Updated on April 1, 2026
Author’s Note: This story was shared anonymously by a reader. Writing this has been part of my own grieving process. I hope sharing our family’s story brings some meaning to a senseless loss and helps others walking this same path.
My mother was diagnosed with frontotemporal dementia, which impacts personality, behavior, and language. Every person’s journey with dementia is unique, but 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.
How Do You Grieve Someone Who’s Still Alive?
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” gets used a lot, but it doesn’t capture the whole picture. It’s not one long farewell. It’s dozens of small losses strung together over years — the day they stop recognizing your voice, the afternoon they can’t remember your name, the moment you realize the person sitting across from you isn’t the parent who raised you.
What Should You Do in 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.
What I’d tell someone in the early stages right now: Get a video camera out this week. Record them telling their favorite story. Ask about their parents, their first job, their wedding day. Write down family recipes they make from memory. You think you’ll remember these details. You won’t — not the way their voice sounds when they tell them.
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.
Frontotemporal dementia makes this worse than what most Alzheimer’s caregivers describe. FTD attacks personality and behavior first — the person you knew can become someone unrecognizable before they lose a single memory. The paranoia, impulsivity, and emotional flatness aren’t side effects. They’re the primary symptoms.
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.
Finding the Right Memory Care Facility for FTD
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.
If you’re evaluating memory care for FTD, ask these questions:
- Does the staff have specific training in frontotemporal dementia, not just Alzheimer’s?
- How do they handle paranoia and agitation — behavioral techniques or sedation?
- What’s the staff-to-resident ratio in the memory care wing?
- Can they describe how FTD differs from Alzheimer’s in terms of care needs?
The answers will tell you quickly whether they understand what your family member actually needs.
The Financial and Legal Weight of Power of Attorney
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.
That timeline surprised us. Eighteen months. We thought her savings would last much longer, but memory care costs in most parts of the country run $5,000-$8,000 per month, and specialized dementia care can exceed that. Nobody in our family had planned for that kind of burn rate.
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 My 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. If you’re facing a similar decision, start writing things down now. When you’re lying awake at 3 AM questioning whether you did the right thing, that notebook answers back with facts instead of guilt.
Building a Support System That Actually Works
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. It also meant I didn’t have to repeat the same painful updates in twenty separate phone calls.
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 Mom with peace of mind and a consistent, compassionate presence.
Connecting with Your Parent in Late-Stage Dementia
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 with late-stage dementia, even when there are no visible signs of response. I choose to believe that on some level, she knows we’re there.
If you’re in this stage and wondering whether visits still matter — they do. Not because your parent will remember you came. Because you will.
What I Wish I’d Known from the Start
- 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.
- Get a specific diagnosis beyond “dementia.” Frontotemporal dementia progresses differently from Alzheimer’s or Lewy body dementia. The type matters for finding the right facility, anticipating symptoms, and connecting with the right support groups. We wasted months in a general Alzheimer’s support group before finding FTD-specific resources.
- Keep incident logs for major decisions. When facing decisions about living situations, finances, or medical interventions, documentation cuts through guilt. You’re not reacting emotionally. You’re responding to a pattern.
- Build support before you need it. Family, professional therapy, support groups, and hired help. Caregiver burnout doesn’t announce itself gradually — it hits suddenly after months of accumulated stress.
- Your relationship with your parent will change. That doesn’t mean it ends. When conversation stops, physical presence still communicates love. Hand-holding, familiar music, gentle touch. These things matter even when you can’t see the response.
- Conflicting emotions are part of this. Angry, exhausted, sad, relieved, guilty, and loving — sometimes within the same hour. That’s not a moral failure. That’s what caregiving grief actually looks like.
When Caregiving Grief Needs Professional Support
Consider talking to a therapist if you’re experiencing:
- Persistent guilt over care decisions that keeps you up at night or intrudes during your day
- Depression or anxiety symptoms affecting your work, relationships, or basic functioning
- Physical symptoms of chronic stress — frequent illness, digestive issues, sleep problems
- Relationship strain with your partner or siblings over caregiving decisions
- Feeling like you want to escape your life entirely
A therapist specializing in grief and caregiver stress provides tools for managing these emotions that well-meaning friends and family can’t offer. You don’t have to be in crisis to benefit from it — I started therapy when I realized I was snapping at my partner over nothing, and it changed how I moved through the rest of this process.
Austin-Area Dementia Caregiver Resources
- Alzheimer’s Association, Capital of Texas Chapter: Monthly support groups, educational workshops, individualized care planning with master’s-level clinicians, and a 24-hour helpline (800-272-3900)
- Alzheimer’s Texas: Austin-based nonprofit offering a 24/7 helpline (512-241-0420), free caregiver support groups, care consultations, and a community-based respite program providing 4 hours of free care per week for people in early-to-mid stage dementia
- AGE of Central Texas: Caregiver respite through Thrive Social & Wellness Centers, Memory Connections programs, weekly caregiver support groups (Fridays, 10:30 AM via Zoom), and a Resource Center at 512-600-9275
- Association for Frontotemporal Degeneration (AFTD): FTD-specific caregiver support group meets monthly (2nd Tuesday, 1:00-3:00 PM) at AGE of Central Texas, 3710 Cedar St, Austin. National AFTD helpline: 866-507-7222
- UT Health Austin — Dementia Caregiver Counseling Program: Individual counseling sessions with licensed clinical social workers, in-person or telehealth. Covers behavior management, disease progression, family communication, and legal/financial planning. Accepts most insurance. Call 1-833-UT-CARES (1-833-882-2737)
- CAPCOG Area Agency on Aging: Free respite and support services for dementia caregivers, including a full caregiving assessment and long-range care planning. Screening phone: 512-916-6062
You Don’t Have to Carry This Alone
This slow, confusing, painful grief is real. And most people around you won’t fully understand it, because your loved one is still here. Finding people who get it without explanation — whether that’s a support group, a therapist, or another caregiver — makes the unbearable slightly more bearable.
If the weight of caregiving decisions is keeping you up at night, or if the grief has started affecting how you show up in the rest of your life, talking to someone who understands can help. Firefly Therapy Austin works with caregivers facing the complex emotions and impossible decisions this journey brings.