Tiffany Robinson (00:04.571)
Caregiving is rarely a solo act. Families, professional caregivers, and clients each bring unique skills and perspectives, but aligning those can take intention and skill. Today, we're joined by Dr. Julie Mayer and Dr. Barry Jacobs, two nationally recognized psychologists who have written and spoken extensively on caregiving, relationships, and the emotional dynamics that shape how we give and receive help.

Together, they'll share insights on how family caregivers can foster greater cooperation with professional aides and why teamwork is essential to compassionate care. Julia Berry, welcome to the podcast.

Julia Mayer (00:46.018)
Thank you.

Barry Jacobs (00:47.05)
Thank you so much, Tiffany. Really a pleasure for us to be here.

Tiffany Robinson (00:50.639)
You've both spent decades helping families navigate the emotional side of caregiving. Before we get into today's topic, can you share a bit about your backgrounds and what drew you to this work? Julia, do you wanna start?

Julia Mayer (01:05.806)
Sure, I have been a clinical psychologist for decades and my work has sort of evolved from mostly helping women and issues through the lifespan to really caregiving. It's become a bigger and bigger issue in my therapeutic work because the population of caregivers is really growing. And then, know, personally, my mother was my father's caregiver.

and she did not really do enough self-care, even though we really pushed her to, my siblings and I, and she needed a surgery and that led, unfortunately, to an unusual side effect that led to her death. So she had been my dad's caregiver and my siblings and I, as you can imagine, we were all grieving and then we had to sort of jump into place to take care of my dad.

We all participated as much as we could and we also brought in someone hired aid to help and we had to manage working with her.

Tiffany Robinson (02:14.117)
So sorry to hear about your mom. think anytime we have the professional view of what we're supporting people with, and then we also throw in, now I have that personal view, it really kind of takes it in a different direction of how you support people. Did you feel that that was something that helped you support better once you had even more with that personal experience?

Julia Mayer (02:37.896)
I absolutely learned so much. Barry and I had already been presenting and talking about caregiving when this occurred. And it's one thing to read about it and hear about it from our clients. It's another thing to live it. And yes, I have even more empathy for what people go through. I understand so much more about sibling struggles.

Tiffany Robinson (03:06.148)
Absolutely.

Julia Mayer (03:07.54)
and certainly also about the challenges of having hired help as well as participating yourself. So it was a lot, yes.

Tiffany Robinson (03:17.787)
right, Barry, do you want to share a little bit about your background as well?

Barry Jacobs (03:22.378)
Sure, Tiffany. So when I was a teenager, my dad had brain cancer, unfortunately, and lived for about a year. And then during that time, my family went through an extremely difficult time. My dad was unable to work. My mom had a, who had been a homemaker, had two jobs. My family really, really struggled both during his illness and then after his death. Then, I mean, that led me to, to

eventually become a psychologist focusing on the needs of individuals who had serious illness and their families. And as Julie pointed out, I had that early experience, but then we had long period of professional experiences. But it was then in my 50s that Julie and I took care of my mother who had vascular dementia and my stepfather who had Alzheimer's disease, who did that for about seven years.

Part of that was we moved them up from Florida to live near, in an apartment near where we live in Pennsylvania. And that meant a lot of hands-on caregiving for a long period of time. And that really brought caregiving home to us in a very personal way as we had never experienced it before. we knew a lot beforehand, but we knew much, much more even after we went through those, our own personal caregiving experiences.

Tiffany Robinson (04:49.091)
Also, so sorry to hear about the examples that you also have. And I think this is one of those things where when we start talking to people, we realize that so many families have gone through the process of caring for their loved ones. And I think that just makes it so much more important that we talk about it more and we talk about how we can improve the process in what we're doing, especially as we're talking about today where

we wanna talk about we have individuals who are family caregivers and now they're looking to bring in professional caregivers to help with that process. And I think that sometimes alone can bring some guilt that family caregivers feel when they feel like they can't juggle it all on their own. And so then we have guilt in addition to managing and maintaining these relationships that you are trying to connect

with for these professional caregivers with the family caregivers and then also throwing in the client. Do you guys have experience as well where you have these individuals where they feel guilt because they're bringing in help and they need outside assistance?

