Caregiver Burnout in Parkinson’s: Why Rest, Boundaries, and Support Matter

[00:00:00] This episode is brought to you by Crexont. That's Crexont. Carbidopa and Levodopa, extended release capsules. To learn more, visit Crexont.com. That's C-R-E-X-O-N-T dot com. I'm just tired. So when carriers say that, they're rarely talking about lack of sleep. It's almost always a polite euphemism used to mask the profound multidimensional state of depletion that someone's feeling.

[00:00:26] There's four ways that I look at it. Erasing one's identity, cognitive overload, profound isolation, and the somatic or physical toll.

[00:00:52] Today's episode is not just for patients, it's for the people quietly holding everything together. Caregivers are the backbone for Parkinson's care, yet they're often the most exhausted, overlooked, and unsupported. This episode is about burnout, boundaries, as well as reframing the need for space. The primary challenge is helping caregivers realize that rest is a medical necessity, not a luxury.

[00:01:15] When caregivers step away, they're not abandoning the patient, they're replenishing their patients, their physical strength, and their emotional bandwidth. That's required to provide the safe, high-quality care. Human beings cannot pour from an empty cup, and an exhausted caregiver eventually becomes a second patient. I'm Dr. Sandeep Sikhar, and I'm the caring neurologist. Let's dive in.

[00:01:37] Hi, Dr. Thakkar. I'm so happy to be here with you speaking about such an important topic that is the caregiver behind the patient with Parkinson's. We often talk about how to manage the disease and how to bring more quality of life to those people living with Parkinson's, but it's so important that we dive into the topic of the caregiver because they hold, like you mentioned, they hold everything together.

[00:02:06] And so why do you see caregiver burnout so often in Parkinson's, and why does it go unspoken? Well, caregiving is a 24-7 role. There's the emotional labor, the physical labor, the chronic unpredictable state of Parkinson's that makes a change.

[00:02:24] So we see that also caregivers minimize their own needs. So the way we look at it is caregiver burnout occurs in an alarming frequency in Parkinson's disease, just based on that relentless combination of the physical, the cognitive, the behavioral demands that progress over years.

[00:02:40] And so with Parkinson's, again, there's this profound also like layer of cultural guilt, social isolation, the medical systems that are set up, they inadvertently prioritize only the patient and overlook the partner. So these are multiple layers that affect the caregiver. And, you know, when we think about just Parkinson's, it's a perfect storm for chronic cumulative exhaustion. Patients, they sometimes feel good and that's based on the on-off medication rollercoaster.

[00:03:09] So caregivers, you know, they manage that complexity of like that highly rigid dosing schedule that patients need. They watch their loved ones fluctuate rapidly between the mobility on state and then the sudden freezing of off state. And so that caregiver, so to speak, burden becomes a constant hypervigilance. You see that patients have their own sleep fragmentation and that again disrupts their loved ones.

[00:03:35] And so patients with Parkinson's have that nightmares, they have their night terrors, they get a lot of tossing and sleep. They need to go to the bathroom at night. Maybe over time they require assistance. And so even the caregiver, they themselves cannot sleep and they're concerned about risk of falls and that becomes ever so exhausting. There's also the behavioral and personality shifts, the non-motor issues, the depression, the severe apathy that comes with having lack of dopamine.

[00:04:01] What's the most difficult stage in Parkinson's for a caregiver to manage or to deal with? I think there's two stages of Parkinson's is the initial stage early in the disease day when they get the diagnosis. Because then, you know, you've already become now a caregiver. You're no longer a loved one. You're kind of like, oh my God, like my spouse has Parkinson's. And then there's so many ruminating thoughts.

[00:04:27] But one of the realities is the difficult part is when there's Parkinson's related dementia, when there's the associated hallucinations. This is where the caregiver is more fearful about, you know, could a person fall? Could they be misinterpreting things? Are they seeing things that are not there? There's also delusions that exist in that stage of Parkinson's. And the delusions exist that, you know, there's infidelity.

[00:04:51] So the patients themselves conjure up these thoughts that come about that, you know, my spouse is cheating on me. And these, again, are very common in Parkinson's related dementia. And associated with that, usually a lot of like sleep disturbance, they get woken up, they see things that are not there. They're trying to walk around and they may fall. So, again, I think that the Parkinson's disease dementia, which is much more advanced in the disease state, you know, that brings on a lot of caregiver burden.

[00:05:22] Physical, emotional and cognitive burnout usually occurs in that state. And that's when we like really have family members and patients be aware of this because we actually have medications that exist to help reduce those Parkinson's related dementia and psychosis events. And then the opposite also is the patients when they're getting medications of dopamine, maybe they feel impulsive and their behaviors can be erratic.

[00:05:47] And that creates a psychological burden also on the caregivers, loved ones, family members, children. So, again, Parkinson's isn't like a terminal disease that we think of as fast, like ALS. It is, again, a slow multi-decade marathon and the caregivers have to step into a role that gradually expands and changes over 10, 20, even 30 years. And that does erode their own independence.

[00:06:10] So, we do think that, you know, it's just not easy to manage, you know, with patients with Parkinson's, even for myself. I take on a lot as I'm trying to care for patients. And at each stage, there's a different degree of stress that we all take on. And we kind of have to understand, like, why is patient deteriorating? And is it really just a patient or is it the disease or is it the caregiver burden?

