Why Caregivers Feel Like They're Failing with Dr. Taylor Rush — Full Episode Transcript

You are giving 100% of what you have. And on any given day, that might look a little different. And so how do we make sure that in this process, you are taking care of yourself because that's needed. You have to check your own pulse before anyone else's.

When caregiving feels overwhelming and the system feels impossible to navigate, this is your guide. Here, you'll learn ways to navigate long-term care planning, find real support for caregiving, and prepare you for the road ahead. I'm your host, Lindsay Friedman, and now you're not in this alone. Let's get started.

Hello, and welcome back to the Caregivers Compass. Today, I'm pleased to welcome Dr. Taylor Rush. Taylor is a clinical health psychologist and director of behavioral health services at Cleveland Clinic's Center for Neurological Restoration. She works closely with individuals living with movement disorders and their care partners. Her time is dedicated to helping people navigate their diagnosis, manage mood and anxiety, improve communication, and build practical skills for daily life.

Her work integrates mindfulness and behavioral strategies to support both emotional resilience and physical wellbeing. Taylor is also one of the brains who helped come up with care scoring and care recommendations on LTCareNav, as well as one of our great champions of Care Bloom. She's also writing the foreword on my new book, The Questions That Matter, A Family Guide to Aging, Money and Care. Plus, this is the best part, she's one of my favorite people and closest friends. So welcome, Taylor.

Yay, thank you so much for having me here today. This is the highlight of my day. I'm so excited to be here.

I am so excited to have you. And so it's also kind of sometimes a little weird to do interviews like the first intro with friends, because you and I have so many conversations and have talked about all of these elements. So I know what an amazing doctor you are and how you help your patients. But I've also gotten to learn a lot about how you help families and the care partners. So on an average day, what does that look like? Where do you spend your time and how do you help guide those families?

I would say a lot of times my entry point is with the patients themselves that we treat. And I may have a patient that is accompanied by a spouse or an adult child or some other family member who is there as an adjunct or there as a support. And often when they bring someone, I will direct questions towards them as well, even though they weren't planning on answering anything about them. I will say, so how are you doing? What's going on for you with all of this?

And just to allow at least some open-ended opportunity for them to chime in. And some often will defer and say, oh, I'm doing fine. Everything's fine. Let's get back to them. And other times, it's an opportunity for them to actually talk a little bit about how they're feeling. And then that can sometimes be a nice segue for them into discussing ways in which we can support them in addition to their loved one.

And so we may end up being able to set them up with specific services through our social workers or through one of our psychologists, including myself or one of my team members. We have two other psychologists on our team, to make sure that they are getting the support that they need. So we may see folks individually, we may see them as part of that family unit, and they'll come in with their loved one to discuss things that they're both trying to work through together with chronic illness issues.

And then, you know, something that is one of my favorite events of the year is we also have a care partner symposium called Care Partner U, where we have care partners come in for, usually it's about a half day, to allow them an opportunity to learn and be with other care partners and ways in which they can best support themselves, know what resources exist, and make sure that they just feel like they can keep their head above water.

And what's really cool about that — so this is specific for our Parkinson's care partners — is that they can bring their loved one, especially if they do have some physical needs where they cannot be unattended. So we have a room for the individuals with Parkinson's and we have a room for those who are care partners so that that way they can come without concern about how their loved one will be taken care of during those six hours. So we're really trying to expand some of our opportunities for helping care partners through these symposium education type events.

We also have individual therapy services. And then we're also starting a few new support groups, both in-person and virtually. So we're really doing our best to make sure that caregivers know that they're important too, and their well-being and their health is integral to the well-being and health of their loved one.

I actually have attended this with you and gotten to see what an amazing program it is. And I think your department is doing a better job — I don't have a lot of experience watching other departments do this, but you guys do such a great job supporting care partners in a way that brings them together. And how much have you seen that this support system helps care partners on their journey?

We do get quite a bit of feedback after these events. And luckily, it's mostly good feedback. And we get some good constructive comments, too. But for the most part, what we hear from folks is that it feels good to be seen and to understand that they're important, too. And in some sense, there's some permission giving that they can talk about their concerns, they can talk about their needs, and to be able to meet others who are going through the same journey helps to validate what they're going through themselves.

