When Mom Gets Dementia, Who Picks Up the Mental Load?

My mother sounded distraught over the phone. “I’m calling to apologize. I missed everyone’s day. Their special day.” She was referring to the fact that she thought she’d forgotten a few recent family birthdays.

The thing is, she hadn’t missed anything. My sister's birthday had been two months earlier, and she’d remembered it. My own birthday was still a month away, but I understood my mother’s fear of forgetting.

My mother has Alzheimer’s. Her brain is slowly losing the pieces she was responsible for during her nearly 50 years of marriage and 47 years of mothering. 

Like many women, my mom is the one who kept tabs on the big days and small events, the one who sent the birthday cards and organized my parents’ overscheduled social life, despite the fact that they both worked outside the home. She maintained the running to-do list: the groceries to get, the gifts to give, the friends to call, the ins-and-outs of every day. It’s my mom who understood the emotional importance of the items on that list — the care packages to be sent to the grandkids at camp, the check-in call after a doctor’s appointment, the reminders to “phone your sister.” My father’s best friend recently referred to all of this as my mom’s “50 years of competence” when he expressed concern for what it would truly take to get my 73-year-old-dad up to speed on the skills and relationship hygiene tasks of which he has never even been aware.    

Hidden deep in this “50 years of competence” is the mental load that my mother shouldered all those years. It’s a form of invisible labor that most women disproportionately carry their entire life due to a lopsided distribution in male-female partnerships. To be absolutely, unequivocally 100% clear: This so-called “competence” my parents’ friend referred to is not a biologically determined trait but rather an acquired skill from a life spent juggling all the things related to home and family.

The “mental load” I’m referring to extends beyond the typical to-do list of home management tasks. It’s also different from physical tasks (doing laundry; taking out the trash); financial undertakings; or classic household ‘chores.’ Dr. Leah Ruppaner, a professor of sociology at the University of Melbourne and the author of “Drained: Reduce Your Mental Load to Do Less and Be More,” describes mental load as “emotional thinking work,” which includes everything from life organization and relationship hygiene to magic making and dream building. On paper, it’s easy to think these things represent the nice-to-have, softer sides of life — the calendar keeping, the social glue, the holiday festivities, the cheering squad, the hug giving. But they’re actually core to a quality human existence. (And no, I’m not exaggerating.) We expect them and rely on them even if we don’t always realize we do — until they’re gone.

What makes mental load especially hefty is the way it combines both cognitive and emotional labor. Ruppaner lists seven stages of mental load in her book including: identifying problems, remembering, strategizing, decision-making, delegating, executing, and monitoring. That each of these stages comes with its own emotional machinations is precisely what makes the burden so onerous.

So when the person — or, let’s just be real and say the woman — presiding over all this labor is unable to do it because her mind is slowly being eroded by dementia, what happens next? Who steps in to catch what gets dropped and at what cost? And if there is no one to step in, what gets lost?

Recently, I spoke with Justine,* whose mother has primary progressive aphasia, a neurodegenerative disease. (Editor’s note: Justine’s name has been changed to protect her family’s privacy.) 

When her mom got sick, Justine’s father, Peter, stepped in as primary caregiver. 

Overwhelmed and without a partner's eyes on his own health, Peter ignored his own medical symptoms that turned out to be a ruptured gallbladder. He spent nearly two weeks in the hospital when the resulting infection grew gangrenous and spread to his liver and colon."

If his wife had been her usual self, it’s possible that none of this would have happened. “I think there had been symptoms earlier, but he hadn't paid attention to them,” Justine explained. While it’s not uncommon for caregivers to neglect their own health, it’s also true that women are often the ones who recognize health symptoms in a partner, encourage them to see a doctor; find them a doctor; and urge them to go to the hospital — also a part of carrying the mental load. 

Without her mother to help, Justine had to fly across the country to manage every element of her father’s healthcare, including sleeping in his hospital room at night. “He relied on me for absolutely everything,” she recounts. 