[00:06:35] Because caregivers are trying to take care of their patients, but maybe they can't keep up with those demands as time goes on. So, those are type of things that we've seen. The question you asked about why does it go unspoken, that's a very difficult situation. And I think there's a hidden epidemic there that's deep-seated psychological situation of grief and guilt. Partners experience what they call like a silent mourning.

[00:07:01] They're grieving about a patient at their relationship that they once, you know, had someone who was so physical and active. And now it's hard to abandon that loved one while they're seeing them deteriorate. And then there's the good patient presentation that early in the disease, patients look fine. They have enough energy. They can functionally do well in certain settings. But this leaves the caregiver feeling like isolated that, you know, maybe at the doctor's visit, the patient looks great.

[00:07:31] But at home, why is it being so chaotic? What's going on behind doors? And then there's that role of erosion that spouses transition from being romantic partners equals confidence to now being medical managers, drivers, physical assistants. And it kind of takes on this burden and betrayal of the marriage and the family vows. We kind of tend to look at the patient. And then the person that's caregiving for the patient is the person that's okay.

[00:07:59] So you kind of overlook how the person's doing because they're the ones that are well. But then at the same time, they're also living the disease very closely. And like you mentioned, they have to do all these other things that weren't part of their lives. And they have to adapt to a new way of living, like a new life. They have to change their lifestyle as well, right? Totally.

[00:08:22] And I think that a lot of them do become really strong and take on this really strong character to be able to be there for their life. And they take on that role and they're strong. But it's a lot of demand, a lot of pressure. A lot of people, you know, they don't necessarily ask for help. And as we go through a lot of these topics today, we'll see that, you know, there's this endurance that we have.

[00:08:50] But then it's the natural human nature that, you know, we fatigue and we're trying to still maintain that relationship. Or maybe the caregiver is still working. You know, there's so much that's still going on. Many of my patients come in, the spouse is taking on maybe new roles. Maybe they want the cook and now they have to take on the role of cooking or vice versa. Maybe the patient was the breadwinner.

[00:09:12] And now that the spouse has to take on some part-time job, there's so many different changes that go on that, you know, even as the roles of like doing taxes. I've seen a lot of family disputes because now the patient can't do the taxes and the spouse has to take on this. And maybe they don't know where the passwords are. And there's just so many things going on that it's a role reversal. Yeah, it's changing for everyone, right?

[00:09:39] And when caregivers say, I'm just tired, what do you think they're often experiencing? That is a heavy sentence. I'm just tired. So when caregivers say that, they're rarely talking about lack of sleep. I see this in the clinic all the time. It's almost always a polite euphemism used to mask the profound multidimensional state of depletion that someone's feeling. You know, it's hard for them to articulate.

[00:10:09] And so there's four ways that I look at it. And there's erasing one's identity, it's the cognitive overload, it's profound isolation, and it's the somatic or physical toll. So let's dive into the first part, which is the emotional or identity being erased. So there's role captivity, feeling permanently trapped in that role that they never chose, where, you know, their identity, their hobbies, their personal desires are entirely swallowed by the illness.

[00:10:37] And the ambiguous loss of mourning, living with a person in front of them, that they're grieving the loss of their romantic partner. Their retirement plans have changed. Their shared future that they expected is now a facade, right? So it was maintaining that exterior functional kind of beauty that they had and envisioned, and now it's being taken away.

[00:11:00] So that kind of is kind of emotionally drained for a lot of my caregivers that I come across in the clinic. You know, I had a patient actually even today saying like, well, can the patient and myself go to Hawaii? And the patient was having a really tough time with walking, and the patient had an infection a few weeks back, and then went to a skilled nursing facility and finally is coming home, but still needs home nursing.

[00:11:26] And there's that burnout, but they had this dream and plan to go for the summer break. And it just looks and seems too arduous of a task to travel, get on a plane and go five hours and then, you know, be a destination that may be a beach that could be very difficult for even the patient to enjoy.

[00:11:42] So there's a lot of compassion fatigue that we see that occurs that you really want, you know, the loved one to continue to have the empathy, but now you get numb to it and you become like a robot going to mechanical motions of loving a family member. And then there's cognitive overload. We also call that the invisible ledger. It's the hypervigilance, the existing fight or flight state that someone's in. They're constantly listening for a fall. They're tracking medication times. They're monitoring for mood shifts.

[00:12:12] And they're always trying to anticipate when's the next crisis. So their brains always, you know, in a, in a never rested state. So then they start getting decision fatigue. They're making multiple decisions, medical, financial, logistical choices on behalf of someone else. And that's maybe not easy for them to do. And that can result in injury for themselves, let alone for the caregiver. And then there's profound isolation being a caregiver. The social shrinkage, so to speak.

[00:12:39] It's watching the social circle evaporate because maybe it's too difficult to leave the house. Maybe it's because friends stop inviting them out due to repeated cancellations. And then there's this lonesome partner phenomenon, feeling entirely alone in a crowded room. So to speak, when, even when you're surrounded by, you know, medical staff, family members, the ultimate physical emotional accountability still rests solely on their shoulders. So they're kind of still always carrying that burden.

[00:13:06] And then that becomes a physical toll so that they become physically deconditioned. There's higher rates of chronic muscle fatigue. There's chronic high blood pressure. There's weakened immune system. And this is usually from what we've seen caused by years of neglect of their own doctor's appointments, maybe missing meals, not exercising for themselves. And there's a bone deep exhaustion.

[00:13:31] I mean, there's actual type of cellular fatigue that even a 12 hour sleep cannot really fix. So those psychological stressors remain and they wait and they kind of take a toll even when the body's supposed to be resting. Well, there's, there's, there's a lot going on.