And so most people leave those events, one, better informed as to things that they can do for themselves as a care partner, not just how to be a better care partner to your loved one — because I think that's a lot of care partner events that you may see is how to be the best care partner, but really, how do you take care of you. And so that's truly our focus.

So I think they leave feeling like, I realize I am important. And it's so wonderful to see an organization highlight this and make sure that I am getting my needs met in the midst of this journey. So that's something I just — it's incredibly fulfilling.

Every year presents new challenges with putting it on, but we do it as a labor of love because truly we understand the importance of being able to offer an event like this, because you're right. There aren't many other places where it can be found.

And I love that you're doing this because they do feel like — I talk to caregivers all the time and I've not met one that is not overwhelmed and stressed out and feeling like they're failing or they're doing something wrong. So when you meet a care partner who's like at their wits' end and has no idea that they feel like they're in this deep hole, what's kind of like the advice you give them?

I often will make sure that they recognize there's some very good reasons why they feel the way they do. I think a lot of people, when they start to feel overwhelmed — because truly, no one person can have enough resources to cover everything in this situation of caregiving. It's just not a possible task. And so a lot of times they feel because they're overwhelmed, because they're stressed, they must be doing something wrong. They must not be good enough. They must be failing in some way.

And so the first thing I want to make sure that they understand is that that is absolutely not true. They are doing the best they can with the resources that they have. And so just to start from there and say, you are giving 100% of what you have. And on any given day, that might look a little different. And so how do we make sure that in this process, you are taking care of yourself because that's needed. You have to check your own pulse before anyone else's.

And then how do you recognize what resources may exist around you that you can access, that you can use, that are going to be helpful as you continue this journey? Because truly, no one can do this alone. And I'm finding, and I wonder if you find the same thing, that it takes a long time for a care partner, a caregiver, to ask for help, and they're missing out on a lot of resources.

Are you finding kind of the same thing — that they don't even know what's available, or they just feel that they're not important enough in the situation? And how do you kind of address that with them?

One thing that I find is that, so yes, I agree with you that often they don't ask until they absolutely have to because they're on the brink. And when I talk to people about it, like, why haven't you asked? What are the barriers to that for you? And one thing that comes up a lot is people saying, well, everyone else has stuff too. Everyone else is really busy. Everyone else has their own problems. Like, I don't need to add to their burden by asking them for help. So there's a lot of this protection of others in a way, because they don't want to add to anyone else's burden in the midst of their burden increasing over time, their responsibilities mounting.

And so I'll usually follow up with, so if someone asked you for help in some way, do you feel that's a burden, or is it something that you're happy to do? They go, I'm happy to do it. I enjoy helping others. I'm like, huh. So what's the difference there? You know, what's the double standard there?

And so sometimes that kind of helps people take a step back and realize maybe there are individuals in their life that do want to help, and perhaps they just don't know how to help. And maybe they haven't necessarily asked for help, even in small ways. And so I will often have them kind of take a step back and say, what are these things that you could use some help with? Maybe we can start with an ideal circumstance of what you would want help with, and then let's pare it down to something that might be smaller and more realistic right now and what that needs to look like. And is it from someone that you know in terms of a relative or a friend, or is it someone that perhaps is in the professional community?

Perhaps there are ways in which to access resources that you didn't even know that you had the ability to access. And so that's sometimes where our social workers will come in to help connect people to those right resources. And that's usually where we start — just even assessing what those needs might look like and what you can delegate or let go of that really isn't integral to you having it to be you every day. And I think once people make an initial ask, a small ask, they realize that the world doesn't spin off its axis and everyone thinks that they're a horrible person. And they realize, okay, maybe this isn't so bad. Maybe this will help. And maybe this will not only help me, but my loved one that I'm caring for.

I think that is really important, because they do — you see a lot of people who are taking that burden on their own. But I've also seen it in cases of like, they're doing this, they're choosing not to ask, but then there's almost sort of like a resentment for other family members. And I see this more in like a sibling kind of association, like adult children. Then there's kind of these like family quarrels of who's doing enough and who's not, right? And sometimes it is just no one's asking. But how do you kind of navigate those really difficult family dynamics to try to make sure that everyone is supported in that partnership?

