Navigating Caregiver Stress and Guilt with Clinical Psychologist Dr. Genifer Goldsmith

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When someone is diagnosed with dementia, there's a lot of different trajectories I can go down. There's a lot of different factors that impact their prognosis. What we know is that one of the biggest factors, if not the biggest factor that impacts someone's progression or successful progression of the disease is caregiver support. Having a caregiver in their life having that support from a caregiver, having caregivers who are able to provide that support. Basically, what it comes down to is, the type of caregiver they have the type of support they have directly impacts the progression of their disease.

Hello, and welcome to dementia discussions, the podcast for and about caregivers. If you'd like to share your caregiving story with me, I'd love to hear it. Please call me at 310-362-8232 or email me at dementia discussions.net. Hello, and welcome to dementia discussions, the podcast for and about caregivers. I'm Barbara Hammond and I am so thrilled to welcome Jennifer Goldsmith my guest today. Dr. Goldsmith has her doctorate in clinical psychology and is working towards becoming a neuro psychologist, Dr. Carl Smith and I co facilitate a caregiver support group through the eastern Center at UCLA for Alzheimer's Disease Research and care. I must say that CO facilitating group with you this is a group for persons caring for people with dementia with Lewy bodies, co facilitating the group with Dr. Goldsmith has just been a total pleasure and treat, because we all learn so much. So, Jennifer, welcome to the show. It's great to have you.

Thank you for having me. And it's funny you say that because I cannot tell you how often I tell even patients I work with that I learned the most from the caregivers that I work

with. That's true. We do learn a lot from them. Yes. So I want to get right into what's been so interesting. That's come up again and again in our group. And that's the topic of caregiver stress. And I went ahead and looked up the definition for stress. And if this doesn't spell our caregivers, I don't know what that's stress is a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances. Now, our caregivers have so much adverse or very demanding circumstances, every day, every minute in their lives.

Well, we always say, planning for the implantable and how we plan for the unplanned will. You can't plan for them exactly the unplanned adversity continuous obstacles that come about and you just have to take it minute by minute.

Absolutely. Minute by Minute. It's so true. And we say one person with Alzheimer's, one person. Exactly. Because everyone is so different. And every day is so different. And you're on a roller coaster. And you think you've gotten to a new normal, and the next day, something's changed. Right? So if that isn't actually

waiting, that you're touching on right, which is really hard, it's very stressful.

Yes, very stressful, extremely stressful. And we see that in our groups. Well,

we know that often. Not always, often caregivers are partners, or for someone who's been with the person for a while. And as anyone ages, it is very typical that you crave more structure in your life. We also know that structure is really beneficial for cognitive functioning as we get older, as we age as you want structure. And as we know, it's healthy for us to have strict structure, you're put into this chaotic environment, that it's really hard to find structure. It's really hard to create structure.

Really good point. Yes. I guess that's why we talk about getting into some sort of adult daycare program, right, that provides there are five act structure that routine. Yes, that routine. Yeah, really good point. So I was thinking about our group and kind of what people talk about, That's so stressful for them. I was thinking kind of, generally speaking, it's taking on new roles that you haven't done before. Suddenly, you realize, oh, the taxes are due. Oh my god, like I've never done the taxes for us. Now I gotta tell After the tax guy, I don't know what I'm doing. I don't know what I'm asked, I don't know what I have to do for the taxes or the roof needs to be repaired like, I never dealt with the roof. What, and now you don't really, or the car, or right or you've never been the person to cook, and now you've got to get meals together. You know, I mean, it's like these roles that for decades, one person has been doing the other hasn't. The other is not really able to do them. And you're kind of find yourself, like, not only in the situation, but you're kind of in that alone,

you're in a very alone. And if anything else, the person who's in it with you sometimes thinks they can help or they can still do it. And so you're managing not only having to learn a new skill, and manage that skill, but also having to communicate to a loved one that they no longer can do it, which can be really

hard. Oh, yeah. Oh, my gosh, exactly. So they're thinking, Oh, they can still do it. Of course, they can still pay the bills, or they can still meet with the investment. Oh,

yeah, let me get in, let me do the taxes. And so you're managing they're wanting to help and communicating to them that they no longer can, which can also names cause behavioral disturbance and some hostility to managing that. And then also at the same time, with all of that stress that's now going on, sitting down with Okay, so how do I actually figure out how to

do this? And sort of trying to listen in when they're talking to like, their retirement investment portfolio accounts? You know, what's he saying to our financial planner guy like?