[00:13:50] Like you mentioned at the beginning of the episode, it's a 24 out, 24 seven job and there's love involved and there's true care involved. So I think that it just, that's why it makes it that much more complicated emotionally. Right. Yeah. And there's, there's, there's in the clinic when patients come in and they come with the caregiver.

[00:14:16] Um, you know, they got a list of different things they want to address because sometimes they may forget. So they, they now start writing things down. Uh, or I know it's becoming very overloaded when maybe now the children are coming in with the appointment with the patient as well, because, you know, the caregivers are looking tired. They're fatigued. They're asking for help. And then, so we do see that again, it becomes even a generational demand.

[00:14:41] And why do you think, um, caregivers feel, feel so much guilt for wanting to rest or to, you know, they, they have troubles asking for help or space even. Support for this podcast comes from Crexont Carbidopa and Levodopa Extended Release Capsules.

[00:15:05] If you'd like to learn more about Crexont, ask your healthcare provider or visit crexont.com where you'll find full product information, including the prescribing information. To learn more, visit crexont.com. That's C-R-E-X-O-N-T.com. That's a great question.

[00:15:27] Caregivers experience intense guilt for wanting to rest and help or need that space because it's complex internal ideals, the social expectations, the psychological impact of, of the chronic stress. There's a, there's a myth there that exists of being the perfect caregiver. It's an obligation trap where caregivers often believe that loving someone means they're suffering for them. They equate wanting space with the lack of love or commitment. It's a flawed standards that exist.

[00:15:55] They hold themselves to impossible standards of flawless patience, absolute selflessness, constant availability. And that's, you know, not the way it should be. There's also the mindset I hear that no one else can do it. And that's a belief that actually convinces themselves that they're the only ones to truly understand the patient's intrinsic and intricate needs. And then it's hard to like hand over the controls or feels irresponsible to do that. So those are the situations that we've seen.

[00:16:23] These are true psychological battles that people go through. And we see this in other disease states, Alzheimer's, and we see this with other neuromuscular diseases, MS as well. There's also the cognitive distortion or survival brain that the zero sum fallacy. That's in the caregiver's mind. Time spent on themselves is time actively stolen from their loved ones. And that's not true.

[00:16:48] They view like self-care as an act of selfish abandonment rather than a necessity of survival. There's that emotional blurring. Chronic exhaustion impairs their brain's ability to think rationally. They simply, like in a simple term, so to speak, is a healthy biological urge for space is mistakenly interpreted by a stressed mind or more like failing. And that's not true.

[00:17:12] And then it develops this resentment, guilt loop where feeling natural, irritational resentment about their situation triggers immediate, overwhelming shame. And that's, again, it's always this internal struggle that we end up seeing. So I think that if we could change those systemic pressures, maybe the performance expectations, have friends and family, you know, help and support. But what ends up happening, friends and family usually come in, they often praise the caregiver.

[00:17:41] It's like, you're a saint, you're a superhero, which then actually complicates things, right? That label creates this rigid pedestal and then people feel like they have to be held to such a standard. And that continues to be exhausting. And it's just human nature. But this is what we end up seeing, that it's those social pressures too. It's so important that you mention the fact that we often go to the caregivers and, you know, give them praise. And I think they do deserve it, right?

[00:18:11] Because it's not an easy job and involves so much of their time and their patience and their energy. But it's interesting that you bring this awareness to the fact that it just raises the bar even higher. And I've been the person that goes and praises my friend for caregiving to her partner.

[00:18:34] And maybe that's just realizing that that might not be helping because then she might be putting aside her biological needs just for trying to be this hero, like you said. Yeah. And again, I think it's important to recognize when someone's helping out and doing what they need to do and they have that duty. But also like just hearing them like, hey, do you need help? And that's a big part of it.

[00:19:00] Like I'm looking at the patient, but I'm also asking questions to the caregiver on a constant basis. But I'm a visual person and my movement disorders training makes me watch how the patient walks in. But I'm also actually watching the caregiver. Like I'm watching, does the caregiver help the patient up? Are they watching them in case they're going to fall? How are the comments, the banter between them? And, you know, does the caregiver look burnt out? Are they disheveled? Are they not taking care of themselves?

[00:19:29] Do they have nicks and nacks and bruises? So we end up kind of in the neurology world, especially movement disorders. I think it's something that we're ingrained in asking and making sure that the caregiver is okay. In fact, today I saw the wife of a patient and she was, you know, she was like reaching for the paper of the medications. And as she was reaching, she started shaking. And then so I kind of noticed her shaking. And then I started to watch her hand coordination.

[00:19:56] So I talked to her on the side at the end of the appointment. And I said, hey, have you been taking care of yourself? Is everything okay with your health and medications? And then I let her know that, look, I saw a tremor. Have you noticed that? And she said, yeah, I've noticed some tremor. And I said, well, maybe we should talk with the primary care doctor, get some blood tests, make sure that you're taken care of and then maybe get some imaging. And I said, look, if you need, you know, a neuro consult, let me know. But at the same time, these are the type of things that we see that we have to acknowledge how someone is doing.

[00:20:25] But it's okay to acknowledge that they're doing a good job, that they're performing like a saint. But again, those words that weigh heavy on someone's mind too. So like with everything, it's just important to be aware of how we express. Yeah, it's totally true. And what happens to patient outcomes when caregivers are burnout?

