🎵 “Wish You Were Here” – EOA When You Realize They’re Already Gone (Pink Floyd)
- jessica97150
- May 26
- 4 min read
Updated: May 28
There’s something no one tells you about this stage.
When you’re with your spouse every day…
👉 You don’t always see the decline clearly
It’s slow.
It’s subtle.
It blends into your routine.
Until…
👉 You step outside your normal life
And then it hits you all at once.
💬 Disclaimer
I’m not a doctor—just a caregiver sharing real-life experience. This is not medical advice. Every journey is different. This one is about Alzheimer's and losing bits and pieces.
💔 The Trip That Showed Me Everything
This past week, I had a family emergency.
My dad—who has been declining—took another turn, and hospice was called.
So I flew back from Nashville.
I had part-time care in place for my husband, and his son stepped in to help.
I thought I had it handled.
What I Came Home To
In just two days…
👉 He ate all 7 prepped meals
👉 And a dozen hard-boiled eggs
This is a man who:
Has always been thin
Has always been healthy
Has never overeaten
And now?
👉 He just eats
👉 And eats
👉 And forgets he ate
🧠 That Was My Wake-Up Call
That’s when I realized:
👉 We had moved DEEP into Stage 5
Not slowly.
Not gently.
👉 But clearly
🧠 What Stage 5 ACTUALLY Is (Not the Google Version)
Stage 5 is called:
👉 Moderately Severe Cognitive Decline
And this is where:
👉 A person can no longer live safely on their own (Fisher Alzheimer's Research Center)
⚠️ What the “Clinical” World Says
At this stage, people often:
Have significant confusion (alztennessee.org)
Forget basic personal details (address, phone number) (resources.amedisys.com)
Struggle with daily tasks like dressing (alztennessee.org)
Show poor judgment and decision-making (AdventHealth)
Need help with everyday life
👉 They may still recognize you
👉 But they can’t manage life independently
💔 What That Looks Like In Real Life
Let me translate that…
Because it doesn’t look like a checklist.
It looks like this:
Not knowing what to wear inside or outside of the house.
Wearing winter clothes in the heat
Not knowing when to come inside from sun, and getting sunburn
Struggling with the shower dial- not understanding the hot and cold water (turn down your water heater to rpevent burns)
Mixing up shampoo and body wash (Buy and ALL in ONE)
👉 Things that used to be automatic… are gone
🧠 The Part That Hit Me Hardest
It’s not just memory.
👉 It’s common sense
The brain loses the ability to:
Sequence steps
Recognize consequences
Self-regulate
👉 That’s why the eating happened
He wasn’t hungry.
👉 He didn’t know he already ate
🧍♂️ The Shift No One Prepares You For
You realize:
👉 You’re not living with your partner anymore in the same way
You’re now caring for someone who functions more like:
👉 A child around 8 or 9
And that is a brutal realization.
😡 There’s More (That You May Already Be Seeing)
Stage 5 can also bring:
Mood swings
Anxiety
Irritability
Confusion about time/place (The CareSide)
Repeating behaviors
Wandering tendencies (The Good Care Group)
Using the bathroom at in appropriate times and places (front lawn mid day, near the bushes by the pool, in the hallway by the bedroom doo)
🌙 And Yes… This Is Where Sundowning Shows Up (Sundown has it's own blog)
Late afternoons and evenings:
👉 More confusion
👉 More agitation
👉 More restlessness
Because:
👉 The brain is tired
🚗 The Moment That Broke Me
We were driving home.
13 hours.
We’ve always loved music.
So we put on his favorite songs.
And we’re jamming.
Just like always.
Until…
👉 I realized
He didn’t know a single word.
Not one.
He was:
Singing nonsense
Smiling while singing this
Completely unaware
💥 That Was My Moment
I broke.
Quietly.
👉 Sitting there
👉 Crying silently
While he kept singing
Because in that moment…
👉 I realized how much I miss my husband
💔 The Kind of Missing No One Explains
He’s here.
He’s alive.
He’s sitting next to me.
But…
👉 The version of him I knew is fading
My best friend of 23 years gone.
💭 And He Didn’t Even Notice
That might be the hardest part.
👉 He didn’t see it
👉 He didn’t feel it
👉 He didn’t know I was breaking
💡 What I Want You To Know
If you’re starting to see this stage:
👉 You are not imagining it
👉 You are not overreacting
This stage is:
👉 Where independence quietly disappears
💛 Final Thought
“How I wish… how I wish you were here…”
Because that’s exactly it.
👉 He is here
But not in the way he used to be
💬 Disclaimer
💬 Disclaimer: I’m not a doctor, lawyer, therapist, or expert—just a wife trying to figure this out one day at a time. Everything shared here is based on our experience and things that have helped us along the way. Take what helps, leave what doesn’t, and always check with professionals when needed.
I also use AI to help clean up my writing, organize my thoughts, and pull together resources because honestly… caregiver brains are tired too. If something here helps another family feel a little less alone, then it’s worth sharing.
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