Althea Gordon is the founder of Mind the Change, an organization devoted to exploring creative expression with people with dementia. Her mother was diagnosed with young-onset dementia fifteen years ago, and Althea visits her multiple times each week—or did, before the coronavirus pandemic and widespread lockdowns of care facilities. We talked last week about the struggles people with dementia and their loved ones are facing right now, and where we can find hope.

There’ve been a lot of efforts to protect the elderly because [COVID-19 is] so dangerous once it gets into nursing homes and care facilities. But of course, that means things like barring visitation. With your mother, on a personal level, what has that been like for you so far?

It’s been a huge challenge. Because my mom’s at the stage where really, touch and being with her is the connection and is how she knows that people are there and people care. And not having that touch from workers, other than them doing showering and toileting and “necessities”—that takes its toll on her.

She’s a very intuitive person. She’s very aware. If something is wrong, she knows, and you can tell that she knows because of her body language and her facial expressions and the way that she holds herself. She gets this really guarded look about her, and you can tell that “Mom knows something’s up.”

And so, inadvertently, staff and families, myself included—you’re carrying around that little bit of apprehension and that little bit of uncertainty, and she picks up on that. She picks up on those vibes. And then, when facilities put lockdowns in place, it—as a professional in the industry, I completely understand the need for these restrictions, because it’s terrifying and heartbreaking if it rips through a nursing home.

But to have such cardboard cut-out rules and restrictions for everybody doesn’t work. And I feel like we need to look at solutions that work for individual environments like age care. If you can understand flattening the curve: Right. Let’s explain that to you. But for people living with dementia, it’s such an abstract concept. What does it mean for them?

It means “I don’t care.” It means “I’m not safe.” It means “They’ve given up on me” or . . . We don’t know. That’s the big thing. We don’t know what it means for them.

That’s where people like myself have heartache. Because I can’t Skype my mom. I can’t. She doesn’t get it. She hears my voice and is madly searching for a hand or an arm or something, and it’s not there. There’s a beautiful image that’s going around at the moment of a son whose dad is in a supportive, assisted home, and they’re chatting through the window on the phone.

And that’s great, but my mom can’t do that. To park her in front of a window and put a phone to her ear . . . there’s a massive disconnect. We might only be a meter apart, but that meter may as well be kilometers, because she can’t touch anything and I can’t touch her.

Are there any things that you’ve thought of that we can do to alleviate the loneliness, or support care facilities right now?

There’s no one answer fits all. That’s for sure. And for the people who are able to do more, I think it’s great that there’s avenues of support for them. For example, where my mom is, they’ve put on extra staff because they know that there’s a gap. Not necessarily specific skill sets, but just having those people there to give that one-on-one attention, and not be time restricted and not be rushed.

We as a family provide my mom with some one-on-one companionship privately. I’m there multiple times a week, my brother’s there once a week. But we know that Mom needs that companionship. When my father passed away, that was the gap. He kind of lived there without living there. And so we got some people in who we pay privately, but their goal is to be with Mom and to sit there and be happy.

And at a time where volunteers aren’t allowed or family members aren’t allowed, having paid professionals in the industry come in and do that has been a godsend, because they’ve been able to continue. They’re seen on par with religious leaders and essential services. So we’re fortunate in that respect.

However, then part of me personally goes, ”Well, if they’re allowed in, why can’t I be allowed in?” And so, again, it’s finding that balance and finding that space to be okay not to be okay.

And myself, I’ve been really fortunate. The home has actually said, “We realize that it’s more distressing on certain people than others.” And they’ve said tomorrow that I’m going to go in and spend lunch with Mom.

I think it’s about keeping those communications open. I’m not saying, “Right, everyone go and hound your nursing home.” But I think it’s about communicating that loneliness, that disconnect. Communicating how important it is for people who are not able to always express things by words—who are not able to communicate as you and I are now—what do they need that is different from the people that can do that?

Obviously, I’ve known my mom for a few years now, and so whether she knows it’s me, whether she knows my name—that’s not part of the picture. I can go in, and she will look at me and sigh. Like, “Oh, thank goodness you’re here.” And so then I can go, ”Hi Mom, how was your day?” And she’ll roll her eyes, and I’ll go, “Oh, that good, huh?” And we start a conversation from there.

And I think a lot of people don’t know how to do that and don’t feel comfortable doing that, because the person’s not responding and going, “Oh, good.” “Oh, I’ve had a bad day.” And drawing from my background, for me that’s really easy. It just seems normal, like why wouldn’t you do that? I do it with my [fourteen-month-old] daughter as well. And she says a lot. I’ve no idea what she’s saying, but she says a lot.

It’s about providing that opportunity. And if you don’t provide that opportunity, then people don’t feel listened to. They don’t feel heard. And my mom . . . she kind of gives up a little bit. I think that is the biggest challenge. Supporting them to be heard and to feel okay. Like I said, without things like touch, it’s just really hard. It’s really hard.

If you were able to talk with some of the other people who are struggling with the same situation right now—struggling to connect without physically being present—what would you say to them?

Don’t give up.

I think once you give up, even if you don’t say it . . . people living with dementia are extremely intuitive, and I think they pick up on that. They pick up on if you lose hope. They feed off that.

And I think you need to keep your communication lines open in whatever way you can. Be that with staff, be that with other family members, be it with your friendship circle—or your loved one, if you’re able to use things like Skype and phone calls.

Don’t feel bad if you don’t get the response that you’re looking for. Because I’m pretty sure there isn’t a soul right now that is not trying their absolute hardest to make things work. You just need to communicate, because if you hold it in, it’s not healthy for yourself. And you never know what’s possible.

My mom came up with a brilliant saying when she first received her diagnosis, and she wrote it out and put it above her computer. And it was “From fear comes understanding.” She would tell people, “This is my mantra: from fear comes understanding.” There’s a literal translation, as in: you’re scared of something, so you look it up and you master it, or you find out more and it’s suddenly not as daunting or scary. But then there’s so many other interpretations of that sentence.

And so, for me, in times like this where she can no longer say that sentence, I guess I go back to that and go, ”Okay, that was my mom’s—is my mom’s—mantra. From fear, understanding.” Okay. Yep. Well, coronavirus is really scary. But by giving ourselves compassion and grace, and by giving ourselves space to understand what it means, how it’s going to affect us, whether it’s for the next two weeks, two years, two months, whatever . . . we will get that understanding. We will go, ”Okay, that’s what it means. This is what we’ve got to do. Take a deep breath, and just go for it.”

Excerpts from an interview conducted on March 20, 2020. Text has been edited and condensed for concision and readability.

To learn more about Althea Gordon and Mind the Change, click here.