How Family Caregivers Can Thrive and Not Just Survive

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You’re listening to Boomers Today with your host Frank Samson. Well, welcome to Boomers today. I’m your host, Frank Samson. Of course, each week we’re bringing important, very useful information on issues facing baby boomers, their parents and other loved ones.

And as I do on every one of our shows, I thank all of you, and I thank all of you because our listeners keep growing each and every day, and it’s because of you. You’re sharing our show in the individual you know, the podcast individual shows with family and friends, and so many of you are listening on either Apple Podcast, Spotify, Iurheart Radio, Audible. You could just ask the Alexer Siri and they’ll take you there. Even I ask check GPT they’ll take you there as well.

So again, thank you for that, and thanks for sharing. I know why you share the show with so many people is because we have the best guests, and I’m not going to disappoint you. Today we have with us Barry Jay Jacobs and Julie L. Mayer, who are married and psychologists and co authors of three self help books for family caregivers, including the AARP Caregiver answer Book.

So congratulations on that. Thank you, Thank you so much. Friend, and thanks so much for joining us. I really appreciate it.

So I know that our show lasts about a half hour, I could probably talk to you about the subject matter for a couple hours. You know is you know I’ve been in the industry for a while and deal with family caregivers. So I mean you’ve spent you know, years working with family caregivers in clinical practice. Uh, what do you think? There’s this single biggest emotional challenge caregivers face today that most people underestimate.

And we’ll start out Burials start out with you. So, Frank, I think there are different emotional challenges at different times. So early on, when somebody realizes that, say, their parent or their spouse needs help, there’s a little bit of that deer the headlights feeling of you know, what am I supposed to do? How do I do it? A little later on, there is a feeling of guilt unfortunately, that people feel like their loved one is suffering more than more than they are. They need to lieve that suffering.

People don’t feel entitled to take time for themselves. And then finally, towards the end of their loved one’s life, there’s a lot of sadness, and often a lot of again anxiety about not quite sure how to how to help somebody in their lives as well as possible. I would add that the biggest thing that we hear about is stress, and a lot of caregivers feel stressed out. They’re stressed out by the amount of information they need to learn, dealing with doctors, making sure their loved ones okay, and that stress can interfere with their own ability to take care of themselves.

And that’s what we worry about for caregivers. We want to make sure they take care of themselves. That’s a great point. I was going to ask this a little bit later on, but I’m going to ask it now, all right.

So you know, as it relates to stress, how can caregivers really distinguish between what would be maybe just normal stress and burnout that truly requires professional help. So of course, everyone has regular stress in their life, that’s pretty typical. But when you’re a caregiver, you’re not just stressed out by your life. You’re stressed out by taking care of all another human being who has a lot of needs and you want to do a good job.

So the kinds of things that point to burn out, are trouble sleeping, feeling dread when you wake up in the morning, just like dreading your day, being afraid, like how do I get through this again, and getting to a point where it’s actually very hard to do self care. So there’s sort of this escalation of stress, and often the person has a short temper, they’re very emotional, maybe they’re crying a lot. It’s just hard for them to manage their own feelings. Our goal is to help caregivers not get there.

It’s really important. So when we’re working with caregivers in our practice, or friends who are caregivers, or whoever we run into, we always say, you know, you have to take care of yourself. You have to make sure that you make time, even if it’s a few minutes. And part of the way you do that is you bring in other people who also care about the person you’re caring for, or who care about you and want to help you.

And that’s a good starting place. So I’ll just add, because we are married and we do it, we do talk for one another A lot of yeah, is that helping caregivers get to the place where they are ready and willing to take care of themselves. Is often a big, big challenge. Everybody is focused on the needs of the person they’re caring for.

They don’t like to sometimes even admit that they have needs, or they don’t like to admit that their stress, and they certainly don’t like to admit that they’re burnt out, and so they tend to put off their own needs, put off their self care, and then unfortunately that then makes them more likely to burn out over time. And so in our work as psychologists, a lot of what we do is talk with folks about how important this is for the sake of their loved one, but also for the sake of selves, to really decide that family caregiving isn’t just about taking care of the other person, It’s about taking care of everyone in the family, including themselves. Right right, good, great point, great point. So I want to you know, I’m sure you’re gonna maybe talk about it a little bit later, but your AARP Caregiver answer Book you address hundreds of, you know, real world questions.

What surprised you most about the questions caregivers were asking any and we could start, Julia, we could start. I’m sure very you’ll have additional but what kind of some that you went, Wow, I didn’t expect that question. Actually, it’s maybe more of a statement. Even though the book is all questions, it’s the dedication to their mission of caregiving that always feels kind of all inspiring.