Yeah, it's one thing when it's a dyad relationship of a care partner and the person that they're caring for. But then when you start to net in the family dynamics, it gets a lot hairier. And what I find oftentimes is that whatever family dynamics were there prior to this caregiving dynamic are now much more exposed and they're much more apparent.

Maybe in a sibling structure, there's always been the more responsible one and the ones that maybe were less so. And now you really see that highlighted as the responsible one is taking care of mom or dad and the other ones aren't doing as much, because there's already the expectation that, you know, Pam always does that anyways. She's always the one who takes charge. So, you know, if I do nothing, she's going to do it regardless.

And so you see these dynamics that were often at play well before this situation, and now it's just more prominent. And I think resentment is a very common emotion, and often an unspoken one. And it tends to erode relationships because there are these expectations of, well, I have to do it anyways. I just got to suck it up and do it because, you know, Tom's not gonna do it because he's never done anything for this family. And so here we go again, I'm the one doing it because if I don't, no one will. And so it's very common to see that.

And then sometimes that resentment ends up channeling through the person that you're caring for. And it doesn't mean that you don't love them. It just means that something is out of balance. And usually what that is, is that that person's needs aren't getting met. Resentment usually is spawned from, I have to do all these things to the sacrifice of my needs and no one seems to care.

So how we handle that is we have to talk about things. If you don't talk about it, it's never going to change. You can't expect the person to read your mind and make a new expectation after years of a certain family dynamic. And so I think that you kind of have to — the person who's experiencing resentment has to get curious and say, you know, what is this telling me? What is this emotion telling me I need more of? Do I need support from other people? Do I need rest? Do I need at least some acknowledgment for all the hard work that I'm doing?

Use that emotion of resentment as information, and then you have to talk about it. And so with families, we talk a lot about ways to engage in assertive and effective communication — how do we talk in a way that doesn't heighten defensiveness or increase kind of persecutory statements? How do we talk in neutral ways that help us to make sure that everyone's needs are acknowledged, and ways in which a family dynamic, a family system may need to change in order to ensure everyone's needs can be met in some way. So without talking about it, it ain't going anywhere. And so we have to start talking about it before anything changes.

Yeah, and that's kind of one of the things with families. And even in the book, it's like it always kind of starts with question too. Like, why am I feeling this way? And then what do I do with this and how to bring it up? And I think when you give families advice on these conversations, you gave some really important tips there about how families can do this, because I think they're some of the hardest conversations you'll ever have to have.

Now, one of the other things that I've seen happen, and it's typically the person who's taking control, that person we were just talking about, right, who is now controlling the situation. And let's just say it's a daughter and she's taking care of mom. Have you seen that that daughter-mother relationship in time when it becomes truly caregiver-care recipient and not looking at it as a care partner — do you see those like primary relationships decline? And if so, what do you do to kind of bring them back?

The relationships can definitely change. And as daughter is giving more and more of her time and energy to caring for mom in this particular scenario that you've outlined, it often means that there is an imbalance of that person being able to take time for themselves in some way. And maybe, and I've seen this happen, where adult children have to change jobs or go down to part time or stop working altogether in order to care for their aging parent.

And so there is a lot of sacrifice and some grief associated with these transitions that they maybe didn't envision for themselves and didn't necessarily want, but the scenario has demanded it. And they love their parent enough to make this transition. And so we know that there is a bedrock of love for this individual. But it doesn't mean that there aren't some layers on top of that. And so we can see there be strain in the relationship.

We can see that sometimes, depending on the situation that's going on with mom in this scenario — so does mom have dementia? Is mom still cognitively intact? Because sometimes that can change a lot of what's demanded of daughter. And sometimes what I see in individuals with dementia is their insight starts to wane. So they don't really fully appreciate all of the changes and sacrifices that daughter has made. And so that can leave daughter feeling resentment and feeling lonely, even though they may live in the same house.

And so often, in that scenario, if there is cognitive decline in the parent, then a lot of times it's the person who's caring for them that needs to kind of reconcile that for themselves. And sometimes that means in order for me to have a mother-daughter relationship that I want, we need someone else coming in to help, because if I'm the only one and I'm always the one who has to make sure everything gets done in terms of shower and dressing and eating and meds and everything else, it means that you can't be the daughter. You have to be the caregiver.

