298: The Invisible Work Of Caregiving, With Lynnel Townsend

When patients leave the hospital, the healthcare journey is far from over.

In this episode of The Human Side of Leadership in Healthcare, Dr. Pelè sits down with caregiver advocate and educator Lynnel Townsend to explore one of healthcare's most overlooked challenges: the invisible work of family caregiving.

Drawing from years of professional caregiving experience and deeply personal stories, Lynnel explains how family caregivers often become an unseen extension of the healthcare system, providing around-the-clock care with little training, support, or preparation. She shares her concept of Caregiver Robotic Syndrome and highlights the emotional, physical, and psychological toll that caregiving can take when families are left to navigate complex healthcare needs on their own. 

Together, they discuss:

• Why family caregivers are often the hidden patient in the healthcare continuum
 • The warning signs of caregiver burnout
 • What happens after a patient is discharged home
 • Why education and preparation are critical for caregiver success
 • The communication gap between healthcare systems and family caregivers
 • How families can share responsibility more effectively
 • The role of personalized care plans and support systems in preventing burnout
 • Why supporting caregivers ultimately improves patient outcomes and reduces readmissions 

This conversation is a powerful reminder that healthcare does not end at discharge. Behind every patient receiving care at home is often a caregiver carrying an invisible burden that deserves recognition, support, and compassion.

Lynnel Townsend is on LinkedIn here: https://www.linkedin.com/in/lynnel-townsend-73b07828b/

Transcript

Dr. Pelè  •  00:06
Welcome to the human side of leadership in healthcare podcast. I'm Dr. Pillade. On this podcast, we explore how leadership shows up in real moments, not just defined in theory. And today we're talking about something that healthcare systems often depend on, but may not fully see. And that is the invisible burden carried by family caregivers after patients leave the hospital It is truly my pleasure to welcome Linnelle Townsend. Linnelle works closely with caregivers and families navigating home care, dementia care, spouse care. and the realities of supporting loved ones through high need situations, especially burnout. Linnelle, I'm really glad you're here. How are you doing today? I'm doing disgrace. Oh, it's awesome to see you, Linnelle. And you know, I wanted to just go ahead and start with the big question on my mind anyway, and that is really, how did you get into uh Caregiving? What first drew you into caregiving work and supporting families in these kinds of high pressure uh situations. 

Lynnel Townsend  •  01:14
Well to start with though to uh been able to be a caregiver in various different aspects of to uh and as a professional caregiver. But one of the things that drew me into helping families or individuals after working through agencies, helping um with with with clients One of the things that drew me were was uh the fact that uh I had a friend some friends or two that were actually died, the word caregivers And it's hard for people to understand though too that when a person is already sick, sick people can actually uh becoming caregivers, you know, they can actually themselves they can actually kill. So this one particular family was a family of three uh a mother, a father, and a son. And um with it they died within four months of each other. I wanted to try to help as best I could. They knew you know very good friends of mine the two. So I wanted to help. They refused at the time though to when they finally wanted my help. The mother died first. The father died within about three and a half to four months. And then the son died two weeks later. And the sad situation is that the son did not have to die, but what causes death is he was already sick. So when sick people take care of sick people, it can literally kill. That's what really drew me and that is I saw that families definitely needed to have help as caregivers. 

Dr. Pelè  •  02:29
That is such a powerful story. It just uh what I'm hearing is someone who Showed up with empathy as you did, and you just couldn't leave that situation without finding some solution to this problem of caregiver burnout and and struggles related to that You know, I wonder when people hear the word caregiver, what do they actually understand by that? And especially people in the healthcare community, is there a sense that caregivers are inside or outside the traditional systems, tell me a little bit about just the definition of the word caregiver 