And it's also that gray area, we always say, with anyone who's diagnosed with any neurocognitive, progressive disease, right, you want to try and enable them with as much independence as possible. You want to have them maintain a level of independence, while keeping them safe. And so a lot of caregivers struggle with, well, I think they could still maybe do that, but I'm not sure. And I don't want to rip away their independence. I also don't want them to be filing my taxes. The next thing I know we owe$20,000, could they get it?

Yes, exactly. Exactly. So I think we see that we see spouses or even adult children realizing, oh, maybe my mom really shouldn't be driving anymore. That's a big one. If they can't really drive, how are they going to get to their hair appointment? Or how are they going to get to their clients or their rich game or just going to the grocery store and getting groceries? Oh, well, maybe they could still just go locally. But it's kind of dawning on you that your parent can't do really what they've been doing independently, right? their whole lives,

right? And then it's becomes a new question their quality of life, and you're like, I want them to still have the highest quality of life as possible, while keeping them safe. And how do I know I'm making the right decision

here? All of those things, and you're right, it's like taking away, you want to keep them as independent, autonomous as possible. But you are sort of ripping away that autonomy. And think about someone

who's, let's say, 80 years old, and has been driving since they've been 15 or 16 years old, and all of a sudden, you're reverting them back to being a kindergartener the way I've heard patients say that, like, You're treating me like, I'm five. And it's really hard as a caregiver to be the one who's managing those emotions, and managing that messaging of your right, I hear you have you are a great driver, and you haven't been an accident. Yes. And you're the one who's driven me for the last 50 years. And now I'm telling you, I can't give you the case. Yeah, hard.

Oh, my gosh, the stress that brings Yes.

The stress of you're trying to manage their emotions and being really intuitive of how you're how they're feeling, and also managing your own emotions, too. So like, that's also means okay, I have to do all the driving. Now, some carriers are like, I was never the one that did the driving, they always did the driving. And now I'm not really that comfortable driving, but I know I have to, or just the emotions of I know that they're upset. And I'm the one that said that, and I'm gonna upset them. And they internalize that even though as much as I will tell a caregiver, you didn't do anything wrong, and it's not you and even if they are mad at you, and if they're saying it's not, the caregivers often are still internalizing the words they're hearing.

Absolutely. And yes, they are kind of the bad guy in this. And the ones saying, Remember, the doctor said you really shouldn't be driving or whatever it is.

Yes, it's really hard because the messaging that often is given to caregivers and I agree, it's very important like the, to the to, like, take away things are meet them in their reality, right? So if someone is no longer in our reality, you can't tell someone to remember something that they don't remember. They never there, it's not there. It's on their head, right, meet them in their reality wherever they are. And the second thing is, do anything you can do not engage in confrontation. Which that means is it puts the work on the caregiver, right like just saying lines. Yeah, the patient cannot. They don't know what they're doing. They don't know. They're saying a lot of times, they don't mean what they're saying. And the only way to control a situation is the caregivers reaction.

Right? And so we're telling caregivers remain calm, even though you feel that that question 10 times in the last 15 minutes, act as if you never said it. Yeah, we are asking the impossible of caregivers,

right. It's how often throughout our lives I even know this though, as a young female, is we're told don't take the blame for something you didn't do. Don't blame me, right? Like, stand up for yourself, as a caregiver, take the blame. Don't accuse them. Don't try and get them to understand you can't reason with, like logic with them. So it's opposite of everything. You're told your whole life that you've now learned these new strategies for, like managing confrontation that you've your whole life have been told not to do?

Exactly. And honesty, honesty in a marriage, right? You've always been honest with your spouse or your parent.

Lying is okay. White Lies are okay. Or seems like deceitful, but actually, it's really protecting them. And you can tell yourself and be okay with my whole marriage. I was always trying to be honest with my partner, I would never lie to my parents. And now like, it's okay to lie. A little

bit. Yeah. To maintain their safety. Yes, exactly. So all of these things that we're talking about brings so much stress to a caregiver. We're seeing this in our groups, right? People are tired people are at the end of their rope. It's hard, that

are real. They have well, and they are valid, and they deserve the space they have.

Exactly. So then we usually hear as professionals, right, we're saying, Take care of yourself, which is the last thing that anyone has time to do

know, when you're managing someone else? 24/7 How do you time to take care of yourself?

24/7 Exactly. Like we joke about like, okay, it's sleep with one eye open, because like their spouse wanders during the night, or you know what I mean?