And so what I find is when people are able to introduce a helper, a home health aide, someone who can help with some of those other things, it means that daughter can be a little bit more of daughter again. And in situations where perhaps the parent's cognition is still intact, there's a little bit more room for us to have a joint conversation about what care needs may look like, what the other individual, the person who is aging may need, and recognize that they may have their own fears about what bringing someone else into the house may look like and why they might be scared about that.

And so, you know, how do we talk through some of those insecurities, some of those fears about new transitions or the unknown so that that way both people can acknowledge the emotional experiences of this journey, because everyone's feeling something. And the more you can at least appreciate what the other person is going through, sometimes that means that you can be a bit more connected and on the same page.

I think that's so important to kind of remind people that, especially when there is no cognitive decline, that there's a chance that your care partner, the person you're caring for, is not happy about the situation at all and doesn't want care. And I found that, because I've been with some older adults even just recently, where she was so wobbly and all I wanted to do was carry her bag and hold her hand on the step. And she was like, I got it. And I'm like, oh, she's going to fall.

So how do you tell care partners to kind of navigate that gingerly where you're not trying to overstep and you're still accepting the fact that you understand that? Like, how do you navigate that with somebody who needs care and doesn't want it?

What I tell people is, again, if we're working with someone who has cognition intact for the most part, allow them to ask you for help. And so usually I have this conversation jointly with the person who needs care and the care partner. And I say, so one, care partner, you need to trust your loved one to tell you when they may need help. And loved one who needs the care, you need to be able to ask for help in a situation where safety might be endangered. Because to me, that's the threshold.

If someone takes a little longer to get their shoes tied, if someone may take a few extra moments to get down the stairs, okay, let's give them that grace and allow them to do those things, because in a lot of ways, if you don't use it, you lose it. So we do want them active. We do want people to engage in activities of daily living as they're able, but the threshold is safety. If it is a situation where there is a concern for safety, so if someone's real wobbly. Now, sometimes they can be wobbly, but it doesn't mean that they'll fall. It just means that they're wobbly.

In other situations, people may get very indignant. It doesn't matter how much of a follower they are. They don't want the help. And that's a tough situation to navigate. But it's often at a core because the person just so desperately wants to hang on to their independence. And they are having a really hard time accepting that their body is changing and their needs are changing.

And so often I will have conversations with that person about these changes that are happening. And we kind of draw out the fact that, but if you do ask for help and you do get some assistance with these things, one, it may decrease your risk of other injuries that would really diminish your quality of life. And two, it might mean that you actually get to do more than what you're doing now.

And I have this conversation a lot around assistive devices, so people who are refusing to use walking sticks or canes or walkers. And I say, but what if it means you get to do more? What if it means you get to go out more, do more of the things that you enjoy because you have this device? So it's not limiting, it's actually enabling. And usually if we can show people ways that they can maintain independence in some meaningful ways again, that's safe, they can often be amenable to help in other areas.

That's such a great reframe of both that — and actually, that'll help me now, the next time I'm with this lady, I'm going to wait till she asks for help. And yeah, it's a very delicate scenario that requires some emotional intelligence to kind of tap into how to talk to the person in a way that isn't going to result in just a hand in the face, you know?

I mean, and this whole thing is really about communication and understanding that probably there's so much love that's happening in these care partner relationships, right? And realizing that is the initial thing that this all starts from, and keeping that at the core and giving space for everybody to have their feelings.

Exactly.

So if you could leave everyone, primarily care partners, with one bit of information, what would that be?

I would say, again, remember that your needs are important and you're going to experience a wide array of emotions as a care partner, and none of them are bad or wrong. Resentment is not wrong. Anger is not wrong. To feeling sadness, feeling anxiety, feeling depressed sometimes — these are all very typical experiences in being a care partner.

And the important part is to be able to acknowledge them, be curious as to why they are there, and then use that to help inform what needs you may need to address or have others help you address, because there very well may be others in your life or in your community that would love to help you if you know where to ask.

No, that's fantastic. I thank you so much for coming on, and I have like a hundred more questions, so you'll be back. So thank you, everyone, for listening.

All right, that's wrap for today. Until next time, remember, you're not alone. Take things one step at a time, stay centered and trust your compass. See you next time on the Caregiver's Compass.