Lynnel Townsend  •  03:06
Well a caregiver is a person that uh actually they're devoting their life, basically giving up their life, to become, especially when you're dealing with an individual that needs to have total care. And people do not understand families and definitely healthcare professionals too. When that person becomes a caregiver, uh so much is dumped on me. It's kind of similar to the fact, you know, we think about a person when you hear cold blue in the hospital, okay, you're constantly running. That person who didn't sign on for the job, so to speak They're gonna have to take on all kinds of situations, learning medical techniques, uh, all kind of other things. People do not stop and think about how serious that situation is and it can actually if a person's already sick it can actually cost them their life or two. So this is one of the things that I see People need to be more aware of what caregiving can actually do. That's what a caregiver is. A person that gives basically give up their life to take care of somebody else 

Dr. Pelè  •  04:02
Wow. I mean, and that to me is just a powerful way of explaining it. And yet, as you've talked about in in some of uh the programs that you've created and the work that you've done. You describe this almost as a hidden problem, this burnout that happens to caregivers. Can you give us a sense of what happens to people emotionally and physically? When they become full-time caregivers for their spouse or parent or loved ones. 

Lynnel Townsend  •  04:28
I'm gonna give you an example and I wanna use example of a mother that's taking care of a child, a new child, a baby. Uh I created a uh a according to terminology the caregiver robotic syndrome. And that's because of the fact that a caregiver, just like a new mother She's constantly walking. If she takes care of that baby robotically, she's taking care of whatever that need is, uh, 2 a. m. , whatever any time of the day or the night Caregivers are in that same similar situation, but make what makes it worse is the fact that that baby grows up and he's gonna leave need his parent less That caregiver is working 24-7 and they're working robotically. These are human beings, real people, working 24-7. They sometimes forget their own personal needs. So this is something families are not aware of. They just assume everything is done. It's all about assumptions. Healthcare professionals and all will do. They have no idea the nightmare that this person goes through, they're overwhelmed. 

Dr. Pelè  •  05:28
Linnelle, I have to tell you that first of all, I am a fan of the term that you invented called Caregiver robotic syndrome. You need to trademark that and just put it on the wall somewhere because it's powerful. But it makes me want to ask you: what are some signs that a caregiver is approaching burnout? Even if they themselves do not recognize it. 

Lynnel Townsend  •  05:52
They neglect their own health. Let's just say that that the indigestion you thought you were having is actually a heart attack. Ready to be s you know. So with it they're neglecting their health uh physically or just whatever and they kind of it's like they become molded into one, the caregiver and the person that's needing care And I want to continue to use this example of a mother with a child. You can barely pull that baby away from that mother. I don't care how tight she is. That caregiver becomes the one with that patient And it's hard for a person. Sometimes even if others ask if they can help, it's hard for them to do. They're always cognitive of what's going on with them. What's going on with that particular person. So that's what helps to decline. And sadly Statistics have shown though too sometimes caregivers actually died before the person that's uh needing care. 

Dr. Pelè  •  06:43
You know We've already established through your definition that the caregiving we're talking about is similar to what may happen in a hospital, but we're actually focused on what happens outside the hospital. I'd like to see if there's a link here because obviously You know, there comes a time inside of a hospital where they recognize that a patient is going to move back home and get the care through a caregiver. So from your perspective, What do hospitals and healthcare systems need to know about what happens after a patient goes home 

Lynnel Townsend  •  07:17
I want to say I happened to accidentally come up on a situation to understand that the healthcare provider That's do what usually what happens is during discharge of the patient, okay? So with that discharge, the healthcare provider, and I'll use the example of social workers and case managers, they have to go by standards ACMA or just whatever. Well with these standards uh to meet that health care that the person the the caregiver so they want to make sure that that patient has all the help they need before they leave When that healthcare provider does not uh give proper instructions or resources and community things that this person can go to, That potential caregiver is gonna that's gonna all be dumped on that particular person. And so as a result, they're going home with it. People need to know that when you send someone home Basically they're doing their job. They have to do all the jobs of the doctor and everybody else. That person's whole life changes right there. People need to know they need resources They need support system and one thing in particular I like to focus on though too. One resource that people don't have, people always talk about respite Respirate is a temporary sporadic situation. That may come on a Monday or whatever else. You never know when you're gonna get that break. That caregiver never gets a break. 24-7. They don't need just respirate. Respirate's wonderful. They need someone consistently to come a few days out of the week on a regular basis. That's the only way they're going to get a break. So people need to know without that break, being that caregiver will break down. 