Like, oh, yeah, every they're always on high alert. Yeah. So here we go and say, Well, remember, take care of yourselves, like take time out for yourself. You said in group one day, there is actual evidence. There's been a lot of research and there's clinical stuff like, what is it? What your friend is saying that when someone is diagnosed with dementia, there's a lot of different trajectories I can go down. There's a lot of different factors that impact their prognosis. What we know is that one of the biggest factors, if not the biggest factor, that impacts someone's progression, or successful progression of the disease, is caregiver support. Having a caregiver in their life, having that support from a caregiver, having caregivers who are able to provide that support. Basically, what it comes down to is, the type of caregiver they have, the type of support they have, directly impacts the progression of their disease. Which makes sense if you think about it, simple things as when I say simple, they're not so simple, but medication management. So someone who can manage your medication, who has the energy to has the ability to someone who's going on walks with you. So they're getting some movement in with you, or they're doing things to keep you active. They're stimulating you, all of that requires a caregivers involvement, a caregiver who has the energy to do all those things. And not everyone has that type of support. And that's where we see the difference sometimes, as one of the factors that can impact someone's progression.

And how about in terms of the caregiver, themselves? Like,

this is a marathon, right? That is not a sprint, you don't wake up one day and run the New York City Marathon? Absolutely not. No one can expect to do that. You don't wake up one day and have all the answers of how to be a caregiver and how to figure it out. I really is day by day. And I think what it really boils down to, you know that old saying where you can only pour as much out of the glass that you have at saying Right? And it's so true when it comes to a caregiver Right. Like if your glass is half full, you can only pour half a glass, which means that your loved one needs that full glass and you have dwindled yourself down. You can only give him as much as you have to get. And so what you need to do is what do I need to do to fill that glass up? And what I often hear from caregivers is guilt. I feel guilty if I leave them alone, I feel guilty if I do something on my own, or I feel guilty if I prioritize what my hair appointment and I think what's really helpful is changing the language reuse around in the perspective of saying like that hair appointment is for their own good that hour to myself. So I can be a better caregiver to them to be more present when I'm with them. Because if I don't take that time, they end up suffering because I'm going to probably have less energy. I'm probably going to end up being a little more confrontational because my buttons are pushed a little bit quicker, right, I haven't had time to reset, to give myself some time to kind of just get what I need to fill that glass up. And so I think in those moments where sometimes caregivers can feel guilt, if they can recognize that what they're doing is actually for the loved one, because the loved one directly is impacted by the caregiver, and their ability to be present their ability to do all of those tasks that they need to do throughout the day. And you can only do that when your glasses fall not have full. Absolutely. And for a lot of people that means exercise, getting to their exercise class or doing whatever they need to do to feel less resentful. Coming to this feeling more energized and more positive, which most people do not feel. Now, they're irritable. And how many times when you talk about guilt, like they're guilty, because they've just unleashed or gotten irritated naps? Yes. Whether you even guilty from thoughts, they're having thoughts that like this is too much, or I shouldn't have to do this, or when is this going to be over here? And let me tell you, thoughts are typical. They happen. It's okay, they happen. Almost anyone would have those thoughts and like, the moment that the people are having them, if they're put in the role of being a caregiver, we hear that in group. Yeah. What I'm interested in seeing what's going to happen is, so we're about to see the largest percentage ever of older adults we've ever had. So 2018 was the first time ever that the population over 65, out numbered in percentage wise the population under five, right, so baby boomer aging population, we're seeing a lot more older adults. And with that, also, we're seeing an increase in dementia diagnoses, right? Because obviously, as we age, it's more likely, if that happens, I think we're going to see is how much more research are we going to have on the impact of dementia on the family unit. And so something that I think we're seeing with social media is that it's a lot more talked about, I'm just going to put in like relation to this new moms for a really long time. It was harsh that postpartum occurred. It was hotshots how how hard it was to be a mom and to be a full time caregiver and have your identity ripped from you, and have your role in life changed. That's now really coming to surface and being talked about. And I'm wondering if we're going to see that same trend with like social media and just more outlets. And with an aging population, if we're going to see that same trend occur with older adults.

I bet you're right. That's probably already happening. I'm interested to say, yeah, yeah, that's coming out more in movies, more on regular shows, or someone with dementia. Interesting, huh? I guess in group when we say to caregivers, take care of yourself. It's not just fluff. Like when we're saying, Put your oxygen mask on first. It's okay to do that. It's okay to feel a little bit selfish. Like being selfish is actually a good thing in this situation.

I always say being selfish is actually the most selfless thing you can do as a caregiver. So you feel selfish, and for so long, we're told this narrative that being selfish is not okay. But in these moments, being selfish is actually the selfless choice. Because again, it's in the context of it's for the patient, it's for my loved one, I'm doing this so I can be a better caregiver, a better partner a better child to that.

