Love Conquers Alz

ADRIA THOMPSON: The `VITAL Role Speech Therapy Plays in The Quality of Your Loved One's Life

September 11, 2022 Adria Thompson, Susie Singer Carter and Don Priess Season 5 Episode 61
Love Conquers Alz
ADRIA THOMPSON: The `VITAL Role Speech Therapy Plays in The Quality of Your Loved One's Life
Show Notes Transcript

In Episode 61, Don and I had the pleasure of speaking with Adria Thompson, a speech language pathologist, dementia educator, and owner of Be Light Care Consulting. Adria has over 8 years experience in working with individuals one on one providing speech therapy services for those with dementia.

Adria has also created a dementia training program to teach therapists in 13 states how to increase their creativity, efficiency, and compassion. She creates daily content for over 200,000 professional and personal caregivers of individuals with dementia on social media platforms in a relatable, positive way that makes the condition seem a little less scary.

I was particularly interested in talking to Adria about dysphagia (difficulty in swallowing) which often presents in late-stage dementia patients. Although dysphagia can only truly be diagnosed via Videofluoroscopy (VFS), also called a modified barium swallow study (the gold standard),  many Long Term Care Facilities use antiquated ways to make their official assessment based on budget and man-power.

This is what happened to my mother in the last 6 months of her life. Without having her properly tested, the facility that she was at claimed she could no longer swallow safely and insisted she be fed via a G-Tube. They also refused to allow her to have anything orally for fear she would aspirate. But the truth was, my mother was not only able to swallow, she wanted to desperately.  Despite my advocating, they forbid it. I was finally able to convince them to have her assessed by their speech therapist who proceeded to diagnose her with dysphagia by watching her and placing a finger on her throat.

I implored the therapist to watch me give my mother liquids from one of the sponges used for oral care. She agreed that my mother was able to swallow...for me. Her final decision was that I would be allowed to give liquids to my mother via a sponge on a stick. No one else would be given permission. Let's be honest - the decision was based on the fact that they were understaffed.  And potential liability.  Consequently, my mother suffered for 6 months from an unnecessary G-Tube,  solid chunks of mucus that formed daily which happens when liquid is withheld from a person, and the monotony of almost zero oral gratification! Can you imagine?

I say almost zero, because everyday for 6 months, I brought my mother "something to drink". I was restricted by their edict that it could only be provided by a sponge that my mother had to suck. It was heartbreaking.

Their attempt to keep my mother from aspirating and developing pneumonia GREATLY affected her quality of life. In truth, it was an exercise in futility and really a distraction from the stage 4 pressure sore they allowed to develop and neglected to care for properly  which ultimately resulted in sepsis and pneumonia several times during her last six months.

We must protect our LOs from decisions based on policy that benefit the establishment and disregard our LOs quality of life... however long that may be. They deserve it.  xo Susie

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Don Priess:

Alzheimer's sucks. It's an equal opportunity disease that chips away at everything we hold dear. And to date, there's no cure. So until there is we continue to fight with the most powerful tool in our arsenal. Love. This is Love Conquers Alz. A real and really positive podcast that takes a deep dive into everything. Alzheimer's, The Good, the Bad, and everything in between. And now, here are your hosts Susie singer, Carter, and me, Don priests.

Susie Singer Carter:

Hi, everybody. I'm Susie Singer Carter.

Don Priess:

And I'm Don Priess and this is lLove Conquers Alz. Hello, Susan.

Susie Singer Carter:

Hello, Donald. How are you?

Don Priess:

I'm swell. I guess it's beautiful. Yeah, I think I am. It's. It's a lovely day and...

Susie Singer Carter:

But you didn't go golfing today?

Don Priess:

I didn't I have a some sort of shoulder malady. Now. I was gonna get up nice and early at 6am. Yeah. And I did. And I said, Oh, I can't swing a club right now.

Susie Singer Carter:

A grand- the grandfather in him is coming out.

Don Priess:

Yes. Coming out

Susie Singer Carter:

It's creeping in. It's creeping in

Don Priess:

Stop that. Yeah. I keep that. How's yours? How's your day?

Susie Singer Carter:

I don't golf. My day is great. My day is going back to dance class tomorrow night. So that's good. Yes. And, yeah. And let's see what else is going on. I'm, I'm doing a documentary, which, you know, because you helped me

Don Priess:

I did. I happen to know a little bit about that. edit. Honestly, to be powerful,

Susie Singer Carter:

It's going to be powerful. You guys it's going to be it's it's it's it's about a topic that I can't unsee it's, you know, based on what's going on with our understaffing, which is a crisis in our nursing homes right now. So, and I watched my mom be a victim to it, and a bunch of other people have obviously been a victim to it. And it's just a bad systemic issue. And, you know, I will just, I will keep you guys posted on it, because I'm not sure how it's going to all play out. But it's going to be very, we need to make a change. So I'm building a village. And if you if you have stories that you would like to share with me, you can get a hold of us on any of our platforms and social media, just let us know if you want to share a story. And we'll see if it's in an you know, the right. The right area. Yeah. But I'd love to hear your stories if you're a nurse or a CNA, or somebody, you know, on both sides of the aisle in terms of the this particular industry because it's it, there's a lot a lot of stories out there, and no one's really had a chance to talk about it. So here's your chance to talk about it. Okay.

Don Priess:

Yeah, and on another note, our our short film my mom and the girl is in the mom Festival this weekend and even as we speak, there's the closing ceremonies in which point they they announced you know, the winners of the festival. We're hoping maybe we might be one of them. We got excellent reviews. We did. We got "Spin" Yeah, Spin they gave us they gave our film marvelous reviews. And that makes us feel really good. And it also helps us keep passing on the the positive torch that we're trying to set for this. This this crazy thing called Alzheimer's. So

Susie Singer Carter:

yeah, yeah. So yeah, the film My Mom and The Girl and if you haven't seen it, you should it's a short film and start Valerie Harper in her last beautiful, amazing performance. So and we're just keep trying to get you know more and more people to see it because it resonates and it's it's really a lovely look at Alzheimer's. It's really a joyous look at it. If there is one Absolutely. So anyway, we have a good we have a fun guest today Don.

