In our recent group coaching session, we approached a topic that no one really wants to draw too close to. One brave woman shared how sometimes life doesn’t look like you thought it would because illness changes the shape of everything you once knew and everything you imagined for the future.
Two people who once moved through the world shoulder to shoulder, carrying equal weight in familiar ways, suddenly find themselves standing on different terrain. One remembers more quickly. One processes more slowly. One begins quietly compensating for what the other can no longer reliably carry. At first, the adjustments are so subtle they can almost be mistaken for ordinary aging or fatigue. A repeated story. A missed detail. A forgotten direction. A husband who used to effortlessly navigate crowded conversations is now growing quiet in noisy rooms. A wife instinctively steps in to smooth transitions before anyone else notices.
And because love is protective, she tells herself this is temporary. Manageable. Explainable. Then, one day, she realizes she is no longer simply accompanying him through life. She is holding part of life together for him.
I’m still in awe of the vulnerability and courage my friend showed when she brought her experiences of accompanying her husband through the early stages of cognitive decline to coaching. Their lives are still deeply beautiful. They pray together. Exercise together. Serve together. They have spent years guiding converts into the Church, and their shared ministry has become part of the architecture of their marriage. But during this year’s Easter Vigil, something became painfully clear.
The demands of Holy Week had asked too much of him, and the ministry they knew so well exceeded his capacity. If you understand anything about parish life during Holy Week, you get it. There had been preparation beforehand, disrupted routines, long hours, overstimulation, late nights, emotional intensity, endless interactions. By the time the Vigil Mass began late Saturday evening, he simply could not stay awake. He slept through much of it.
What struck me most deeply was not her frustration. There was very little frustration in her telling of the story. In fact, she spoke with remarkable tenderness. She understood that he was vulnerable. She understood fatigue. What grieved her was something else entirely: she realized she could no longer divide herself between ministry and caregiving as she once had.
In previous years, she might have spent long stretches talking with students or helping coordinate details, while he carried out his own role independently during the evening. But now, if she disappeared into another room for two hours, he became confused and disoriented. Her presence itself had become stabilizing for him. He could still participate beautifully, but increasingly, he needed to participate beside her. (I have deliberately emphasized that thought so you can stop and recognize its magnitude.)
And just as the enormity of it settles in, there comes another recognition, or another nagging set of questions she can ask herself:
Am I failing to adjust to reality quickly enough? Am I doing enough to help him succeed?
Last year, a friend of hers noticed signs that something was wrong. She gently gave voice to concerns. This year, the undeniable question the wife posed to herself was whether she was still operating under last year’s assumptions. She had adjusted beautifully inside their home. She no longer assumed he would remember conversations. She handled more of the driving. She scaffolded daily life in practical ways. But in public, some part of her was still trying to preserve the illusion that nothing had changed.
That distinction matters more than we often realize. There is a difference between protecting dignity and protecting the illusion that nothing has changed. Those are not the same thing. One preserves a person’s identity as a human created in the image and likeness of God. The other eventually becomes impossible. It sets the well-intentioned caregiver up for certain failure.
I think many women understand this instinctively, even outside the context of illness. We spend enormous amounts of energy trying to preserve normalcy for the people we love. We smooth over. Anticipate. Absorb. Translate. Adjust quietly behind the scenes so that everyone else can continue moving comfortably through the world. We become managers of emotional weather systems. Curators of continuity. Guardians of the familiar.
But eventually, life introduces realities that cannot be managed back into submission. Illness. Aging. Estrangement. Grief. Limitations. Exhaustion. The loss of old roles. The loss of old capacities. The loss of the marriage as it once functioned. And often, the suffering deepens when we keep measuring ourselves against an outdated version of reality.
This woman’s deepest pain was not actually logistical. It was relational. She was grieving the loss of the mutuality that once existed between them. She missed the husband who could independently co-carry the ministry load, process quickly in social settings, and navigate demanding environments without her constant awareness. She missed having someone who could fully share the invisible mental labor. And frankly, now she is without someone to lean on when she is weary.
Caregiving for cognitive decline is particularly exhausting because so much of the work is invisible. It is not simply helping someone remember appointments or handing over car keys. It is, in many ways, becoming an external executive functioning system. It is constantly monitoring orientation, processing speed, fatigue, stimulation, emotional regulation, transitions, confusion, and social dynamics. It is carrying continuity for two people at once.
And because labor is invisible, caregivers often do not recognize how much they themselves are becoming depleted. One woman in the conversation described caring for her father and constantly feeling guilty whenever she made a decision that was not the “optimal” one for him. Sometimes she allowed independence simply because she no longer had the energy to manage the consequences of doing everything perfectly. Another woman observed gently that sometimes the person who needs protecting still believes he can do everything he once did. Another reflected on the grief of accepting a “new normal” and learning to find joy there rather than continually comparing life to what used to be.
That phrase rang throughout the conversation: the new normal. Not because it is tidy or comforting. It is neither. Usually, we do not want to embrace the new normal. We would much prefer the old normal.
But accepting a new normal is often the beginning of tenderness instead of panic. It is the beginning of adaptation instead of exhaustion. It heralds the beginning of functioning well within reality rather than managing ongoing performance.
At one point, I challenged her to consider and name how she was made for the challenge in front of her and how she was uniquely equipped to live it out well.
She pointed to God’s grace. And then she kind of stopped. When pressed to recognize her own virtues and her own capabilities, she was stumped. So I invited the other women in the group to contribute. What emerged was one of the most beautiful moments I have witnessed in a long time. They did not offer productivity advice or platitudes. They named what they saw in her.
They saw attentiveness.
Patience.
Courage.
Honesty.
Fortitude.
They saw a woman willing to face reality without running from it. A woman learning to love someone through changing terrain. A woman carrying an enormous mental load, not because she is controlling, but because she is devoted.
One young woman said something I have not stopped thinking about since:
“God gave you so many years of marriage to know your husband and yourself so deeply. Your heart has been being prepared from the start.”
I think that is true of many difficult vocations in life. We are rarely “made” for them in a single dramatic moment. We are slowly shaped by years of ordinary faithfulness. Through shared meals and inside jokes and disappointments and reconciliations and prayers whispered half-asleep beside someone we have loved for decades. Often, long marriages build deep familiarity long before they require deep sacrifice.
And perhaps this is one of the hidden truths of enduring love: eventually, nearly every marriage asks us to become students of one another’s weakness, not just one another’s strengths. We are called to the ministry of a lifetime, to love the weakest version of each other, not just the polished and capable versions of ourselves. We soothe the frightened versions. We support the aging versions. We compensate for the diminished versions. We offer refuge and rest to the exhausted versions. And yes, we sometimes stagger under the weight of the versions that cannot carry what they once carried.
