“You never know what’s out there,” said my dad as he pointed at the dark night sky. Shooting stars, wonder, and hope filled both the sky and our hearts.
Since I was a little girl, this was a common occurrence while we went camping. My dad and I, in the middle of the woods, wondering about space. Necks kinked upward, noses pointing to the cosmos, we both felt the sense of shared wonder and connection.
Fast forward several years, after my dad had died, I found myself camping alone and continuing the tradition of looking up into the sky. Only this time, he wasn’t there to remind me that I never know what’s out there. My heart was aching. Stargazing wasn’t the same without his shared curiosity. In this space, I learned that it was never about the stars or the sky. It was our shared connection that made it special.
My dad had an invisible illness which he kept hidden for as long as he could. Watching the slow, drawn-out decline of his cognition was unbearable. Seeing and feeling his personality change, right in front of my eyes, was agony. The more time that went by, the further away he went. How can I be physically close to my dad, yet feel like I am with a stranger? Glimpses of his personality would surface, which I would grip so tightly in fear I would never get a glimpse again. My dad, my person, had become unrecognizable.
Shortly after his passing, I remember going back to work as a caregiver for Alzheimer’s/Dementia, which I had been doing since I was 16 years old. In this space, I witnessed others experience the long goodbye. While each person’s experience is unique, there are common themes that we may grapple with. It’s…
The agony.
Their heart is still beating, yet I am grieving my person.
Each day it’s you, but not you.
It’s so surreal.
I miss them.
Please come back.
My heart aches.
I am gripping the glimpses of their personality.
The slow decline.
Please make it stop…
Limbo…
Longing…
Losing them.
As I was helping a man with Alzheimer’s eat his lunch, his wife came and sat at the table with us. She looked at me, tears welling up in her eyes. Then she looked at her husband, and said, “I just never know what’s going on in there.” At that moment, I looked down, smirked, and said, “You know, dad, we may never know what’s going on inside there, either.”
Because I know this loss very intimately, professionally and personally, I deeply appreciate how much it means to have a time to connect, remember and share with others who have been on a similar journey. The upcoming Summer Remembrance for Alzheimer’s and Dementia is a space to remember and honor your person. Whatever your journey and your person’s journey looked like, you are invited to attend the space to memorialize them. To some, a long goodbye or having a loved one with Alzheimer’s and Dementia feels unfamiliar and even foreign. We welcome you to join us in a space where those of us who feel all-too-familiar can connect, share, and hold space for one another. I hope to see you there.
Written by: Amy Offerle
June, 2025
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Summer Remembrance for Alzheimer’s & Dementia Loss – Virtual – June 25, 2025; register here: https://heartlightcenter.org/events/dementia-loss-remembrance-virtual-june2025/
June is Alzheimer’s & Brain Awareness Month, and we invite you to join us for a special virtual gathering for those who are grieving losses to Alzheimer’s and other dementias to help process your grief and memorialize your person. Anyone who has experienced a loss to Alzheimer’s or other dementias, we welcome you to join us for a time of discussion, sharing and memory making, and engaging in an intimate ceremony of remembrance.
Suggested Donation: $20 Registration is required.
upcoming dates: Wed. June 25, 2025
time: 3-4:30pm PT/ 4-5:30pm MST/ 5-6:30pm CT/ 6-7:30pm EST