Dr. Pelè  •  08:53
In many ways it seems as though from what you're sharing that family caregivers are really an extension of the overall care system that may start at a hospital. 

Lynnel Townsend  •  09:03
Absolutely. 

Dr. Pelè  •  09:04
And so so I'm wondering, do you think that healthcare uh providers and and and nurses and administrators Do you think that they view they view uh the family caregiving in that way, or do you think that there's some education that is needed for People inside hospitals to know that they need great communication with the the caregivers to move forward in instructions. Is there a gap here 

Lynnel Townsend  •  09:29
I believe there definitely is a gap. Uh I was amazed to find out, uh, if I may say though too, uh working with families and healthcare care professionals are uh provide training for them though to to help them appreciate the causes, the effect, the consequences and the solution to caregiver burnout So when it comes to that though too, I was surprised when I went to healthcare professionals to offer my services because I recognize that discharge, that trend transition is vitally important So with it, I was very surprised to find out though too that they have limited information. One of the professionals I even talked to, she was in the private, she was a social worker herself She mentioned when she got to go for discharge for her her uh husband from the hospital, she had to go knock on the door of the social workers. So they are not getting the education that they need. And the sad part about it is that they work as an ecosystem It's you know and what I'm saying by that, each depends on one another for the success of that system to function. So that means that that healthcare provider, with all the standards that they have to meet and the obligations of that patient They have to make su they they actually depend on that patient being able to be successful. The continuity of care, they they have to depend on that being successful. If they don't like a ripple effect, it's gonna affect the whole system So there needs to be some communication there and resources, proper resources. 

Dr. Pelè  •  10:51
Wow. You know, I I would love to know a little bit more about the services that you provide and we'll get to that in a moment but if you don't mind I want to go a little bit deeper into this problem of burnout and pressure Because it looks to me like the caregivers are experiencing that on a whole different level. People may not even be aware of. So I guess my question is just to get deeper into that problem before we talk about the solution. What does long-term caregiving pressure do to a person psychologically? 

Lynnel Townsend  •  11:26
Psychologically it can um separate them from society, so to speak. If you're working 24-7, you forget about relationships. I've talked to various different caregivers and um If they have done this for two years, they don't remember what it felt like to go to a restaurant and eat out. They don't remember what it was like to have friends over this whatever they are continually. Imagine being on a job 24-7. Because even the healthcare providers Even we as professional caregivers, so too, uh in different capacities, we do shifts. We get to go home after 12 hours or eight hours or whatever else. Even if I do a double. I still get to go home. But imagine what that can do to you mentally. And sadly, even if the person dies afterwards, this person is lost. It's like, what do I do now? All the friends I had two or three years ago, where are they at? So it affects them mentally that way. And like I said, one of the biggest ways, as I mentioned earlier, though too It affects them because they are not cognitive of their own needs. 

Dr. Pelè  •  12:27
Yeah. Yeah. I wonder wh wh why do you think it is that so many caregivers wait until they're already overwhelmed in with burnout and other things before asking for help? 

Lynnel Townsend  •  12:39
Because when you robotically are taking care of an individual, you're not even cognitive yourself. Something is going on. If you have to, there's so many emergencies that's happened, so many cold blues, so to speak, within a day So with that, imagine for example, you're about ready to eat a meal, but somebody's crying back then screaming, you gotta go back and take care of that knee. So they're always on the uh the the uh alert their system is like that. And so they forget that they don't think about themselves as even needing need. They they're not cognitive enough to have even realize that they have a need and to know to ask for help. 

