I know this grief all too well. I lived it. I was the caregiver for my late husband—my soul mate, my best friend. Together, we built an architectural design practice for healthcare facilities, dedicating over 25 years to creating healing environments. Our work was not just a profession; it was a shared passion, a life we built side by side. But Alzheimer’s didn’t just take his memories; it stole the life we had built together, piece by piece, until I was left mourning a man who was still physically present but slipping away before my eyes. This is grieving in real time known as dementia and the phantom Limb effect.
The Phantom Limb of the Mind
They say that when someone loses a limb, they can still feel it—an ache, a tingling sensation, a ghostly presence of what once was. I felt that same eerie sensation as I cared for my husband. He was still right there beside me, yet gone in ways I couldn’t comprehend. The man who knew my secrets, who could finish my sentences, who made me laugh until I cried—he faded away, little by little.
I found myself grieving in real time, mourning the loss of his quick wit, his deep conversations, and the way he used to look at me with complete recognition and love. Some days, he remembered my name. Other days, I was just another kind face. The emotional whiplash was unbearable at times.
The Unique Pain of Grieving in Real Time
Unlike sudden loss, which delivers a painful but clear break, dementia grief is ongoing and ambiguous. It felt like I was drowning in an ocean of loss with no shore in sight. Each day, I grieved a new loss—his ability to tell a joke, his love for a favorite song, his way of reaching for my hand without thinking. It was a long, drawn-out farewell that never felt complete.
Society understands traditional grief—people send condolences, offer comfort, and acknowledge the loss. But when you’re grieving someone who is still alive, there are no rituals, no condolences, no clear path forward. It’s a lonely kind of sorrow, one that’s hard to put into words.
Navigating the Emotional Terrain
So how did I survive this phantom grief?
1. I Acknowledged the Losses
I gave myself permission to grieve—not just at the end, but throughout the journey. Every time Alzheimer’s took something from my husband, I let myself feel the weight of that loss. Pretending it wasn’t happening only made it harder.
2. I Sought Support from Those Who Understood
I found solace in talking to other caregivers and professionals who had walked this road. They understood the heartbreak of watching someone disappear in slow motion. Support groups, became my lifeline when I felt like no one else could possibly understand.
3. I Cherished the Present Moments
Dementia takes so much, but every now and then, it gives something back—a fleeting moment of clarity, a smile, a laugh, a squeeze of the hand. I learned to hold onto those moments as tightly as I could. Even when he could no longer say my name, there were days when he would look at me with love, and that was enough.
4. I Redefined Our Relationship
Instead of focusing only on what was lost, I found new ways to connect. When words failed, music still reached him. When he couldn’t follow a conversation, we could still sit together and feel the warmth of each other’s presence. Love remained, even when memory faded.
5. I Journaled My Way Through
Writing became my sanctuary during the most challenging times. Each day, I poured my grief, cherished memories, and moments of joy into my journal. It was a place where I could freely express my emotions, reflect on our experiences, and hold onto the essence of our life together, even as it gradually slipped away. My journal became my emotional anchor, offering clarity and comfort when everything else felt overwhelming. As the pages filled, my writing evolved into something more — a way to process the pain, celebrate the small victories, and find meaning in the chaos. This journey through journaling ultimately led me to write Taming the Chaos of Dementia, where I share our stories, the challenges we faced, and the successes that gave me hope. In sharing our experiences, I hope to help others find solace and strength in their own caregiving journeys.
6. I Leaned on Our Shared Faith
Faith gave me the strength to accept the things I could not change and to make the most of the time we had left. It reminded me that love transcends memory, and that even in loss, there is meaning.
A Grief That Deserves Recognition
This kind of grief is real. It is deep. It is painful. But understanding it—naming it—helped me find my way through. If you are a caregiver feeling this same sorrow, please know that you are not alone. The loss may be slow, but your love remains. Even as my husband drifted further away from me, our love endured, and in the end, that is what I hold onto.
If you are feeling this type of grief, I see you. I understand. And I promise—you are not alone.
Action Item: Finding Your Own Path Through Grief
Take a moment today to acknowledge your own grief. Write down one memory that brings you joy and one small way you can honor your loved one in the present moment. Whether it's playing their favorite song, holding their hand, or simply speaking their name aloud, these small acts keep love alive even in the face of loss.
Let’s Keep the Conversation Going
Have you or a loved one faced stigma around an Alzheimer’s or dementia diagnosis? How did it impact your journey? Share your thoughts in the comments—I’d love to hear from you. And if this post resonated with you, please share it with someone who might need to hear it.
Barbara J. Huelat
Caregiver, Healthcare Design Specialist, Speaker & AuthorChampioning compassionate care and innovative solutions for dementia.
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Barbara Huelat, a dynamic force in healthcare design, author, and speaker, shares her expertise in her latest publication, Taming the Chaos of Dementia. With her profound understanding and passion for the subject, she offers practical wisdom on navigating dementia care with empathy and skill, transforming this complex challenge into an empowering journey.
Explore Barbara's insights at barbarahuelat.com or call 703-795-1743 for an enriching experience.
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