Absolutely. And if you're saying that directly impacts the trajectory of the disease, like the course of the disease.

Oh, yeah, 100%. Because think about if, if someone is no longer able to manage their own, we call them activities of daily living, right? If someone can no longer manage shopping to the grocery, they can't cook, they can't get to places, they need someone who's able to do that. And the less they have some able to do that the more they withdrawal from life, the less engaged they are right? Or potentially, the less that they're having, you know, their medication manage. They're having a good meals that are getting the the nutrition that they need. So all of that is needed to really keep them healthy, to reduce further, like vascular disease potentially, or further risk factors that could progress the disease that all falls on the caregiver, or falls on the caregiver, no question about it. So once someone has the diagnosis, it's like, okay, well, often a question is, well, how do we slow it down? How do we reduce the risk of further progression? And the truth is that there are a lot of things you can do. A lot of those things fall on the caregiver, especially as the disease becomes more severe.

Yeah. Which is absolutely more stressful as the disease progresses. So much more important that people take time out for themselves. Yeah, no matter how they can do it if you're bringing friends, neighbors, adult children. ran whoever a paid caregiver if you can swing that might come in and spell you for a while so that you can take a break.

Or if it's like even if you can pull in some more environmental ways of having video cameras around, so like maybe not to be in the room directly, or you have a safe alerts necklace, like God forbid a foul were to happen, even knowing that relieves some stress. So I'm not saying that you would leave your loved one alone, but God forbid if they were fell or something happened. Just knowing that you have preventative measures already set up relieves that worrying thought, what if something were to happen, right ID Bracelets, all of that can help relieve some of the caregiver burden. Yeah,

really good point, I just saw client yesterday, she doesn't sleep in the same room as her husband anymore. But she has a video camera target, you can get these things for not very expensive. And she has it by her bed and case, she can just make sure she doesn't have to be in the same bed or miss him. But she can see him in case and hear him really, too in case he gets up and wanders around at night. Exactly.

That really allows them both to get quality sleep because we know the brain needs sleep, we need sleep to function. And so if it gets to a point where you're getting better sleep by not sharing a bed, that's okay. Right? You're recognizing what do I need to continue being the most optimal caregiver that I can be? And also just the most optimal version of myself, we're talking a lot about, yes, it's helping for the caregiver. But the caregiver also has to have their own quality of life too, right? You're still your own person, and you want to build enjoy things, too. So you need quality sleep, you need to be eating well. You need to be able to doing activities that you enjoy. Like your yes, your caregiver, but your identity goes beyond that, too.

Absolutely. Absolutely. And if you're not getting those things, yeah, you come to the table irritable, and tired, and stressed and angry, so angry that you're not used to anyone, right? And oftentimes we say and grip, it's not what you say it's how you say it. Yes. So if you're super irritable, that doesn't matter what you're saying, you're saying charitably.

Even if you think you're using the sweetest words, the kindest words, if there is a tone of irritability to you, likely your loved ones going to pick up on that. It's that being really conscientious of the tone you use, which again, that requires the ability to manage your emotions, which means you need to have sleep, you need to have some of that space to really take care of yourself. So you can enter the space of your loved one, knowing that you can manage your emotions.

Yeah, so I guess the takeaway here, and we're just going to really drive at home is if you are a caregiver, leaves, take time for yourself. This is not just fluff. This is based in sound science. Take time for yourself.

Absolutely. And when I say that, too, I think it's really important with caregivers, that it doesn't mean it has to be two hours, because that can be really overwhelming. Even if you find 10 minutes to go on a walk outside, get some fresh air 10 minutes to listen to an audiobook that you enjoy. If you can find these breaks. Yes, of course, ideally, you would be able to like do a full activity. But if that's just not realistic for your situation, find what is and build in the time. Start small and build up from

there. Really good point make it manageable. Yes. doable. Building into your day. Anyone can find 10 minutes in a day, turn on something soothing, something caught something funny. Whatever you can do.

Whatever break Yes, take a break, to take a break where you're not a caregiver in that moment. You're not thinking about being a caregiver or not taking on the stress of being caregiver, you're just being yourself.

Well, thank you. I would love to have you back to talk about some of the other things we've touched on in group. I hope you're open to that. I would

love to come back and talk more about I know there's so many topics we've touched on and I would love to speak about them.

Great. That's great. I will have you back. Dr. Goldsmith, Jennifer Goldsmith, it's a pleasure to have you co facilitate group with me every two weeks and it's a pleasure having you here today. So thank you.

Thank you for having me.

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