Dr. Pelè  •  13:17
Let's move now into a little bit about the solution. Because you know, I'm all sad and and and discouraged now about the problem. But you have a great solution, Linnelle. You shared some of that with me And I want to start to move to understand that. So I guess my first question in that direction is, you've spent years helping caregivers develop practical skills and awareness. What kinds of support or education do these folks need in order to improve or to solve these burnout problems 

Lynnel Townsend  •  13:48
I want to say something that's been a common thread in any capacity that the that I've served to as a caregiver. And that's the fact that you have to have a book of instructions. As I mentioned at point or two b it's like baking a cake or just whatever you have it ingredients if you don't have that it's gonna flop. All purpose flour with the salt and soda. Better than you know uh whatever. But if you forget some of those ingredients there's gonna be an issue The common thread that I have seen and I've always experienced is that everyone has to have a manual, a book of instructions with all the information in there There are no healthcare, professional health care agencies that can operate without a manual specifically, a personalized plan of care for each individual. person they care for. And I do want to say one thing in particular with myself. I just want to at least mention this point to help you to appreciate the importance of that main ingredient. I my last job I was a substitute DSP, which meant that I could I had training to take care of three people in a home at a time with a variety of physical and mental disabilities Why? Because they all had their own separate manual. Well, in addition to that, I was a substitute so I could take care of individuals in seven homes. So I was trained to take care of 21 individuals in separate homes with a variety of physical and mental disabilities. Why is that? Because I could flip over the page such and such and see I need to do this. I could flip here and that's just information for the doctor's orders and other things like that. So when I sit and I start noticing that and I started paying more attention, working as to what was inside of that manual, that's invaluable material The average caregiver does not have as access to and I knew that I wanted to have others to be able to know about it. So I decided to create my own manual. And what it is is called uh it's an uh HSP In regular professional caregiving agencies, there's this called an ISP individual support plan. However, the one I created, I took it a step further because in a house in a caregiving setting You it you know you've got the they already train us to do our job. And then you have the manual. So you got those two ingredients, the professional caregiver, you got the manual. Well in a home setting you don't have that. They need more than instructions, they also need support So within mine calling HSPs and holistic support plan, I created it in a way where you get not only that manual and the information that that's about the person's ailment. You also get all the supports that the caregiver needs. I even did in a way where I created a formula for them to have additional caregivers to come Two to three days a week, eight to ten hours a day to give them consistent support because they need to have more than respirate. So that was one of the things that I did that made my services unique And then what another thing a lot of times we may wonder though too about the services, my program, the the services are non-traditional, a lot of those, but yet these are professional. As I mentioned before, we have to have guidelines we're we're trained under NADSP or other a other uh standards like that. So I put particular guidelines within there and uh I couldn't water it down Because I wanted to make sure the average caregiver got all the help they needed. So I spent about five years getting that together, meaning the team. A lot of families are too have benefited even outside of the state out outside of the country. But many have benefited and talked about what a wonderful aspect as it's been for them. Uh because they need to know that. You need to know what's going on with mama, the doctors or whatever else are too involved So that's help. And then that manual can also be used with families. So that means your brother, your sister, your sibling, they can be able to work together to know what to do. 

Dr. Pelè  •  17:33
So, we now know that there is a solution. I feel better now. But I want to ask you a question about that solution. And here it is. Can you give us, and I know you're not going to tell us everything that's in the manual, of course, but can you give us one practical way from the manual, from your solution? That caregivers can protect their own health while still caring deeply for someone else. Just one tip 

