, and you are allowed to let it be.

Truth #4: The Way You Talk to Yourself Matters More Than You Think

This is my favorite one, and it applies to every dementia caregiver I have ever worked with. Pay attention to what you are saying to yourself in your own mind.

Many of us, myself included, go through our days without ever noticing what we are actually saying to ourselves. And I would bet that the things you are telling yourself, when no one else can hear it, sound horrible. Critical. Negative. If somebody else in your life spoke to you the way you speak to yourself, that person would not still be in your life.

But when it comes to our own inner voice, we just accept it. 

We do not question it. 

We repeat thoughts like “I should be better than this. I’m not a great caregiver. I’m so selfish. I’m horrible for wishing this was over, for missing my friends, for wanting to go on vacation, for sometimes hating when he does this.” 

We berate ourselves inside our own heads, and then wonder why we feel so awful all the time.

If you want one place to start changing how caregiving feels day to day, start here. 

Notice the voice. Question it. 

You would never let a friend talk to you that way. 

Do not let yourself do it either.

A Small Shift That Helps

The next time you catch a harsh thought about yourself, try asking, “Would I say this to another caregiver going through exactly what I’m going through?” 

Almost always, the answer is no. 

You would offer that person compassion, not criticism. 

You deserve the same compassion you would hand to a stranger.

Truth #5: No One Has All the Answers, Because the Disease Keeps Changing

Here you are, reading this, trying to learn how to show up in the best way possible for the person you love. That already says something about you. You are attending doctor’s appointments, watching videos, maybe even going to therapy yourself.

But here is the thing that does not get said enough: no matter how much help you get, how many videos you watch, or how many books you read, you are never going to have all the answers. 

You are never going to get this perfect, because you are dealing with a condition that is always changing, always progressing. 

What works today might not work tomorrow, because tomorrow your loved one is in a different place in their brain, functioning differently, and what worked yesterday no longer applies.

No one has all the answers, because the answers keep changing, because the disease keeps changing, because their brain keeps changing.

What we can do is hope to bring our absolute best, and our absolute best is going to look different depending on how tired we are, how much support we have, how we have eaten, and our own health that day. 

It does not look like perfection. There is no such thing. 

Give yourself a little bit of grace, a little bit of compassion, a little bit of understanding that you are going to get it wrong sometimes, because that is simply how dementia caregiving works.

I know how uncomfortable it can feel to not have a clear answer, especially when you are the one everyone else is looking to for direction. But needing to adjust your approach as dementia progresses is not a failure of planning. It is proof that you are paying attention, staying responsive to who your loved one actually is right now, instead of following a script that stopped applying months ago.

You Are Doing Better Than You Think

If you read all five of these and thought, “I get it, I’ve learned so many strategies, and some of them really do work, but I still feel this grief, this loneliness, this resentment, this overwhelm,” I want you to know that makes complete sense. Learning tips and strategies was never going to erase the emotional weight of this journey. That weight is real, and it deserves somewhere to go.

Inside the Care Collective, this is exactly what we focus on each week. Not just what is happening in the brain, but how to respond in real life, how to cope with the emotional impact, and how to take care of yourself while still caring for your loved one. It is all recorded, so you never have to change your schedule to be part of it, and you can get your own questions answered along the way. You can learn more here.

If any of these truths hit home for you, you might also want to read The HARD Truth: What No One Tells You About Caregiving, where I go deeper into the parts of this journey that so rarely get talked about.

Careblazer, I am sending you so much love. You are doing better than you think you are.