Dan Schlein 11/5/24

(This interview has been edited and condensed for length)

Selma:   Thank you, Dan, for being part of our interview of real working caregivers and sharing your story. So, let's start by hearing how you came to be a caregiver for your dad.

Dan:  Well, it started many years ago. As a longstanding resident of New York City, I would frequently visit my parents in New Jersey. And because they're depression era, they would never spend much of anything on themselves. So, I would do it for them. I would bring them all sorts of great stuff, foods I knew they liked or things they'd like to read. And then they would chide me for being a spendthrift, and then enjoy it. And we'd repeat the cycle every couple of weeks.

I lost my mom about 15 years ago, due to ALS, which was a very difficult time. So, I’m a caregiver twice over.  I have continued to support my dad who has been pretty self-sufficient all these years. Then the pandemic hit, and I found that I was spending more time helping him out because he was naturally afraid to go out in public, even to the supermarket.  So, I became the guy who was doing all his stuff, all his errands, anything he needed to do.  He’s 94 now and doesn’t use the internet much. Same for his laptop computer or an iPhone I bought him. I try to make sure he gets exercise, though, through visits to local arboretums or state parks.  I purchased some home exercise equipment, too, that he can use when the weather might make walking outside difficult or hazardous.

So, I'm doing a lot of the things like renewing his VA card online, arranging electricians to fix defective lighting, replacing old storm doors and a million other things that come up daily, weekly and monthly.  What was supposed to be a temporary arrangement during the pandemic has become more of a, shall we say, regular one in which I'm continuing visits and regularly helping out with other things remotely, like emailing gutter cleaning service providers and arranging newspaper subscriptions. He’s had some physiological changes over the course of the pandemic that have increasingly limited his activities.  That's pretty much the overview.

Selma:  And how long has that been? How many years have you done that now?

Dan:  Oh, it's been since just before the pandemic, really, to the present time. I would say in the parlance of your book, I'm somewhere between the “awareness” and the “increasing demands” stage.

Zack:  Thank you for sharing what you shared with us so far.  So, when you started doing things for dad, because he didn't want to go out, and you starting to run these little errands, and then little errands became bigger errands and more errands. You said you're somewhere between awareness and... What was the other stage you said you were at? Increasing demands?

Dan: Increasing demands.

Zack: What are a couple of things that's made you become more aware of what you're doing? Can you put a finger on any of that?

Dan: Basically, since the pandemic, it's become a lot more important that he's got someone available, or at least somebody he can rely on regularly.  He did not go out much during the pandemic, and I didn't realize the physiological changes that can occur when you don't exercise or just engage in normal daily life activities. So, he's become significantly less active overall.  A few months ago, I literally I had one foot in an Amtrak train as I was about to go up to Connecticut for a few days, where I was headed for a college reunion, when I received urgent calls both from my dad and my brother. I learned that my dad was in a difficult position. He was in a part of his house where he needed help. And that was what really hit home…that he was weaker than he thought, even weaker than any of us thought. And that is a potentially dangerous situation. It so happened I had just put a cordless phone within easy reach of that spot the night before and it may have saved his life. So that's when I realized I really needed to be careful and vigilant and make myself available as much as I could.

I have to say, one of the things that has taken a hit is that it's been difficult for me to maintain many of my friendships – personal or professional relationships - over the past several years. I'm working constantly on the job. I get five hours a night sleep regularly. So, I worry about the impact on my own health, as well.

Selma: Have you reached out at work in terms of trying to find any support or resources from your employer?

Dan: There are some resources available in the company. They have an arrangement with another company called Bright Horizons. And there is an elder care employee network that I just heard about. I'm going to be attending one of that group’s seminars soon. It's actually being hosted by a working parents employee resource group, and they’re getting together to talk about how they can handle childcare and elder care at the same time. These are sandwich generation people because they've got kids and then they’ve got elders to look after too. 

Zack: Let me ask this, Dan, because this is a great opportunity talking to a male caregiver, do you feel that there are some distinct differences between a male caregiver and a female caregiver?

