With dementia, reality sometimes hurts more than it helps

Editor’s Note: Last year, Paul Solman reported on artisanal entrepreneurs — individuals carving out their own careers, and, if you believe Harvard economist Lawrence Katz, saving the middle class along with them. Paul met the typical hipsters making their own chocolate and popsicles in Brooklyn. And then he met Kerry Mills, who got so creative with her career, she created a new profession. Mills is a dementia coach. “There’s a ton of jobs out there that you just have to go figure it out,” she told Making Sen$e last year. “You have to kind of craft it in your community.”

And that she did. After studying business at Arizona State and returning home to New York, she felt a religious calling to work with older people in nursing homes, but was bummed by what she saw. So she founded Engaging Alzheimer’s, allowing her to train nursing home staff and private clients who are caring for their own loved ones.

You can learn more about Mills’ career trajectory in our Making Sen$e report (watch at the bottom of this post). After chatting about business with Mills, Paul shared some of his own frustrations as a caretaker, which didn’t make it into our report. Both of Paul’s parents lived into their 90s — his father, painter Joseph Solman, to 99 — and they both experienced bouts of confusion and dementia.

What follows is the edited transcript of Paul and Mills’ deeply moving conversation. While the stories here are personal to Paul, they’ll be familiar to many Americans who’ve cared for aging parents. We hope that caretakers will benefit from the very helpful advice Paul (and yours truly) wished they had known when caring for parents (and grandparents) with dementia.

Tomorrow, we’ll be publishing a separate post with Mills’ tips for approaching dementia care.

— Simone Pathe, Making Sen$e Editor

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Paul Solman: Listening to you, I was thinking about my own parents. My mother had Parkinson’s at 86 – died at 90. And I remember my mother, when she was already well into a case of Parkinson’s, said to me: “Take me home.”

And I said, “But we are home. We’re at the apartment we’ve lived in since 1952.”

“No, no, no. Just take me home.”

So I go, “No. Look out the window – what street is it? Tenth Street. What avenue? Second Avenue. Where do we live? Tenth Street and 2nd Avenue.”

All I did was try to convince her.

Kerry Mills: For years, we thought our job was to get them on the same page. We called it reality orientation. And now from what we know about the disease, the part of your brain that tells you where your home is is in between your frontal lobe and your parietal lobe – different parts of it. So when that’s broken, what good is it trying to reason with me – I can’t reason because my frontal lobe is broken and my parietal lobe is my GPS, if you will, telling me where everything is. Those are both mixed up. My amygdala, which is my emotional part of my brain, is working. And so you’re trying to use these, which are totally broken and this part that’s working – you’re irritating it and you’re frustrating me and you’re arguing with me. That’s why eventually they get frustrated or they throw something, or they smack you. It’s because that’s the part that’s working, but the impulse control to say ‘don’t hit him’ isn’t working.

So yes, now that we understand more about what’s going on in the brain, and we can look at these scans, and there are so many more people getting it, we’re able to really be a lot more focused. Now we’re realizing: So no, we shouldn’t be arguing with them.

PS: What should I have said to my mother?

KM: I would have said: So, mom, what are you going to do at home? What do you need to go there for? She’ll probably tell you the kids are there because her timeline is a bit mixed up, so she thinks it’s way back in the past, and so she’s thinking, “Oh my goodness, what kind of mother am I if I don’t take care of my three young children?”

She’s thinking, “I’ve got to get there, and you’re talking to me about street signs. I’m not even understanding what you’re talking about because all I know is that if I’m a good mother, I take care of my family.” And so by saying: Mom, why do you need to get there, you find out what she needs.

So once we know that then we can turn around and say: “You know what, mom? Your kids all love you so much for how well you’ve taken care of them. They’re all OK right now – nobody’s home.” But you have to find out what’s in their head so that you know how to respond.

PS: My father lived until 99. One day he thought that his girlfriend was my mother and we tussled and tussled and tussled – she was very offended. But we finally convinced him. Took hours. So were we doing the wrong thing? We did convince him.

KM: Sure, sure. So congratulations.

PS: It felt like a tremendous victory.

KM: But what difference does it make? Because he’s happy to have this woman, no matter who she is, and so if the next day he’s back at it, thinking it’s your mom again, then don’t put yourself through that. It doesn’t matter to him and then it’s a matter of explaining to the girlfriend, “Don’t take it personally. Our mother was a good woman to him.” He’s not throwing her out – whatever positive traits your mom had obviously his girlfriend had, and so he’s just getting their names mixed up.

PS: It wasn’t just names.

KM: Sounds like it was identity. But as you get all these things mixed up, to them it’s just not as important.

PS: What about when he became inappropriate and started telling me things about his past and past girlfriends that was…

KM: You wish you didn’t know.

PS: Oh my God – ‘wish I didn’t’ does not do justice to what I was experiencing.

KM: I understand, yeah. So one thing you could say is, “Dad, it makes me uncomfortable. You know, I’d rather not hear this.” If he doesn’t respond to that, say: “Dad, you know what – I’ve got to go to the bathroom. I’ll be back.” Just leave the situation. Because you can’t convince them not to do something. You have to change what they’re thinking. So if he’s focused on things he once did and you run to the bathroom and you come back and you have food and you say, “So, Dad, ready for lunch?” You know, his mind is now going to go onto lunch and you’re going to help him not talk about that stuff by focusing him on something else.

