Updated on December 20, 2025
Author’s Note: This story was shared anonymously by a reader. Writing this has been part of my own grieving process. I hope that sharing our family’s story might bring some meaning to a senseless loss and help others who are walking this same path.
My mother was diagnosed with frontotemporal dementia, which impacts personality, behavior, and language. While every person’s journey with dementia is unique, I’ve learned that the feelings of loss and the challenges of caregiving connect all of us going through this.
You’re sitting across from your parent at dinner when they ask the same question for the third time in ten minutes. A cold knot forms in your stomach. This isn’t just forgetfulness. You’re watching something fundamental about them slip away, right in front of you.
One of the most brutal truths about dementia caregiving: your grief doesn’t wait for a funeral. It starts the day dementia enters your life.
For our family, it began with small things we explained away. Missed appointments, stories told on a loop, little lapses in judgment. The confusion grew, and the small stuff became impossible to ignore. We faced the reality that the mom we knew was changing.
Grief That Starts Before Death
Grieving someone with dementia is a cruel paradox. Your parent’s body is still right there, but you’re losing them in pieces. You mourn the shared memories they no longer hold, the personality that defined them, and the future you thought you’d have together. This grief moves in and becomes a constant companion.
Psychologist Dr. Pauline Boss coined the term “ambiguous loss” to describe loss without closure or a clear endpoint. The person is physically present but psychologically or emotionally gone. Her research, developed through work with families of missing soldiers and later Alzheimer’s caregivers, shows this type of loss creates more stress than a clear death because your mind can’t fully process it.
You’re also dealing with anticipatory grief: mourning a death you know is coming. You’re processing a loss that is both happening now and still ahead of you.
The phrase “the long goodbye” captures the slow, painful reality of watching someone you love fade while they’re still sitting in front of you.
Making the Most of Early-Stage Dementia
Realizing our time was limited changed my priorities. In the early stages, when Mom still had moments of clarity, I visited monthly, even though I lived over 500 miles away. Previously, I’d made it home two or three times a year.
We prioritized holidays and Mother’s Day with large family gatherings. We hired a photographer to capture one of those final “good” days when Mom could still smile for the camera, recognize everyone, and participate in conversations. Those photos are now irreplaceable.
I wish someone had told me to record her voice telling stories, to ask questions about her childhood I’d never thought to ask. You assume you’ll have more time to capture these things. You won’t. The window closes faster than you expect.
When Dementia Behaviors Take Over
The middle stages brought the most complicated challenges. Mom developed intense paranoia. First, she became convinced our stepdad was having an affair. Later, her fear turned on one of my brothers. She accused him of letting strangers into her house to steal from her.
We repeated a mantra: This isn’t her. It’s the disease. But hearing hurtful accusations from your own mother takes a toll, regardless of intellectual understanding.
Her paranoia and confusion eventually put her in danger. She started wandering, leaving the house in severe anxiety. After she was found three blocks away at 2 AM in her nightgown, we made the decision to move her into a memory care facility.
She fought us. We felt like we were failing her. But we could no longer keep her safe at home.
Not all memory care facilities handle frontotemporal dementia well. We moved her twice before finding staff trained to handle her specific challenges: the paranoia, the frequent crying spells, the behavioral symptoms distinct to FTD. The first facility tried to medicate her into compliance. The second didn’t have staff trained in de-escalation techniques for paranoia. The third facility had a specialized dementia wing with staff who understood her disease progression.
Navigating Durable Power of Attorney Decisions
As her Durable Power of Attorney, I made decisions she would have opposed. I sold her home. I cleaned out a lifetime of belongings. I took over her finances. I waded through Medicaid paperwork when her savings ran out after eighteen months in memory care.
The practical tasks were manageable. The emotional weight was crushing. She didn’t understand why she had to leave her home or why we were managing her money. We were protecting her, but it felt like betrayal.
A Documentation System That Reduced Guilt
One of my most helpful tools was a simple spiral notebook. I logged incidents: dates she wandered, what triggered delusions, unsafe behaviors, and times she couldn’t complete basic tasks.
When guilt overwhelmed me about moving her from her home, I read those entries. The pattern was undeniable. She’d left the stove on four times in two weeks. She’d accused the neighbor of poisoning her food. She’d forgotten how to unlock her front door and called 911, believing she was trapped.
The log wasn’t about giving up. It was evidence that our care plan needed to change to keep her safe.
Building a Caregiver Support System
I couldn’t survive this alone. My brothers and partner divided practical tasks and provided emotional support during late-night phone calls and moments of despair.
I started individual therapy for a space to unpack grief and guilt without judgment. Local support groups through the Alzheimer’s Association connected me with caregivers who understood without explanation.
We created a private Facebook group for Mom’s friends to share memories and updates. People who’d known her for forty years could stay connected to her story and feel less helpless.
A dementia specialist recommended we hire a geriatric massage therapist. She visited Mom weekly, providing a gentle touch and calming presence. She also became our advocate, notifying us when Mom needed new clothing, when her skin seemed dry, or when the care team needed to address something. This cost $70 per session but provided peace of mind and consistent comfort for Mom.
Late-Stage Dementia and Changed Connection
Mom doesn’t know who we are now. Her face doesn’t light up when we walk in. Her words are gone. This stage brought a new, deeper layer of grief.
We still go. We sit with her, hold her hand, play Ella Fitzgerald and Frank Sinatra, and talk to her about our day. The connection is different, but we believe it’s still there.
Research suggests that familiar voices and gentle touch provide comfort to people in late-stage dementia, even without visible signs of response. I choose to believe that on some level, she knows we’re there.
Lessons from Our Caregiving Journey
- Grieve now, not later. You’re already experiencing profound loss. You don’t need permission to mourn while they’re still alive.
- Document the early stages aggressively. Record their voice. Video them telling stories. Ask questions about their life you’ve never asked. Write down family recipes they make from memory. The clarity window closes faster than you expect.
- Get a specific diagnosis beyond “dementia.” Frontotemporal dementia progresses differently from Alzheimer’s or Lewy body dementia. Knowing the particular type helps you anticipate symptoms, find appropriate resources, and understand what changes to expect.
- Keep incident logs for major decisions. When facing decisions about living situations, finances, or medical interventions, documentation reduces guilt. You’re not reacting emotionally; you’re responding to a pattern of evidence.
- Build multiple layers of support. Family, professional therapy, support groups, online forums, and hired help. Caregiver burnout doesn’t announce itself gradually. It hits suddenly after months of accumulated stress.
- Maintain connection through changing abilities. When conversation ends, physical presence still matters. Hand-holding, familiar music, gentle touch, and simple presence communicate love when words can’t.
- Expect conflicting emotions. You’ll feel angry, exhausted, sad, relieved, guilty, and loving, sometimes within the same hour. These contradictions are normal, not evidence of moral failure.
When to Seek Professional Support
Consider therapy if you’re experiencing:
- Persistent guilt over care decisions that keeps you awake or intrudes during daily activities
- Depression or anxiety symptoms that interfere with work, relationships, or basic functioning
- Physical symptoms of chronic stress (frequent illness, digestive issues, sleep problems)
- Relationship strain with partners or family members over caregiving decisions
- Thoughts of self-harm or wishing you could escape your life
A therapist specializing in grief and caregiver stress provides tools for managing complex emotions that well-meaning friends and family can’t offer.
Austin-Area Resources
- Alzheimer’s Association, Capital of Texas Chapter: Monthly support groups, educational workshops, 24-hour helpline (800-272-3900)
- AGE of Central Texas: Caregiver respite programs, adult day services, benefits counseling, support groups
- Central Texas Lewy Body Dementia Support Group: Monthly meetings specifically for families dealing with LBD’s unique challenges
Final Thoughts
This slow, confusing, painful grief is real. Finding people who understand without explanation makes the unbearable slightly more bearable.
Don’t let frustration, anger, or exhaustion make you second-guess your love. Showing up for your parent through impossible circumstances is love in its most profound form.
If you’re struggling with dementia caregiving grief, you don’t have to carry it alone. Firefly Therapy Austin works with caregivers navigating the complex emotions and difficult decisions this journey requires.