Grieving a Parent with Dementia: One Family’s Journey Through the Long Goodbye

Author’s Notes: This story was shared anonymously by a reader.

Writing this story has been a part of my own grieving process. Sharing these experiences with the hope they help others on this path brings meaning to what feels like a senseless loss.

My mother was diagnosed with frontotemporal dementia, which affects personality, behavior, and memory. While every person with dementia experiences the disease differently, the feelings of loss and the caregiving journey share common threads across all types.

You’re sitting across from your parent at dinner when they ask the same question for the third time in ten minutes. Your stomach drops. This isn’t just aging. Something fundamental changes, and you’re watching it happen in real time.

If you’re caring for a loved one with dementia, you’re not alone. More than 6 million Americans have Alzheimer’s disease, and countless families are facing this challenging journey together. It’s crucial to recognize that the grieving process often starts long before death when dementia becomes part of the picture.

For our family, it started gradually—missed appointments, repeated stories, small lapses that felt off but easy to explain away. Then the confusion grew, the questions began to pile up, and the realization hit: something fundamental was shifting.

Understanding the Grief That Starts Before the End

Dementia grief is unlike any other. It’s not a single moment of loss. It’s the slow disappearance of someone you love, while they’re still physically here. You experience the loss of the person in pieces—memories, personality, shared history—bit by bit. These feelings of grief don’t wait for the person’s death to begin. They creep in quietly and stay.

People call it “the long goodbye” for a reason. And it is grief. Full, valid, painful grief. Even when your parent is still alive.

Psychologists have a name for this experience: ambiguous loss. Dr. Pauline Boss, who pioneered research on this topic, describes it as loss that occurs when someone is physically present but emotionally or cognitively absent. Studies show that ambiguous loss can be more stressful than clear-cut loss because there’s no closure, no clear way to process what’s happening.

You’re also experiencing what grief researchers call anticipatory grief—the mourning that happens before a death. This combination can be emotionally exhausting. Your brain is trying to process multiple types of loss simultaneously, which explains why living with grief feels so overwhelming during the stages of the disease.

Making the Most of Early Moments

Understanding grief timing made our early decisions so important. In the earlier stages, when my mom still had flashes of clarity, I made a point to visit her monthly, even though she lived over 500 miles away.

We organized big family gatherings for holidays and Mother’s Day. We hired a photographer to document those final “good” moments, knowing they wouldn’t last. Those photos are now some of our most treasured memories.

It was a way of celebrating her, while we still could. We didn’t know how much time we had left with the version of her we’d always known.

When Dementia Behaviors Take Over

The middle stages were the hardest for us. As the cognitive decline progressed, my mom developed intense paranoia and delusions. She believed our stepdad was having an affair. Later, she turned on one of my brothers, accusing him of bringing people into her house and stealing from her.

It was heartbreaking. And exhausting.

We had to remind ourselves constantly during our day-to-day interactions: this isn’t her. It’s the disease. But when she said hurtful things or made us the target of her fear, it took real emotional work not to feel resentment.

The paranoia and confusion escalated. Eventually, our mom’s behavior became dangerous. She wandered off more than once and had severe anxiety that led her to leave the house alone. After multiple scares, we made the gut-wrenching decision to move her into a care home.

She didn’t want to go—and honestly, we didn’t want to make her. But we couldn’t keep her safe at home anymore, and her quality of life was suffering.

We learned quickly that not all facilities are created equal. We had to move her a couple of times before we found a place with the right experience, staff, and training to handle her unique challenges.

The Weight of Responsibility and Guilt

As her Durable Power of Attorney, I had to make decisions she wouldn’t have agreed with or understood, such as selling her home, cleaning out her belongings, managing her finances, and handling Medicaid paperwork after our mom’s funds were depleted.

Those were just some of the tasks I had to perform. The caregiving journey brought a staggering amount of responsibility.

Conflict was unavoidable—both internally and with her. She didn’t want to leave her home and didn’t understand why any of this was happening. Even though we knew we were doing what was best, the guilt was overwhelming.

It felt like we were betraying her, even though we were trying to protect her. These intense feelings are part of what makes dementia grief so complex.

Documenting the Journey

One thing that helped was keeping a record of difficult incidents—notes about times she wandered, the delusions, and the things that put her in danger.

This documentation helped us make informed decisions and provided a sense of control in a situation that often feels overwhelming. When guilt crept in later, reading those notes reminded us why we made the choices we did.

It wasn’t about giving up. It was about keeping her safe and preserving our ability to still show up with love during visits.

Finding Pockets of Support

I couldn’t have done it alone. My brothers and my partner were crucial. We divided responsibilities and supported each other emotionally through the range of emotions that dementia brings.

I also sought therapy, which gave me space to process the grief and guilt. Local support groups and online forums helped deal with what we were going through. The dementia support line became a valuable resource during crisis moments.