Julia Mayer (05:59.374)
Absolutely. The guilt is always there. So many caregivers feel guilt. And we often say to them, the most important thing is to provide the care, the safety, the comfort to your loved one. It's not exactly how that care gets provided. So if you can do cooking and

visits and taking your loved one to the doctor, but you bring in someone to do bathing and house cleaning and things that you don't want to do or you don't have time to do, there's no reason to feel guilty because as long as those things are getting done okay and your loved one is cared for, that's the goal. So we try to orient people toward what's your goal, not you're supposed to do everything and be superhuman.

Barry Jacobs (06:55.402)
Yeah, and I would just add, in the case of my mom, you know, she, like a lot of older adults, she needed somebody to help with her personal care, but she didn't want anybody coming into her apartment and helping her. She was very resistant to the idea. And we had to unfortunately insist because it wasn't safe for my mother to stay alone all the time. And that meant that we were kind of going against her judgment. And I felt very guilty about that. But I also...

knew that this was a necessity. so what started off as one day a week having a personal care aide come in, two days a week eventually turned into six days a week, really as much as we could afford to have a personal aide come in because my mother just needed it as she declined from her illness. But that was very, very hard, the constant negotiation to try to get her to accept.

having an aide in her home more often. That was tough.

Tiffany Robinson (07:59.847)
I think it's so smart the way Barry that your family went in regards to setting up care. And I really encourage families to do this when we have a family member who is uncomfortable with the idea of someone coming in that they don't know. It's great to start small. And so, yeah, let's start with one day a week. Let's maybe go to two days a week. Maybe they're coming in and just assisting with bathing and doing some, you know,

housekeeping and things of that nature, maybe some meal prep, but starting out small, if that's a possibility, is always a great way to ease someone into this. And of course, what we see happen time and time again is our caregivers come in and they realize this is actually good. This isn't as terrible as I kind of created in my mind. And so I think anytime we can start out small and then ramp up as those needs increase.

is always gonna be an easier way to have a transition for a client. Now, Barry, I know that your work often focuses on relationships as the heart of caregiving. Let's explore how those relationships can become more collaborative, especially between families and professional caregivers who support them every day. What makes cooperation between family members and aides succeed or fall apart?

Barry Jacobs (09:27.478)
It's an excellent question because I think it's so essential that caregivers and aides work well in the kind of partnership because that's ultimately going to be what's best for the care receiver. So in our new book, the AARP Caregiver Answer Book, we actually have a whole section on this where we talk about seven behaviors for forming good partnerships. And that includes things like being open and attentive to one another, being curious about one another, communicating frequently.

really finding ways of following through with promised actions through one another so that the aide realizes the family caregiver is reliable and the caregiver really realizes the aide is reliable. When they talk a lot, they say they're gonna do what they're gonna do and then they follow through in those actions. And those, when the aide and the caregiver come to really rely on one another as a team.

working on behalf of the care receiver, then it's really very powerful and makes the caregiver feel assured, the family caregiver feel assured, make the aide feel like they're in a workplace where they're appreciated and really gives them a better job experience. And they're more likely to do their utmost to really go the extra yard for the care receiver if they feel like the caregiver is giving them positive feedback all the time for that.

Tiffany Robinson (10:52.651)
Julia, what are some ways that, you when we're talking about communication between family members and these professional caregivers and we want to create that, you know, relationship like Barry was talking about, someone says they're going to do something and then it's followed through. What are some ways that you recommend that taking place? I know something that we've done at Comfort Care and At Your Side is we will provide a notebook for communication where, you know, of course, this is an urgent

Barry Jacobs (10:52.798)
Anything?