Don Priess:

We definitely do. Yeah, when shall I tell? Shall I tell everyone about her?

Susie Singer Carter:

Yeah, but first let me just tell you why. Why it's so well you know, I hate social media so much like it's such it's so it takes up so much time and it's so it's it's they there's it's just a glut it's a glut of like information and and I feel bad having to post you know, even my stuff on our shows and our movies and things but and I know it's a it's unnecessary but this girl I and I'm not the kind of person that scrolls all the time but this girl caught my eyes because she doesn't just right like she doesn't overdo it. It's but she's there all the time. So she's like a constant and she's in our in. She's in our community for dementia care and you're going to introduce her but it To start, you know, if you want a lesson on how to do social media without pissing people off and just really getting your message out there, she's really really good at it. So all right, you go Don,

Don Priess:

She's foundthe secret sauce. And I'll tell you a little bit about her. Adria Thompson is her name and she's a speech language pathologist dementia educator and has over eight years experience in working with individuals one on one providing speech therapy services. She's the owner of B light care consulting and has developed the unique dementia training program. Teaching therapists in 13 states how to increase their creativity, efficiency and compassion. Her informative and entertaining daily content reaches over 200,000 professional and personal Dementia Caregivers on social media platforms in a relatable positive way that makes the condition seem a little less scary and the task of caregiving a little less daunting. She's a powerful positive force in the caregiving community. And we cannot wait to hear more about her mission. So without further ado, let's say hello to Adria Thompson. Hello. Adria.

Susie Singer Carter:

Hi, Adria

Adria Thompson:

Hi, Susie and Don. Yeah, thank you so much for having me.

Susie Singer Carter:

Thank you for being here being here. I didn't I didn't lie 200 at 200,000 followers on Instagram, I'm not surprised because you have that you do. You just really you have a really good demeanor and your approach to social media is really, really effective. So I'm not surprised. And I'm very, very interested in your speech therapy background and how you incorporated that into dementia. What brought you to dementia? How did you marry those two, you know, practices?

Adria Thompson:

Yeah, that's a good question. I think to answer it, I will first explain what a speech therapist is. For some listeners who might not know you'll hear me say speech language pathologist or speech therapist, it's interchangeable, it means the same thing. But I've been a speech therapist for eight years. And anyone with a speech that's a speech therapist in the United States has a bachelor's and master's degree. And a lot of people might think of a speech therapist working with children. And that very much is something I could do. But my specialty is working with geriatrics and in the medical field. So in the realm of speech therapy with adults, we help people with three things. That's communication, swallowing, and cognition. So communication is anything like of course expressing yourself verbally, but also in writing. And then also understanding the speech or reading something from a page. So comprehension from language as well. And then also the actual production of speech. So voice quality, or fluency, like if someone stutters, for example, and then swallowing is, any buddy who has a swallowing disorder is considered to have dysphasia. And so that can be difficulty anywhere from chewing food all the way down to it going down the wrong way. So we are specialists in that area. And then as far as cognition goes, that's all areas of thinking. So memory, but also attention, reasoning, problem solving, planning, and organizing thoughts. So with that description, you can kind of see where dementia falls into that because for individuals with dementia, they often have deficits in all of those areas, they lose their ability to communicate effectively. And they a lot of times start having difficulty chewing and swallowing. And of course, we know that their cognition is affected. Because you know, short term memory loss, reasoning, all of that is one of the first symptoms that we see. So as a speech therapist, I like in my role, I would provide one on one services to anyone who has needs in those areas. And a large part of any speech therapists caseload that works in a nursing home, or in assisted living are individuals with dementia. And it's not everyone's cup of tea, but it is my passion, and definitely my specialty.

Susie Singer Carter:

And how did you get in? Why are you passionate about it? I'm interested to know.

Adria Thompson:

You know, and it's interesting because in grad school, I thought I wanted to work with kids. And I was really drawn to children with more severe disabilities. And I've always kind of been a person that really likes a challenging case. And so when I got out of grad school, I was just doing different interviews getting experience out in the real world. And I interviewed with a nursing home and I got a good offer and I just thought well, I can do this for a little while and I just fell in love with it. There's really no like, specific story as to how it happened. I just really realized that this is where I'm supposed to be. And but the same kind of thing happened where that I really liked the most severe cases. In this population as well, and typically that is with individuals with dementia, they are the most challenging to care for. And you know, their issues are so complex, and they're not always able to participate in solving those problems for themselves. So I love the ability to like be a detective and figure out what might be going on.

Susie Singer Carter:

Oh, my God, you are so needed. And I have experienced firsthand experience, I'm so excited to talk to you about this, I really am. And I think it's so so important for people to understand what you're saying, because especially like dysphasia, which comes in, you know, later stages of Alzheimer's, right. And there's a lot of different schools of thought on it. And there's also it plays into an issue that I'm, it's going to plays a big part in our documentary, too, because which I'll get to in a second, but I wanted to, I wanted to ask you, so you work with you work, you just decided this is your your focus is dementia. And then what I noticed in your videos, your daily videos with really good information, and you and your, your use seem very young, and you seem even young, you're you're I mean, you're you've eight years sounds like a long time, but it's really not in the scheme of things. And you are very astute and more astute than more most doctors that I've worked with, with my mother who had it for had Alzheimer's for 16 years, and most of the medical industry doesn't understand it like you do, you have a really good understanding of how to communicate how to make, you know, keep it positive. And, you know, and be productive with them.

