GAIL WEATHERILL the DEMENTIA NURSE: What The Brain Cannot Remember, The Heart Can Never Forget

In episode 71, Don and I thoroughly enjoyed talking to  Gail Weatherill, RN BSN CAEd, AKA the Dementia Nurse.  Gail is a practicing RN for 43 years, a board-certified Alzheimer's Educator, a fearless advocate, and the author of The Caregiver's Guide to Dementia: Practical Advice for Caring for Yourself and Your Loved One.

 Gail became a family caregiver herself when a beloved client with no family moved in with her and her family for her last few years of life. She understands the demands of 24/7 care of a loved one with dementia. She now works to compensate for our health "care" system's failure to support caregivers in meeting those demands.

 Gail recently shared her irreverent approach to the American health care machine  in a dynamic interview for our documentary, NO COUNTRY FOR OLD PEOPLE.  It's no wonder she has  become an effective and sought out advocate for those in deepest need. Her advocacy led to her participation in the Nurses Take DC movement for safe staffing ratios in our hospitals and long-term care facilities.  

Through her writing, speaking, and coaching, Gail lives to educate dementia caregivers "one heart at a time".  She maintains a closed caregiver support group on Facebook, a group that has grown to 50,000 members from over 100 countries. The need is global and great. As Gail makes her way through her fortieth year of nursing practice, she will tell you she is just getting started.  YOU'RE GOING TO LOVE HER!

 When she's not busy rabble-rousing for health care causes, Gail can be found reading, sewing fidget quilts, and missing her two daughters whom she says live entirely too far from their mother. She shares her home in Charlottesville, VA with a cat named Baby Silas who lets her use the laptop when he's not busy warming his belly on it.

Enjoy!
xox Susie

Transcript

Susie Singer Carter: 13:23:48

Hi everybody, it's Susie Singer Carter and I just wanted to take a minute to tell you about a wonderful product I just discovered. It's called sociopathy. And Sociavi in Latin means to share and unite. It is the simplest way for older adults and people with disabilities to connect and engage with their family and friends. There's no username, no password, no login and no app to choose from. It's just a dedicated device. It's the sociol the C2M connect to me device it's always on and ready to use. And families and caregivers just install the app on their smartphone. And then you can just begin sending photos, videos, and even have live live video chats and your loved ones. They don't have to do anything. They just love it. And because all of us must fight elder abuse and work together to bring awareness to this issue says the obvious supporting my efforts to produce my vital documentary, No Country for Old people. When you subscribe to sociology for your loved ones, they will donate the payments received and you can help us reach our goal while connecting with your loved ones in the simplest way Sociavi - connecting generations made simple globally. To learn more, please visit their website at www sociavi.com. And when choosing the payment select the annual subscription the proceeds will go to help the production of our documentary, No Country for Old People and I thank you so much.

Don Priess: 13:25:14

When the world has got shut down, and 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 Priess. Hello, everybody. It's been a while this is Susie singer Carter and this is Don priests and this isLove Conquers Alzs. Hello, Susan. .

Susie Singer Carter: 13:26:00

Donald. Yes, we're here we're doing a show. It's been what a month. I don't think this is the long I don't know, this is the longest we've taken a break for because we're so deeply entrenched in our documentary, documentary, No Country for Old people. And I forgot about love conquers all. I didn't forget about it. We just had literally no time. But how you been? I've been you know, me. Let's talk about me talking about you. No, no, no, that's pretty good. No, we have no what we've done is we aggregated an amazing group of advocates and experts and not a knife drill for like, what should have been a six hour seven hour drive to San Francisco to to film for rock stars for this documentary. Ended up taking us about close to 11 hours because we were nine hours for God. Like 24 hours. We were in his his handy dandy electric card, which are not meant for long trips, folks. Well, they can be you know, we stopped twice. And you just had a little a little time. We only stopped twice. And it took some time. But it was delightful because we didn't actually take any money out of our wallets to pay for gas. So that was the best part. But no, we had a we had a great set of interviews.

Don Priess: 13:27:24

Despite the challenge of our hotel room.

Susie Singer Carter: 13:27:26

Let me just quickly tell you guys because this is funny. We made a reservation for a suite, a Hilton suite so that we would save money, Don we it was a two bedroom suite. And we went two bedrooms and then we thought we'll shoot the interviews in the living room glamorous living room I've never seen I don't know how they could get away with using the word sweet because we walked in. It was like we were in it was not sweet Green Acres. Green Acres if anybody knows, it was really bad. It was the parking spot.

Don Priess: 13:28:01

And tiny, We have to bring in video equipment and lighting and and have a beautiful background of which there was no beautiful background.

Susie Singer Carter: 13:28:12

So I made one.

Don Priess: 13:28:13

Yeah, she put her own coat because the pillows were so drab and covered this pillow with her coat and then with the flowers we'd like with there's no vases here none at all. So you know the the art director Susie ended up using a Kleenex box cover a big plastic water bottle and ice bucket. I suspect it was in the room for as volunteers in the back and it looked great. So anyway, you do what you got to do content rules. That's the magic of of movies. Anyway. So what we do

Susie Singer Carter: 13:28:48

Speaking of magic, we have a really magical person today that I just got really fond of her like from this interview that we did for the documentary and I and both Rick mountcastle said you got to have her on your podcast. So here she is, and why don't you introduce her?

