Updated on October 18, 2025
Author’s Notes: This story was shared anonymously by a reader.
Writing this has been part of my own grieving process. My hope is 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 are threads that connect all of us.
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 a senior moment. You are watching something fundamental about them slip away, right in front of you.
If you are caring for a loved one with dementia, you know this feeling. You are not alone. Millions of American families are navigating this difficult road. One of the hardest truths to grasp is that your grief doesn’t wait for a funeral. It starts the day dementia enters your life.
For our family, it began with small things that were easy to explain away. Missed appointments, stories told on a loop, little lapses in judgment. But the confusion grew, and soon the small things became big things. We had to face the reality that the mom we knew was changing.
Understanding Grief That Starts Before the End
Grieving someone with dementia is a cruel paradox. It’s the slow erosion of a person you love while their body is still right there. You lose them in pieces. You mourn the loss of shared memories they no longer hold, the personality that defined them, and the future you thought you’d have together. This grief doesn’t show up once. It creeps in and becomes a constant companion.
People call it “the long goodbye,” and it is a true, profound, and painful form of grief, even while your parent is still alive.
This feeling has a name: ambiguous loss. Pioneered by Dr. Pauline Boss, the term describes a loss that has no closure or clear endpoint. The person is physically present but psychologically or emotionally gone. Research shows this kind of loss can be even more stressful than a clear-cut death because your mind can’t fully process it. You are also dealing with anticipatory grief, mourning a death you know is coming. It’s emotionally exhausting because you’re trying to process a loss that is both happening now and is still to come.
Making the Most of the Early Days
Realizing our time was limited changed everything. In the earlier stages, when Mom still had moments of clarity, I prioritized visiting her every month, despite living 500 miles away.
We went all out for the holidays and Mother’s Day, organizing big family gatherings. We hired a photographer to capture one of those final “good” days, knowing that version of our family wouldn’t be together forever. Those photos are now priceless. It was our way of celebrating her while we still could, before the disease took more than it already had.
When the Disease’s Behaviors Take Over
The middle stages were the hardest. As my mom’s mind declined, she 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.
It was heartbreaking and draining. We had to repeat a mantra to ourselves over and over: This isn’t her. It’s the disease. But hearing hurtful accusations from your own mother takes a toll. It was a constant battle not to feel resentful.
Eventually, her paranoia and confusion put her in danger. She started wandering and would leave the house in a state of severe anxiety. After a few scary incidents, we made the hard decision to move her into a memory care facility. She fought us on it, and a part of us felt like we were failing her. But her safety and quality of life had to come first.
We quickly learned that not all care homes are the same. We had to move her twice before finding a place with a staff that had the training and compassion to handle her specific challenges, including paranoia, frequent crying spells, and other behaviors.
The Weight of Guilt and Responsibility
As her Durable Power of Attorney, I was forced to make decisions she would have disagreed with. I sold her home, cleaned out a lifetime of belongings, took over her finances, and waded through mountains of Medicaid paperwork when her money ran out.
The list of tasks felt endless, but the emotional burden was heavier. She didn’t understand why she had to leave her home or why we were taking control. Even though we knew we were doing the right thing to protect her, the guilt was crushing. It felt like a betrayal. This tangled mix of love, duty, and guilt complicates this experience.
A Lifeline We Created for Ourselves
One of the most helpful things I did was keep a simple log. In a notebook, I jotted down incidents when she wandered, her delusions, or other safety concerns.
This log became our anchor. When guilt washed over me for moving her, I could read those notes and see the clear, undeniable reasons we had to act. It wasn’t about giving up on her; it was about adjusting our care so we could keep her safe and still show up for her with love.
Building a Circle of Support
I couldn’t have survived this alone. My brothers and my partner were my lifeline. We divided the practical tasks and, more importantly, we were there for each other’s late-night phone calls and moments of despair.
I also started therapy to have a space just for me, where I could unpack the grief and guilt without judgment. Local support groups and online forums were also a huge help, connecting us with people who just got it. You quickly learn that asking for help is a sign of strength, not weakness.
We also found creative ways to keep people in Mom’s life involved. We created a private Facebook group and I logged into her account to post about it, so her friends could join. It became a wonderful place for people to share old memories and send her well wishes.
A dementia specialist also recommended a geriatric massage therapist. She visited Mom weekly, providing gentle touch and a calming presence. She became our eyes and ears on the ground, letting us know when Mom needed new socks or if we needed to check in with the care team. It was an unexpected source of comfort for all of us.
When Connection Changes
These days, Mom doesn’t know who we are. Her face doesn’t light up when we walk in. Her words are gone. This stage has brought a new, deeper layer of grief.
But we still go. We sit with her, hold her hand, play her favorite old music, and talk to her about our day. The connection is different now, but we believe it’s still there. She is still our mom. Research seems to back this up, showing that a familiar voice and gentle touch can still provide comfort to people in late-stage dementia, even if they can’t show it.
Practical Steps for Your Own Journey
If you’re on this path, here are a few things our family learned along the way.
- Give Yourself Permission to Grieve Now. Your feelings are valid. You are already experiencing a profound loss. Acknowledging your grief is the first step toward coping with it.
- Capture the Good Moments. In the early stages, be intentional. Take photos, record videos, write down their stories. These memories will become a comfort later on.
- Get a Specific Diagnosis. Knowing the type of dementia (Alzheimer’s, FTD, Lewy body) helps you anticipate future challenges and find the right resources.
- Keep a Simple Record. Documenting safety issues or significant behavioral changes can help you make hard decisions with more confidence and less guilt down the road.
- Build Your Support Team. You cannot do this alone. Lean on family, find a support group, and seek professional help. Caregiver burnout is real and will only make a hard situation harder.
- Find Ways to Stay Connected. Even when conversation is gone, your presence matters. Holding a hand, playing music, or just sitting quietly together is a powerful form of love.
- Be Radically Kind to Yourself. You will feel angry, exhausted, sad, and maybe even relieved, sometimes all at once. These conflicting feelings are a normal part of this journey. You are doing the best you can in an impossible situation.
When Professional Support Can Help
Consider reaching out to a therapist if you’re feeling:
- Burdened by persistent guilt over care decisions.
- Symptoms of depression or anxiety that disrupt your life.
- Overwhelmed to the point of exhaustion.
- Strain in your relationships with your partner or other family members.
A therapist who understands grief and caregiver stress can provide tools to manage these complex emotions and help you find a way through.
Finding Support in Austin
- Alzheimer’s Association, Capital of Texas Chapter: Offers local support groups and educational resources.
- AGE of Central Texas: Provides caregiver support, education, and resources.
- Central TX Lewy Body Dementia Support Group: A valuable resource for families dealing with this specific diagnosis.
You are not alone in this, even when it feels like you are. This slow, confusing, and painful kind of grief is real. Finding people who understand can make all the difference.
And please, don’t ever let the frustration, anger, or exhaustion make you second-guess your love. How you are showing up for your parent, in the middle of this impossible storm, is the ultimate act of love.
If you are struggling with the unique grief of dementia caregiving, you don’t have to carry it all by yourself. Firefly Therapy Austin is here to help navigate the complex emotions and find peace with the difficult decisions this journey requires.