Here in the U.S., we admire the person who can do it all, without complaining. One of our favorite cultural icons is the man or woman who stands alone, rises to the occasion, and never asks for help.  

Well, that might work in the movies, but in real life such a go-it-alone mentality is a sure-fire recipe for burnout. Nowhere is that truer than in the arena of serving as a caregiver, particularly when caring for a spouse with dementia. As hero or heroine of our own story, we’re on call 24/7, serving faithfully, never murmuring a complaint. Meanwhile, as those who love us look on admiringly, we’re dying inside, and quite possibly heading for a health crisis of our own. 

That was our take-away as we read this poignant article from NextAvenue – a first-person account by writer and consultant Myrna Marofsky about her experience as caregiver to her husband suffering the progressive ravages of dementia. We’ve cited other articles by this author, including this one featured on the Blog some months back. 

Marofsky’s message reminds those of us faced with such an emotionally wrenching experience that we have to stop suppressing the feelings of guilt and grief that threaten to smother us. Being honest about our emotional burden is Step One toward surviving the caregiving experience intact. Let’s see what else this empathetic writer recommends. 

Tired All the Time, Pretending All is Well 

“I was tired all the time,” Marofsky begins. “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.’” 

Marofsky goes on to add that lipstick couldn’t hide the exhaustion of being thrust into a role she was completely unprepared for, as her husband’s caregiver. “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,” she writes.  

Care Partner Fatigue is the Grief We Don’t Discuss 

Care partner fatigue is a term used to describe something deeper than simply “being tired.” Rather, it’s a physical, emotional, and mental exhaustion that comes from giving constantly and getting very little in return, let alone a much-needed break.  

Marofsky writes, “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.” 

Research from the American Psychological Association says that emotional suppression carries the high price of burnout and chronic fatigue. This is why Marofsky believes so deeply in the power of telling her story.  

“What helped lighten the load for me was learning that speaking my truths didn’t hurt as much as pretending,” she writes. Here are some of the truths that—when left unacknowledged—can lead to care partner fatigue. 

Loss of Routine is Obvious, but Some Losses Go Deeper 

Dementia is a thief. This truth is an important starting place. Dementia is a disease that chips away at the person you know and love. Marofsky adds, “I never considered what normal was until it was gone.” 

Some losses can’t be seen. While some aspects of dementia’s disruption of normal life and routines may be visible to everyone, others simply aren’t. “I lost my soulmate,” Marofsky writes. “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.” 

A Lift Chair: Symbol of a Relationship Forever Changed 

We may avoid practical solutions to hide our pain. For Marofsky, one of the most revealing signs of her grief came in simple form: a hospice social worker’s suggestion that she get a lift chair for her husband.  Marofsky initially refused.  

She did eventually relent—and the chair ended being “a godsend”—but she explains her reluctance this way: “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.” 

We have to make major decisions alone. Many of the decisions that a caregiver makes are made in isolation, without the input from the person they used to make all of their decisions with. “These were life-altering decisions and making them solo was emotionally exhausting,” Marofsky writes. “Each moment like this adds to losses we mourn and long for, yet we carry silently.” 

Caring for a Spouse with Dementia: Numbing Fear, Gnawing Guilt 

The hypotheticals and unanswered questions that come from a dementia diagnosis can lead to real fear largely unexpressed. For Marofsky, that unexpressed fear was the knowledge that at some point her husband would truly be gone, and she would be alone.  

“Fear isn’t just tiring — it can be numbing. It consumes emotional energy,” she explains.  

It’s not only fear, but also guilt that joins in as an unacknowledged visitor. “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.”  

Dealing with the Constant Need to Think for Two 

The need to think for both herself and her husband was another fatiguing force. “I needed two brains, his and mine,” she writes. “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.” 

Marofsky notes that not everyone needs to hear our truths, and not every emotion needs to be expressed aloud. “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,” she writes.  

Ease the Burden by Telling Yourself the Truth 

Science affirms Marofsky’s conclusions. For example, brain scientist Dan Siegel, M.D., referring to crippling emotions, uses the phrase “Name It to Tame It.”  

Marofsky explains, “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.” 

For Marofsky, acknowledging reality was “emotionally restorative” and also inspired what she calls “meaningful compassion” from the people around her. “Admitting to myself that I was angry or afraid created space in my mind for acceptance and even forgiveness,” she writes. “It helped me realize that while things often felt heavy, I also carried love, resilience and power with me.” 

The change in her demeanor has been tangible. Her daughters in particular have been more empathetic as they watch their mother grieve what’s lost and hold on to what’s still intact.   

Marofsky quips, “With empathy in their hearts, they joke that my tombstone will read, ‘She Tried.’” 

Learn to Laugh – and Stop Pretending Everything is Fine! 

Marofsky ends her article with honesty and wisdom. “Life with dementia can be crazy,” she writes. “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.” 

She concludes, “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 OK and was honest to myself and to others, my load was lightened.” 

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(originally reported at www.nextavenue.org)