You know. We hear a lot of sadness, a lot of loss and grief, but there’s always that feeling of I’m doing a really important thing, or if the caregiving is over, the idea I did one of the most important things in my life, one of the most meaningful things I’ve ever done, and a lot of times at the beginning of caregiving people don’t realize that, but as it goes along that that is just a We’ve just seen it over and over again. It’s really impressive. Yeah, I’ll agree, but I’m going to answer that question a little bit differently.

Frank. Probably the number one question we heard which surprises us is how do I make my brother help care for our parent? Right, So, it’s often a sister saying that, and often, unfortunately, it’s oftentimes a brother who’s not pitching in or not pitching in as much as they should, even though they may be criticizing what the sister is doing, for instance, and that leads to a lot of conflict between the siblings while caring for a parent and could really make or break the sibling relations ships over time. But a lot of a lot of that’s oftentimes the first question that simpling might ask us if they were caring for a parents, how do I get other people to help me? And specifically, how do I make my brother help? Yeah, you know, it’s interesting to bring that up, because I bring that up. I mean I see it all the time and bring it up to families.

I always said that, you know, let’s say you have two there’s two sisters and a brother, and you know, one sister who might be managing the situation because maybe they’re closer to mom or dad. I say, you know, I think that, you know, maybe a sister living or it’s the right move. And then this other sister does maybe maybe we should get a caregiver at home. And then the brother steps in and goes, there’s nothing wrong with mom or dad? What do you what do you guys worried about? You know, I mean, there I see that all the Why is that? Why? Why is? And I’m not saying it’s all the time, but why why do why is the male in that family the one that like just doesn’t that they doesn’t take it serious, but it just doesn’t think the situation is as severe as it maybe is.

Well, one of the things that happens, especially in the situation you’re describing, is when the brother shows up on the rare occasion that maybe he does. Mom, let’s say, is so happy to see him and her adrenaline is going and she’s actually doing better. And then after he leaves, oftentimes the sisters have to deal with Mom’s exhaustion and she doesn’t do as well. That’s one thing I don’t know whether there’s also a little idealizing of the parent, like they can’t believe that anything could happen to mom.

There’s probably a lot of reasons. And again I’m not going to throw all men down under the bark. I was a caregiver for my mom, but our I will say that many times guys are more wrapped up in their own jobs and their own families that they’ve they’ve they’re raising. They may be a little a little less more distant from a parent, and maybe the sisters who’ve remained closer to the brother doesn’t he’s just not well informed, but he also feels very strongly that the parents should have the right to live the way they want to live, and that the sisters may be taken over, so that that kind of sets up a gender conflict between the sisters and brothers.

Write from the get go. So this subject matter we could probably do a whole session on, I’m sure, but I’m gonna just throw it out there. I mean, guilt seems to be kind of a constant companion for caregivers, family care family caregivers. What is that? Where’s that guilt come from? And how can caregivers begin to loosen the scripts? So go ahead, Julie, you want to start on that one.

Well, one of the sources of the guilt is that a lot of caregivers feel like they have to manage everything by themselves, and if they don’t, somehow, it’s a reflection of they don’t love the person enough, or they’re not trying hard enough. They set standards for themselves that are sort of like superheroes. They’re more than a human can handle, and then they feel badly when they don’t do it perfectly. So one thing we often talk to caregivers about is that they don’t have to do everything.

They just have to make sure those things get done, and it doesn’t have to be perfect. It wasn’t perfect before. Let’s say your loved one had a problem, it isn’t going to be perfect now. So we tell people that it’s important to go easy on themselves, to lower their expectations, not that they don’t want to do a good job, but that it doesn’t help them to have expectations that are so high that they’re going to spend their energy feeling bad about themselves.

Right right, And I’ll bring up another kind of guilt, and that is because, as we said before, caregiving is stressful for many caregivers. They don’t always like it. You know, they can love the person they’re caring for, but they don’t like toileting that person, or dressing that person, or feeding that person, or even going over after work every day. It becomes very burdensome, frankly.

But then they feel guilty about having those quote unquote negative feelings about caregiving, as if that means that they’re a bad son, band, daughter, bad spouse and they so they try to kind of squelch those feelings. They feel guilty about them. But those one of the things that we do in our work is tell folks that those feelings are absolutely normal. Everybody feels them, even though they’re not always don’t always have the courage to express that.