[00:20:53] So the carrier of a burnout is a real thing. The patient's clinical trajectory usually deteriorates and significantly. Certainly patients, you know, they depend on their care partner. They're the anchor for their daily health, you know. So if the caregiver's general well-being declines, then it becomes this domino effect.

[00:21:17] And so there's clinical research that actually shows that caregiver burnout peaks and several specific patient outcomes do occur. So number one is accelerated disease progression and symptom spikes. So there's loss of symptom control, like Parkinson's disease specifically, the rigid medication adherence, right? So we want to make sure that the patient doesn't go into an off state. We really want the timing to be very specific. So an exhausted caregiver is more prone to missing dosing of the windows that are needed and the timing.

[00:21:45] And that causes like a sudden motor crash, freezing episodes for the patient or even tremors. But it creates a stress contagion. And that chronic stress as a caregiver creates this body language, this fatigue. They lose their patience. And, you know, there's this emotional worsening anxiety that comes about, this cognitive confusion that we see.

[00:22:09] That's why a lot of medications in Parkinson's, when we can switch them from immediate release to extended release, or we do these continuous infusions or pumps, subcutaneous pumps that have existed. It takes away that burden of timing of meds. That's really helped a lot of patients and caregivers. But then also there's spikes in preventable secondary injuries. So we see increased fall rates, not only in, you know, the patient, but also we see that caregivers themselves, they're physically fatigued.

[00:22:39] They're distracted. They get brain fog. They may fall at night going to the bathroom. So we've seen like they've even tripped on walkers and wheelchairs. And then we see that burden also take hold on the actual patient. Then patients actually try to do more because they see that their loved ones are breaking down. We also see hygiene and skin breakdown, proper skincare, regular repositioning and meticulous hygiene is, is it takes a lot of physical energy.

[00:23:08] So as burnout transitions into a compassion fatigue, then you see that the basic care slow down. They're, they're leading to rapid development of painful pressure ulcers. And then there's severe urinary tract infections. And that's another thing that maybe, you know, there's a fatigue of, of hygiene and cleaning. So we see that kind of become a situation as well as the crisis of the ER visits.

[00:23:34] A lot of burnout with caregivers often early on, especially they miss or ignore early warnings of the patient infections or minor health shifts. And they lack the cognitive bandwidth because they're fatigued themselves. They're tired. And it turns out they miss things and becomes an emergency crisis as things just kind of spew and get worse. And then that's when we see these forced nursing home placements.

[00:23:57] Studies consistently have shown that the top predictor actually for moving a patient to long-term resident residential care is actually not the progression of the disease, but the breakdown of the caregiver's mental and physical health. There was actually even a paper, a landmark study published by JAMA, which is a medical journal.

[00:24:17] It demonstrated that elderly, spousal caregivers experiencing chronic emotional strain, they have a 63% higher mortality rate than non-caregivers. So there is even health risks that go and become fatal. This is so important to know. It's not only just neglecting the caregiver's biological needs, but it's just a potential hazard for everyone, really. Really, it is.

[00:24:45] And that's something we've seen in patients who have cancer. And there's such a high rate of even heart attacks in the loved ones, too. Or they've been diagnosed with cancer themselves later when someone passes. It's a toll for sure, physically. And so when people hear boundaries, they think distance or neglect, like we spoke about. What do boundaries actually mean in caregiving?

[00:25:14] Yeah, and caregiving boundaries do not mean emotional distance or neglect. They're kind of the structural scaffolding that keeps the caregiver intact so that you can actually continue to care. So instead of walls designed to shut a loved one out, boundaries are bridges and more designed to let sustainable help in. Without having boundaries, caregivers turn into a toxic system like martyrdom. There's resentment, and it destroys that relationship that is a caregiver and the patient.

[00:25:42] So what boundaries really mean and look like is, like you want to define, like, what is mine to fix and what is not. So, for instance, like a boundary would be recognizing that you can provide a safe physical care or loving environment, but you can't cure the disease. You can't control the progression. You can't force the patient to be happy. So it is like best to practice like this loving detachment, separating your own emotional peace from the patient's emotional state at that moment. If someone's upset, it's okay for them to be upset.

[00:26:11] You can't take on that burden. You can't just try to make them happy, but at the same time, understand what they're going through and know that you're there to support them. But you can't take on that stress too. And sometimes you have to have a boundary yourself of saying, okay, you know what? Let's talk this over with maybe a therapist. Let's talk to my, let's talk to the neurologist. Let's talk to a primary care doctor about this. You know, is there something that can be adjusted, but you can't take on that emotional burden right then and there.

[00:26:39] And every single time you want to like preserve self to sustain the other, so to speak. So what that means is when, with that type of boundary is you treat your own health and that's non-negotiable. And what it would sound like is I'm unavailable for non-emergency needs from like the hours of 2 p.m. to 3 p.m. Like I need to rest. So I'm going to, you know, take care of, take a nap.

[00:27:03] I want you to keep busy, whether it's watching TV or again, maybe it's something that's just relaxing for the patient. Or maybe that's the time when a physical therapist is over or other friends or family are over. Like you can set boundaries for yourself and then you want to protect the core relationship.

[00:27:20] So protecting small pockets of time when you're, when, when you're strictly like needing that break, for instance, you get your children or medical worker to kind of step in, delegate tasks, like make sure there's again a physical therapist coming in, make sure there's a nurse to help with bathing. You can't necessarily do everything. And, and if you are physically drained, then again, you know, you're going to get those aches and pains, but it's good to designate someone else to step in.