Remember, seeking support is not a sign of weakness, but evidence of personal growth and strength.

Creative Ways to Stay Connected

One thing that also helped was finding a way to keep friends and extended family in the loop. We set up a private Facebook group for our mom’s updates. I logged in to her account and posted about it so her friends could join.

It became a space where people could share memories, send greetings, or stay informed. This was especially helpful in the earlier stages, when she could still enjoy hearing from them.

We found additional support through a geriatric massage therapist recommended by a dementia specialist in our mom’s town. The massage therapist visited Mom weekly, offering massage, affirmations, and a calming, meditative presence.

She became our eyes and ears when we couldn’t be there, letting us know when Mom needed something or when to follow up with the care team. That connection brought unexpected comfort during a very difficult stretch.

When Connection Changes—but Doesn’t Disappear

These days, Mom no longer recognizes us. She doesn’t light up when we visit. Her words are gone. As dementia progresses to these later stages, that part of the grief has been especially tough.

But we still go. We sit with her, hold her hand, and talk to her. We stay present.

Even if the connection looks different now, it still matters. Our mom is still here, even as we navigate this end-of-life period.

Research supports this instinct. Studies show that even in late-stage dementia, familiar voices and gentle touch can provide comfort, even when recognition seems absent.

Practical Steps for Grieving a Parent with Dementia

Early Stages

• Acknowledge your grief now: Even if your parent is still alive, your feelings of loss are real. This isn’t premature mourning—it’s a natural response to watching someone change.
• Celebrate moments while you can: Make time for connection and create lasting memories during the early stages. Take photos, record their voice, and ask about family stories.
• Get a proper dementia diagnosis: Understanding the specific type of dementia (Alzheimer’s, frontotemporal dementia, Lewy body, etc.) helps you prepare for what’s ahead and connect with targeted resources.
• Set up communication systems: Create a Caring Bridge website or private Facebook group to keep friends and family updated. Share details like their address so loved ones can send cards or care items.

Managing the Progression

• Keep detailed records: Document challenging moments, safety concerns, and behavioral changes. The documentation helps validate difficult care decisions later and provides clarity during emotional moments.
• Accept help and share the load: Divide responsibilities with family or trusted friends when possible. Caregiving burnout puts you at risk for depression and affects your ability to provide good care.
• Find the right support team: This might include geriatricians, dementia specialists, therapists, and experienced care providers. Don’t settle for facilities or providers who don’t understand dementia.

Protecting Your Mental Health

• Lean on outside support: Join grief or dementia support groups, in person or online. The Alzheimer’s Association offers support groups throughout Austin and virtual options.
• Seek therapy for unresolved grief: Talking to a counselor can help you process guilt, sadness, and the constant change. Therapies like Acceptance and Commitment Therapy (ACT) can benefit caregivers who are learning to accept difficult emotions.
• Make space for small joys: Explore hobbies, travel, or moments that bring light even amid grief. This isn’t selfish—it’s necessary for your well-being and personal growth.

Staying Connected Through Change

• Stay connected, even as the relationship shifts: Your presence still matters, even when recognition fades. Touch, familiar voices, and calm energy can provide comfort.
• Be kind to yourself: This is hard. You’re allowed to feel grief, anger, exhaustion, and love—all at once. These contradictory feelings are normal in ambiguous loss.

When Professional Support Can Help

Consider therapy if you’re experiencing:

• Persistent guilt about care decisions
• Depression or anxiety that interferes with daily life
• Relationship strain with family members or partners
• Difficulty accepting the progression of the disease
• Thoughts of self-harm or feeling overwhelmed by responsibilities

Therapists trained in grief counseling understand that dementia caregiving involves unique challenges. They can help you develop coping strategies for guilt, practice self-compassion, and process the ongoing nature of this loss.

Memory loss and cognitive decline affect not just the person with the diagnosis, but entire families. Professional support can help you navigate this complex grieving process.

Finding Support in Austin

Austin families have access to several local resources:

• The Alzheimer’s Association Capital of Texas Chapter offers support groups and educational programs
• Central TX Lewy Body Dementia Support Group (this is one I became involved in that was helpful)

You’re Not Alone—Even If It Feels That Way

If you’re walking a similar path, I hope this gives you something to hold onto. You are not alone, and this kind of grief—the slow, confusing, painful kind—is real.

Support makes all the difference. Whether it’s your family, a therapist, or a support group, you deserve help. Please don’t wait to ask for it.

And please, don’t second-guess your love because you’re already tired, angry, or grieving. You’re doing your best in an impossible situation, and that, more than anything, is an act of love.

If you’re struggling with the unique grief of dementia caregiving, you don’t have to navigate this alone. Professional support can help you process complex emotions, develop coping strategies, and find peace with difficult decisions. We understand the weight of watching someone you love change, and we’re here to support you through this journey.