Lynnel Townsend  •  18:00
My first tip in the manual is that uh I may have to add two tips in order to explain it, okay? My manual, first of all, is four weeks. And I helped that caregiver. Uh, I'll just say this. If you look at what I do, look at me as a mechanic. If you had a car that needs servicing so I uh it it you know it's a with it though to I make sure that it's gonna be able to get the help that it's gonna need, you know, the the vehicle. But anyway when you look at it like that, one of the things I do, I start my manual off with taking care of that caregiver Let's get you the help you need. You need additional caregivers to come in there so you won't be working 24-7. In order for you to complete what else is in that menu, and then it has to have a medical profile. Everything about that patient So that you can flip here and you know in a case of emergency, including a uh a mark, a medication administration record. That's one of the things that people are not aware of. What if mama has 15 medications You need to know how to how to place those. You need to know each medicine where they're at and you know wherever that made medicine starts because otherwise without that documentation and other documentation it can kill. You need to know, you need to have everything readily available for you as a caregiver, as well as additional caregivers that may support 'em. 

Dr. Pelè  •  19:20
You know, I love the analogy of the mechanic uh that you brought in and it made me think of when you get on an airplane. They will tell you put your mask on first before you put it on the child. Because I think what they're trying to tell you is that you are the caregiver. You better survive. Um you know, if in case of an emergency, they say. Absolutely. So so I completely understand the logic of that and I think it makes a lot of sense. I wonder when you when you think of Back to the hospitals and the healthcare leaders. What is one thing you wish healthcare leaders would understand about caregivers before discharging a patient home? 

Lynnel Townsend  •  20:01
Just like with with within a caregiving agen agency, they have the individual support plan ISP. It's the ingredients in there to know what to do. You're sending that caregiver home, that healthcare provider is sending them home uh with nothing. And like I said, they're gonna they're gonna have to answer to Code Blue is gonna happen all the time with them. They have no idea what to do with a whole year live or catheter or medication, you're sending the caregiver home and then you're expecting a lot of that caregiver to be able to make sure that the continuity of care is, you know, uh uh okay with the p with the patient. So they need to know, I think It starts with they're a discharge in transition. They need to have manuals. Uh healthcare professionals has to be taught What caregiver burnout is, the effects, uh, the consequences, as well as the um the solution. And if I may mention this one thing in particular, if I could This is something that we all are very aware of that happened. I'm gonna use two different instances. The Hackman situation. And we stop and think about the Hackman's when they all died, you know, uh though two uh the wife herself she was a caregiver. Now we it helped us appreciate and they were wealthy. It doesn't matter the amount of money that you have, if you don't have a s support system, it can kill you. Now look at when you w think about that situation, she died first. And they recognized she was Googling information about taking the gene hackman and self force uh uh had uh COVID, but he didn't. But the problem was the fact she didn't have the instructions there too, so she died He died, even the animal died. So that's the problem though too is that it doesn't matter how much money you have or whoever, you definitely need to be able to have a book of instruction and it needs to start there. That ecosystem it has to start with the healthcare provider 

Dr. Pelè  •  21:51
You mentioned the Hackman situation. I want to just clarify for our audience that you're talking about Gene Hackman and his wife and their dog, who all were found uh deceased at their home. And Gene Hackman, for anyone who's not aware, is a was a great uh actor uh in the entertainment business. I just want to clarify that and I think that's just uh such a powerful example from the perspective of caregiving What is the human side of caregiving? So we all we know that there are some instructions you have to follow, there are some procedures you need, some technology you need to abide by. All of those things are important. But what is what is the human side of all this? I mean you just gave a great example with Gene Hackman and his wife. Um I'm wondering I'm wondering what what could have been done better there, just from a human side, to avoid all of that 