[00:27:49] To do those roles. And you want to create like these clear operational rules. So for instance, family members drop in unannounced. They may critique care. You know, patient demands are always constant. And then there's this nonstop attention for tasks that physically, you know, they, they think they can do for themselves. But, you know, the set, you want to set boundaries and that means creating firm limits around those expectations.

[00:28:16] For example, you know, for the family member, you say, if you want to comment on care routine, you must take over that weekend shifts. So I can step away, you know, let others know that something's going on to the patient. You want to say, you know, I'll help you button your shirt, but. I need to practice putting, um, I need you to practice putting on your shoes, uh, independently, like while I'm making breakfast. And these are type of things that, you know, like you don't just do everything for them.

[00:28:44] And just because you can do it faster and maybe take some time, you don't want them to, to lose that independence. Like they'll give up. Right. So you give them kind of finite things that they should still do or try to do to make sure that they feel independent and you're not taking on every single, um, burden of the task. And I think that's a very, um, easy thing to start kind of reinforcing at the beginning, right?

[00:29:11] Like you want to do when, when you're starting to care give for someone, you want to do everything for them to make them comfortable, to help out. But in the long run, uh, and like you mentioned, you get used to that dynamic and it's not because you want somebody to do everything for you, but you kind of forget that you're able to do it yourself, even if it takes you more time.

[00:29:35] So, um, it's important that you mentioned that and, and that, you know, um, caregivers are able to establish that or reframe that dynamic like you mentioned. That's very true. And what are realistic healthy boundaries caregivers can start setting today? The realistic boundaries do not require dramatic life changes.

[00:30:03] You know, you want to, you don't have to change your entire and reorganize your schedule, you know, start small. How these specific operational shifts are designed like for patient safety, maybe for like mental energy recuperation. So the way we look at it is this, this four practical boundary boundaries that caregivers can implement. First is like the do not disturb energy buffer. How it looks is like you ensure the patient is physically safe. Like they're in the bed or they're watching their favorite show or resting.

[00:30:30] You set up a timer and you step into another room and you just close the door. I mean, you just take your break, you know, and then make sure again that you let the patient know like, Hey, I'm going to be doing something for 30 minutes. I need to, this is non-negotiable. I need some protected time to do what I need to do, whether it's even a hobby or reading a book. The second thing is outsourcing the high friction tasks. So you draw a line around specific caregiving tasks that cause mental strain or physical or emotional distress.

[00:31:00] And I've seen this with patients, um, when they used to be the ones doing the financial paperwork or complex tasks or, you know, banking. And now they're, you know, the loved ones having to take over that. And it's too overwhelming. That's not what they were trained to do. They don't know all the passwords. They don't know how things were working. So now you delegate those specific pieces to a professional. You get the accountant more involved. You get a professional home health aid.

[00:31:26] You maybe get a mobile notary service where you ask other family members to step in. Or, you know, if you have an estate planner or a lawyer to help out, then you incorporate that. The third thing is communicating how and when family can help. So the stopping of the unannounced family drop-ins, the passive aggressive techniques. These are, you know, comments that are made also like vague offers. Let me know if you need anything. Like that's not going to jive with someone who is getting burnt out.

[00:31:56] So how that would look would be you treat your home like a structured environment, like a business. You assign specific tasks. You have family members do certain things in advance. And the patient's aware that, you know, other family members are going to help. And they're going to be there from this time to that time. And again, you run it very smooth and operational. So like how that would sound as a script is you would tell family members, vague offers aren't working anymore.

[00:32:25] If you want to help, like I need you to commit bringing the groceries every Thursday. Be here like 4 p.m. Start sitting with dad every, you know, Saturday morning. You know, help make breakfast. Whatever it may be. But these are, again, I think you have to be more direct. And then the fourth and last part about that is halting the learned helplessness. And what that means is refusing to do the physical task for your loved one that they're still safely capable of doing themselves. Even if it takes twice as long.

[00:32:53] And as I commented earlier, the way this would look like if a patient with Parkinson's can physically button their shirt, brush their teeth, you step back. You allow them to do it. Brushing in to do it for them to save time, it strips them of their own autonomy. And it doubles your physical workload. Like that's not necessary. So the way this would look again is I know it takes a little longer, but keep your hand muscles coordinated. Keep them moving. It's important. I'm going to go make the coffee. I want you to finish buttoning or I'll be right back and check in on five minutes.

[00:33:23] But, you know, it's got to keep that autonomy there. And we don't want to, again, make them feel in a weakened state themselves. And I'm assuming allowing the patient to do those kind of things, like continue to do the things that they can still do, even if it takes them longer, is good for them to keep their motor right abilities. Definitely.

[00:33:50] You know, I tell people you've got to maintain your hobbies and do it safely, of course. You know, like if someone can't stand and walk, they shouldn't be going to golf. But, you know, hand-eye coordination is really important. And there's things like paint by numbers, there's jigsaw puzzles. Like you've got to keep other things good that is fun and exciting, but it's also keeping the hand-eye coordination so that they can maintain those independent things of, again, washing their face, brushing their teeth.

[00:34:18] If they're keeping their hand coordination up with fun hobbies, it'll translate into also safety needs. And that's when the caregivers don't have to also be there to do all those tasks. And do you see caregivers developing their own health issues? Regularly. Yeah, regularly. And we see this in the situation where we see hypertension, sleep disorders, a lot of depression, anxiety. And these are, you know, again, severe. These are chronic.