Tiffany Robinson (11:20.225)
needed material that we're providing in the notebook, but anything that we can share with one another of how the day went. Was there something that was different about the day? Was there something, you know, maybe there was a particular, you know, service that, you know, mom declined. She didn't want to take a bath today. You know, just taking those notes and sharing with one another. I think that's a way that we've tried to kind of foster this connection and this relationship. But what are some other ideas that you have?

Julia Mayer (11:47.03)
That idea actually, Tiffany, is one of the main ones we recommend. And we talk about it in our book as well. We had a notebook for Barry's mom's AIDS. And it was actually an amazing record of her care. Not every aid wrote a short story. But.

They would definitely talk about whether she ate or not, whether she had any symptoms of any other kind, whether she had a fall, what her mood was like. And for us, it was a window into how she was doing, which was amazing. And also other aides could read it and get that information. So when they came to their shift, let's say the next day, and they looked at the previous day,

they would have some orientation. So that's a tremendously helpful thing. It's always helpful to give people respect and allow them their dignity. I know that sounds obvious, but there are people who treat hired caregivers as in some way less than, and it never works well. And we would naturally treat people well. And of course, that's what we did. We asked them about their lives.

We make sure they have everything they need in order to do their job. So talking with them, checking on them, making sure their relationship with the care receiver is good. We had a variety of people coming in. Some did their job okay, just sort of phoned it in, others really connected with Barry's mom. And one in particular, they...

really just sort of hit it off and really cared about each other and that was a major enhancement for Barry's mom and we were so appreciative. Show appreciation. It doesn't cost anything. you know, when you have a person there, appreciate what they're doing. Let them know.

Tiffany Robinson (13:53.317)
think as humans, hate to conflict. So sometimes we let small issues fester. This can be on the family side. This can be on the professional caregiver side. How do we talk through small issues before they become conflicts? Barry, what's your advice on that?

Barry Jacobs (14:11.99)
I think through the notebook and also just regular conversations when the aid debriefs with the family caregiver about how the day went, but also any issues that came up, kind of keep the family caregiver in the loop or vice versa for that matter. The family caregiver could alert the aid when maybe the care receiver had difficulty the day before or is not having a good morning.

Just that ongoing communication really enables each person to do a better job, to be more attentive to the care receiver, to work in a, and for everyone to work in a coordinated fashion. And I also think it just, the underlying message there is, you know, we're on the same team. Everybody needs to know what's going on. Let's work together on this. And that strengthens the bond between the family caregiver and the aide. And that again creates a...

very powerful approach to the care receiver so that they're going to get the best, most well thought through care where everyone's on the same page, giving the same message to the care receiver, using some of the same strategies, but really working together on the care receiver's behalf.

Julia Mayer (15:28.266)
Another little bit of advice there would be don't get defensive. If a hired caregiver says to you as the family caregiver, your dad doesn't like the food you're buying or he's unhappy with something or complains about them or whatever they have to say, you try to listen to it with an open mind and not jump in to defend yourself.

It's better to hear as much as possible and then to come up with some ways to compromise or negotiate or change something. But I think, you know, we're human. People have a tendency to want to defend themselves pretty quickly, but that makes it harder to communicate.

Tiffany Robinson (16:18.009)
I think you're absolutely right. Sometimes they feel if the caregiver is sharing just some information, they may feel that it may be the caregiver kind of coming at them in a way. I think it's important for the families to be open. And it's also important for our professional caregivers to really try to build rapport without overstepping any boundaries. Julia, what's some, you know,

tips that you would give to help caregivers provide that feedback, but also make sure they're not kind of overstepping in making the family feel uncomfortable or they've overstepped a boundary.

Julia Mayer (16:59.116)
Well, it's interesting you asked that question. I had an experience with a caregiver of Barry's mom. It was pretty early on when we had started to bring in caregivers. And I guess his mom was unhappy and she had complained to this woman that I wasn't there enough. And so the woman said to me, I came in one day and how are things going? And she said, you really need to be here more often.