Don Priess:

In practical because it's very practical. It's very, what you need to literally move on every day, as opposed to, you know, more complicated or, you know, you've really made it in this palatable form that that just really helps immediately. It's like these are actual tools you can use.

Susie Singer Carter:

Well, I mean, you you're gonna save people lots of years, because I learned all that by rote. Right? So I had to learn how to do that, because I didn't know anybody with Alzheimer's until my mom. So I would you know, it was all trial and error. And, and because it's so close to there, I could figure out what, what worked and what didn't work and just go with my intuition, and also just my compassion and my and my love for her. But not everybody has that. Nor do they have time. So how did you come up with all this terrific approach?

Adria Thompson:

Yeah, I appreciate your kind words, I feel like I'm very much living and found like, a way to make my job my career be everything that is my strengths. Because I look back even before I had any, any interest in dementia, back like in high school, I would, after calculus class, I would go to my friend's house, and I was always the one that would stand at this whiteboard that my friends had. And I would re explain these complicated concepts in a more simple way. And then, you know, in college, I look back and I was like, leading Bible Studies and, and like taking really complex ideas and breaking it down in simple ways. And that was just something that I naturally felt like I could do, and that I really enjoyed. And so with dementia, I feel like my strengths are very much being used in that area, taking really complex ideas in a really simple and relatable way. And it is so important for me, I love that you said the word like practical, because that is my biggest goal is to make all of this information very practical. You can watch one of my videos and then turn around and implement it immediately understanding not only what might work but why it might work too. And I think that that's really important. And also I am am I surprised people to know that I'm kind of I'm an introvert. And I do not like to be the center of attention. So videos do well for me, because it's the audience is my phone, I don't really have the capacity, nor do I want to have the capacity to understand how many people are watching my videos. But also I'm not a super emotional person. And so it's easy for me to give this information in a very, like non dramatic way. Because I think when we start involving a motion, it begins to get really complicated. And so if I can just kind of take a step back and give you a big, big bird's eye view of what might be going on and allow on my own my followers to process that in whatever way they need to. That's my goal.

Susie Singer Carter:

Right? I agree with you. I mean, that's the thing that I appreciate about your videos is that that you know, and I'm gonna have just be bold and say that this community is, you know, is a fantastic community. But there's also here you're always going to find in, in different communities, people that are going to exploit it, or, you know, use it for different purposes. You know, it's just the way it's part of business. It's part of, you know, QB humanity. And you know, you don't, you don't lead with your ego, there's not a lot of ego going on there. And yet, you're really disarming, too. It's not like you're, it's not clinical, you're approachable. And so that's the good combination. Like you're an approachable human being who I get that you're not emotion, I get that you you're very even keeled. It comes across. And I picked that up, like, you know, I'm an emotional person, but I certainly like I don't like to do. And I've, I've been an I've been an actress I've been, I am a director, I'm a writer, but and I, I work with the camera all the time, but I don't really like to, like, throw my personal feelings out there unless I feel like it's so important. And that by doing that, it's going to make change. And that's the only reason why I would ever do it.

Adria Thompson:

Yeah. And I had to set boundaries really early on for myself about how I was going to communicate about dementia, it's very important to me that anytime that I demonstrate something that I'm not mocking or making fun of, or even just imitating someone with dementia in an exaggerated way, because I think that there's enough stigma out there about that how someone with dementia might appear. And so my husband helps me with some of my videos, he's a great sport. But I always tell him to have to show no, like, Do not be silly with it just to be very straightforward, because the focus needs to be on me and my approach and what I'm doing. And so I think that sometimes people don't think that through, but I want to bring a lot of dignity back to them. And, you know, my, my main be light is kind of twofold. I want to bring light as far as a loom illuminating this disease, and helping people understand it. But I also want the subject to be light, I want it to be light hearted, I want to take the stress and the burden off of so if I can bring light in either Cassidy. That would that's what it's all about.

Don Priess:

It's interesting. I think that, you know, I, from what I've heard, you haven't had a personal connection, like a family connection with somebody with dementia, is that correct?

Adria Thompson:

I actually have a grandmother with dementia. Yes. So I don't talk about it a lot. But in my video, but I'm willing to talk about it in general. Because, you know, once again, I want to respect her and her situation, but I do understand it from a personal and professional point of view. But my grandmother didn't get dementia until just a few years ago. So it was well into my career already. So I was able to kind of help navigate family through that process.

Don Priess:

Do you think that that affected meaning that you didn't have it prior to you starting and then suddenly it came into your life? has that affected the way you communicate or the type of communication that you've been doing? Or have you been able to kind of compartmentalize that,

Adria Thompson:

it's been an interesting experience, because even though dementia is my specialty, and I I spend all day long talking about it, when she started showing signs, I found myself even being a little bit in denial of like, oh, like she's just getting older and getting on MRI or, you know, and though it was an interesting experience for me, it helped me relate more to the caregivers that I talk with about the process that they go through, and I'm someone who knows everything about, you know, not really but I know much about this disease. And so I it's helped me be more relatable in that way. It's also really helped me see my mom through this process.

Susie Singer Carter:

I want to get into something a little bit more on the on the clinical side of this because, you know, my mom just passed away last month from Alzheimer's and so I went through the whole journey with her and the last six months in were incredibly intense. And you know, and a lot of it had to do with understaffing and the COVID situation and a lot of short shrift in because they had to and and you know, not everybody has a hands on caregiver that that that really gets it and is really intuitive, you know, and I will say that with Flo not tooting my own horn, but I just am and my mom ended up being diagnosed with dysphasia. Before she had even seen a speech therapist. She had gone into the hospital and had received a G tube which is a feeding tube through the stomach because she had to be intubated and it was only supposed to be temporary, because my mom was ie Didn't find before there wasn't a problem with that and eating was her life. Okay? So. So when she got out of the hospital, the nursing home, didn't want to have the feeding tube removed, and then also wouldn't feed her orally, because they said she was going to aspirate. I had already been having her drink, and I could I know that she was swallowing perfectly, she was not aspirin. But it became the lesser of two evils for them, because it freed them up of time,

Adria Thompson:

For sure. I'm really sorry for your loss.

Susie Singer Carter:

Thank you,

Adria Thompson:

For your mother and what she experienced.

Susie Singer Carter:

Thank you.

Adria Thompson:

What were they wanting to use her feeding tube? For nutrition? Okay,

Don Priess:

Yes.

Susie Singer Carter:

And she didn't need it.

Adria Thompson:

Yeah, so it's a really big challenge for swallowing disorders inside of nursing homes that I have faced myself as a speech therapist. And that's because there's a lot of liability to nursing homes, when someone does have trouble swallowing. And so there are a lot of different methods and policies that exists in different states and across different companies, nursing home companies. So for example, sometimes when I've worked in a nursing home, and I am working with someone with dementia, who inevitably loses their ability to swallow, which will happen if someone lives long enough, then we'll kind of come that situation where they are not safe swallow, which just means that it food or drink is, there's a large percentage of chance that it's going to go down into their lungs, which could cause pneumonia, which could then cause their death. Or it could obstruct their airway completely, which is just like a normal choking episode, you might imagine, and once again, cause their death. And so when any kind of swallowing problem occurs, and there is not a clear path for a speech therapist, to say, Yes, this is 100% chance that they are going to be able to eat and drink perfectly without any problems, then there is a level of liability for the place. So there is something that's called Silent aspiration where someone can have food or drink, go down the wrong way and show no clinical signs. And some clinical signs that we might look for are coughing, throat clearing, or wet girly voice. So someone can have something go down the wrong way without any of the signs. And so that's what we consider silent aspiration. So I'm not sure of course, what your the specific situation was for your mom. But it is possible that the preference of the facility is that they use a G Tube, because it doesn't carry the risk of getting of choking and aspiration. But interestingly, actually, G tubes still carry a pretty big risk of aspiration, because it can cause reflux that can come back up into throat and then be aspirated there. So it's not completely a foolproof method either.

Susie Singer Carter:

Exactly. And I brought that to their attention. And, you know, and at some point, you have to decide what is quality of life, as opposed to keeping somebody alive. And my mother wasn't allowed to have any liquid oral gratification, and that is torture. Because she was not, she was very much cognizant and up and, and, you know, committed and was, you know, relating and inner, you know, interpersonally and very much was wanting to and I had to finally get them to have a speech therapist come in, and the speech therapist watched me give her liquid and she said, Well, you Yeah, you're doing a good job, I'll let you do it, but nobody else. But when she tested her, you know, she put her finger on her throat and my mom was not going to swallow with her finger there. So, you know, I think we have to look at people as individuals and say, how what, what's their base for swallowing my mom is the kind of person that goes then she's going to swallow it because you're going to taste it first. always done that. And I,

Adria Thompson:

I mean, you might have seen me cringe when you said that she put her hand on her throat because the only way that we can determine if aspiration is occurring is if we do an instrumental study. And there's two of those lenses called the modified barium swallow, which is where someone sits in front of an x ray machine and eats and drinks things that are coated in barium. So we can watch in the X ray that it goes down the right way. And the other instrumental study that we can do is called a face or a fiber optic in the scopic evaluation of swallow, which is where you run a camera on a scope through someone's nose and it dangles in the back of their throat and then we watch them eat or drink and we can See, it's going down the tube that goes to the stomach or the tube that goes to the lungs. And so those are the only two ways that we know certainly if aspiration occurs, so any kind of listening to swallow or feeling for a swallow, that's just as good as the random gets to be honest, love it and love hearing, there is a huge shift in speech therapy right now, of basically like the old school methods of listening to a swallow with a stethoscope, and holding your hand on someone's throat, we are moving away from that, because there's the evidence of determining if someone is aspirating is not there. And so there is in the speech therapy world, a huge movement right now, to stop telling that people can't eat or drink, because we think that they're swallowing, it's way too big of a decision. And so I want to encourage you to know that there is on that on our side of things, there is a big push for that. But as far as where that is in the medical community at large, I'm sure that there's still a lot of mistakes that are being made.

Susie Singer Carter:

It's really important and it's so good to hear that Adria because it's, it's actually so distressing to watch someone that you love, you know, and no, you can talk about this because we're, you know, and I don't want to be negative, but I want to be I want to be honest about what happens in this situation with someone doesn't get oral gratification. First of all their will to live is gonna go down, which happened to my mom, because there's nothing to do. It's not you know, it that's part of socializing, it's part of feel of one of the the senses that you still have left as, as someone with dementia, and it's an enjoyable experience, right? So she was she was stolen, you know, she, she was robbed of that. And then, you know, on a physical level, the mouth dries out. And there's, like, mucus that forms that skits solid, that gets stuck at the in the back of their throat and on the top of their roof of their mouth. And it's distressing, and they can choke on that too. And it's awful. It's awful, guys,

Don Priess:

And that's what she was struggling with, when when you would, you would feed her with a sponge...

Susie Singer Carter:

They let me feed her with a sponge, and like, let her suck on it.

Don Priess:

She would just take her time and then swallow it. But the stuff she was really having problems was what was because the the only time that happens when Susie was there doing it, and she was there everyday doing it. But the staff wouldn't. So in between all this stuff was building up. And that's the stuff she was having struggling, breathing and choking and coughing, for some reason it that for some reason is not a liability. And that makes no sense, does it?