Lynnel Townsend  •  22:43
education to know what actually needs to be done. And that's why using an example again, as I mentioned, agency with an ISP, an individual support plan You still no you can't get around the fact. That's their main tool. You cannot get around the fact that the caregiver must be educated. And the poor caregiver is dumped into a situation. You got family members going back to their own life. So I think with the human aspect of it, what would really help And that's one of the things I do when I I I do training, monthly training for healthcare professionals in order to educate them on things. But the biggest thing that They need to recognize that point uh is is right there. When they recognize what needs to be done, they need a family meeting first of all. It needs to start this, step number one A family member with a brother that's going back to Georgia, the sister's going back to LA or whatever. Because that sister there in Tennessee taking care of mama by herself You need to meet together, have a consultation right there. So when it begins there, that's one of the things I do after my training is I explain to them right away after that three-hour training. They go back to the office and they recognize every person coming through that door that's a caregiver, that's a potential caregiver. Sit them down for 45 minutes, whatever those two conversation Bring the family together because this is another thing, the human part of it, since you asked or two. This is one of the things that most people don't know, the two this missing the two that I put into my training. That brother or that sister going back home to their own lives. There are various tasks they actually can do from their home without having to derupt their disrupt their life. because you're hearing more and more about the caregiver crying out and being angry and resentful of the brother and sister going back home because they're going on with their lives and they're stuck with it. But the other thing though too, even though people may talk about the family members going back, they don't know what to do either to their credits. So right there, it needs to start immediately when that caregiver is able to uh when that uh patient is about to be discharged, that meeting needs to start right there. Do not leave without that person going home to know what to do. And even and this is another thing that I found that's also helpful The human side of it though too. A lot of times if that patient needs total care, they may go to rehabilitation. You have time, like for example, my program four weeks, but you have time to put a system, a plan of care in place then. That even gives you a little bit more time. The whole thing is that everyone, this is not a one person situation. Just like agencies themselves, they haven't not just the ISP, but they first have to you can't create a ISP unless you get all the teams together involved. Who are the doctors? Who are the this and that? What are the caregivers going to be? So when that meeting starts right there, sit them down and educate them. This is what's going to happen to your sister When you go back home, okay? This is what's gonna happen to whoever. So let's come up with a plan because another thing when it comes to financial, that's a very serious situation. Some people may qualify for help, some may not Well you know what? If you can't help mama and you're going back home, get some money out of your pocket and pay for a caregiver to come in to give him some help. So if you do that That can stop the resentment. And if that you know you s you spend whatever amount or two, then you got somebody coming in there. And that helps you. That's just one of 12 different tasks that I mentioned that outside family members can do and actually can unite families instead of tear them apart. So it's not a one-person job. This is everybody's Job, but they need but not only that, not just a job. Everybody needs to know what to do. 

Dr. Pelè  •  26:20
Yeah. Sounds like it takes a village to heal A family member. And I I I would like to close by thanking you, uh Linnel, for your compassion because I can hear it, I can feel it. And I think that when you answered the question about the human side of this First of all, you're saying this is me trying to understand clearly. You're saying, yes, we need the education. You provide that. And not just educating the caregivers, but also the the healthcare uh providers so that they know how to send people away. But then the second thing you mentioned, tell mama what's going on. Okay, you you're talking about that human side. You're saying educate the family, you know, connect people at the heart level. And I think that's powerful. And I just want to thank you for sharing that. 

Lynnel Townsend  •  27:08
This is one thing I do want to say. When it comes to healthcare professionals, I'm on your side, you know, and they are killing themselves, they're, you know, whatever, you know, so I stop and think about what their responsibility is in the hospital. So the program that when you educate that caregiver All those standards and regulations that they're supposed to do, everything that they're supposed to do anyway, once a program is in place, guess what? That means that that's that caregiver is in a a stabilization situation. So if you got a stabilized caregiver, then guess what? That healthcare professional job is a lot easier. That stops re-admissions in the hospital. Everything with discharge can be handled right there with the plan in place. So that's where that e ecosystem comes in, all depending on one another. But I want to say for those healthcare providers, whoever you are, I'm on your side And you know, I want to make your job easier. So that's one of the things that I try to provide with my service. 

Dr. Pelè  •  28:09
Well, I hope that everyone listening will get a chance and we will have in the show notes a link to your LinkedIn And we'll get a chance to learn more about Linnelle. Linnelle, thank you so much for being on the podcast. 

Lynnel Townsend  •  28:20
Thank you for having me.