Grieving a Parent with Dementia
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The Long Goodbye: One Family’s Story of Dementia Caregiving

ByFirefly Therapy Austin

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.

If you’re caring for a loved one with dementia, you know this feeling. Millions of American families are navigating this same difficult road, and one of the most brutal 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 we explained away. Missed appointments, stories told on a loop, little lapses in judgment. The confusion grew, and soon the small stuff became impossible to ignore. We had to face 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 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 and then fade. It moves in and becomes a constant companion.

Psychologist Dr. Pauline Boss coined the term “ambiguous loss” to describe this exact experience. It’s a loss without closure or a clear endpoint. The person is physically present but psychologically or emotionally gone. Her research shows this kind of loss can actually be more stressful than an apparent death because your mind can’t fully process it.

You’re also dealing with what’s called anticipatory grief, mourning a death you know is coming. It’s exhausting because you’re trying to process a loss that is both happening now and still ahead of you.

People call it “the long goodbye,” and that phrase captures the slow, painful reality of watching someone you love fade while they’re still sitting right in front of you.

Making the Most of the Early Days

Realizing our time was limited changed everything. In the early stages, when Mom still had moments of clarity, I made a point of visiting her every month, even though I lived over 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. 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.

I wish someone had told me back then to record her voice telling stories, to ask her questions I never thought to ask. You think you’ll have more time to capture these things. You won’t.

When Behaviors Takes Over

The middle stages were the hardest. As 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. We had to repeat a mantra to ourselves: This isn’t her. It’s the disease. But hearing hurtful accusations from your own mother takes a toll, no matter how much you understand it intellectually.

Eventually, her paranoia and confusion put her in danger. She started wandering and would leave the house in 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. Some of us felt like we were failing her. But her safety had to come first, and we could no longer keep her safe at home.

We learned quickly that not all care homes are the same. We had to move her twice before finding a place with staff trained and compassionate enough to handle her specific challenges: the paranoia, the frequent crying spells, the behaviors that came with her particular type of dementia.

The Weight of Guilt

As her Durable Power of Attorney, I made 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 practical 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 protecting her, the guilt was crushing. It felt like betrayal.

This tangled mix of love, duty, and guilt complicates everything about this experience.

A Simple Tool That Helped

One of the most helpful things I did was keep a log in a simple 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 out of her home, 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 Support

I couldn’t have survived this alone. My brothers and my partner were my lifeline. We divided the practical tasks and were there for each other during 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 connected us with people who just got it.

We found creative ways to keep people in Mom’s life involved. We created a private Facebook group where her friends could share old memories and send well-wishes. It became an excellent place for people to stay connected to her story.

A dementia specialist also recommended a geriatric massage therapist who visited Mom weekly, providing gentle touch and a calming presence. She became our eyes and ears, letting us know when Mom needed new socks or if we should 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 suggests that a familiar voice and gentle touch can provide comfort to people in late-stage dementia, even when they can’t show it. I choose to believe that on some level, she knows we’re there.

What Helped Our Family

If you’re on this path, here are things that made a difference for us:

  • Let yourself grieve now. Your feelings are valid. You’re already experiencing a profound loss. You don’t have to wait for a funeral to mourn.
  • Capture what you can. In the early stages, take photos, record videos, and write down their stories. Ask questions. You’ll treasure these memories later.
  • Get a specific diagnosis. Knowing the type of dementia helps you anticipate what’s coming and find the right resources. Frontotemporal dementia progresses differently from Alzheimer’s or Lewy body dementia.
  • Keep a record. Documenting safety issues or significant changes helps you make complex decisions with more confidence and less guilt.
  • Build your support team. You cannot do this alone. Lean on family, find a support group, seek professional help. Caregiver burnout is real.
  • Stay connected however you can. Even when conversation is gone, your presence matters. Holding hands, playing music, or simply sitting quietly together is a powerful form of love.
  • Be kind to yourself. You will feel angry, exhausted, sad, and maybe even relieved, sometimes all at once. These conflicting feelings are normal. You’re doing the best you can in an impossible situation.

When to Seek Support

Consider reaching out to a therapist if you’re feeling persistent guilt over care decisions, symptoms of depression or anxiety that disrupt your life, overwhelmed to the point of exhaustion, or 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.

Finding Support in Austin

You are not alone in this, even when it feels like you are. This slow, confusing, painful kind of grief is real. Finding people who understand makes all the difference.

Don’t let the frustration, anger, or exhaustion make you second-guess your love. How you’re showing up for your parent in the middle of this impossible storm is the ultimate act of love.

If you’re struggling with the unique grief of dementia caregiving, you don’t have to carry it alone. Firefly Therapy Austin can help you navigate the complex emotions and find peace with the difficult decisions this journey requires.

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