Don Priess: 13:29:05

I'm going to today our guest is Gail Weatherill and Gail is a registered nurse, a Board Certified Alzheimer's educator and the author of the caregivers guide to dementia practical advice for caring for yourself and your loved one. Her career has spanned four decades from an intensive care head nurse in Saudi Arabia to the director of nursing in a Virginia nursing home Gail has done it all. For the last 20 years she has focused on the care of people living with dementia and the education of their caregivers. She practices as her professional alterego the dementia nurse, her ability to hear hearts instead of brains gives her a unique understanding of those with dementia and the people who love them. Gail's irreverent approach to the American Health Care machine makes her an effective and sought out advocate for those in the deepest need. And she has participated in the nurses take DC movement for safe staffing ratios in our hospitals and long term care facilities. Through her writing, speaking and coaching Gail lives to educate Dementia Caregivers, one heart at a time, and we are honored to have her with us today. So let us not wait another moment and say hello to Gail Weatherill. Hello, Gail. Yeah, hello.

Gail Weatherill: 13:30:19

Let the games begin!

Don Priess: 13:30:25

Absolutely,

Susie Singer Carter: 13:30:25

Absolutely. Oh my gosh, I love Gail, I love that you listen to hearts and not brains. Because that's that's the key. That's such a nice way to frame it about word you know, living and and caregiving for, and loving somebody with with Alzheimer's and dementia. And you know that that's the biggest, the biggest obstacle I've found is people not understanding that there's other ways to communicate. So tell us a little bit about how how did you you start as a nurse, but how did you shift your focus onto dementia? What What attracted you to that?

Gail Weatherill: 13:31:05

Well, it was I kind of fell into it more by accident than then by design. I had worked in intensive care for 17 years. And I just wanted to do something different. And I started doing home care. And most of the people I worked with in home care were people who were ill elderly. And a large proportion of people who are elderly have some degree of cognitive impairment, whether it's from Alzheimer's or other kinds of dementia. And so I just started working with these folks. And what I found was, I had a way of communicating with them. And it really did go back down to communicating Heart to Heart rather than brain to brain. Because with Alzheimer's disease and other diseases that cause dementia, basically, you're having brain failure. We talk about heart failure, we talk about kidney failure. We talk about failures, but we don't necessarily hear people say brain failure. And that really is what dementia is its brain failure. So all the chatter and the language that we normally use to communicate with, if you've got brain failure, it's not going where it needs to go. And so the challenge is to find another way to communicate. And I absolutely found that the eyes are the windows to the soul. And so it really was I'm watching you, and you're watching me, I and that is how I got into that sort of arena. And I found that I love doing it. I found that I could help families to look at things in a different light. People just need a different perspective than than what they've traditionally been told to do. So that was the way it took off. And then it just went from there. And everywhere I went to work I was always that was the first thing I want to know is how many people here have dementia or Alzheimer's because those were the folks that I really enjoyed working with the most.

Susie Singer Carter: 13:33:31

So how did you discover that though? Because, I mean, I just from my own story, I just I had my mother was diagnosed with mild cognitive impairment and then you know, turns into Alzheimer's. And she's the only person I knew at the time that had Alzheimer's so I was making Every mistake in the book, you know, I was trying to remind her I was going to fix it, I was going to keep keep repeating, because instead it would learn she'd learned, you know. And then and then it took me a very long time to realize I needed to communicate with her a different way. But it sounds like you had it instinctually like you just were intuitively connected?

Gail Weatherill: 13:34:11

You're correct, you are correct. And I often say that one of the great side benefits of having grown up in a really difficult household, where you had to take the temperature of the environment at all times as a self preservation feature. So I did I honed those skills, I can with the slightest change of a face muscle, or when someone their eye shift in a certain way, or they're tapping their fingers are 1000, other nonverbal ways of communicating. That was it, I spent 18 years practicing with the best. And so I've had an opportunity to sort of use those difficult times, and turn that into an asset in working with these people with dementia, and it has been the pleasure of my life, it really has

Susie Singer Carter: 13:35:17

Wow,

Don Priess: 13:35:18

Do you think that's something that can be taught?

Gail Weatherill: 13:35:21

Oh, yes. Oh, yes. And well, I almost want to say it's something that can be untaught, what we need to be is untaught, to use language. I do a lot of work with nurses in hospitals and talking to them about how to manage people with dementia when they're in the hospital. And what I say to them is, if somebody had heart failure, you wouldn't try to talk them into having a better cardiac output. So why do you think you can tuck someone in with brain failure into having better synapse connections? You can't. And that's sort of the unknown teaching of our reliance on language. To communicate what it is we want somebody to do or what we don't want them to do. We just have to take off the old hat and put on a different set of glasses to be able to do that.