PS: Ok, so what about this one: this is right before the end and it’s in the middle of the night and now he wants to go home to Jamaica, Long Island, where he hasn’t lived in, by that time, 80 years, more, 90 years almost. And he keeps calling me a bum for not taking him there.

KM: So what were you saying to him when he was asking?

PS: Now I’m embarrassed to tell you, but I said, “Dad, they’re not there. Your parents aren’t alive anymore. I can’t take you – it’s the middle of the night. I can’t do it.” And by the end, he was screaming at me and calling me a bum, which he never, ever did and I was screaming at him. It was horrible.

KM: I’m sorry, because it’s so frustrating. But if someone wakes during the middle of the night, you just say: “You know what? The car’s broken right now and the mechanic will fix it in the morning and we’ll go.”

PS: Really?

KM: Yeah. Listen: Why in the world is a 99-year-old-man waking up, looking for his parents? We all would logically say they’re obviously gone, right. But who do I want when, at my core, I’m sad, I’m nervous, I’m anxious? I want my parents, because they love me, and they care about me and always have and I’m convinced they always will, because they’ve proven it.

So he’s not looking at it like: I’m 99 and they’re dead, because he’s not even realizing that. So instead, he just needs to get there for whatever his reason is, because of him and his parents and who they are together.

But to say that doesn’t exist any more is devastating, and you just don’t know what you’re talking about. You’re just lazy. You’re wrong to say that doesn’t exist, so you’re the problem. That’s what his mind is saying. You’re coming at it from the exact opposite perspective, so it’s basically two realities clashing, and one of you has to give in. So because we know their brains are damaged, we have to give. Because they can’t. That would be like me trying to convince you that it’s snowing outside and it’s a beautiful, blue sunny day. One of us is going to give in. So if your brain isn’t working properly, then I say, “OK, yeah, you’re right. It’s a nice day out.” What difference does it make? So if you say to your dad, “You know what? Dad, we just can’t get there right now. We’ll go in the morning,” now he feels validated. You’ve listened to him. You’ve understood where he’s coming from. “Yeah, I get it, Dad. You want to be with your parents. I’d want to do that, too.”

PS: Boy, I sure wish I had you back then. I mean, seriously. So much of the caretaking problem is the frustration you as the caretaker feel and a certain self-righteousness that comes with the fact that you know you’re putting out as much as you’re putting out.

KM: It’s a self-righteousness that I think is warranted. For any of us to constantly put out for somebody else and never get anything in return — who stays in those relationships? If you had a choice in the relationship, you’d walk away. There should be that balance, but it’s a matter of listening.

If there’s one thing that I encourage care partners to do it’s listen. Because parents come out with things and they say things, but we often miss it because we’re so busy trying to do the caring. And meanwhile, they don’t want the caring.

PS: One thing that just occurs to me now is that I didn’t want to acknowledge the extent to which my dad had lost it, because it was only episodic and I had such an investment in bringing him back to the dad I knew.

KM: Yeah. You’re not alone. That’s the greatest loss that everybody feels. He’s not who he once was. She’s not who she once was. She’s not the mother; he’s not the husband; not the man I married. The reality is, he wasn’t the man you married 10 years after your marriage. He wasn’t the man you married 20 years later. But we love people, not because of what they do for us — I mean, a lot of our relationships are just, “I love you because of who you are. “And so we tend to lose sight of that when we have to be giving so much more…

PS: And they aren’t who they are. There really is a fundamental philosophical problem.

KM: Right. So if I’m expecting you to be one way and then you’re not that way, now I have to challenge that, because I want you to be that way and I’m going to keep you there. And so every time I’m challenging you, now I’m bringing something worse out of you. You’re getting irritated with me; you don’t want to talk to me; you’re sitting on the couch and you’re sulking; you’re sleeping more. This is getting worse. But meanwhile, I brought about half that problem because I challenged you every time you weren’t where I wanted you to stay.

There’s one woman – her mom and she had had a difficult relationship their whole life, and when her mom got the disease, she said, “This is insane. Why do I have to be the one who cares for her? This is horrible.” And when I and the staff that I worked with met them, the daughter said, “You guys just take her where she’s at and you don’t challenge her. She knows you guys actually care about her and love her.” And so she said she learned how to just treat her mom differently. And after her mom passed away, she wrote to me and she said, “My mom and I had a lot of growing to do. And we never quite achieved that mother/daughter relationship we wanted and would have hoped for, but we could laugh together and we could talk. When my mom died, I was sitting at her bedside. She didn’t know it, but I did and it allowed me to be the daughter I wanted to be.”

So what we bring to it is often going to have a grave impact on what our parents will end up acting like and being like, and so that’s why sometimes a perfect stranger ends up having a better relationship than somebody who’s known them their whole life. It’s not just all the baggage in the past; it’s just that the person with dementia starts to forget. It’s one of the greatest benefits. They’re not holding grudges. They’re not thinking about that stuff. They’re not saying, “But you were the one who 40 years ago…” They don’t think like that, because they can only think now. So the sooner we’re able to say, “You know what? I need to just let this stuff go,” the quicker you’ll be able to then just embrace them where they’re at and have a much better relationship.

For more on Mill’s career trajectory, watch our Making Sen$e report: