What Would Your Person Living With Dementia Want For You?

It is truly astounding how much emotion emerges when people finally reach a breaking point where they feel there is no alternative but to seek support. As a professional in aging services, I regularly hold space for families to share their stories. By the time families sit down across from me, they have often been managing the care of their loved one for months, or even years. What emerges is grief, guilt, exhaustion, and extraordinary love.

They tell me about who their mother has always been. What it was like growing up in her home, how she supported them through a difficult divorce, how she never missed a game or recital, and what a beautiful grandmother she has been to their children. They tell me about the husband who spent decades sitting beside them at the dinner table, raising children, building a life, and weathering challenges they never imagined they would face. They talk about relationships, memories, promises, and history.

These are emotionally dense conversations.

What I find interesting is that while caregivers frequently describe the people they love in remarkable detail, they rarely spend much time talking about themselves. They may briefly mention the friend who offered to help, the neighbor who checks in, or the family member who suggested bringing in additional support, but those details tend to remain in the background. The focus almost always returns to the person they are caring for.

At first, I assumed this was simply because caregivers are selfless. To some extent, that is certainly true. Most of the caregivers I meet are extraordinarily devoted people who would rather spend an hour talking about their loved one than a minute discussing their own struggles.

Over time, however, I began to notice something else: Many caregivers do not simply place their own needs lower on the priority list. They often remove themselves from the equation entirely.

Conversations about their own exhaustion are quickly redirected back to their loved one. Discussions about support tend to focus on why someone else might need it more. Even when caregivers acknowledge they are struggling, they rarely view their own well-being as something worthy of attention independent of the person they are caring for.

The more families I’ve worked with over the years, the more I find myself returning to the same question: Why is it so difficult for caregivers to accept support, even when they clearly need it?

On the surface, the answer seems obvious: Caregivers are busy. They are focused on the person they love. They are trying to manage an endless list of responsibilities while adapting to the reality of a disease that changes not only memory and cognition, but relationships, routines, expectations, and family dynamics.

However, I believe something deeper is happening.

Many caregivers are not refusing help because they don’t know they need it. Most know exactly how overwhelmed they are. They are not refusing help because they don’t care about their own well-being, and they are not refusing help because they are unaware resources exist.

Often, they are refusing help because accepting it feels inconsistent with the promises they have made to the people they love.

What makes this so complicated is that these promises are rarely spoken out loud. Most caregivers could not point to a specific moment when they decided they would do everything themselves. In fact, if asked directly, many would probably insist that they do not believe they have to do everything themselves. Instead, the routine develops gradually. They begin helping with medications, appointments, finances, transportation, meals, and supervision. As the disease progresses, so does their level of responsibility. Because the increase happens slowly, caregivers fail to notice when helping has become managing and when managing has become carrying nearly every aspect of another person’s life.

By the time they recognize the volume of their responsibility, it has become intertwined with their identity. Stepping back no longer feels like accepting support from others. It feels like abandoning a responsibility they never intended to hand off to anyone else.

For spouses, these promises may be decades old. They were made long before anyone had ever heard the word dementia in relation to their husband or wife. They were woven into wedding vows, years of shared experiences, pillow talk after the passing or hospitalization of a parent, and a lifetime they built together. Caring for a spouse who is living with dementia isn’t a task. It’s an extension of the relationship itself. The commitment to care for them is not simply practical; it is deeply personal and relational.

For adult children, the promise often takes a different shape. Many are caring for parents who spent years showing up. Attending games, recitals, school events, graduations, weddings, and countless moments that now exist as cherished memories. When those parents begin needing support themselves, caregiving can feel less like a choice and more like a debt that can never truly be repaid.

In both situations, the balance of the relationship changes.

Somewhere along the way, responsibility stops feeling shared. Caregivers begin believing that because they are responsible for their loved one’s well-being, they must personally provide every aspect of their care. The distinction is easy to miss, but it matters. Being responsible for someone is not the same as being the only person involved in supporting them. Yet many caregivers spend years operating as though those two things are synonymous. The possibility that support could be added without diminishing their role as a spouse, daughter, son, or care partner often goes unexplored.