Adria Thompson:

It doesn't. And I'm so sorry for your experience. And because I know exactly what you're talking about, I have myself been the ones to peel the sheet of dried mucus off of someone's hard palate in their mouth, because they have gone without any kind of something to drink. And, and, you know, there is a time in place where someone is placed on what we call NPO or means no food or drink. This might be because they've had a stroke. And they have this is the best example when someone has had a stroke, sometimes they lose their ability to swallow. And a lot of times at this point they will place a G Tube but after a stroke, there is a huge percentage chance that they are going to restore that ability. Stroke Recovery is well documented. And so there might be a time where we need to keep someone NPO that they eat through a feeding tube. While we are working on recovering their swallowing quality. Yeah, when someone Yeah, but when someone loses their ability because of a neurological degenerative disease, which we know is going to continue to get worse until the day they die. A G Tube is usually not indicated because there is no end point to that there's no okay, when she recovers, then we will transition. It is I mean, right? We have to be realistic. It's downhill when you have dementia for all things. And so when the time comes, that that is part of the conversation. A speech therapist especially needs to be the one leading the conversation of what are your goals? What are your goals for this person with this patient, you know, for yourself if you are the patient, because policies inside of nursing homes make it really tough for us. And I've personally experienced this myself and I alluded to this earlier, but if I determined that someone is at a high risk of aspiration, hopefully because I've actually done an instrumental study and I've seen it with my own eyes and not because I guess then I need to have a conversation with a family and say, Okay, here's the situation. This person is aspirating and they're like CLAY not going to recover those abilities we can try. But because of their degenerative nature of their disease, it's probably not going to happen. And so here, let's have a conversation about how we move forward. Do you want them to just eat or drink whatever they want? And know that there is a high risk that they could get choked? Or do we want to modify their diet a little bit, we want to give them food that is a little bit safer for them, we might make it softer. So that they're not have necessarily having like the episode of choking where their airway is completely occluded, right? So we can, there are, there are, there's wiggle room, there should be wiggle room. But a lot of policies and in nursing homes, say if there's any indication that aspiration could happen, they're either NPO. Or sometimes the rule is they have to go hospice,

Susie Singer Carter:

They did that with my mom.

Adria Thompson:

Because hospice, hospice allows for a lot more freedom and liberality to things in general. But, you know, if some of those decisions, or some of those things have already happened, then you know, they're kind of stuck to so it's really, really messy. But just like, Okay, if someone's 90 years old, and they get a cancer diagnosis, someone needs to, like they need to have the ability to say, I understand of this disease, and it could lead to my death. But I'm going to say that I do not want treatment. Swallowing should be this a similar conversation, I understand I have this condition. But I don't want the treatment of a D tube and NPO I want to live out my life knowing that going to down day. So it's really complicated. A lot of letters. Nobody's doing it really well.

Susie Singer Carter:

Adria... first thought I love you so much. Because your what you're saying resonates so much for me. I wish I knew you two months ago. But what you're saying is, is so onpoint and so correct, as far as I'm concerned, because it makes I mean, if you're if you or your person, like Adrian said, is coming to the finish line, and we know it, who is going to enjoy their life. If they're awake. I'm not saying if they have a stroke, and they're unconscious, my mom was awake, and kissing, and snuggling and smiling and laughing. And she every time I gave her the sponge to suck on, she'd go like that. So she wanted to

Don Priess:

and it woke her up.

Susie Singer Carter:

And it woke her up.

Don Priess:

Everytime you put that sponge and mouth. You know, she'd be very lethargic. The second that sponge went in her mouth, she woke up...

Susie Singer Carter:

Like she was alive. Yeah.

Don Priess:

Yeah, because she had some sense, because most of

Adria Thompson:

And what's interesting is that research is her other senses were very much diminished. That one she could still enjoy. And that was like her one thing. And yet, the showing right now that that pneumonia is more likely for decision even in hospice was at first was nobody she's getting nothing. I think then finally after Susie pushed and pushed and pushed and pushed and pushed, they said, Okay, Susie, only you right, but our staff is not going to do it. And that makes no sense if especially in hospice. someone who has poor oral care, which means basically a dirty mouth, even than someone who has aspirating. So aspiration is not the highest indication for pneumonia, for aspiration pneumonia, it is having a bacteria in your mouth, because pneumonia is just bacteria in your lungs. Your lungs are made only for air. And so when anything else goes into your lungs, then your your immune system starts to attack it and that's what pneumonia is basically and so if we have a mouth and a whole throat full of phlegm and bacteria from no one cleaning no water coming in and out, then we I mean it is like a feast time for bacteria.

Susie Singer Carter:

It's ripe. Adria you're so right at Listen to me. Listeners I'm telling you, she's it's so important to be we need to make changes in this because I literally, you know, even with the one time I got to see the speech therapist this was like, you know well into after she was in hospice and she said, I will order oral care three times a day. Well, first of all, it didn't happen three times a day, I can promise you that. And second of all until i i You know, bang the drum as hard as I could. Did she get any oral care at all? And so, you know, and by the way, she died, you know, pneumonia was part of the what she died from, okay, so that what you're saying resonates for me that You know, why torture somebody and not let them have, you know, at least a quality, some quality of life on their last, you know, weeks, months, whatever it is. And you know, and have that quality be dictated by policy that makes no sense and is based on, you know, it's based on on on liability, like you said on the bottom line basically. And, and that's so unfair. It's so unfair because it really reflects how we marginalize our older population. And in particular, our older population with dementia.

Don Priess:

And Susie even said, I'll sign a waiver, I will sign a waiver, I'll let your staff do this. And I will hold not hold you responsible that they wouldn't even consider it wouldn't.