Everybody feels that, and that doesn’t you know, feeling it and abandoning a parent are completely different things. You cannot like caregiving and still be committed to the person you’re caring, but you can. Even get angry at them like you used to before they needed care. It’s okay, you know.

You’re great, great points. So we’re going to take a quick break, I promise just to recognize their sponsor and we come back. You know, we’re gonna, you know, talk about how people can learn more about some of the wonderful things you guys have done or do or are doing. And I want to get into more about help for the caregivers themselves.

We’ll talk about that. Okay, So do you know anyone who may be concerned about an older driver well Senior Care Authorities Beyond Driving with Dignity program is a facilitated self assessment program for older drivers. This program has been designed to serve as a vital tool to facilitate older drivers and their families as they make appropriate decisions regarding the future of one safe driving career. If the individual is a safe driver, an advisor will provide him or her with strategies and how to remain a safe driver as they progress through the aging process.

If retirement is the appropriate decision, then the individual and their family are offered possible alternatives, resources and a specific plan to ensure a smooth and successful transition from the driver’s seat to the passenger seat. So to learn more, go to www dot Beyond Driving with dignity dot com to connect with a senior care authority advisor in your area. We are back with Barry Jacobs and Julia Meyer, who are married psychologists and co authors of self help books and the ARP Caregiver answer Book. So I’m going to turn over to you guys commercial time.

Feel free to share some of the wonderful things you’re doing website. Whatever it is you’d like to share. Sure, Thanks Frank. So.

The AARP Caregiver answer Book came out in July of twenty twenty five. It’s got about one hundred and fifty questions and answers on all topics related to caregiving and so everything from family dynamics to finances to finding an assisted living facility. Or nursing home for a loved one. And these are these one hundred and fifty questions or things that caregivers have been asking us, friends have been asking us for the last thirty plus years that we’ve been doing this work.

And the book contains in a very succinct way the answers that we give folks. So it’s the book is intended to really be a kind of guide, a guidebook, a roadmap, as you will, to help people get to lay of the land, especially early on when a lot of folks really are not clear as all the things they may have to tackle. The book is available wherever books are sold. It is an AARP branded book that’s published by Guilford Press, and our website is www dot Caregiver answer Book dot com just Caregiver answer Book, just like the title of the book, and we are always happy to hear from folks through the website answer questions.

And it’s one of the things the great joys of our lives is to be able to share some of what we’ve learned about caregiving with especially new caregivers. So I know you’re based in Pennsylvania. Are you able to work with families, whether via zoom or whatever, even outside of the state or how does that work. Yeah, we’re both psychologists and we have the ability to see folks and I think something like forty states now through zoom, and certainly we were in the Philadelphia area.

Of anybody is in that area, we’d like to see us in person. They cerically do that too, But we in our clinical practices, we see a lot of family caregivers. Saw someone this morning, a wife who’s taking care of her husband with als, saw someone who is caring for a parent with Alzheimer’s disease. I mean those are pretty typical psychotherapy clients for us.

Yeah, great, great, good. So let’s talk about self care for the caregivers, which is so important. You probably know the statistics better than I, but I remember reading quite a while ago that it’s not uncommon. I don’t know what the percentage is that the that the adult caregiver ends up passing away before the person who uh is the one receiving the care.

I don’t know what those numbers are, but whatever it is, it’s, uh, it’s astounding to me. And and uh so when when you you know, hear from somebody a care a caregiver and you talk talk to them about you got to take care of yourself. I think you know, I’m sure you say that quite often, and their response may be, I don’t have time. I don’t know, I don’t have time to take care of myself.

I just this is a full time job. I hardly have time to sleep. So how do you. Respond, Well, I’ll just start by saying that that actually happened to my own mother.

She was taking care of my dad and needed heart surgery and unfortunately passed away from a rare side effect of the heart surgery. But she needed heart surgery because she had not taken care of herself, and my siblings and I you know, begged her to every now and then. You know, my older brother would stay with my dad, who had vascular dementia and type two diabetes and kidney disease, and we would get my mother out for a night or two. But it was a major lesson for us to see my mother, you know, resist taking care of herself.

So, yes, we’re on a mission to help people recognize the dire outcomes that can happen if they don’t do some self care. And it’s as little as taken a few hours for yourself, just to read a book or take a walk or spending time with a friend. A lot of caregivers lose a lot of social connections because they’re so busy with their care receiver. So we try to get people to recognize who can help them, whether it’s other family members or neighbors or religious institution members who are willing to drive someone to a doctor’s appointment or pick up some medications from the pharmacy.