Dan:  Well, I haven't had a chance to compare many notes and maybe that's sort of significant in itself. It's not that there is no one willing to talk about it, but I don't have any peers who are, that I'm aware of, that are male peers who are doing this. You know, they're living far from their parents. They've got their careers. I'm sure everybody has issues. Maybe they just don't talk about it. Maybe guys don't talk about it much. But I don't compare notes with them. It doesn't seem to be an issue that comes up in our conversations much. So, I think because they're not in the same situation, or because they don't want to talk about it, there haven’t been an abundance of opportunities to compare notes.

Zack: Actually, the stats are saying that it's getting closer to the same proportions in terms of male vs female caregivers. It's like 40/60, believe it or not. But you hit it right on the money. You really don't know of someone as a peer. And that's the same dilemma that millennials may have. Like they don't see somebody like them that they can go talk to…. They are out there, but they're invisible. And so, I think there's more of a willingness to acknowledge that men can do this stuff.

Dan: Also, there have been some visible changes. I see in my company, for example, some men taking paternity leave, which was unthinkable years ago,? Even in our generation. But you don't see this. This is more invisible. Perhaps they look at discussing it as a sign of weakness.

Selma: So, with your wealth of experience as caregiver, first for your mom and now for your dad, what would you tell somebody that's a new caregiver? They just got that call or they just got that diagnosis about their parent or their spouse or whatever. And they're just starting their journey. What advice would you give them?

Dan: What a great question. It's hard to know how to answer that. I guess you should be prepared for what you're not prepared for. To be prepared for perhaps a lot of responsibilities. They might come in bits and pieces, or it might come in one big deluge. The cadence may change, but you need to think about how you're going to structure your life to meet the demands of this kind of responsibility, and how you're going to make it work when you are caught between what seems to be two grinding and intractable continents of work and personal responsibilities. And I guess everybody has to make  decisions how they're going to deal with those often competing priorities.

And I you should also think about who in your life you can reach out to, perhaps for help, if only just to talk about it all. Maybe get a sounding board and start investigating places that might be able to provide assistance, depending on what the nature of the problem, what the elder issues are.  I've been kind of pulled along without full awareness until recently of just how much responsibility can be involved, sometimes of an overwhelming magnitude. Because it can kind of creep up on you; these responsibilities don’t necessarily present themselves as a sudden crisis, like a heart attack or a stroke.

You might be spending a lot of time getting groceries, driving a parent to an appointment for a hearing test at the local VA hospital, freezing the meatloaf you made from the ingredients you picked up at the supermarket so they have meals available until your next visit, or you might be arranging and picking up medical prescriptions at the local pharmacy.  I went through a whole range of activities with my mom, who quickly became immobile.  When someone can’t move much, it can be really rough on the whole family.

 Zack:  What would you tell the Dan before, let's say when mom was diagnosed with ALS, what would you tell that Dan who was completely unaware? I mean, you were doing stuff and weren't aware as it is, but we're talking about like completely unaware that this is going to happen to you. What would you tell that Dan, just like, what's one thing that they need to do or should be doing?

Dan:  This is paradoxical, because it sounds a bit selfish, but I would say, among other things, think about yourself. Try to take care of yourself, because unless you take care of yourself, you can't help others. And try to set boundaries, try to get decent sleep, try to eat healthily. Of course, all that can be incredibly hard to do on a consistent basis, because for many of us each day brings unpredictable challenges and turmoil.  But try to be focused on finding a little place of calm, whether it be meditation or walks in the park and give yourself a breather every now and again. You have to remind yourself sometimes you're only human.

Zack:  I want you to really reflect deeply on this one. All right, you ready? So, if you did run into a peer, one that you identify as a male caregiver, also at work or similar to you, what's one or two things you'd ask them?

Dan:  Well, I would ask them, how do you do it? And what are your circumstances? I don't look at it as so much as a gender issue. I look at it as a juggling issue. At the risk of undermining the premise of your question, we're all dealing with the same issues. Society puts different expectations on us based on gender, but we're essentially dealing with the same challenges. How do you solve them? I'd love to learn. I'd ask them, what challenges have they been facing and what resources have they been researching to help them deal with it? And ask them how they're coping themselves with it personally. Those are all questions I would ask anyone.

And it's funny actually, because when I do talk to some of my old friends, the women are talking about these issues. The men are not talking as much about them. So maybe there is a gender component to eldercare issues. Maybe that's one of the reasons why I don't have that many conversations about it.

Zack and Selma: Well, thank you so much, Dan, for sharing your caregiver story and experiences with us.