09/23/2026
From Dementia Diaries Unfiltered : A must read. 🧠
Before you live with dementia, you think you understand it.
It is often introduced to us as forgetfulness, but caregivers experience it as an entire person’s life, and their own life, slowly being rearranged around a disease. That’s much bigger than memory.
You think it’s forgetting where you put your keys.
Forgetting why you walked into a room.
Telling the same story twice.
Until it isn’t.
Because dementia isn’t just forgetting.
It’s forgetting you already got dressed.
Forgetting you need to use the bathroom when your body is telling you it’s time.
Forgetting where you put something five minutes ago—and becoming completely distressed because you can’t find it.
It’s repeating the same question 20 times.
It’s the behaviors. The confusion. The anxiety. The wandering. The resistance. The personality changes.
It’s watching someone slowly lose pieces of their independence… their ability to communicate… their ability to make decisions… and eventually, sometimes, even their sense of who they are.
And while all of that is happening to them, there is a caregiver standing beside them.
Making sure they’re safe.
Making sure they eat.
Making sure they take their medications.
Making the appointments.
Taking them to the appointments.
Talking to doctors.
Managing the finances.
Managing the house.
Managing the behaviors.
Trying to sleep.
Trying to work.
Trying to be a spouse, a daughter, a son, or a parent… while quietly becoming a full-time caregiver, whether you ever asked for that job or not.
And if you are fortunate enough to have the resources to move your loved one into memory care, the caregiving doesn’t magically end.
There’s the setup.
The adjustment.
The phone calls.
The visits.
The questions.
The guilt.
The constant wondering if they’re okay.
The guilt when you visit too little.
The guilt when you visit and leave.
The guilt when you’re exhausted.
The guilt when you want your own life back.
It is never-ending in a way that is almost impossible to explain to someone who hasn’t lived it.
The photo I’m sharing is of a sweet resident in our Memory Care.
She was surrounded by people who loved her, enjoying herself, and yet she was already so confused.
Photos captures something dementia often takes from us: the ability to simply enjoy a moment without constantly managing what comes next.
It also reminds me that behind every diagnosis is a whole person. A mother. A sister. An aunt. Someone who laughed, made memories, went out, and lived a full life long before dementia began changing everything.
And I want to say something today that I don’t say nearly enough:
To the caregivers who have put their lives on hold.
The husbands.
The wives.
The daughters.
The sons.
The ones who quit jobs.
The ones who work full-time and then become caregivers after hours.
The ones who sleep beside a loved one because they’re afraid they’ll wander.
The ones who manage everything from medications to meals to doctor’s appointments to bathing to bills.
The ones who sit in parking lots and cry before walking inside.
The ones who feel guilty no matter what they do.
The ones who are exhausted beyond words and somehow get up and do it all again tomorrow.
I see you.
I don’t know how you do it.
And I don’t think anyone who hasn’t lived it can truly understand what you do.
I have never had my mom living in my house 24/7. I’ve been fortunate enough to be able to work full-time and have the resources to get her care.
And even with those advantages, this has been one of the hardest things I’ve ever experienced.
So today, I’m sending love and strength to the caregivers.
The invisible & exhausted ones.
The ones who don’t get enough recognition for the life they’re carrying.
You are doing something incredibly hard for someone you love.
And I hope, with everything in me, that someday we find a way to stop this awful disease before another family has to live through it.
Until then…
Keep going.
One day.
One hour.
Sometimes one breath at a time.
We are all caregivers in some way. And none of us should have to walk this road alone 💜
If you’re caring for someone with dementia, tell me about your struggles and how you deal with them. What has helped you keep going? What do you wish other people understood?
