According to the AARP, one in four adults in the U.S. provides care to a spouse, relative or friend with a serious health concern. Roughly 18% of those caregivers are between the ages of 18 and 34.
That group includes Emily Quandt, a 23-year-old Beaverton resident who put her post-college plans on hold when her mother, Angie, was diagnosed with ALS in 2022. Emily and Angie Quandt both join us to talk about the dynamics of family caregiving.
Note: The following transcript was transcribed digitally and validated for accuracy, readability and formatting by an OPB volunteer.
Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. According to the AARP, one in four adults in the U.S. provides care to a spouse, a relative or a friend with a serious health concern, but only 18% of those caregivers are between the ages of 18 and 34. That group includes Emily Quandt from Beaverton. She is 23 years old right now. She put her post-college plans on hold when her mother Angie was diagnosed with ALS three years ago.
Emily and Angie Quandt both join me now to talk about the dynamics of family caregiving. It’s a pleasure to have both of you on the show.
Emily Quandt: Thank you.
Angie Quandt: Thank you.
Miller: Angie, first – can you just describe what your life was like before you were diagnosed?
A. Quandt: So before I got diagnosed, I had been a stay at home mom for, oh dear-
E. Quandt: 20-some odd years?
A. Quandt: Yeah, a lot of years. We have six kids, so I had actually gone back to work. And I noticed that I kept tripping on my left foot. So that’s how that all started. But before that, I just ran all over the place, driving kids to sports, three girls did dance. It was really fun. It was just very active. Lots of fun. We traveled a lot.
E. Quandt: We would go to Disneyland, which is her favorite place. We would go there a lot. She was just able to walk around, go on the rides, have fun.
Miller: And you said you started to trip a little bit. Is that what eventually led you to go to doctors to say, “what’s happening?”
A. Quandt: Yeah, correct. In December of 2022, I noticed I kept tripping on my left foot just like randomly walking. It wasn’t horrible, but it kept getting worse. And then in March, I finally went to primary care and that just set off a bunch of tests to rule out, because it’s so difficult to diagnose ALS.
I had MRIs, CAT scans, everything coming back normal. And then I had several more trips, falls and breaking bones. Finally, I wasn’t supposed to see the neurologist until the end of September. But my PT therapist was like, “something’s not right” and got me in sooner.
So I’d had more tests with the neurologist, and they finally ended up diagnosing me. They did an EMG, and that basically is like they put needles in your muscles and track things that way. And then he had me come back and do more tests, and then told me I had ALS. We did a second opinion and she told me I had ALS.
Miller: Had that been on your radar? Had that been, in your mind, one of the possibilities for what was wrong with you?
A. Quandt: Kind of, yeah. It had been so long, so I had been researching on Google of course, and I kept thinking “there’s no way it’s that.” When the doctor diagnosed me, he used the long word for ALS., which I still can’t even say, you’d think I could be able to, it’s like anatomical …
E. Quandt: Amyotrophic lateral sclerosis is the scientific-
A. Quandt: Right, and so he told me I had that. I was like, “What? What’s that?” And he said, “ALS,” and I was like “Oh no,” because I’d read a lot and knew it wasn’t a great diagnosis.
Miller: Emily, when did you find out?
E. Quandt: So all my siblings actually found out, I want to say two weeks later, from when my mom and my dad first found out. They didn’t really know how to approach telling us because it was such a big disease. At the time of diagnosis, they give you two to five years. That’s pretty daunting coming from your parents having to tell me and my five siblings.
So they told all of my older siblings to come to the house, and me and my little sister were there and we had no clue what was going on. And then they just kind of told us, and it was an awful day. We just kind of all were crying and didn’t really know what to do, were hoping that there was something wrong with the diagnosis, like they could have made a mistake. But obviously they didn’t.
Miller: Am I right that you were a junior in college at the time?
E. Quandt: I was about to start my junior year, yes.
Miller: How did you decide to, after you graduated from college, put your life on hold to some extent and to come back to help take care of your mom?
E. Quandt: I said that we’ve always gone to Disneyland a lot. Southern California, I’ve always kind of wanted to move down there, so that was kind of on my radar after college. But seeing like the progression of my mom and where she was at, it just didn’t really make sense to leave home. So it was really easy to step into the caregiving role and help my dad help my older siblings out at home.
My older brother was able to move four houses down from us. He is the cook for us a lot of the times. It just kind of all fell in place and was really easy for me to just say that I can go move, Southern California will always be there 10 years down. But this time is very special right now and I just can’t take that for granted.
