4 Common Thoughts Dementia Caregivers Have (But Don't Talk About)
1. It’s Okay to Be Grossed Out by Dementia Care
Alright, let’s start with the one that most caregivers try to push to the back of their minds: feeling grossed out by caregiving tasks. Whether it’s bathing, toileting, brushing their teeth, or feeding them, dementia care can get messy—literally. And that’s okay.
You might be thinking, “What’s wrong with me? I should be able to handle this without feeling disgusted.” But I want you to know that you’re not alone. There are many aspects of caregiving that can be physically and emotionally overwhelming. As the disease progresses, you’ll probably have to provide more hands-on care, and sometimes it just gets to be a lot.
2. Having Negative Thoughts About Your Loved One Is Normal
Here’s another tough one: negative thoughts about your loved one. Whether you’re thinking, “I wish they were easier to deal with,” or “I don’t even enjoy spending time with them anymore,” these thoughts happen. And I’m here to tell you—they’re normal.
But let’s get one thing straight: these negative thoughts don’t make you a bad caregiver. It’s the nature of dementia—it’s hard, and it can feel like an emotional rollercoaster. What matters is that you keep showing up, even when it’s tough.
3. Wishing Your Loved One Was Dead Doesn’t Mean You’re a Horrible Person
Alright, now we’re going to get into the thought that almost no one wants to admit: wishing your loved one was dead. Yes, I said it. And you know what? It doesn’t make you a terrible person for thinking this.
Caregivers confide in me all the time, saying they’ve had this thought, and it comes with so much guilt and shame. But here’s the thing: this thought usually doesn’t come from a place of cruelty. Instead, it’s often about wanting relief—both for your loved one and for yourself.
Maybe you’ve watched your loved one’s quality of life decline to the point where it’s heartbreaking. Maybe you’ve had the very human desire to reclaim your own life, free from the 24/7 demands of caregiving. According to the Alzheimer’s Association’s 2023 report, 72% of family caregivers feel relief when their loved one passes away. That’s a huge number, and it tells us that this feeling is far more common than we realize.
This thought doesn’t mean you’d ever do anything to harm your loved one. It simply means you’re human, and you’re carrying a heavy burden. Give yourself permission to feel this way without judgment.
4. Not Wanting to Be Intimate with Your Loved One Is Totally Normal
Let’s talk about intimacy. It’s not uncommon for caregivers to experience a loss of sexual desire or feel uncomfortable being physically intimate with a spouse or partner who has dementia. And guess what? That’s okay.
Many caregivers confide in me that they don’t feel the same way toward their partner as they once did, and they’re scared that it makes them a bad spouse or partner. But I’m here to tell you that this is a common experience, and it doesn’t mean there’s something wrong with you. It just means your relationship has changed, and that’s a part of this journey.
The Reality of Dementia Care: It’s Okay to Feel What You Feel
Now that we’ve gone over these four tough thoughts, I want to drive home the point that none of these thoughts make you a bad caregiver. They make you a human being, and they reflect just how challenging caregiving can be. You’re doing something incredibly difficult, and it’s okay to feel all of these things—without guilt or shame.
I hope this post has helped you realize that you’re not alone in these feelings. Caregiving is hard, and it’s important to talk about the difficult stuff, not just the moments of joy.
How Can You Cope with These Thoughts?
So, how do you cope when these thoughts pop up? Here are a few tips:
Acknowledge your feelings: The first step is to acknowledge your thoughts without judgment. They’re there, and they’re normal.
Reach out for support: It can be helpful to talk to someone who understands, whether it’s a friend, therapist, or fellow caregiver. You’re not alone, and sharing your thoughts can lift some of the weight off your shoulders.
Join a support group: I’ve created the Care Collective for caregivers just like you. It’s a space where we have weekly support groups, live Q&A sessions, and a 24/7 community to connect with whenever you need it.
Practice self-compassion: Give yourself grace. Caregiving is tough, and it’s okay to take time for yourself.
What Would You Add to the List?
Remember, you’re not in this alone. If you want ongoing support, you’re welcome to join our Care Collective community, where you’ll find support groups, expert advice, and resources to help you through the caregiving journey.
Sending you so much love.
Final Thoughts
Dementia caregiving is one of the hardest things a person can do, and it’s filled with unspoken struggles. But you’re not alone, and you’re not a bad caregiver for having these tough thoughts. Let’s start the conversation—because the more we talk about it, the less guilt and shame we carry.
Watch On YouTube
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