🧠 Refuel #2: The Longest Goodbye — Alzheimer’s and the Disappearing Loved One
Opening Reflection
Alzheimer’s is called the long goodbye for a reason.
It doesn’t take your loved one all at once — it takes them in fragments. A word here. A memory there. A familiar spark that fades mid-sentence. Sadly, BOTH of my parents had this dreadful disease.
You start by correcting them gently.
Then one day, you stop correcting — because you can see it just makes it worse. They get mad, and you get impatient.
And then, you and your affected loved one get sad. They know they can’t remember, and now they know YOU do, too.
What It Feels Like to Lose Someone in Pieces
No one prepares you for this kind of loss.
It’s not loud. It’s not final. It’s slow and fast at the same time, looping, and cruelly unpredictable. There are noticeable changes from year to year.
One day, they will know your name. The next, they look right through you.
My mother had terrible sundowners, and every late afternoon until her bedtime, she was convinced I was a baby fending for myself out in the mean streets. And it really stressed her out.
You keep showing up anyway — smiling, feeding, cleaning, repeating, loving.
But inside, you’re breaking, wondering who you’ll be when there’s nothing left to take care of.
💔 Alzheimer’s doesn’t just erase memory — it rewrites identity. Yours and theirs. And it is approximately 15 years. Yes. That’s the long part…you have to pay attention
What Helps (When Nothing Really Does)
Live in their world.
If they think it’s 1972, then it’s 1972. Correcting them creates panic and sometimes anger. Just go along with it.Simplify your communication.
Use short sentences. One question at a time. Eye contact. Touch. Tone matters more than words. Try to sound happy even when you’re not - they mirror your mood.Create anchors.
Photos, music, familiar scents — these reach deeper than logic. They help reawaken emotional memory even when cognitive memory is gone.Prepare for personality changes.
The person you love may become unrecognizable at times. It’s okay to grieve while they’re still alive. Give yourself some runway - this is super hard work even if you’re not the full-time caregiver.Find community.
Support groups (in-person or online) are lifelines. They understand the exhaustion and guilt that others can’t. You don’t have to carry this alone. I was working full time so finding a support group of strangers didn’t appeal to me. But build a group of friends you can call or go to dinner with - it will save your sanity.
Faith + Gasoline Moment
Sometimes faith isn’t loud — it’s a whisper that says, keep showing up anyway.
Love becomes less about being remembered and more about being present.
Even in confusion, there’s still connection.
Even in forgetting, there’s still love. ❤️🩹
Closing Thought
You may feel like you’re standing in two worlds — one where your parent or loved one still breathes, and another where they’ve already gone.
But you are doing sacred work: tending the space between memory and mercy.
Don’t rush the goodbye.
Let it unfold softly, day by day, breath by breath.
My mom and I had laughs all the way up until the end. Be present. Once they go, they’re gone forever.
💙 You are the memory keeper—the anchor in the storm.
💙 A Note from Judith
As Refuel comes to a close this December, I want to thank you for walking this journey with me. This newsletter began as a love letter to caregivers — a space for honesty, faith, and fuel when the road got hard. And though the series ends here, the mission doesn’t. The newsletters will remain available, and I hope this saves people the hours and hours of Google searches I had to make. Thank you for letting me speak to your heart. ❤️🩹
