When Everyone Says Your Loved One With Dementia Seems Fine

“I talked to Dad and he seemed fine.”

“Dad looked great today.”

“Dad and I just had a wonderful conversation.”

When I was caring for my dad, my siblings would tell me things like this. And it used to make me so upset.

I gave a talk recently, and afterwards several people came up to tell me about their situations. One woman introduced me to her husband, who has Alzheimer’s disease. Her adult children say things like, “Dad seems fine,” or “Dad looks great.” And she had the same reaction I used to have. Triggered. Irritated. I recognized it immediately.

If your loved one with dementia seems fine to everyone but you, and you’re left feeling like people think you’re exaggerating, or being dramatic, or making things sound worse than they are, this is for you.

Why Do People With Dementia Seem Normal in Short Visits?

These comments can come from anybody who has brief interactions with your loved one:

• Family members. For me it was my siblings. For her it was her adult children.
• Doctors and other clinicians
• Friends

One of the most frustrating versions happens at appointments. You take your loved one to the doctor. The appointment is maybe sixteen minutes long. And the doctor or the nurse says, “Gosh, they look great. They’re doing great.”

And you’re thinking, “Oh my gosh. It took me four hours to get them ready, to get them out the door, to get here, to look decent enough for this appointment. You have no idea.”

Here’s what’s happening. Your loved one’s brain is running on the social habits they’ve had most of their life. And because nothing is obviously impaired, they look okay in a short appointment. They can default to, “Uh-huh, yeah, everything is fine.” They can smile. And in those moments, they can look pretty good.

Dementia is confusing. For short, brief periods of time, people can look totally normal. People can talk totally normally. For many, many people with dementia there are no obvious, glaring signs. That’s a misconception people don’t understand or realize. The only people who understand are the ones who have lived it.

You may have heard caregivers call this “showtiming.” It’s a term often used to describe those moments when someone with dementia seems to do surprisingly well during a visit or appointment, even though they may be struggling quite a bit at home.

When it’s a doctor who isn’t seeing what you see, these may help: what I wish every doctor understood about dementia caregiving, and how to prepare for the next doctor’s appointment.

When Family Thinks You’re Exaggerating: Your Two Options

When I talked with that woman after my presentation, I told her she basically has two options. You can talk to them about it. Or you can change what you’re thinking about their comments.

Option 1: How to tell family their comments hurt

The first option is totally possible. You can have a conversation with the person about how their comments feel to you.

For her, that meant talking to her adult children. She could say something like:

“Hey, I know when you say these things, in your viewpoint he really does seem okay in those moments, and he really does look fine. But I can’t help feeling like it makes my experience seem exaggerated. Like what I’m telling you might not be true.”

You can also make a request: “I’d appreciate it if you didn’t make comments like that.”

But this is only an option if the person you’re talking to is mature, if they care about you, and if you have a decent relationship. If you don’t have a decent relationship with them, or they don’t really seem to care about you, this is probably not the option you want to choose.

Another gentleman came up to me after the same presentation and told me about his brother-in-law. His brother-in-law doesn’t talk to anybody in the family. It’s his way or no way, and there’s been a lot of discord. That’s not a conversation I’d suggest he have.

Remember, Careblazer, sharing your experience is just that. Sharing. And a request is just a request. We have no control over other adults, so they can still do what they want to do.

It doesn’t mean that when we share our experience or make a request, everybody has to comply and change. That’s not the case.

But you absolutely can have that conversation. And if they care about you and are open to hearing your perspective, there’s a good chance they’ll try to be more thoughtful about what they say.

Option 2: How to stop feeling so irritated by their comments

The second option is the one I prefer. It’s the one I used when I was caring for my dad.

It starts with remembering that the only reason you feel triggered or irritated by their comments is because you have a thought about their comments.

If you’ve been following me for a while, you know this is the core of everything I teach. We only feel what we feel because of what we’re thinking. It’s not about what anybody is saying.

Take the comment, “Hey, Dad looks really great.”

That comment didn’t make her irritated. That comment is just a comment. It’s neutral.

What made her irritated is her thought about the comment:

• “They think I’m exaggerating when I tell them how their dad is doing.”
• “They have no idea what it’s really like.”
• “They think I’m being dramatic.”
• “They don’t believe me when I tell them everything.”

Those are the thoughts leading to her irritability.

So if she doesn’t want to feel so irritated, the only thing she can control in this situation is what she’s going to think about it. We can’t control other people, what they’ve already said, what they’ve already done. It’s done. It’s part of our reality now.

You get to decide how you want to show up, and what you want to think about it.

(If your family’s doubts go deeper than passing comments, and they don’t believe the dementia is real at all, I wrote about that here: when family doesn’t believe your loved one has dementia.)

Here’s what I did with my own siblings. All I was going to have left in my family were my brother and my sister. My mom had already died two years before, and my dad was dying. So keeping my relationship with my siblings was of the utmost importance.

I chose the thought: it makes total sense they think Dad is okay.

It makes total sense that they think he’s doing well, or isn’t so bad off, because in short visits, that’s what dementia can look like.

So even if you have the conversation, even if you ask them to stop making those comments, that’s fine. But also do the thought work. Make sure that in your mind you’re telling yourself something like:

“They’re not doing this to hurt me. They’re not doing this on purpose. In their viewpoint, it makes sense. They think he’s doing okay.”

There’s so much outside of our control in dementia care. The one thing always in your control is you. What you think, and what you do.

It doesn’t mean we show up perfectly. It doesn’t mean we do the best thing all the time. But it does mean we still have some power and authority. And you can use it whenever you want.