[00:34:46] It's a phenomenon that you don't just necessarily see. Patients, you know, they may miss their own doctor's appointments. So we call this formally diagnosis caregiver syndrome. And it's a state of near total physical, emotional, and psychological exhaustion. So we end up seeing, again, cardiovascular, metabolic decline. Again, hypertension. The sympathetic drive is there. You know, they're always in that fight or flight state. They don't know how to take breaths.

[00:35:13] So you see this cardiovascular risk factors like spousal caregivers experiencing high levels strain face 63% higher mortality compared to non-caregivers of the same age, primarily driven by strokes and heart attacks. You see that there's metabolic disruption, which is sleep deprivation, poor diet choices, eating on the run. There's at least like insulin resistance, rapid weight gain or weight loss. And there's also higher rates of type 2 diabetes.

[00:35:42] We see that there is immune system suppression. There's impaired wound healing. There was actually a landmark clinical study that showed chronic caregiving stress significantly slows the body's cellular healing capacity. It caused minor cuts and surgical incision take 24% longer to close. It was also data that shows that vaccine ineffectiveness caregivers actually have measurable weaker antibodies to respond to viral vaccines.

[00:36:10] And that leaves them again, more vulnerable to infectious disease states. So we're seeing that it is going in multiple levels. We've seen it where like higher rates of shingles and flare ups as well. And then this musculoskeletal damage, there's vertebral lumbar injuries, assisting a caregiver mobility deficits because you're trying to pick up someone who's frozen or stuck in bed, trying to get them to the bathroom. There's chronic pain syndrome that exists from that routine, kind of picking someone up when

[00:36:38] they're like, you know, already like maybe developing rotator cuff issues. And again, someone with Parkinson's typically against 60, 70, 80 years of age, the spouses are probably of the same age too, right? So then they have their own chronic orthopedic issues and the neurological cognitive erosion. There's a lot of caregiver brain fog. And I see that with chronic sleep fragmentation.

[00:37:01] You know, we see that patients like have short-term memory issues potentially, but caregivers start developing these short-term memory issues as well. I've seen like when patients are writing something on like for clinic forms, maybe they can't write well, then the caregiver takes over the pen and, you know, does the writing duties for the check-in process. And now they're writing in the wrong date or they're mistaking some, something that they were supposed to write about medication.

[00:37:30] So you see a lot of errors and it affects, again, the caregiver just as much as it does the patient. And the last kind of neurological issues, the clinical depression, anxiety that caregivers go through, they experience actually like triple the rate versus general population. And that depression, anxiety is much higher and that really affects them, you know, deeper than one can actually fathom until they're forced into that role.

[00:38:00] So it's not just a psych, it can start as a psychological fatigue per se, and then it turns into physical. But it's super important to take care of that because then it can end up being two sick people or two people battling with their health rather than just one person needing help managing their disease, right? Yeah.

[00:38:28] We had this one patient, he's really advanced Parkinson's, 22 years with Parkinson's. He's on a Viola pump. He's been doing well, but still been declining. And has had some infections and things such as that. And the wife, I mean, she is, she said, this is her terms, like she's at her wits end. And I can see it, like she, you know, she, she's not, she's, she's showing a lot of anxiety.

[00:38:55] They moved to live closer to their daughter in San Diego. And, you know, they still drive, drive up to see me, but she's just over, overworked as a caregiver because she still helps her daughter, um, with watching their grandchild. Right. So, you know, there's this situation of like double duty, like you have to take care of the patient, but you're also trying to help the children by, by taking care of their children. So there's a lot that's going on there.

[00:39:22] And I'm seeing that, the anxiety, I mean, she broke down in my clinic. Um, I'm getting emails about how stressed she is. And she's asking about, you know, different types of nursing care. And now even talking about assisted living or skilled nursing. And I get it, you know, like she can't, she can't juggle all of these things. Yeah. Care and caregiving for everyone basically. And then you're kind of left with nothing for yourself and your own life. Right.

[00:39:49] It's like you're kind of living for others and it's a tough position to be. And I, I really empathize with that role because I understand it's way difficult when it's, when it's loved ones, when it's, you know, family, it is just a very difficult position to be in.

[00:40:14] And how do you think medical teams, uh, could better support caregivers? Yeah, I think, I think we can do a better job of asking caregivers how they're actually doing, um, you know, incorporating these skills about encouraging proper boundaries, the, um, referrals for support groups. Maybe I think we should normalize that the burnout is natural. I mean, it's, it's common.

[00:40:40] And that's why we really wanted to do this podcast is because we really wanted not only the patients to understand, we want the caregivers to know there's outlets, um, family members to look at this and say, Hey, you know what? We need to look at like how mom's doing or like, how's dad doing? Or, you know, like what about my brothers and sisters and like how they're dealing with their spouses? Like we, we want everyone to be encouraged that being a caregiver, um, is a thankless position, but they're also very vulnerable.

[00:41:09] And I think that, you know, in the medical world, we need social workers to step in and, um, we as clinicians need to seek those referrals soon. Uh, when it comes to things like swallowing problems for our patients, you know, we can order a speech therapy, but we want to let the caregiver know like, Hey, there are some speech issues. There's some swallowing issues, but this is a game plan. This is what we want to, you know, let them know that there's, there could be issues going on, but here's what we're going to intervene.