Susie Singer Carter: 13:36:23

It's an odd stigma that occurs with humans, because we adapt to our pets, right? We look for physical cues and different kinds of cues that aren't verbal, right? And we do it with our children. And you know, before they can speak, and we we we allow them to we look we investigate what does that mean? What does that cry mean? What is that? Is that a happy is That is sad? Are they in pain? Is that this? And and yet we for some reason, we are so disrespectful, or, you know,dismissive

Don Priess: 13:37:01

And uneducated.

Susie Singer Carter: 13:37:04

Uneducated, for sure. But but but that comes with, you know, there's a desire to want to learn, like I wanted to learn, and because I wanted to stay in contact, and and before you answer, I just want to say I love I love that. I love that realization that you had about your childhood, because I had a very difficult, a happy and a difficult childhood, because I lived with a very dominating father, who was very brilliant, but also was very demanding. And I learned to read cues like no other. And I think that's probably why I'm so intuitive with people. And and I was able to, to read my mom's so well, that I think you're right. That's an interesting observation.

Gail Weatherill: 13:37:53

It's true. And I think, part of what makes it so hard for us to whether you want to call it you know, it's not so much to disrespect as it is a an being entrenched in the way that we've communicated with that person for decades. You know, when it's a toddler, you're used to him not using language because that's the way they started out. And so this is nothing true when they're two years old, and they're throwing a hissy fit. You know, when you're 80 years old, and your father has, you know, you've spent all those decades communicating with them in a certain way. It's, it's a matter of again, unlearning what we've learned over the years and knowing that we just have to come at it from a different angle. And the absolutely the analogy of have young children who don't have language. It's not that we want to say that these people are children, because they're not their minds, right? Function, their hearts function as an adult who's had all these life experiences. So no, they're not children, but in the way that they don't rely on language or can't rely on language to communicate their needs is an important analogy. I always say that all behavior has meaning. So when grandpa swinging from the chandeliers, it's not because he sat in the corner all day and said, let me see what I can do to really irked the heck out of them. It's because something's wrong. And he doesn't have the ability to communicate what it is. And it goes back just like with a toddler, are they wet? Are they hungry? Are they in pain, and you just tick off the different things. But you have to understand that talking to them and telling them they're okay. Or asking them to tell you is not going to get anywhere. And it's just going to increase your frustration, which in turn increases their frustration because they very much mirror the emotional state of the people they're engaged with.

Susie Singer Carter: 13:40:10

I agree with you. Yes. Do you think so? And I thank you for correcting me, because I don't I, you're right, it's the fact that there is a good very good point, the fact that, that we have to look at the people that we've communicated with, in a certain way for so many years, and now, and now adjust how we communicate with them. What I think would be interesting, I just want to throw this out to you is that if if these if these life changes were more incorporated into our culture, and in terms of acceptance, and understanding and education in terms of how the lifecycle goes, then we wouldn't be so shocked by it. And we wouldn't be so thrown off balance. And and maybe the loss wouldn't be as great, you know, because it takes an adjustment. It took me an adjustment to go, Oh, I'm losing my mommy. Okay, now, I'm Mommy. And so, and I embraced it. And it made me feel good. But you know, that's not to say that, that, from that, from that point to the to the other point wasn't a difficult journey. It was because we don't learn about it.

Gail Weatherill: 13:41:14

No, we don't worry about it. And, you know, there are different reasons for that. Part of it is in the grand scheme of things, Alzheimer's and other diseases that cause dementia, are relatively new on the world stage. Yes, it's been decades and decades and decades, Alzheimer's was named after a woman in the 1800s, early 1900s. And but back when I started in my career, 40 years ago, you never heard of Alzheimer's, you heard of people with what brain from drinking too much, which is one, eight. And now we call it wernicki Korsakoff syndrome, because that's what it is, is a syndrome. But you didn't hear about it. So we didn't grow up watching our mothers take care of our grandmothers, with this particular problem. We don't have role models to follow is very much and that is one reason why I got into this whole focus on education and coaching in counseling, with caregivers. Because, you know, who tells you this stuff? How are you supposed to know you were born knowing then you're, you know, you can read a lot of books, but that doesn't mean you're going to know, you know what to do in the moment when emotions are high and things are going wrong. And you're just have been sleep deprived for the last three weeks, and it's just a lot to take in. But once we understand that we're unlearning the way we used to communicate, and we're coming into new ways of communicating, then it becomes a bit of an adventure. But you're right, that we're not supported. And we certainly aren't supported in the health care system. That's for doggone Sure. And very much of that boils down to two factors. It's ageism, and it's ableism. And the stigma and the penalty for falling into the wrong category on those two spectrums is tremendous, tremendous. They're all you know, we're gonna put our money over here and it's something else. It's a real challenge. It's a real challenge.