During Peter’s hospitalization, Justine drove more than 45 minutes each morning to check on her mom, and then turned right around to be with her dad. 

Devoting that month to caring for both her father and mother required her to walk away from an important contract job she had only recently started — a major financial setback, she told me. That’s not surprising: In a country with limited access to family leave, it’s common, for women, especially, to lose wages and even lose their job due to unexpected caregiving demands.

Despite the uptick of the term “mental load” in popular media over the last few years, academic research on the topic is relatively new. Most of what’s out there focuses on early marital partnerships and parenthood, with gender inequities measured in narrow ways — primarily in the workplace or how household labor is distributed. As a result, strategies to narrow the male-female mental load gap often focus on parenting couples, and mostly around what mothers or female workers can do to solve the problem.

But when I asked Dr. Ruppaner the sociology professor, about whether researchers are focusing on what happens when women — who comprise two thirds of people living with Alzheimer’s — can no longer carry the mental load, she responded, “As far as I know, no one is studying that.” 

We need to widen our point of view further into the future, to when dementia sets in and the invisibly juggled balls begin to crash. Watching my own father’s life shift and talking with him and other male caregivers, I appreciate and admire the complexity that men face when stepping into a spousal caregiving role. Supporting a life partner with dementia is impossibly heartbreaking. Often, for men, it also requires a masculinity-challenging identity shift alongside the physical, financial and psychological challenges that go with providing care. And yet, despite the difficulty of a late-in-life transfer of the mental load, it’s rarely considered, though it exists beneath all these other factors, touching all types of families in all kinds of circumstances. 

Perhaps that’s why it tends to fall right back on the women in the family. Because of course, you need to see what gets juggled to know what needs catching. And it’s women who tend to do the seeing — the daughters and sisters and daughters-in-law — and it’s women who tend to do the catching. No wonder the authors of an article on dementia care in JAMA Neurology said: “The best long-term care insurance in our country is a conscientious daughter.” Yet even these authors failed to consider the additional invisible work related to mental load, and how it is so often passed off to women. 

That’s the case even as more men are stepping into caregiving roles. We’re all for that, but research suggests that men are still not providing the same quality of emotionally supportive care that women do. Many are just not accustomed to doing the “emotional thinking work.” For example, one study found that daughters (and other women in the family) reported feeling more guilt and mental attachment to the typically domestic tasks they took on than did sons about the (usually) administrative tasks they preferred. 

Women also had a harder time letting go of concerns surrounding the person with dementia. This aligns with research showing that daughters (as compared to sons) are the ones who are “sensitive” to a parents’ needs, and so, are more likely to provide the kind of care that falls into the mental load category, including acting as the primary contact in the care journey, even when the parent has formal, paid care.

“It's the little things….” Justine told me. “I see where there are windows where I can step in and I do it. When I start to pull myself back, I think: This is such a burden to bear. Do I have to hold it all?”

On top of everything else, when dementia takes away the person primarily responsible for emotional labor, it adds a heavier layer to the caregiving experience for the rest of the family. 

“My dad may ask how my day is going, how my jobs are going, but there is never a thought to ask me how I am actually doing,” Justine told me. 

The question is, can we do a better job of preparing boys and men to eventually  step into a primary caregiving role, mental load included? 

In some ways, that preparation has begun, in the important public conversations we’re increasingly having about the need for male partners and fathers of young kids to be aware of and participate in the invisible labor it takes to run a household and to understand the endless demands of mental load. If those conversations help create more balance, from young couplehood and new parenthood up through older age, that’s something to celebrate.

As for the growing number of women sandwiched between caring for their own families and aging parents, we urgently need society to acknowledge what we do, mentally and physically, as we have for so long. We also need to talk about the quality of care we want for ourselves, as women, when and if we’re no longer able to carry the mental load. We need to be asking our male partners: How will you step in and fully care for the person you love? Because women deserve to be cared for in the ways they have cared for others. And we need a better plan than simply hoping that a “conscientious daughter” will be there to pick up the pieces.