Susie Singer Carter:

Because every time she went back into the hospital, which she bounced back and forth six times since January, she still had pneumonia, whether she had and she wasn't drinking. So it wasn't that.

Adria Thompson:

Right, they didn't eliminate the risk .

Susie Singer Carter:

And the G tube does that.

Adria Thompson:

And they didn't eliminate pneumonia. From all this, you know, all these policies, it still was happening.

Susie Singer Carter:

Yes, yeah. But that comes down to checking off the boxes, which one are they liable liable for? And which one aren't they liable for? And that's why we need to make the system the Medicare system, the Medicare system aware of what actually causes these things, like you saying, bad oral care, can cause that we all know that even bad oral care can give people heart attacks. Right? That's why you take antibiotics before you have some people before they have their teeth clean.

Adria Thompson:

Yeah, my, my grandmother had an infection in her mouth, and it traveled to her spine and set up in her back. I mean, oral care is extremely important. And speech therapists have been ringing this bell for years saying I mean, we can decrease rehospitalization rates, if we want to talk about numbers and liability for for nursing homes. We can we can decrease rehospitalization rates, decrease pneumonia rates if we just brush their teeth. And, and we'll have less modified diets because people keep their teeth longer. I mean, the, the benefits are endless, but it's like, oh, we don't have time for that. And, you know, it's, it's

Susie Singer Carter:

It's, it's extraordinary what they have terrible. time for though. Like that. It's like, we need to prioritize what is the priority? Right. So we need to read we need to, you know, the it, we need to redo the formulary for what really is going to make the quality of life or enhance it really, right. I mean, that's what the goal is otherwise, why are we keeping people alive? There's no reason to other than making other people rich. Sorry, I'm on a soapbox. Sorry, guys.

Don Priess:

So what... and it's counterintuitive, as you were saying, it seems so counterintuitive, because there it's causing more care needs, as opposed to being preventative about it, just by doing some fairly simple stuff, you know, you know, the understaffing and things like that, or just, you know, poor staffing is, is the root of it. So what, you know, you said, you know, speech therapist has been banging the drum for years. So wet, how do we get how do we bang a bigger drum? You know, Susie is about to do that with a documentary. And, you know, what have you discussed with other speech therapists, like, what can we do to change this?

Adria Thompson:

Yeah, as in acute care, we're in hospitals, there are a lot of speech therapists that are, are putting together programs, putting together lots of research and presenting these to hospital executives of here's what research is showing us about the importance of oral care and this, like, we need to implement this. And there is change that is happening across the country. But I think the problem with nursing homes is that those executives are not they don't have an office in the building. Right? They are somewhere else. So I don't know, I don't know where the change how the change can happen. Because I know for myself, whether it be a dementia program or an oral care program, when I bring this up to nursing home administrators, we don't have it in a budget. We don't have the staff, right. And so I don't know personally, what the answer is, but I'm willing to be on board with it. I'm willing to be a part of it. If someone can figure it out.

Susie Singer Carter:

I really boned up on everything I could. And I knew so much about this area. I started really getting knowledgeable on it. And I said there's other tests that we can take that required like the barium and things like that. And they said same thing I'd have to pay for that. They wouldn't arrange for it. It's not it's not part of What Medicare is is going to cover? And that would be an outside cost. And so, which seems so like Don said counterintuitive, because, you know, they're trying to mitigate their costs, but then by not doing it...

Don Priess:

They're increasing the costs.

Susie Singer Carter:

It's increasing their costs.

Adria Thompson:

And I think this problem exists for people other diagnoses, like people who have had strokes, people who have ALS, people who have degenerative disorders, that whether it be you know, whatever it might be there, this problem exists, but I think that it exists more so in the dementia world, because individuals with dementia are not able to advocate for ourselves, we can't look at the person and say, What do you want? Do you want a feeding tube?

Susie Singer Carter:

So I have a question for you. And again, back to the G tube, and aspiration, which we all you know, if, like you said, it carries a high risk of aspiration as well. And how I mean, how do you know how does somebody know when some body a resident or a patient is aspirating, from a G Tube, like, is that a silent aspiration?

Adria Thompson:

It can be, it can be a silent aspiration, where it is just going into the lungs, and there's no clinical signs, there's no coughing, there's no what voice or anything like that. But we could see signs from vomiting. So basically, if there's someone is aspirating, from a G Tube at some level of reflux, and reflux just means that contents in the stomach is coming back up the esophagus, which is the tube that goes there, and goes into the tube that goes down to our lungs. And so someone might, might cough, they might not show any signs, it's kind of how you experience heartburn, that kind of feeling someone might feel it. But once again, if they have dementia, they might not be able to tell you. And so individuals with dementia, especially since that's a lot of what we talk about, it's very hard to tell.

Susie Singer Carter:

I find that very interesting. And I think that it's something that we need to really take a look at. Because, you know, if you're if you're going to restrict oral gratification because of aspiration, they and the possibility of silently aspirating their like use, like you said, a G tube feeding is carries pretty much the same risk, if not more, because you you know, someone there, I mean, unless they, they regurgitate, you're not going to know if that's happening. And at one point, I went into the facility that my mom was at, and I noticed that the flow rate of her G tube was doubled. And so I went and talked to the charge nurse, it was like 10 at night, and she they couldn't finally the charge nurse came and said, Oh no, I would never I that couldn't happen. And then she looked at it. She said, oh, oh yeah, it's supposed to be at 60, not 120. And so anyway, it's a long story, but she stopped it. And then I talked and then I had called the triage nurse at night, because we're, you know, from the hospice, and she said that she actually said you she could have vomited. And that would have been, you know, a very horrendous situation in terms of aspirating. And so, you know, that's when I first learned about it and went and did a deep dive on it on the possibility of that, and I find it interesting that that is not on the list of high liability and like how I'm wondering if that's a way you know, if how can we get that situation to be in everyone's purview as much as oral oral gratification is. Do you - am I making sense Don and Adria?