Susie Singer Carter: 13:43:40

It is it. You are been an advocate that you've been advocating for for this kind of change, for a shift in consciousness, you know, in terms of our providers. I mean, how talk, can you talk a little bit about your advocacy and, and your frustration or your or your, you know, successes I mean talk about that, because I'm, I'm in the trenches of it. And I find it daunting, the process,

Gail Weatherill: 13:44:14

Right, Well, I'll give you a quickie success story, I did have a gentleman who had some dementia, but it was relatively mild. And what was happening was, he had met this young lady who immediately fell madly in love, it didn't have anything to do that he was the former CEO of a major international company. And loaded to the max, it was because she really loved him. And so he was going to the bank every other day, and pulling out literally 10s of 1000s of dollars in cash and giving it to this girl, well, oh, my goodness, everybody knew what was going on. But because his doctor would not certify him as being incompetent, no one could do anything about it. And when all was said and done, and he finally came to his senses, and realized what was going on, and his family went to try and take some action against this individual, what we found is there was nothing criminal, in terms of criminal law on the books, to prosecute someone from doing this to a person who was so vulnerable, and so broken. And so we started going to the legislature, and we went back, it took us three years to get there. But you know, my motto was there is that they had the laws tucked away under civil law. And I just kept saying, There is nothing civil about what this girl did to this man. And we need to make this a criminal offense. And in the end, we did manage to do that.

Susie Singer Carter: 13:46:07

Aww, that's fantastic.

Gail Weatherill: 13:46:09

It's a small step, and it's a, it's a drop in the middle of a pretty big ocean. But that's how we get there. Every year, Nurses take DC as an organization that we work during the year, but we definitely every May show up on the steps of the cat of the Capitol for a rally for safe staffing ratios, whether it's in hospitals or nursing homes. Right now, the number of residents or patients that are assigned to each individual nurse precludes giving the kind of care that we nurses know these patients deserve, and that we know how to give, but physics enters into it. And we have to work within time constraints. So we've made a little progress on the staffing ratios, and of course, the industries, wringing their hands, but even the ratios that we've managed to pass so far have been pretty low. So which is really, when I go back and look at it, I don't expect in my lifetime to shift the healthcare system. I'm not that crazy, I'm Yeah, are idealistic, or all of the above. So what I've made, my focus is educating consumers and educating caregivers and saying these are what your rights are, this is how you can exercise them within the constraints of this broken healthcare system that we have. Because that was my gonna be the quickest, fastest way I can get to people to make life better, a little easier to give a better quality of life to at least a few people. And as my work has grown over the years, it's more and more people. Which has been really gratifying and kind of shocking.

Don Priess: 13:48:11

What you say is so important, because as we're doing this documentary, you know, people don't want such a huge problem. You're never going to make a difference. It's too big. It's too big. It's too big. But that said, it's just something like you just said if you change or save the life of five people have two people have one person. You've changed that person's lives, their family's lives, their friends lives. And so yes, we have to just kind of say yes, it's a huge problem. But there's no reason we shouldn't chip away at it.

Gail Weatherill: 13:48:41

Exactly. I mean, several years ago, two other ladies and I started a closed group on Facebook for family caregivers of people with Alzheimer's and other kinds of dementia. And, you know, we started out, we wanted to have a place where caregivers could go and say the things that they can't say anywhere else, I'm gonna kill him. If he does this one more time and that sort of thing. People need that outlet. And they need to know they're not a horrible person when they feel that way. They're human beings. But we started that, and 2016 was the beginning of that. And in 2023, we have 58,000 members from over 100 different countries. And not a day goes by that I don't get a message from somebody that says this group saved my life. Because everybody in there knows what everybody else is dealing with. There's understanding there, and even if I'm having a horrible day, I've still got a word of encouragement for somebody else whose day is going even worse than mine is. So it's, you know, Power to the People sort of thing. It's, it's from the bottom up, that we're trying to change minds and change hearts.

Susie Singer Carter: 13:49:58

I agree. 100%, it is power of the people. That's that's what we are hoping to do. You know, it really is. And I think it's just a shift of perspective, like you said, and I and and we're, you know, I giving I give, I give people the benefit of the doubt that they don't know, like, I didn't know, this system, I didn't know how bad the system was. And I didn't realize the ableism and the ageism, that was so prevalent, it's so prevalent, it's, it's, it's really a fatal combination, in a lot of ways, you know, and especially if you don't have your loved one in the home.

Gail Weatherill: 13:50:35

Yes. And, you know, I have a special heart for people who have had to go into memory care, which is basically a subdivision. In most states, it's a subdivision of assisted living, long term care facilities there, there's a nursing home, then there's assisted living in memory care. And then there's home health. So there's a continuum of how much care comes from professionals. And the higher up on that list you go, the farther away you are from home, the farther you are away, you are from family, and the more vulnerable you are to broken systems. And I mean, we've all heard the horror stories, you know, you never have to look very far about the instances of abuse in nursing homes. And people use nursing home as kind of an umbrella term for long term care. But even with these folks in dementia care, all the all the company has to say is all they have dementia, they're just making that up, that never happened. But there are ways to look at our loved ones and to keep track of you know, are they losing weight at a rapid rate are they How's their skin looking? Different things that we can learn and know so that even if we haven't been able to continue care in the home, that we're still involved, I always tell caregivers, you know, you get this idea that once your loved one goes into the nursing home, that okay, my caregiving days are over? Well, that's, that's definitely a false idea. Because you'll still be just as much of a caregiver, it's just going to look different than it did when you had that individual at home. And you'll have break periods where you can actually sleep at night or not have to be worried that your loved one's going to have some sort of break down and have hallucinations and start wanting to break your arm. Because those things do happen. In homes.