And I think she didn't understand the big picture. I was there plenty. I was there a lot. I did everything I could to support my mother-in-law. I also worked full time and we had two teenagers at home at the time. So I listened to her and I said, I appreciate your comment, but we have worked this out to the best of our ability. Thank you. I tried to be gracious about it.

But I think as a hired caregiver, it's important to keep in mind, you don't know the whole family and you don't know all the dynamics. You hear one person's point of view. It might be the care receiver, or you might hear the caregiver's point of view, but you want to stay in a professional position where you don't pick sides, you don't pit people against each other, and you don't know the history. So don't presume.

Tiffany Robinson (18:24.315)
Absolutely. I sometimes think that a little empathy goes a really long way in these situations. Barry, I'm going to pose this question to you. What role does empathy play in keeping everyone aligned on the client's care plan?

Barry Jacobs (18:42.15)
empathy plays the central role in all relationships whether they be for caring for an older adult or any of any of our relationships. mean when we are able to to put ourselves in the other person's shoes really understand what they're going through and not judge them relationships just go better and that certainly is true between family members and to aides. When they really give each other grace I mean we use that term giving each other grace a lot because

That's where people make allowances for the idea that maybe not everybody is always going to get it right, but everybody's intentions are good and we're all working towards providing better care and working in a more coordinated fashion. That empathy enables all that to happen when there is a kind of more blaming tone used on the part of the family member or the aide.

then it's very easy to shut down communication because the person receiving that criticism becomes defensive and they don't want to hear it. And they're less apt to work with the person who they perceive as blaming them. And so empathy really improves communication. It improves decision-making, it improves coordinated actions, it improves ongoing feedback.

it really engenders trust and that's more than anything what we're talking about today is how do we foster trust in the relationship between a family member and aid and empathy is a key ingredient of that.

Tiffany Robinson (20:17.389)
I like how you talked about giving everyone grace. And I think that has to be given to everyone that's at the table. You whether it's the caregiver, it's the client who's going through this maybe loss of the abilities they had in the past. And then the family and professional caregivers coming together, really grace has to be given to everyone at the table. Let's talk about sustaining this partnership over time.

Julia, what are some long-term benefits of treating caregiving as a shared journey?

Julia Mayer (20:50.914)
Well, maybe it seems obvious, but the longer the caregiving goes on, the more you want it to be through a team effort, because caregiving generally gets more difficult, more challenging over time. The care receiver tends to need more as time goes by. And so you want a care team that is consistent, that knows the care receiver.

that knows what the challenges are, that has maybe even met the medical team, that has talked to doctors and other providers. You want people who know the lay of the land. We talk about in our book that caregiving is a journey. the idea is if you can have people on that journey, all of whom serve valuable roles,

and feel valued in their roles, then it goes as well as it possibly can.

Barry Jacobs (21:54.369)
Yeah, and I would just add to that. Not only when people feel valued, but when they really have an idea of what they can do to make a difference for others. Everyone brings a skill set to bear on the caregiving, providing care for the care receiver.

When an aid, for instance, gets feedback that when they do something in particular that the care receiver is especially delighted with that, then they're going to do more of that, then they're going to feel really good about doing that. So to give you an example, my mother had a wonderful aid who was with her for over a year, an aid named Mary. And Mary had the evening shift and she would come around 3, 3, 4 o'clock and

She did two wonderful things for my mom. First of all, she was an excellent cook. My mother just loved her food. Secondly, every night Mary would give her a foot massage. Now I'm not expecting every aide to give every care receiver a foot massage, but Mary was someone who had studied massage and my mother was just thrilled to get this foot massage. She looked forward to it.

And then she and Mary became fast friends and Mary became a trusted member of our family. I mean, felt like I could talk with Mary about anything regarding my mom. She was not judgmental of Julie or I. She, at the same time, did everything she could to help my mom and would listen to my mom. And sometimes my mom was unhappy with just being an older adult who had significant functional deficits.

And Mary was a wonderful support for her and support for us. And I mean, that was the most ideal relationship I could have imagined happening with an aide. But we let Mary know just how much we valued her and how much my mother loved her cooking and loved the foot massages. those foot massages continued every night.