Adria Thompson:

Yeah. Yes, so we can decrease the risk of aspiration from a G tube by keeping the head of the bed up and keeping them like sitting up rather than laying flat. But and we do this also with people who eat orally, right? If they're eating, we want to make sure that they're sitting up, but also, if someone has a tendency towards GERD or gastric esophageal reflux, most a lot of people do like even neurotypical people, right, we all have acid reflux or heartburn to some degree. So some people are more prone to it than others and people who are prone to it, we will always recommend to not lay down flat and unless it's 30 minutes after you've eaten a meal because we want to give it time to start to digest. The issue though is with people on G tubes is that it's not obvious from i Our eyes that they are eating, right? It can be pumping into their stomach? And we don't know. And so staff would, it would require them, even aides to be educated to know when the pump is on how long it's been off, and to avoid laying them flat. And we might think that's not that big of a deal with how often does that happen? Well, if you care for someone with dementia, or someone who is bed bound, essentially, we have to lay them flat every time we change them, right? We change their clothes, we change their undergarments. And so an aide might be having the most wonderful intentions going in changing them, you know, and having a great approach. But they might miss the step of checking that pump and seeing, is it on? Because if it's on or if it's been on in the last 30 minutes, we do not need to lay them down. And so that is not trained. I mean. Yeah, and it's, it's very, it's very overlooked, right? Yeah. And so they might have good intentions to clean them up to do all kinds of good things and scoop them up in bed. But that carries a risk.

Don Priess:

And that's, you know, because and your mom, they thought it was on for five hours at that rate at that double rate. So you know, during that time, yeah, that during that time, she was probably laid flat a couple of times they turning her over to one side or the other because she had a bedsore, all these things. So that comes with education. That's really what you're doing. Because you don't only you know, educate the family member, the caregiver, you're also educating the professionals. Yes, so, so how, again, know, we keep asking, How do we get this out there? How do we get this education out to the masses of professionals? Because this is like everything. This is the crux of knowledge is the crux of everything when it comes to this type of care. And why why is it so overlooked? And what what you're doing something about it, but you know, we got to get it out to everybody.

Adria Thompson:

I think it's more than I think the approach that's taken a lot of times is telling someone what to do without telling them why. And I think that that is the missing piece a lot of times, and so aids, we don't want to throw them under the bus, but typically that their job is to provide most of them one on one care, the daily care, changing them feeding them, those kinds of things. And largely, of course, they are educated to some degree. In some assisted livings. They are not certified though they just been trained on orientation day, and the basics of caring for someone. But they might have had a past history in being a waitress they have not they're not have any nursing care. Someone who's a certified nursing assistant will have some training, of course. But do they understand the complexity of dysphasia and aspiration? I'm sure they don't. And so when we tell, I know, once again, like from experience, when I tell an aide, hey, don't lay them down during their G tube feedings, you need to make sure that they stay up for at least 30 minutes afterwards, I need you to clean their mouth really well, we want to make sure that we if they have teeth, that we actually use a toothbrush and not just a sponge, sponges are okay for people maybe who don't have any teeth at all. But if they have teeth, we need to be in there with a brush and cleaning. If they are unable to spit, we need to have a suction device near nearby so that we can suction that out of their mouth. All the details, right? We tell them that all the time. But they just see it as like, Oh, I'm so much more to do to add to my list. All these things that I have to do. And they maybe I'm giving some people probably more benefit. But maybe if they understood why it might help. At least it might make them feel more compelled to complete those tasks rather than if they're just told to. So I think education is really improved on I think you know, and I always tell people this like I told this to a cook and one of the kitchens of the place I worked in we were having issues back and forth. And this is just the kind of person I am but I kind of just stopped the conversation at one point because we kept going in circles and I said listen, I just need to know is this mistake that your kitchen made? Is this a mistake out of ignorance? Did you not know any better? Or was this negligence like If this is ignorance, I can work with that. What do I need to do? Let's do a training, let's put together a day, I will make a PowerPoint, I can handle that. If it's negligence if you know what you're supposed to do and why it's important, and you're just not doing it, that's not my job. Like, we need to go higher up, and we need to deal with this from your boss, right? Like, I'm not your boss, I need to deal with this in a different way. And I think that that is I've kind of used that, that terminology before of with other caregivers and other, you know, medical professionals is, did this mistake is this issue out of ignorance or out of negligence? Because we're going to deal with that two completely different ways.

Susie Singer Carter:

Can I say... can I interject and say, I love that approach, however, when the nurse that was remissed, to check what the flow rate should have been at she it was her first time alone on the floor. She was very nervous. And she felt really bad about the whole thing. It's not her fault. Her training was not. It wasn't good enough. It wasn't good enough. And so -

Don Priess:

And they admitted that they admitted that later

Susie Singer Carter:

They said it's a training problem

Don Priess:

It was a training issue.

Susie Singer Carter:

But the thing is, is that a training issue, if they - and she didn't know better, she obviously didn't know better. And she's not the kind of person that would have she didn't have instinct on it. She's by the book.

Don Priess:

And she was the charge nurse, by the way.

Susie Singer Carter:

She was, yeah, it was her first time on the floor alone. So she, you know, I you can definitely say what you know, but how do you differentiate between what is, you know, you don't know better and negligence, because not knowing better can be negligence, because not for the people doing it. But for the people running the show. Because the people running the show need to make sure that everybody understands the importance of what they're doing.

