People are talking about Emma Heming Willis’s interview with Diane Sawyer. Some are going to town on the contradictions — what she’s said before, what she’s done, what she’s doing now, and her role as an advocate for FTD. This is what I have to say about it, in no uncertain terms. Agree with me or not, this is my take. And it’s an informed one.
Not the Face of This
I can see both sides of this. And I’ll say plainly: if I could, I’d hire more help for my father. If I could, I wouldn’t be a solo family caregiver. If I had the resources, we’d have round-the-clock professionals. Most of us didn’t choose this setup — we adapted to it. For those of us already living with the person we care for, the dynamic is different. This was our home. To move them out is the same as placing them in a facility. If Emma had moved herself and her kids elsewhere, that would’ve been her leaving — taking the children and, in effect, abandoning him to others. That’s not judgment. That’s just the shape of the choice.
Emma had her husband placed. That is the reality of it. Not in a nursing home or care facility, but placed, elsewhere. It is the same exact thing.
There’s a fine line here, and most people miss it. Emma isn’t a family caregiver, and never was. She’s married to someone with FTD (Frontotemporal Dementia), a neurological disorder that affects behavior, speech, and personality. It’s not Alzheimer’s. It’s not a flower delivery service. Emma Heming Willis isn’t a family caregiver. She’s a spouse. That’s not semantics — it’s structure. It’s the reality. She’s done some caregiving, yes — but that doesn’t make her his caregiver. Wanting to be one, trying to be one, even saying she is one — none of that makes it so. Living with someone who has dementia and handling some of their needs doesn’t automatically make you their caregiver. Not in the way that word means something to those of us who live it.
Yes, she’s contradicted herself. That’s human. But she shouldn’t be the face of this. Not of FTD, not of dementia, not of caregiving. Her inconvenienced life doesn’t give her that authority. The deeds don’t weigh enough. She kept working, kept traveling, kept doing interviews. She had help — nurses, caregivers, support. And now she’s writing a book about it all, while not doing it. She moved him elsewhere. She showed her real self before the diagnosis, when she spoke about his coldness and how it made her feel. And that’s the thread: it’s mostly about how she feels. Not how he feels. Not the depth of what caregiving actually is.
And let’s not forget what she said before the diagnosis: “How can I remain in a marriage that doesn’t feel like what we had?” That wasn’t a passing thought. That was contemplation — of leaving, of redefining the relationship, of stepping away. After the diagnosis, yes, she overhauled their lives. She halted playdates, stopped sleepovers, said “I isolated our whole family, and that was by design.” But the emotional exit had already begun. That quote fills in a lot of blanks.
It tells me this wasn’t a caregiving pivot — it was a continuation of emotional distance, now reframed by circumstance. The diagnosis didn’t create the rupture. It gave it a name, a reason, and eventually, a public-facing narrative. But the core question — how can I stay in this marriage — was already there. And that matters.
If I could, I’d have others doing most of the work. But I’d still be here. I’d still have my own life. And I wouldn’t be writing about caregiving — because I wouldn’t be the one doing it. I’m not so self-oriented that I’d claim that role. My story would be about writing the checks, mopping up a spill or two. That would be my truth. I’d write about how I felt, yes — but not as a caregiver. Not as the face of anything. It would be about me. And the only reason anyone would care to read it is if I were famous, or married to someone who is.
That’s the truth of it. I don’t fault Emma for doing what she’s doing — except for writing a book she has no business writing. She’s famous because her husband is famous. And I don’t care what she has to tell us, because what she’ll say is: I hired caregivers, moved my husband elsewhere so the kids and I could remember him as he was. Which is just another way of saying: out of sight, out of mind, out of our hair. Back to playdates, no bedpans, no being reminded daily how sad it is our LO isn't who he used to be. Life isn’t as it used to be. We can feel sad, we are sad, but not sad enough to keep him at home or see him every day. See? I bought a house close to here, for him, so we didn’t place him in a facility. We care. We almost see him as often as his ex-wife and her kids. And how do I feel about it? Read the next chapter of my book.
Because that’s the privilege — not just having options, but having the space to feel about things more than you actually have to do them. It’s advocacy from the outside, from a curated distance, from a quiet home where you can sip tea and contemplate the plight of others down in the trenches — without ever having lived in them yourself.