Tiffany Robinson (24:00.043)
Mary sounds like an amazing caregiver and really a foot massage, a hand massage, these are ways to connect two people together. And so it makes sense that your mother really took to her with, it sounds like she was very willing to connect with her right through the massage, but also just being there and being a person who was happy to spend time with your mother. And I think that makes a huge difference when you have someone who is there.

Sometimes I think clients feel like this person doesn't want to be here. This is just their job. But I think many of us who work in home care, we know that there are many caregivers who this is their calling more than this is just a job. And they go out and they do these things to really help these clients have their best possible life. How can we help you? How can we make their day better? So Mary just sounds like one of those.

gem of a caregiver that we all want to have on our team. So when we're talking about professional caregivers, Julie, I'll pose this question to you. How can agencies support ongoing teamwork between families and caregivers? What are some ways that an agency can do that?

Julia Mayer (25:17.954)
Well, I think it's all about communication. They can train their employees to do things like, mean, hand massage is a great example. As long as the care receiver wants it, it's a way to connect. Like you said, it's a way to have some physical touch. A lot of care receivers are a bit deprived of physical touch. And it's a way to show care. And it doesn't take a lot of training or effort to do that.

But I think agencies need to be aware that the people that they are sending out into the field to work with care receivers are in a very important position. And so they need to be trained to be empathic and patient and compassionate. I mean, I've heard plenty of stories of care receivers who have been difficult, know, I think because they've been unhappy or miserable or in pain.

unhappy about, you know, where they are in life. And that is a tough person to work with. So I would want agencies to help their employees get tools to deal with a difficult care receiver, how to overcome that barrier when the care receiver really doesn't want hired help or where they're very critical of the caregivers. It's a hard job emotionally. So it takes some training.

Barry Jacobs (26:41.984)
Yeah.

Barry Jacobs (26:47.06)
Yeah, I absolutely agree with what you just said, Julie. The agencies, the training that they provide their aides matters enormously and the support that they give their aides matters enormously. The aides feel like the agency has it back. I think that enables the aide to feel more comfortable in their job. I also think that when the agencies ensure that an aide has a consistent schedule with the same family, same care receiver,

so that there's a greater chance for them to really develop a relationship with that care receiver and the family caregiver. That's all, so much the better. So I think the systems and agencies put in place for training, their practices matter a lot in terms of enabling the kind of magic that happened with Mary, with our family. Mary came consistently. We knew when she was gonna come, she was reliable.

And we really came to know her and not just know her as an aide, but we also got to know her personally. And she got to know us personally. She got to know about our kids. We got to know about her family. We got to know about some of the other things that she had done in life other than work as a personal care aide. It became a friendship and that...

That only happened because she came on a regular basis. We had to time over months and months to really deepen our relationship with her.

Tiffany Robinson (28:16.899)
I think sometimes as agencies, we are really worried about making sure they have the right training and encouraging the right skills. But I think one thing we always have to remember, and as we've talked about, as they're with someone, a lot of times the care needs increase. And also the emotional baggage that comes with working with someone who's going through end of life, there's a lot of emotional

you know, needs that are there as well. And I think as agencies, we have to support our caregivers in that way as well. You know, making sure that they know that we see what they're doing and, you know, making sure that they know that we're there and we have their back and maybe we're even doing special things for them from time to time. Right. So they're normally the ones out there giving the, you know, hand massage. Well, maybe we have someone come into the office for an afternoon.

and they're going to be giving 10 minute hand massages to anyone that's interested in coming in and spending some time with the people in the office. So think it's important for us to also think about supporting them and giving them ways to deal with the stress that may come with the job in a healthy way. And a lot of times just knowing that you have people back at the office, back at the agency who are rooting you on, we are appreciative of you. So I think that's important for us to also

take time out to appreciate our caregivers and to really give them ways to see that what they do is so important because it is, it really is.