Adria Thompson:

Yeah, and ownership should take be taken place. Either way, like you said, they're both of problem. You know, not one is not necessarily better than the other. I think probably from a medical educating standpoint, I'm more comfortable with one than the other because I know that

Susie Singer Carter:

I just dropped out with educating makes sense. Yes. I just thought that

Adria Thompson:

Yeah, but as a fan, yeah. But as a family member, it doesn't matter. Right? From your point of view, it doesn't matter if they didn't know better, or if they knew better and did it anyway. Because the outcome is the same. The outcome was that your mom was injured, right? She was made uncomfortable, she was put at a high risk. So that's a problem. And I think, you know, medical Mistakes happen on every level, every day. And it's carries a very difficult consequence. Yeah.

Don Priess:

But this is systemic. Because if if you're saying we you are putting people there, some of them are certified, some of them are not some was just a hairdresser two days ago, and because of, you know, staffing issues, we're hiring them and they're still taking care of, it's shocking, because, you know, I don't think they're just hiring lifeguards at the beach without certifying them just because they need somebody up on the tower. You know, no, you have to be trained. And that should be anyone who's on that floor. And anyone who deals with somebody in those facilities should be fully trained, certified. And so we mitigate the possibilities of this happening, there's still going to be problems, as you say, at any level. But the fact that we have the people who are literally the hands on people, not knowing what they're doing is shocking, is disturbing. And that's where that's the crux of this issue. And that's what needs to be changed.

Adria Thompson:

You know, a lot of what we've talked about like is comes down to the bottom line, and it comes down to making money running a business, those kinds of things. But we can use that, I think, to our advantage, if we use it in the right way in the fact that if we pay these aides better, then they're going to be more motivated to be good. We're going to have more competition, when we go to hire, we're not going to be desperate to get anyone off the street because the reality is, especially during COVID During like when I was working inside facilities, right when things started opening back up, a lot of people started hiring again, an aide could go work in a memory care and get you know, harassed and beat up for without better terms from some of the patients right that's just kind of the nature of of of the disease sometimes, but they they can have is really hard, emotionally and physical job. Or they could go down the street and work at you know the local bar and get paid the same exact Like thing, and not experienced that. And so I know just as a speech therapists to another part of this is, I do not like I don't I never have gotten a race, the only time I've ever increased my salary is by moving jobs and negotiating when I'm hired. So a lot of medical professions, there is not any motivation for someone to be better at their job. So as a speech therapist, I'm pursuing a lot of continuing education in dementia, because I want to be better, because I started my own business, and there is motivation there. But as a speech therapist, in the buildings I was working in, if I was a really great speech therapist or a really terrible one, I would still have my job, and I'd still be paid the same. And so I think, you know, if we want to talk about healthcare being a business, we can talk about that too. Because I think that there, there's ways that we can kind of manipulate the system in a better way, on that side of things, too. So it's complicated. It's a really complicated scenario.

Susie Singer Carter:

I really appreciate that Adria. And I think that I would love to have you back for a part two and talk about those ways. Because I mean, we've already we've just, we've, I mean, we have so much information that we just laid out that I think is new information for most people, because it was new for me, you know, I didn't really, this all hit me in January. And I was fighting for my mother's life. Basically, I literally was fighting for her to have dignity and to be comfortable and to be a human being, just to be treated like a human being, and not a statistic, you know, and to look at her and I cannot tell you how many times I said to them, this is a woman. This is a human being that I love. This is a woman who's dynamic and has had an amazing life. You can't just write her off. It's not fair. Yeah. So I mean, I'm so sorry. Oh, thank you, thank you. i I'm sorry to and I think, you know, I always try to take situations that are been handed me and, and make something positive out of it. And if it's changing, if I can make a change, then that's what I'm going to do. Because like I started this conversation, I just saw things that I can't unsee and I can't, I can't keep it to myself.

Don Priess:

And I think that that's what you're doing Adria, also, you are taking that and you're saying I'm not just going to stand by I have knowledge, I'm going to share it. And that's what you do every single day, on your social media posts on Instagram and Tiktok. And that's the knowledge is everything. If what we do with it, that's a whole nother thing. But you got to start with, you know, getting that information out. And thank you for doing what you're doing. And I think a lot of people are going to thank you. Because you're literally can change somebody's entire life with one little bit of information, you know, whether it be incontinence, or, you know, or just communication or all those things. And those are the things that you're practically giving every single day. And thank you for doing that is that what is the most satisfying thing about doing what you're doing?

Adria Thompson:

I get around 40 messages a day of people either asking questions, but most of them just thanking me. And it's such an honor, like it's such an honor, this is the best I've I've cracked the code of have the perfect job owning my own business doing this because I feel so much purpose in this. And like I said, I feel like I'm very much in my strengths. And I am just so honored to work walk alongside people down this path that's typically dark and scary, to make it not so mysterious, not so heavy. And it is it's just so much fun for me. So I am glad that it's led me to conversations like this, I've met so many awesome people. And I just feel like, I can't help but just feel hope that things are getting better. You know, we can address, we can address all of these concerns and all of these problematic things. And I think that in doing so we can we can push forward and make change.

Susie Singer Carter:

Good. I love hearing that. And I want to make change with you. And, you know, you're it you know, I appreciate that you are very stable and you don't work from your emotions and I am heart centered and I work from my emotions. But I think that that they that our village needs all of that. Right? And that's why you know, we're, you know, we, we sent her on love and which is is why Don why do we do that?

Don Priess:

We do that and you know Why Because LOVE is powerful. LOVE is contagious and LOVECONQUERS ALZ. And we so thank everyone for being here today. We thank you Adria. We're gonna put up all your contact information and we hope everyone follows you on Instagram and Tiktok. And, and I hope everyone follows us along the way. And again we thank you all.

Susie Singer Carter:

Yes Bye everybody...