Susie Singer Carter: 13:52:48

Yeah. Yes, yeah. But so, you know, when we're talking to a lot of people about long term, and there are different it can, you know, and Alzheimer's can be a very long disease, and it can be it can, it can eventually emerge, you know, managed to bankrupt most people if they live long enough through it, because it's just a long disease. And if you have to go into a memory care, because you've advanced, it's very expensive. And, and the debt so your money doesn't last very long. So you know, unless you're in the 1%. You you're going to end up on Medicaid and Medicare, you know, and you're going to be reliant on that. I, I found it and I still find it and everybody I talked to seems to have a different definition of what what is Medicaid and Medicare and what is hospice and I palliative and the differences in what your loved one is, you know, has what what are they offered in these programs, what's different and because it seems like, you know, one person says, well palliative gives you this your mom should be in palliative know your mom should be in hospice, this is where you know, you get taken care of and you get extra care, I found it the opposite, right? So what's your take on those, those different kinds of programs?,

Gail Weatherill: 13:54:19

One of the problems that we have is if we've gone through an experience, we think we know, you know, if my mom was in hospice, then I think I know how hospice works. So I'll tell somebody, but the truth is not every hospice operates exactly the same way. Medicaid in particular, is pretty much governed. At the state level, they get funding from the federal level, but in terms of regulations, and how the industry is run, and who qualifies for Medicaid, and how you qualify what loot, you know, hoops you have to jump through, it varies from state to state. So I'm always wanting caregivers in my group, you know, when somebody else in this group tells you, Oh, this is the truth, I'm like, Well, that was the truth for them in their state in that year. You know, that doesn't mean it is for you. It really, and that's this whole problem of communication. It's like, with health care, and I consider all of this part of health care, because it is it's caring for your physical, mental well being. It's like for families, we just pick you up, carry you to the most remote region in China, where you've never been to China in your life, and you don't speak a word of Chinese and we just drop you in there and expect you to find your way. It is a foreign language. And it does mean a lot of different things. And that's one reason that I do so much. I do a lot of teaching, I also do a lot of coaching and counseling one on one. Because if I don't know exactly how Medicaid works in your state, I know how to find out how it works. And that's what we need. I mean, my vision is someday it won't be the dimension nurse, it will be the dimension nurses, because nurses are the ones who understand what the impact is on a family of these diseases that can go on for long and long, you have no idea how long the money's gonna need to last, you have no idea how long you're gonna be able to keep them at home, talk about anxiety producing, it's just in all the years that I've been a nurse, there is nothing, absolutely nothing that compares to having a loved one with Alzheimer's disease or some other form of dementia from another illness. God bless my mother died from lung cancer, she had a terrible time, it was a walk in the park compared to what people with dementia and their families have to walk through. Because with dementia, there is no hope for cure, you know, they're not going to get better, they're only going to keep getting worse. There are a lot of things that that are just different. And that's another piece of of educating the public that you know, people are going through this the people down the block from you behind closed doors, you have no idea what these people are dealing with. So yes, the language is a big barrier. But yeah, I will tell you, yeah, I'm sorry, I will tell you, if you get a copy of the caregivers guide to dementia, by yours truly, I do have an outline in there the differences between these different levels of care and different organizations and how you can compare and have an idea for what sorts of things your loved ones should be entitled to.

Susie Singer Carter: 13:58:16

Yeah, that is a wonderful resource because I couldn't I could not figure out what my mom was entitled to. And it seemed to me that I was I don't know. No, I still because, you know, I when I was told my mom should go into hospice that came after a horrible experience where I was like, Oh, good, safe, she's gonna be safe, and she's going to get the care she actually needs now. And instead they just took away all her care. And, you know, they were just basically like, you know, pushing her out the door and I was like, Wait, that's not what you said. And then something the other doc, the next time she bounced into hospitals like, well, she shouldn't be in hospice, she should be in palliative. Oh, well, what's palliative? How's that different than hospice? You know, and we just don't know. And we're and we still were emotional?

Don Priess: 13:59:02

Because everyone has a different definition. As you said, there is literally a completely different definition. And so you I mean, even if you know, in theory, no, you still don't know.

Gail Weatherill: 13:59:14

Yeah, yeah, you don't. And actually, I'll give Medicare its do they run a database called care compare, where you can type in your zip code and look at what kind of care you're looking for? Are you looking for hospice care nursing home? Are you looking for home health care, and they keep a database with information about the organizations that provide those services within your physical area. And there's a lot of good information in there. Because a hospice is not a hospice is not a hospice. They are not all the same. And yes, there are organizations that are like, Okay, well, we'll just cut off everything, because everything we do give them is gonna cost us money. And you know, we're supposed to be a profit that will, enterprise here, but then you go down the street, and there's a hospice that will turn themselves inside out upside down, and blue and purple, to do anything to help you and your family get through such a difficult situation. So it's, you know, when you say people still don't know, it's true, because this group on Main Street does it this way, and the group over on Elm Street does it a totally different way. So even then, you know, you still have to do your research and your homework and who the heck teaches you how to do that?

