I kept a notebook through Lori's illness — not for anyone, just to survive the nights. I'm sharing one entry exactly the way it came out, because the tidy version of caregiving is a lie, and the lie is what leaves people feeling alone.
I have this lifetime of memories that she can no longer remember. She does not remember our pets, our Jeeps, our house. Our life at all. It's all gone.
But she is still here. Wanting my company. She does not know who I am but she still loves me. She is sad when I am not there.
I can't talk honestly to her anymore. I used to be able to talk with her about Alzheimer's and dying. But now it makes her scared or sad to learn, again, that she is dying slowly, so achingly slowly, it is horrible.
I want her to die. To be free of this disease, to not need me anymore, so that I am free from the trap of this disease.
I am trapped, and exhausted. And it is costing so much. I am going to be broke.
But she is already gone. The part of the brain that made her her has already died. There is less than a quarter of her now.
I grieve for her.
You can love them and want it to be over — in the same breath.
Look at everything packed into that one page. I want her to die, and one breath later, I grieve for her. Those don't cancel out. They sat together because I loved her and I was drowning. There's a name for this — anticipatory grief, ambivalent grief — and the most healing thing to understand is that the contradictions aren't proof you've failed. They're proof you were in an impossible place and still showing up.
Wanting them free of it — even wanting it over — was never the same as wanting to be rid of them. It is mercy. When someone you love is suffering with no way out, the wish for that suffering to end is one of the most loving things a heart can do. It only feels like guilt because no one ever told you it was allowed.
"She is sad when I am not there."
That's the line that haunted me. For a long time I read it as the scoreboard of my failure — her sadness was the size of my absence, so her sadness was my fault. That equation is false. By then, her sadness was the disease — the confusion, the fear. It rose and fell with her brain, not with the hours I logged at her side. I could have been there every waking minute and she'd still have had frightened afternoons, because that is what the illness does.
So here is the truer reading of that same sentence: I was still her safety. My face was still a comfort, even after she lost my name. That isn't evidence you're neglecting anyone. It's evidence that you are their refuge. You cannot be guilty of a disease.
If you recognize these feelings, hold onto this:
- You can love them and want it to be over, in the same hour. Both are true.
- Wanting their suffering to end is mercy, not betrayal.
- Their sadness is the disease talking — not a grade on your devotion.
- You are one person. Being their comfort doesn't mean being their everything, every minute.
- The grief that starts before the death has a name, and you're not wrong to feel it.
"I couldn't be everywhere. But I was, for as long as it mattered, the safest place she had. That has to be enough — because it was the truth."
You don't have to walk this road alone.
Day to Day Dementia is the thing I needed and couldn't find — straight, warm, practical company for people caring for someone through dementia. Stage-specific support, guided meditations, and plain-language help, built by someone who lived it. We're opening to founding members soon.
Need something right now? Listen to a free guided meditation →