Tiffany Robinson (29:54.297)
What are some ideas that you have for not only professional caregivers, but also family caregivers, because they also have a very heavy list of items that they're holding, whether it's physically or mentally in caring for their loved ones. What are some ways that they can provide some self care to themselves? What are some of your biggest recommendations? Let's go with Julia.

Julia Mayer (30:22.124)
Well, I guess when we talk to people about this, it's an extremely important issue. The emotional burdens, and I don't mean that in a negative way, it's just part of caregiving, but there's emotional burden in caregiving. Whether you're a professional caregiver or a family caregiver, you're very likely to experience some grief as the person you're caring for declines. And...

anticipatory grief as well because you are very aware of the fact that it's very likely that the caregiving will end with the person passing away. So there's this emotional baggage that all caregivers carry through their mission of doing good caregiving.

So we try to help people become aware that they're carrying that because sometimes they don't even know. And that puts them at some risk for burnout, which is the thing we want to avoid. So we help people see what they're managing emotionally. And then we also encourage them because it's often a long mission that they're on of caregiving, that they need to provide relief for themselves.

Whether it's to bring in more hired caregivers or to use respite or to just be able to step back emotionally and do some breathing and meditation or take a walk and notice the nature around you as long as it's not freezing out. It's so important for the caregiver to be mindful that the task they are doing is full of emotional intensity.

Because of that, it's extremely important to manage that emotional intensity with relief. Whatever works, and I encourage all caregivers to find whatever works. Even a professional caregiver, maybe they play loud music in the car on the way home from their job. Anything that can bring some relief, a little bit of distance from that intense emotion. I know some caregivers feel guilty if they

Julia Mayer (32:40.608)
aren't feeling that intense emotion about their suffering loved one, but it doesn't help the person who's suffering. And it's not good for the health of the person who's doing the care. So that's sort of how we approach it. This is about doing the mission as well as you can, and that requires self-care. And for any individual, they just have to figure out what works best for them. We have lists of things they could do, and people already know what's on these lists.

But they have to try and see what gives them some relief so they can keep doing as well as they can.

Barry Jacobs (33:17.558)
Yeah, and just to pick up on what Julie was saying in our book, the AARP caregiver answer book, the longest chapter is on self-care. And as Julie said, I mean, people have their own particular means of relaxing, whether it be, as she pointed out, listening to loud music or listening to no music and just being quiet or reading or gardening or talking to friends, mean, whatever works. But many...

family caregivers as well as professional caregivers face certain barriers to self-care, foremost among them being time. Lots of us are very, very busy and the idea of taking time for ourselves maybe means to us that we're not gonna be doing something else at which we quote unquote should be doing. And so we'll put off taking care of ourselves because we wanna just cross more things off our to-do list. And then...

The other major barrier to taking care of oneself is guilt, especially for family caregivers who feel like if they take care of themselves or somehow the care that they give themselves, they're depriving a certain amount of care to the care receiver as if caregiving is a zero sum game where there's only so much care to go around. And what we try to help.

family caregivers understand is that when they take care of themselves, they're not lessening the amount of care that they can give to their family member who needs care, but they're actually increasing it because by refreshing themselves, just replenishing themselves, they then have more energy and more care to give. So they improve the quality of the care they provide their care receiver, not somehow cheat them of care that that person needs.

Tiffany Robinson (35:08.139)
Julie and Barry, I want to thank you both for sharing your expertise and your insights with us today. It's been very valuable. Barry, before we close, can you share with us where our listeners can find the caregiver answer book?

Barry Jacobs (35:23.956)
Yeah, the AARP Caregiver Answer Book is available actually on the AARP website. It's also available through the publisher, Guilford Press, and it's available wherever books are sold. Amazon, Barnes & Noble, Bookshop.org, wherever you like to buy books online. And many bookstores are also carrying it.

Tiffany Robinson (35:45.179)
Great, thank you so much to both of you for joining us today.

Julia Mayer (35:49.016)
Thanks for having us, Tiffany.

Barry Jacobs (35:50.794)
Yeah, thank you so much, Kevin.