Susie Singer Carter: 14:00:41

Nobody, nobody. It's really, really you feel like you're just out on an island, you know, and and because nobody really speaks that language, like you said, Nobody does. And and all the people that say they know, are giving, you're getting bombarded with all different kinds of answers, and you don't know which one is right. And that's why I say it's like playing whack a mole, because I don't know. We go oh, that sounds good. I'll do that. Well, that's not what you said it was going to be I thought you said this. Oh, no, we didn't say that. And then you go, Oh, my gosh, you know, and now you just you just want to, you want to now you're you it becomes like Stockholm Syndrome, because you go well, it's not as bad as yesterday, so I guess it's okay. You know?

Gail Weatherill: 14:01:24

I see that all the time.

Don Priess: 14:01:26

Yeah. Yeah, when it doesn't go bad. You think it's good? Yeah. Something bad didn't happen. Do you think that's good, you know, as opposed to just real care. And really, you

Susie Singer Carter: 14:01:38

And I've seen friends like, I've seen my know, getting the type of care that the person needs. It's, it's, my son say one thing, but then you I'm gonna give you the four but I've seen my colleagues like my girlfriend's that I grew up with whose parents are getting, you know, in that age range. And, and one of them right before my mom passed, the week before my mom passed, they were in the same facility, and it was just decided that she needed to go into hospice, they didn't know why her mother was was not didn't have dementia and was saying, I'm, am I dying? I'm not ready to die. And, and but the doctors were saying she's ready to move into hospice, and she died within two days. But you know, and everybody in that in the family and I this is no, I'm not throwing shade on the as a family. I'm saying I'm pointing out that it was it was just accepted, as opposed to questioning. Yeah. And it kind of broke my heart.

Gail Weatherill: 14:02:34

Well, physicians are socialized in this country and to be gods. And the general public is socialized. To consider them Gods. You don't question the doctor, my God. He's sitting here, gracing you with his time and his infinite wisdom. And you're going to open your mouth and question something. He says, oh, no, no, no, that is not how proper people behave. We've made some progress in that arena. But it's, I mean, it's moving the needle a hair's breadth, and that's about it. We are, we're conditioned to not question we're conditioned to accept. And I mean, I recently had a family say to me, I knew that their loved one was getting terrible care. And was basically being neglected quite a bit. And the response was, Well, at least they're not abusing her. And that just broke my heart because I was like, okay, that's the standard we've gotten into, as long as they're not, you know, smacking them upside the head, then whatever else short of that. And it's the same with physicians, you know, I, oh, boy, the horror stories I get with that is it's the same the people that you would expect to be your ally and to be your educators turned out not to be that way. And the squeaky wheel gets the grease, and that's all there is to it. Which is why I focus on consumer education, rather than provider education, because they're a bit of a lost cause in my book, at least for my lifetime, I'm not going to move that needle before I get a chance to check out a here so I'm focused on consumers learning.

Don Priess: 14:04:29

Do you think that the person that is the squeaky wheel do I mean, there's that always that thought in the back your head? Oh, but if I if I complain, they might make her make it worse?

Susie Singer Carter: 14:04:39

Retaliation.

Don Priess: 14:04:40

I mean, yeah, so Exactly. Their real concern for that?

Gail Weatherill: 14:04:43

Oh, yeah, absolutely. And it's a real phenomena. And it really is, I mean, you go into any facility, and you ask, Who is that family, and everybody dreads being labeled as that family. And, you know, so the way I look at that is, you have to pick your battles, you have to accept that not everything is going to be the way that it would be if you were taking care of him, or if you had him at home. If you complain about everything, that is not the way it should be, then you completely lose your voice. You look at the things that really make a big difference in your loved ones quality of life. Are they getting to activities? No, well, that's important, because it's boring as heck to sit around and watch the paint peel off the walls, and nothing to do. So that's an important thing to go to bat for, is it? You know, they brought her orange juice when they know full? Well, she really wants apple juice in the morning. Well, I wouldn't break my neck, trying to advocate for that, you know, those things are gonna happen. And we have to learn to differentiate what are the things that are really going to make a difference in our loved ones life? And if it's something that's going to make a difference, then I say squeak away.

Don Priess: 14:06:14

Especially if it's safety. I mean, anything to do with safety.

Gail Weatherill: 14:06:17

Oh, safety is big..

Susie Singer Carter: 14:06:19

Yeah, yeah. Yeah. And I, I felt it my family felt it my Don being my family felt it, you know, and I, I, I say it in my documentary that it, you know, it doesn't feel good when you're trying to advocate, you know, respectfully advocate, and you're suddenly become persona non grata. You are the, you're the pariah every time you walk in. And if you say, Hi, good morning, and I've always been the happy girl, and you get stone faces. And you think, what did I do wrong? Yeah, and it hurts. It's painful, because it is painful. It is painful. Yeah, you can't help but go to bed at night and think, hmm, I'm wonder if they're ignoring my mother, because there are p owed about what I complained about last week. You know, it's right. That's not fair. That's where the system that is a big issue, because we shouldn't have to worry about that. We shouldn't have to worry that if we see something bad and we say it, that were that it's going to make things even worse. That's, you know, that's just not our country. That's not what this country was built on. And it doesn't feel right. And that's why the system really, really needs a makeover big time because there are good places. I know there are good places, but it doesn't take away from the bad places. You know,

Don Priess: 14:07:44

Is there anything that can be done if you feel like that's happening if you feel like okay, I am the enemy now. Is there something that can be done to help smooth that out? Or was it just you know what? It is what it is?

