Q&A: How Caregiving Impacts Friendships and More
Talking with Frances McInerney, the brains behind "The Carennial."
Hello from the other side of forty! I’m happy to report that I haven’t turned to dust. I have, however, fallen behind on deadlines, which is why I’m appearing in your inbox after 4 p.m. my time. Sorry!
Before I dive into my interview with caregiving advocate Frances McInerney, who’s great, please enjoy a few random shots from my birthday weekend.
Q&A: How Caregiving Impacts Friendships and More
Frances McInerney remembers getting a strange call from her father, John, about a year before he was diagnosed with early-onset Alzheimer’s in 2017. She was waiting for him to pick her up in Philadelphia's Center City—a place he’d been a million times before—but he couldn’t for the life of him figure out how to get there from his house in New Jersey.
“To hear that he had no idea where he was going was alarming,” Frances tells me. “This is someone who, when I was in high school, would say, ‘I can be anywhere in Philadelphia in 15 minutes.’ He grew up there; he worked in the city.”
Cut to the fall of 2019, and Frances was living back home, helping her mom, a nurse, provide full-time care to her father—all while finishing her last semester of grad school. (She’s now a speech pathologist.)
“We both saw my dad as an interesting patient, and it was fascinating to watch all of these things change about him from a clinical standpoint,” Frances says. “But then at the same time, we were having a really hard time with the emotional aspect of, ‘My god, this is my dad, this is my spouse, this is someone that I love—what is happening?’”
John passed away in August 2021 due to complications from Alzheimer’s. Below, Frances and I discuss her caregiving experience, how it impacted her friendships, and why she’s channeling her grief to help other millennial caregivers. (You can find her on Instagram @TheCarennial and on her soon-to-be-relaunched blog.)
You decided to finish your final semester of grad school back home, in the fall of 2019, and then the pandemic started not even six months later. How did that impact your father?
I do think Covid sped up the progression of his disease and therefore his regression. The spring before, in 2019, he started going to an Alzheimer’s respite-care program. He called it his “job,” which I thought was great, but it was a social program for him because there was a bit of “use it or lose it.” So that was part of his routine up until Covid, when they had to close down for health and safety reasons.
Then it was just you, your mom, and your dad in the house?
At that point, Covid comes and it was my mom, my dad, my brother, and then my sister, who lives in Germany but came back. So for a good four or five months, there were all five of us back under the same roof. Which, at the time, was very challenging. But in retrospect, it was really nice, because that was my dad’s last good summer.
By that fall [of 2020], my sister had gone back to Germany, my brother had moved out. So then it really was just mom and me.
It was around that time that my dad started having toileting issues. And then probably within three months his overall hygiene, in terms of bathing, showering, any type of shaving [makes a plummeting gesture]. Toothbrushing was something we tried, but he was very stubborn.
What aspects of your life felt “interrupted,” if any?
Between 25-to-35-slash-40-ish, there are a lot of big, major life decisions that typically happen. Most of the time, you figure out what your career is and you start there, and you try and take off because you’re going into your peak earning years. That could also mean, “Hey, maybe I want to get up and I want to move to San Francisco.” You can make a big move like that. Many people choose to get married, that’s a societal norm. A lot of people also choose to have children. Or maybe they go and buy a house. They’re making these bigger choices. And that was something that was just not going to happen for me at that time.
I can’t speak to other diseases, but with dementia, it eventually becomes so consuming that it’s just like, “Nope, that’s just so not on the horizon, because this is my focus.”
How did this experience impact your friendships? Were you able to relate to people your own age who were going through all the “normal” rites of passage?
I mean, obviously, I’m going to be very happy for everyone going through these life experiences, because that’s great. There is a tinge of envy, because you’re like, “I’m just so not there” and maybe want to be.
Did you lose any friends?
I don’t think I lost any friends, but there was definitely distance, and I became out of touch with people because I just couldn’t socialize. There’s no, “Oh yeah, sure, let’s meet up Friday when I get done work.” Nope. Actually, I have to go home because my mom is also working, my brother is traveling for work, and there’s no one there to stay with my dad.
It would also be hard for me [to socialize]. Because, as I said, I really was like, “That’s great that all these good things are happening to you.” But you do sit there, like, “Oh my god, I’m going to go home and I’m going to give my dad a shower. That’s really awesome that you are going on vacation.”
I would like to think, and I kind of get the hint but no one has really said anything yet, that some of my friends who have had babies are kind of appreciating the “Yeah, I can’t go out.” I think maybe they’re starting to understand.
Were you able to date while going through all of this?
Yes, because I met my current boyfriend while I was in grad school.
How did caregiving affect your relationship?
I thought he was going to break up with me when I was like, “Oh yeah, I’m gonna go back to Jersey and I’m going to live with my parents.” But he was like, “Okay, let’s figure it out.” And we really did. We did long-distance, back-and-forth for about two-and-a-half years—however long I was doing all of this. It was tough, but he was a really good sport about it.
There were a couple of times that our relationship did take a big backseat; like initially during Covid, we agreed to not see each other. Because, you know, what if he has something and he brings it down and my dad gets it?
But he stepped up to the plate in ways that he did not necessarily have to. He would come and visit and sometimes he would just say, “You can sleep. I’m going to go for breakfast downstairs. Come down later.” And he would be sitting there watching whatever sports-y thing—usually soccer—on TV [with my dad], and that would be great. I think my dad enjoyed it, too, because there was another guy around besides my brother.
That’s really sweet.
He must like me, I guess.
Are you interested in having kids? I know for some people, even after their caregiving experience ends, they still have the lingering feeling of like, “Well, now I’m depleted and I want my time back for myself.”
Thank you for saying that. I feel that way one-thousand percent. For the longest time I was like, “Yeah, I’m going to get married, I’m gonna have a family.” But I remember in June 2021—very close to my dad’s end, so you can understand where I was in the experience—I was at a Buc-ee’s in Florida. That’s like a rest stop, but also with a clothing store and knick-knacks, and like 100 gas pumps.
Anyway, I was in there and walking around and there was this cutesy children’s section and I walked through and I just felt nothing. It was the weirdest thing, because I’m usually like, “Oh my god, look at these cute little baby clothes! They’re so sweet.” And I walked through and I was like, nothing. I want nothing to do with this. It was very shocking to me.
How do you explain that response?
I think this caregiving experience just deeply impacted me to the point where I wanted nothing to do with caring for anyone else. And it has only been more recently that my mind has slowly started to switch. But I think this is a huge topic that does not get enough coverage, particularly being someone who is now in her early thirties. That time is ticking to make big decisions like that, as my doctor likes to remind me.
I think this past year of rebuilding has helped me be like, “Yeah, okay, I think I’ll be alright. I’m not going to have the five children or six that I thought I would have when I was 20 or 18, but…”
How has your rebuilding been going?
Slowly. I’m still spending time remembering who I was and what I actually liked to do—which probably sounds very silly. But so many things got shelved. So I’m just rediscovering stuff.
And then taking this experience—because it very deeply impacted me—and trying to do something with it. A little bit through advocacy, but also maybe through teaching. Because my mom and I have medical/clinical backgrounds with our jobs, and even sometimes we were like, “What is going on? How do we do this?” And so maybe for people who don't have that experience—how can I help you?
That’s kind of helped channel my grief as well. Like, this sucks and I’m so mad about a lot of things, and I’m going to hopefully make it easier or better for someone else.