[00:41:38] And we want to make the caregiver empowered by all these previous episodes we've done. So they're ahead of it, not to be nervous, but to really be ready to game plan so that they themselves are stronger too. So we need to, again, make sure we do wellness screenings for the patients regularly and make sure that we ask, um, you know, how are the caregivers are? Like I have patients come in. I always ask, how's your spouse? If they think, if the patient came alone, I always still ask, how's the spouse doing? Just to make sure.

[00:42:08] And, you know, there's this like a situation that in neurology, especially, you know, we can just send an electronic order, but, um, for referral for like sleep and, uh, we could do it for physical therapy or for, for occupational therapy. But if we don't bring it up, then, you know, patients and the caregivers don't know that it exists. So they still taking on all of this burden. And so I really believe in that, that we should go above and beyond our normal roles and make

[00:42:37] sure, can we always ask, can I order something for you? And I also like to order a lot of home health screening because there are things that I don't know what's going on in the background at home. So I like to get home health safety evaluation, whether that we need more grab bars or do we need a ramp instead of steps. And we didn't realize like there's an area in the house that someone's more likely to fall. And that's always on the caregiver's mind. So, you know, these things, um, are come full circle if we deliver like the formal orders and referrals.

[00:43:07] So, you know, again, even if a patient has difficulty, you know, driving and the caregiver can be there to take them sometimes don't order an outpatient physical therapy order. Maybe it needs to be an in-home physical therapy. So we can do certain things, maybe like for the bed and transferring, maybe we order a hospital bed. So we need to be again, like asking like, how's your morning? Like how's things with eating? You know, what's the dynamics when you guys like take a nap during the day?

[00:43:35] Um, do you guys need help with dinner? Is there situations like with getting to bed? Is there problems logistically with brushing your teeth? Like I kind of like go through the whole day phenomenon so I can see where there are our issues, you know? And one of the biggest things that caregivers do is they want to make the patient happy and the patients have a tough time wanting to eat. Maybe there's an apathy of eating.

[00:44:01] And so they, there's a lot of comfort foods, a lot of sweets, and those are actually really irritable for the brain and especially for sleep cycle. So a lot of patients get sweets and desserts and ice cream at night and that messes up the sleep cycle. But at the same time, the caregiver doesn't know how to say no because they're like, well, let them have some joy. Let them enjoy this glass of wine. That's what they're used to having. Like we've already limited this and we've limited that, but I still have to be there to be like, you know what? There should be a true no to this.

[00:44:31] We need to have our boundaries for what's healthy and what's not because it just continues to spiral out of control. So medical teams can also, as they're taking care of the patient, they can also assess the situation to see how they can help the caregiver consequentially or with, with the orders like you mentioned, or with the. Yeah. Different orders. Yeah. Yeah.

[00:45:00] I mean, again, it's just a pen to paper task for us. I mean, now everything's electronic, but you know, we should ask more about what, what we can do for, for them. And do you see any differences between spousal caregivers and adult child caregivers? Yeah. Yeah. You know, there's, there's a lot that goes on and there's significant changes that go on between, um, the spousal caregiver or the adult child caregiver.

[00:45:27] Um, there's the psychological, there's financial, there's logistics, and they both create like a chronic kind of stress and strain in their relationships. Like for instance, again, spousal caregivers, like they lose, there's a loss of peer partnership. You know, there's the erosion of the loved ones to now being a caregiver and a patient. Um, we see that, you know, it's hard sometimes for them being a life partner, the person they

[00:45:56] historically turned to for emotional support, they can't really go there. And so it leaves the spouse kind of lonely. Um, you know, that loss of shared retirement, you know, there was this, you know, uh, uniqueness about traveling and maybe downsizing and having this peaceful retirement together. And now all of a sudden, you know, we can't downsize. We have to like, you know, have a special chairlift or within our house, maybe we have to move

[00:46:23] to an assisted living and, um, you know, we can't be within our house that we thought was our home. Um, so those are the type of things that we see. There's a financial vulnerability, you know, the threat of like a fixed income. And now depending on like a retirement savings for someone's healthcare and, you know, the healthcare burdens are really high and expensive, whether you have to bring on a nurse, a nighttime kind of caregiver. And then when you think about the adult child caregiver situation, you know, the child, they're

[00:46:51] in this sandwich, uh, generation or burger generation. Um, and that's kind of like, they're taking care of their loved ones that are their parents. And then they still have their kids or their spouses. And so it creates a strain to be a child in a way, an adult child, because you're trying to manage what you're supposed to do and what you're expected to do, uh, to give back for your parents. But then it's this, you know, role reversal shock, right? How do you shift from being the child and managing your parents' bathroom hygiene, you

[00:47:20] know, going for medical appointments and, and the financial kind of triggers that the father or the mother used to be in charge of. And now the son or the daughter have to take on these roles. And it creates a lot of conflict actually between siblings, because one of them has to take over the financial responsibility. And then now they're like the power of attorney for that. And then the, the other siblings like, well, what's going on with the money? And like, shouldn't I be getting 50% of this?

[00:47:48] And one has to be in charge of kind of the estate planning. So we see a lot of stress there. The adult children, you know, they reduce their working hours. They pass up, pass up promotions. Uh, they have to take unpaid family leave. And, you know, that's their, you know, maybe peak earning years and their future retirement contributions are taken away. So there's a lot that goes on with being an adult, uh, child, uh, caregiver.