Susie Singer Carter: 14:08:00

Hey, this is Susie singer Carter, and I just wanted to take a minute to talk to you about bed sores. I know but if you're like I was you probably don't have a clue what a bed so really is. Most people don't. I mean, no one told me and I really just assumed it was part of the body that was like the name says sore from lain in one position too long and if you change the position, all better. Wrong. bedsore is really a euphemism for more appropriate names such as pressure wound, and keep it as ulcer. Unfortunately, I discovered what a bedsore really was. When my mom was admitted into the hospital last year with a stage four ulcer, that is the worst level. You don't ever want that to happen. bed sores can develop quickly and worsen rapidly and can lead to serious health issues, even death if they're not promptly treated, or properly only treated and that includes cleaning and dressing the wound, but most importantly, reducing pressure off the sore by frequently changing the position of the person off of their wounds so it can heal and that can mean propping the person up 30 degrees to the side, far enough to be off the lower back, but not too far as to be on the side hip where there isn't much cushion right between the skin and the bone. This is why I'm so excited to tell you about BEDSORE RESCUE, which was designed by an amazing woman Gwen Jewell, a nurse who was tired of fooling around with simple pillows, and bulky wedges that just don't work. The bedsore rescue positioning wedge cushions are uniquely designed to provide ergonomically correct and comfortable support for a sustained period of time without touching the sore and the curvatures and bilateral angles and make it possible for the bedside cushion to be used to support many other body parts as well. You can flip the heels you can put it under the head, you can put it under the arms behind the knees, both sides. You can even use it as a breakfast in bed table, the curvatures of the bed so rescue fit the curvatures of your person's body, and it's made to meet all the patients safeties, and bed bound positioning standards for acute and long term care facilities. I wish I had it for my mom, I really do. So chances are if you have a loved one in long term care facility, or at your home, you may become a pressure injury soldier too. But bed sores should never never get to stage four. And one way to ensure that they don't is to make sure that as soon as one begins to develop, you keep the pressure off. You can do that easily with beds so a rescue and you could find beds or rescue and many other pressures solutions online at jewel nursing solutions home of the patented bed so rescue positioning wedge cushions, pads and pillows, that's Jewell, je w e l l , Nursing Solutions dot com. And when you use the special code and N C F O P the entire amount of your purchase will go to support our important documentary No Country for Old People, which chronicles my mother's journey navigating the nursing home long term care crisis that literally began with an unreported untreated pressure wound. So take the pressure off yourself and your loved one with the Bedsore Rescue.

Gail Weatherill: 14:11:03

Well, those aren't the only two choices. One, I always say it's traumatic for people to move to a different facility, which yes, once your bridge is burned to a certain degree, nothing's going to fix it short of just moving on to a different facility and different group of caregivers. But there are things that you can do short of that, because the move is traumatic to people with brain failure is not as traumatic as being left in a place. That's not safe. But it is traumatic. So if there are ways to go to the administration, and just put it out there and say, you know, I've been bringing these things to you, I've tried really hard to bring them respectfully. I've tried to choose my battles and what things I want to trouble you with. But now I'm getting the feeling that I'm just really worried about my loved one being snubbed or ignored, or even mistreated? Because people are tired of hearing me, hearing me complain. And I think just being open and honest about that is a step. Does that mean I think they're gonna say, Oh, you're right. Oh, my gosh, I can't believe that's happening in our facility. And we're gonna fix it right now, they might say that, they might say that to you. But we all know what the likelihood is of that actually happening. But I don't know, I'm just kind of thinks, you know, if something's wrong, bring it into the light. And if once you brought it into the light, it's still wrong, then you can move on to other other ways of dealing with it. But I would start with just acknowledging my fear to the people that are taking care of my loved one, that I'm concerned about this, I'm concerned that I can't speak up.

Don Priess: 14:13:11

Now, of course, we're moving to another facility, you don't know what you're getting into there. Also, I mean, you could do to be moving... it could be a lateral movement.

Gail Weatherill: 14:13:21

This is true. There are ways to do research. There are ways to do some research. And but you're right, but what I see is I see people staying in terrible situations. For that very reason. They say, Well, what if I go through all this trouble and move them somewhere and they're just as bad or worse? Well, yeah, that could happen or they could get to a new place. It's Wonderful, I get that a lot of the time in my big Facebook group, people will say, you know, I don't want to move on because there'll be just as bad down the street. But then you get somebody that pipes up and says, Ah, don't put up with that. Don't put up with that. Take your mom out of there, move her to somewhere else. That's what I did. And the second place was terrific. They cared about my mother and they cared about me. So, you know, sometimes you just have to yake

Susie Singer Carter: 14:14:18

Take your power back, right? a leap of faith.