I have seen this dynamic play out in countless ways over the years. Sometimes it is a husband who spends nearly a decade caring for his wife before accepting support because he believes it is his responsibility to meet every need himself. Sometimes it is adult children rearranging their entire lives around a parent's care. The details vary, but the underlying belief is often the same: because I am responsible, I must be the one doing it.

As professionals in aging services, we assume people know what resources exist and are simply not using them. In reality, many families have no idea where to begin. Most people do not spend years researching dementia care options before they need them. They are introduced to an entirely new world of terminology, services, programs, and decisions while simultaneously trying to support someone they love through one of the most difficult experiences either of them has ever faced.

If caregivers have spent years believing they must do everything themselves, why would they spend time researching options that require someone else to help?

They hear terms like respite care, adult day programs, support groups, home care, memory cafes, care consultations, caregiver coaching, and community resources, but they usually have little understanding of what those services actually look like, how much they cost, how to access them, and whether or not they would be helpful in their specific situation. Dementia is not one size fits all, after all.

By the time caregivers begin exploring those options, they are already exhausted. Not because they wanted to wait this long, but because they didn’t know where to start. And once they finally begin looking for support, they are often confronted with yet another overwhelming reality: an endless list of unfamiliar choices, services, programs, and decisions that seem to require immediate attention.

What many caregivers need to hear at that moment is that accepting support does not mean turning care over to someone else.

It does not mean making every decision at once. It does not mean committing to every available resource. It also does not mean admitting failure, nor does it require feeling guilty for not pursuing support sooner.

More often than not, support begins with something much smaller. A few hours of help each week. A support group. A conversation with a care consultant. An afternoon at an adult day program. One small step that creates enough breathing room for a caregiver to realize they do not have to do this on their own.

I saw a different version of this with a family whose mother, Mary, was living with dementia.

Mary had four daughters who loved her deeply. As we talked, it became clear that much of their lives revolved around making sure their mother was safe, supported, and cared for. What had begun as helping Mary gradually expanded into something much larger, affecting nearly every aspect of their own lives.

They spoke about missed opportunities with their own children and grandchildren, family gatherings they could not attend, and the countless adjustments they had made in order to meet their mother’s needs.

At one point, I asked them what kind of mother Mary had been to them.

The answer came easily.

They described a woman who never missed a recital, a game, or an important family event. The kind of parent who understood that showing up mattered.

As I listened, I found myself wondering what Mary would think about the sacrifices her daughters were making on her behalf. So I asked them.

“What would your mother say if she understood that you were missing these moments with your own families because you felt responsible for doing all this yourselves?”

The room grew quiet.

For so long, they had been so focused on what they owed their mother, that they never stopped to consider what their mother would want for them.

Caregivers spend so much time thinking about what they owe the people they love that they rarely stop to consider what their loved one would want for them.

Most loving parents would be heartbroken to discover that their children were sacrificing marriages, friendships, health, and irreplaceable family experiences in an effort to prove their devotion.

At the time, I was helping that family navigate a move into a dementia care community. Today, I might begin the conversation differently. I would ask whether additional support could be brought into the home through professional caregivers to help with companionship and supervision. Whether respite services or an adult day program could create opportunities for engagement and connection, while preserving precious time and energy for the family.

Frequently, families believe there are only two options: do everything themselves, or move their loved one into residential care. In reality there is an entire spectrum of support that exists between those two extremes.

Perhaps that is why this issue feels so complicated. The obstacle is not aways a lack of resources. Sometimes it’s a belief system.

Our culture is such that family takes care of family, and there is tremendous value in that belief. But somewhere along the way, many people began interpreting that statement to mean that family must do everything themselves. They began believing that accepting support is somehow inconsistent with love, commitment, or devotion.

The families I have known over the years suggest otherwise.

The most successful caregivers are rarely the ones who attempt to carry every responsibility on their own. They are the ones who learn how to build support around themselves and the person they love. They recognize that responsibility does not disappear when support is added; it simply becomes more sustainable.

Being responsible for someone is not the same as being the only person involved in supporting them.

The question was never whether caregivers should continue caring for the people they love. Most already know the answer to that question.

There is a difference between remaining responsible for someone’s well-being and believing you must personally meet every need they have.

One allows room for support, community, and sustainability.

The other often leads to exhaustion.

Loving someone does not require doing everything alone.

It never did.