[00:48:14] And they always, there's always this, well, no matter what, if you're a caregiver, if you're the spouse or the, of the child, um, there's this constant feeling that you're failing everyone, um, and that you need to be doing more. But sometimes it's hard with the uphill battle of a, of a chronic disease state. Yes. There's only so much you can do, no. And, and you're at maximum capacity. There's probably an underlying feeling of, or desire to wanting to fix the situation, but you can't.

[00:48:43] So that can be pretty frustrating and having to show up to all the things that you have to do in your life and, you know, show up in your best, um, best version. Yeah. I mean, people are running in fumes and I remember a patient who I was caring for and the son would come and sleep over and he would sleep over twice a week. And then he would come home in the morning, you know, freshen up, see his wife and then go to work. And, you know, he would say like, it's just exhausting.

[00:49:13] And he was doing this for months and he came in with his wife and, uh, of course with the patient and the wife was like, yeah, like things are not working. And you could see that there was a, you know, a burden on their relationship too. And, you know, this episode is made to empower caregivers, right? To give them information and tools on how to also take care of themselves and set boundaries. So if, if you could say one thing directly to caregivers listening right now, what would it be?

[00:49:42] I see, I see so many different perspectives, but I think the core message should be that you matter. Uh, your health matters that you're allowed to rest, you know, you're doing enough. And if you don't feel like you're doing enough, then get support. You know, maybe there's a moral, uh, a moral kind of fatigue that you're getting, but you need that space. Um, because if you continue to burn yourself out, then again, you're not going to be the best version of yourself.

[00:50:07] And in treating and caring for someone is a multi-year marathon, you know, multi-decade marathon, you know, the oppressions that you leave, um, you know, on your family that you're getting burnt out is, is also what they're going to remember. And what ends up happening is that, you know, you want to be the superhero or you want to be, you know, being that person to always be there for your loved one. Like, again, it's okay to delegate.

[00:50:34] It's totally fine to delegate, you know, like it is the emotional burnout that again, I think affects the physical, uh, strain later on in life. And I do believe that, you know, we, we put ourselves at a high risk for cancers and dementia. And again, this is all based on poor metabolic state and not sleeping. So again, your health truly matters and, you know, surround yourself with a team. So surround yourself with good friends and family that you can be part, uh, still partake

[00:51:03] with, um, take type for respite care, understand what that means with respite care, where you can have someone else also be a caregiver and you can also take your breaks. And I think those are again, good, sustainable, uh, goals. And ask for help, right? When you need it, because everybody does need it, especially when you're doing such an important role, I guess you're taking for a loved one. And how can families plan caregiving in a way that protects everyone long term?

[00:51:32] The best way to think about long term is like plan early, divide responsibilities, you know, get that kind of medical power of attorney, get a financial, uh, power of attorney, you know, have those legal planning set up, having a state lawyer, maybe be involved, you know, have emotional check-ins, you know, again, they see a therapist, have a therapist for the patient. Also a marriage family therapist can help with both.

[00:51:56] Uh, maybe it's okay to go to support groups and understand how others are dealing with those pressures. Have the children also attend support groups so that they know what the patient and the, the loved one, the caregiver is dealing with, or have the family members come to those doctor's appointments as well. So they understand what's going on with their, with their parent.

[00:52:22] So what I've seen is that sometimes you don't introduce what's going on. And then all of a sudden when things have hit the wall, you know, then all of a sudden it's kind of like what, what's happening all of a sudden. And then now, you know, children involved in there, they didn't know that was, uh, such a disabling situation for everybody. So that's why I think, you know, create like a board of directors, like treat, treat the care in the house, like a business too, right? You have a project manager, which is like the primary caregiver.

[00:52:51] They do the day-to-day logistics, have that financial controller, you know, the banking insurance claims, you know, payments. Um, I've seen people miss, uh, mortgage payments because, you know, the, the, the patient was the one in charge. Now, uh, the caregiver is taking control or didn't know that they had to take control and it wasn't automatic payments. So these are important things have like a logistics operator, someone who does a weekly groceries or ordering things, or, uh, someone's in charge of getting medications or, you know,

[00:53:21] not, um, you know, to check, to see if there's any refills going on. Like these are important things. And then have a respite care of someone else who's re recurring non-negotiable schedule of having another caregiver in the house or take, you know, nighttime roles. And then we want to map out financial and legal guardrails. Like I said, have advanced directives, have to ensure that there's this doable power of attorney for healthcare proxy.

[00:53:48] And again, you want to build in like outside help, right? Like again, you get home health aides, ask the doctors for assistance with home PT, um, um, get any support, like more wheelchair, um, lightweight wheelchair or a mobile walker that has brakes or a seated chair so that people can, you know, still move and then go, go outside and go for walks in the garden or, you know, at a park. Because again, as a caregiver, you need to get out the house too.

[00:54:16] So you want to normalize the schedule, but have these strategies there. And I think those are very important things that, you know, do things together, you know, whether it's puzzles, again, you know, playing cards, but then also have your own time and then have the... We've reached the end of our episode, Dr. Takara. Thank you so much for sharing all these important messages for the caregivers and for empowering them to make better decisions for their health as well. Yeah. This has probably been one of our longest episodes.

[00:54:46] And again, I think it speaks to that there's so much entailed in this, right? Yes. It's an important topic and I think it deserves the time to really go deep into what it means to be a caregiver and to offer some advice and support to those in this important role. Caregiving is one of the most loving acts a person can give, but love should never require self-erasure. If this episode resonated with you, please share it with a caregiver who needs to hear they're not alone.

[00:55:15] This is The Caring Neurologist, where care extends to everyone in the journey. See you next time.