Truths From the Other Side of Dementia—Care Partner Fatigue
I was tired all the time. I probably looked like Eeyore—the gloomy, gray donkey from Winnie-the-Pooh who always seemed to need a nap—except I wore bright lipstick pretending I was “just fine.”
But the truth was, lipstick couldn’t hide the care partner fatigue I was experiencing in my role as a 24/7 caregiver for my husband through dementia. When he received his diagnosis, I inherited a role that I was completely unprepared for. Still, I believed I had to be Superwoman, so I stuffed all my unspeakable feelings and emotions into an invisible suitcase by my side. It grew heavier each day with components of guilt and grief, all adding to constant fatigue.
Care partner fatigue is more than being tired – it’s the physical, emotional, and mental exhaustion that comes from giving and giving without a break, while receiving little in return.
And here is a hard truth: This is the kind of fatigue we don’t talk about, so no one knows we aren’t really “fine.” We suppress our truths, and they go unacknowledged; as a result, we feel isolated, misunderstood, and alone.
According to the American Psychological Association, the cost of emotional suppression is burnout and chronic fatigue.
What helped lighten the load for me was learning that speaking my truths didn’t hurt as much as pretending.
Over the past two years, I’ve shared my story with various groups. Frequently, someone will approach me and say, “Thank you for saying what I haven’t had the courage to say out loud.” They carry their invisible suitcase, packed with their unspoken truths from the other side of dementia.
Here are a few truths I’ve come to recognize that wear us down and lead to care partner fatigue:
The Fatigue from Longing for our Losses
Dementia is a thief. Piece by piece, it robs you of the person you once knew. I never considered what normal was until it was gone. For me, it all started with ketchup. I knew I was in trouble when I would send my husband to the store with a list, and he would add a bottle of ketchup.
Disruptions of once predictable routines due to dementia are visible, but it’s the harsher truths that go deeper. I lost my soulmate. The relationship we had for years was forever changed. I longed to be one of those couples I saw walking by the lake, hand in hand, deep in conversation. I was jealous, an emotion rarely spoken out loud.
I never told the hospice social worker my truth. I know she thought I was foolish for resisting the lift chair she offered. When I finally gave in, which turned out to be a godsend, I explained: “I knew that if we brought in that chair, he’d be sitting off in a corner. I didn’t want to lose the sweet moments of sitting together on the sofa, lying my head on his shoulder. I wasn’t ready to let that go until I had no choice.”
Whenever a professional asked me to “sign here” for a significant decision—one that my husband and I used to make together, I was reminded that I had lost my trusted advisor. These were life-altering decisions and making them solo was emotionally exhausting.
Each moment like this adds to losses we mourn and long for, yet we carry silently.
The Fatigue from Facing our Fears
Living on the other side of a dementia diagnosis is full of unknowns. Our minds race with questions no one can answer: How much time do we have left? Will we run out of money? What if I get sick? My biggest unspoken fear was the reality that at some point, my husband would truly be gone, and I would be alone.
Fear isn’t just tiring—it can be paralyzing. It consumes emotional energy.
The Fatigue from Gnawing Guilt
Guilt is the emotion we don’t talk about, especially when voicing it seems like self-pity. It’s all those feelings of ‘I should’ or ‘I just can’t today. We feel guilty for taking time for ourselves, a coffee date or a massage. We feel guilty asking for help, thinking it may impose on others. We feel guilty hiring someone to do what we believe is our job.
I remember my friend saying she felt cruel for a decision she made about her husband. Now that is guilt!
All these instances of guilt become weight, manifesting in grief that builds over time.
The Fatigue from Thinking for Two
One of the most exhausting truths contributing to my fatigue was the constant need to think for both of us. I needed two brains, his and mine. While I often heard, “I don’t know how you did it.” I also knew that no one understood what it took. I needed to be hyper-vigilant, constantly anticipating what could go wrong before it did, then planning for it to go right. And then, there were things we could no longer do.
This unspoken sadness is wearisome.
Of course, not everyone needs to hear our truths. And, not every emotion needs to be expressed. But timely and thoughtful truth-telling about care partner fatigue isn’t complaining, it’s being human. Think of it like letting air out of a balloon.
Brain scientist Dr. Dan Siegel affirms the positive impact of truth-telling with his phrase, “Name it to tame it.” He demonstrates how labeling our emotions through words calms the nervous system, easing the heaviness we carry in our bodies. And the best part is that we don’t need to explain or apologize. We own our truths.
Acknowledging reality was emotionally restorative for me and invited meaningful compassion from others.
Admitting to myself that I was angry or afraid created space in my mind for acceptance and even forgiveness. It helped me realize that while things often felt heavy, I also carried love, resilience, and power with me.
When my daughters heard me say, “I’m frustrated because no matter what I do, I can’t fix it,” they were more empathetic as they watched me try so hard to hold on to parts of the life I cherished. With empathy in their hearts, they joke that my tombstone will read, “She Tried.”
And here is one more honest statement. Life with dementia can be crazy. There are instances when all you can do is laugh. I call it “caring with chuckles.” Laughter makes it possible to lift our suitcase every day. When my caregiving friend calls and says, “I just need to tell you … I know we are going to have a big laugh. Much better than the alternative.
I’ve come to understand that with truth comes triumph. My truth is that caregiving was the hardest job I’ve ever had. My triumph was that when I stopped pretending to be okay and was honest to myself and to others, my load was lightened.