Miller: It seems like, as you’re saying, it wasn’t a hard decision. What have the days been like for you since, and what’s an average day like for both of you? Maybe Emily, we’ll start with you as the daughter and caregiver … I should say a caregiver.
E. Quandt: Yeah, there are a bunch of caregivers. I’m definitely not the only one in my family since we have such a big one. But some of the days can be a lot less active than others. It just kind of depends on how mom sleeps during the night. But we like to just do what we can and make the most out of the activities we can do. During Halloween time, we tried to go to the most accessible pumpkin patches, so we kind of did that a lot. We like going to the mall, we just went to a fun Nordstrom holiday party.
It’s just fun getting to still go do those outings and kind of feel like a glimpse of the past. We were kind of looking at old pictures from all the Nordstrom holiday parties, and I was talking to my friend, I was like “oh, it’s so weird, my mom’s standing,” and it was just two years ago. These memories of the Nordstrom holiday party can kind of also show the progression of my mom’s ALS. Just because ALS has come into our life, these memories haven’t changed, which is good. We’re still able to do a lot of the same activities, even though she has ALS.
Miller: Angie, how do you describe daily life for yourself right now?
A. Quandt: I would say she summed it up pretty well. I have days where I’m really tired because I don’t sleep well, and I just get tired easily. But I love the days that we will go out and just go do something, go to the store. I like hanging out at the house. We do a lot of family dinners, and that’s really fun.
E. Quandt: We’ve kind of tried to incorporate TikTok into our daily activities.
Miller: Making them or watching it?
E. Quandt: Making them, we’ve become very obsessed with making TikToks. During the month of May was kind of when this kickstarted because it was ALS Awareness Month. We tried to post once a day, so that kind of became our lifestyle for that whole month. And now, we just kind of do it just when we’re able to. We’re gonna do like a “day in my life” today, so you should check it out. [Laughter]
Miller: Why have you wanted, Angie, to be so public about this, to tell the world on TikTok about what you’re going through?
A. Quandt: So one of the things that helped me a lot when I got diagnosed is, of course, you just are going to Google, even though they say, “don’t Google anything,” but of course I did. And I found this amazing young lady in her thirties, and she has ALS. And she would document everything. I don’t know if I’m allowed to say her name?
Miller: You are allowed to say her name. You can’t swear, but you can say other people’s names. [Laughter]
A. Quandt: Oh don’t worry, I won’t swear.
Her name is Brooke Eby, and she is just amazing. I think she is probably 35 or 36, and she got diagnosed obviously very young. And hers started with the left foot drop like mine. But she was really nice, even though I’m much older than her, to find somebody that I could relate with. And I was like, “oh my gosh, I have that too.” Because there aren’t that many people that have ALS. And if they do have it – I’m trying to think of the right way to say it – your life expectancy is not very long. Does that make sense without being too morbid? People kind of pass away fast.
I just thought, for me, raising awareness, and finding somebody out there, finding somebody that I could relate to, was so important. It’s been very nice because I’ve gotten a lot of messages. And one of them was from this young girl, and she’s taking care of her mom, and she was asking me questions, so we messaged back and forth a lot. It’s just nice.
Miller: What has it meant to you that your family, including Emily, have stepped up to such an extent to help you to take care of you?
A. Quandt: I mean, I’m so proud of my kids. It’s just amazing. I tell them all the time, “you don’t have to do this if you want to leave.” And they drop everything to help. I’m just so proud of them. I feel really lucky.
Miller: Emily, how has this changed your relationship, your daughter-to-mother relationship, now that you’re the one who’s providing this care?
E. Quandt: I feel like we’ve definitely become a lot closer, she’s my best friend now. It’s just great that I’ve been able to get so close to her during a time of such hardness, because I feel like some diseases like this can kind of tear a family apart. And ours has strengthened our bond, which is really special to see. So I’m just really happy that it’s gone the way it has and that we’ve just been able to make it work in the ways that we have.
Miller: Angie, what are your hopes right now?
A. Quandt: Oh goodness. It’s just very important to me, you get a diagnosis like this, and I just want everybody to get along in my family too. Like we’re a normal family and we bicker even though you have a bad diagnosis. But for me, I just want peace and patience. And they all are. But everybody has their own … and me too, I’m not perfect.
Miller: Angie and Emily, thanks so much. I wish you both the best.
A. Quandt: Thank you so much. Thank you for having us. Appreciate it.
E. Quandt: Thank you so much for having us.
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