The Things We Carry Together

We’re about a month into a new year, a time when many people set intentions or resolutions with hope, only to find themselves drifting away from them. When that happens, guilt often creeps in. Quietly. Sometimes gently, sometimes not.

That same pattern can show up on the dementia journey.

Not because anyone has failed, but because expectations, our own or those of others, collide with reality. And when life does not unfold the way we hoped or planned, guilt can begin to take up space.

Guilt does not follow a predictable timeline on the dementia journey. For some, it appears early, tied to uncertainty and fear of what lies ahead. For others, it surfaces later, after a difficult decision has been made, after exhaustion sets in, or after something has clearly changed. And for some people, guilt never becomes a dominant part of the experience at all.

When guilt does show up, it often arrives unexpectedly. It may surface after a moment of impatience, after feeling relief when help finally arrives, or after realizing that love alone cannot fix what is changing. It can appear even when decisions are thoughtful, informed, and made with care.

This is one of the hardest truths to sit with. Dementia places people in situations where there are no perfect choices, only responsible ones. And responsibility, especially when it involves deciding on behalf of someone you love, can carry emotional weight long after the decision itself has passed.

Guilt, in these moments, is not a sign that something has gone wrong. More often, it reflects how deeply someone cares, and how painful it is to accept limits that were never wanted in the first place.

One of the reasons guilt can feel so heavy in dementia care is that so many decisions are made in moments of uncertainty. Decisions get made under pressure, during transitions, or when something has already shifted. Later, guilt steps in and asks, Was that really what they would have wanted?

That question alone can linger for years.

This is where having a person’s wishes clearly documented can make a meaningful difference. Not because it removes emotion, but because it gives direction when emotions are loud. Tools like a POLST form, completed while someone can still express what matters to them, offer something many care partners long for, reassurance.

POLST stands for Physician Orders for Life-Sustaining Treatment. It is a medical order, completed with a physician or other qualified healthcare provider, that documents a person’s wishes about care in the event of serious illness or medical crisis. Unlike advance directives, which are broader and sometimes open to interpretation, a POLST translates values and preferences into clear medical orders that healthcare teams are expected to follow.

What matters most is not the form itself, but the conversation behind it.

Completing a POLST allows a person living with dementia to express, while they are still able, what feels right to them. What matters most if their health declines. What they value in terms of comfort, intervention, and quality of life. These conversations can feel difficult, but they are often grounding. They help ensure that decisions made later are anchored in the person’s own voice.

For care partners, this clarity can soften guilt. It shifts the question from What should I do? to How do I honor what they already told me mattered? There is still grief. There is still complexity. But there is also alignment, and alignment can be steadying.

If a POLST feels like it could be helpful, the next step is simply to speak with the person’s physician or healthcare provider. They can help determine whether a POLST is appropriate and guide the conversation. It is not something to rush, and it is not something to do alone.

Even when wishes are clearly documented, guilt does not always disappear. Sometimes it comes from the outside.

Care partners often describe guilt that emerges not from uncertainty, but from reaction. Comments from extended family, friends, or even professionals can stir doubt long after a decision has been made. Someone questions the timing. Someone suggests an alternative. Someone implies that choosing comfort, limits, or placement reflects giving up.

What makes this especially hard is that these voices are often not present for the day-to-day reality. They do not see the exhaustion, the constant vigilance, or the careful thought behind each decision. They see an outcome without witnessing the process.

Even when a POLST exists, even when wishes have been discussed and honored, guilt can creep in through comparison and judgment. It can reopen questions that had already been thoughtfully answered.

Honoring someone’s wishes is not something that needs defending. Following a person’s expressed values is not a failure of care. It is care.

Guilt is not carried only by care partners. People living with dementia can feel it too, often in ways that are quiet and easily missed.

As abilities change, many people sense the shift long before others name it. They notice when help arrives sooner than it used to. They pick up on worry in familiar faces. They feel the imbalance when roles begin to change. Even when words become harder to find, emotions often remain accessible. Guilt can live there.

It may sound like apologizing too often. Or worrying about being a burden. Or holding tightly to promises that feel reassuring in the moment. Sometimes it shows up as resistance, frustration, or withdrawal. Not because the person is being difficult, but because loss of independence is painful, and guilt is one way the mind tries to make sense of what is happening.

For care partners, this can be especially hard. Hearing guilt expressed by someone you love can deepen your own. It can make boundaries feel cruel. It can make necessary decisions feel like betrayals. It can tempt you to promise things you cannot responsibly promise, simply to ease the moment.

This is where compassion has to stretch in both directions.

Respecting someone’s dignity does not mean avoiding hard truths. It means holding them with care. It means staying present while still protecting safety and well-being, even when that balance feels uncomfortable.

Guilt has a way of holding on more tightly when it goes unnamed. When it stays in the background, it can quietly influence decisions, conversations, and how people see themselves. Recognizing guilt for what it is, an emotional response to love, loss, and responsibility, can begin to change the experience. Naming it does not make it disappear, but it often makes it lighter. Once guilt is acknowledged, it no longer has to sit in the driver’s seat.

Where guilt begins to soften

Guilt rarely disappears all at once. More often, it loosens gradually, when people are given permission to stop carrying it alone.

For many care partners, guilt eases when they begin to separate responsibility from blame. Responsibility asks, What is needed now, given the reality of the disease? Blame asks, What did I do wrong? Those questions may sound similar, but they lead to very different places. When decisions are made based on safety, dignity, and what matters most in the present moment, guilt has less room to take hold afterward.

Guilt can also soften when people allow themselves to stay grounded in the present rather than replaying the past. Dementia has a way of pulling people backward, into what should have been done differently, or forward, into fear of what lies ahead. Neither place offers much relief. Returning to what is happening now, and responding to the person in front of you, can be steadying.

Shared understanding matters, too. Conversations with physicians, social workers, or trusted professionals can bring perspective when decisions feel heavy. Support groups and honest conversations with others walking a similar path often offer something just as powerful. Recognition. Hearing “I’ve felt that too” can quiet guilt in ways reassurance alone cannot.

Guilt also loosens when people return to values rather than outcomes. Tools like a POLST form can help, but the deeper work is ongoing conversation. Returning again and again to what matters most, comfort, connection, dignity, and quality of life, helps reframe decisions as acts of care rather than losses to be judged.

And finally, guilt often softens when people allow themselves to accept limits. Limits of energy. Limits of control. Limits imposed by a progressive disease. Acceptance does not mean giving up. It means acknowledging that love does not require perfection. It requires presence, honesty, and care offered within what is possible.

None of this removes grief. None of it makes decisions easy. But it can make them clearer. And clarity often brings a measure of peace where guilt once lived.

At some point on the dementia journey, many people come face to face with another hard truth. There are no perfect choices. There are only choices made with care, information, and love, in the context of a changing brain and changing circumstances.

Guilt often tries to rewrite the story. It asks people to measure care by sacrifice rather than intention. It whispers that they should have done more, waited longer, or chosen differently.

But guilt is not a reliable narrator.

A simple truth sits underneath all of this.

Dementia is progressive. Love does not stop the disease, but it can change the experience.

That does not mean love is powerless. It means love shows itself differently. In presence. In advocacy. In boundaries. In hard conversations. In choosing comfort when cure is no longer possible. In letting go of outcomes while staying connected to the person.

You do not walk this path perfectly.

You walk it humanly.

And that matters.

Looking for support? Reach out. Let’s navigate this together.

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