It’s hard to accept help, but it is a major way that caregivers can get a little bit of time for some self care. Yeah, sometimes people don’t want to leave the house because again because of the guilt, and so even if they stay in the house with the person they’re caring for, doesn’t mean they have to pay, you know, raped attention to them the entire time. That person that could be sitting in a chair watching TV and you could have your AirPods in listening to a book on tape, or you could be a puttering or in the other room. You could be You can get some self care even while being present, and it doesn’t mean that you’re neglecting that other person.

It basically means you’re you’re you know, providing them with a supervision, which are may be all that they need and you’re looking out for your own needs. Yeah. Right, So, professionals within the healthcare industry, senior services, senior advisors, physicians, care managers, what suggestions you have to those Because we get a lot of people within our industry listening to our podcasts, So what what suggestions you have to them? Who could help support caregivers both emotionally not just logistically. So a lot of times what I and I and I worked in medical education for a lot of years training doctors.

A lot of times the focus is on the person who needs care and not on their family member. And I think the most important thing that anybody in this profession can do is to recognize that family member, to introduce yourself to them, to see how you can assist them in the work that they’re doing for their family member, but also to say to them how are you doing, just to acknowledge the contribution that they’re making, Acknowledge to them that what they’re doing is stressful and that they need to also care for themselves. Sometimes all it takes is how are you doing for the caregiver to feel heard, feel seen, and that acknowledgment means a lot to them. If you sit in a doctor’s office and the doctor talks the whole time to the patient and your involvement is marginalized and your own contribution is marginalized, you leave that doctor’s appointment feeling less than And that’s not what we want any caregiver to feel when they have contact with a professional.

All professionals need to recognize and value caregivers that in of itself will make a difference. Great, very great point. So you know, we do have a few minutes left, and man, I got a series of questions here that I’ve put together, but I’d like to just open it up and give you the opportunity to share anything you’d like to share with our listeners. We have people that are listening that are family caregivers.

We have to say, professionals in the industry as well that listen. And I don’t want to get done with this interview with you, and then, thank god, I wish I would ask them that. Or you’re thinking on your end, why I wish you would ask me this. So I’m going to open up to eye either one of you, whoever wants to start, just any words of wisdom.

I guess that you can provide well. I guess talking to caregivers, whether they’re family members or professional caregivers, or the professionals who work with caregivers, etc. We all have to remember that caregiving is. It can be joyful, but it’s also full of a lot of pain.

It’s a struggle. People have grief, People feel like they can’t do enough, they can’t do well enough. I feel like it’s important for us to have compassion and also compassion for the care receiver, compassion for the self and for everyone who’s involved in the whole system. A lot of times people get frustrated, they’re not sleeping enough, they’re irritable.

I mean, this is professionals, this is family members, this is even care receivers. And I feel like we all have to give each other some grace. It’s a tough situation. Everyone’s doing their best, everyone really does care, and we’re all just human and we don’t do perfectly and that has to be okay.

Yeah, And I’ll answer the question a little differently. The most common form of caregiving is caring for a parent. And you know we’re boomers. We care for our parents.

Many boomers, even in their seventies. They’re still caring for their parents in their nineties. And maybe they weren’t planning on caring still being a caregiver in their seventies. Maybe they figured they’d be doing other things, but here they are caregiving.

The toughest form of caregiving, though, is caring for a spouse, and there are many boomers today who were caring for a spouse who may have a chronic illness like diabetes or maybe developing dementia. Spousal caregivers, more than anybody, have to be willing to take care of themselves because a lot of times, when you’re married to somebody they’ve been a longtime partner of you, you feel like your life is wrapped up in them, and it’s almost like you made a vow to them to care for them, and then therefore your needs don’t count anymore. And spousal caregivers, consequently, are are the ones that are most vulnerable to burn out, especially caring for someone with dementia. I would say to your listeners, if you’re a espousal caregiver caring caring for someone with dementia or another type of neurological illness, best take care of yourself, because that person really relies on you and you really need to be there for them, and the only way to do that is really to keep yourself going and to avoid the burnett that we talked about earlier.

Great, great, Thank you so much, Barry Jacobs, Julia Meyer, thank you so much for joining us on the Booms Today. Really appreciate it, and thank you everybody for joining us. And just please please be safe and we’ll talk to everybody next week. You’ve been listening to Boomers Today with Frank Sampson.

To learn more about today’s show, visit Boomerstoday radio dot com and join us next time for another edition of Boomers Today.