Gail Weatherill: 14:14:21

Exactly,

Susie Singer Carter: 14:14:21

Yeah. And take your power back. Because we are, we are the customer. We feel like we're just so dependent on the facilities. And we feel like we need to be so grateful, which we should be. But I mean, if they're not treating your family member, right, then they don't, then you need to leave. I agree with you. Because it because we are the customer, they and they need us. So if we're going to look at our business, then we have to look at it that way. So be it.

Gail Weatherill: 14:14:51

Somebody's cutting a mighty big check every month for that facility. You know, where else would you go and pay somebody 9000 10,000? And more a month to mistreat your loved one? What kind of sense does that make? You know?

Susie Singer Carter: 14:15:11

It doesn't.

Don Priess: 14:15:12

You wouldn't do it with your child. If they were in

Susie Singer Carter: 14:15:13

Or your pet or your pet... or anything. a bad no private school, they wouldn't do it. You wouldn't Yeah. So tell I'm going to switch gears for a second and keep them there. say, talk about your expertise in communicating with people with Alzheimer's and give us Yeah, give us some tips on that. What. So give us some some practical ways to connect. You know, like, I'll give you an example. One of my one of my mentors who was Judy Cornish with the don don method, I love her, she and I Oh, she said to me, you know, you have to, you have to go in and remember that they that your that your loved one might not really know who you are. So help them out. Help him out. So I did every single time I go to see my mom, I would say, you know, go money, mommy, it's easy. Your favorite daughter, the one you love the most, because I'm your only daughter in a maker. And I'd make her laugh. And you know, and I start up always reminding her who I was. So that's just like an example that helped me right. And so why share some of yours?

Gail Weatherill: 14:16:17

Well, that's definitely that's definitely a good one. Because a lot of what we see with folks is they're embarrassed that they don't know, you know, so when you can go in and say, Oh, just as you just explained, this is who I am. Same thing, if you know somebody else is coming into your home to visit, it might be someone that your loved one is known for the last 50 years, but you still introduce them. And the other thing that you can do when you're gonna have visitors come in to see your loved one is educate that person in advance. So they don't come in and say, keep saying Do you remember when we did x? Because then your loved one feels bad? Because no, they don't remember when they did X and they don't know who the same here you are anyway. And why are you asking me all these dumb questions. We really have to look at it. And we always say you have to go into their world, you have to look at it through their eyes. Pets are a great, great tool for communicating with people with brain failure. I always said when I worked in the nursing home, if we could have pets and toddlers every day, then we could take the entire medication cart and throw it in the bottom of the ocean. And what's the reason for that? The reason for that is that pets and toddlers don't depend on language to communicate. And because they don't use language, the person who has brain failure doesn't have to try to decipher what this child is communicating. They look at their face. They look at the big smile and the big blue eyes and whatever. They look at the giggle they see the dog's tail going 1000 miles an hour wagon. Yeah, that's this animals glad to see me. So one of the big things for folks that I always say is you need to talk about attempts. You need to if you use 100 words to explain some thing to someone, you need to cut that down to 10 words or less. We it's it's a natural instinct, I think. And maybe I'm just sympathetic because I'm full of words and other things. But when people are trying to compute what it is you're saying the fewer words you use. And then if you combine language with gestures or showing, we're going to pull your sweater over your head. And doing that before you pull this water over your head. To combine that, it really is, if you we go back to the toddler analogy, you don't just sit there with your hands folded and tell this child things and expect them to understand what it is that you said and to do what it is you want them to do. So we shouldn't expect that with their loved ones to

Don Priess: 14:19:31

Yeah, we can almost equate that to, let's picture for, you know, somebody comes in and starts speaking a foreign language to you that you do not know a single word, what you would just sit there and be frustrated. And, and, and you as opposed to them just literally, you could probably go in and not say a single word, and just communicate with, with music and gestures and facial expressions. And suddenly they're not frustrated anymore. They're not scared. I think it's probably scary to to not terrified for them not to be and especially when they get to the point where they cannot speak. They can't say anything. So now they don't have to there's not that pressure anymore. So I think if we can equate that to that, yeah. And somebody came in and started speaking French or Chinese and I don't know, French or Chinese. I don't want to react. Yeah.

Gail Weatherill: 14:20:21

Well, one of the big things that people who are still taking care of a loved one at home really struggle with is getting a loved one to take a bath, take a shower. And, you know, there are a lot of different reasons that people with brain failure resist, you know, it may be that the drops of water, stay them when they hit them, things you wouldn't think about, we get in the shower. And then we're thinking about, you know, what we shouldn't have done yesterday and the 29 things we've got to make sure we get done today, we're not thinking about this as hitting me, these drops are hurting, or they don't see the water and they think it's just confusing to them, they get cold at the drop of a hat. They don't understand that maybe they've had some bad experience in the past with in a swimming, accident or something. Or for whatever reason, when they get in that shower, they think they're drowning. And so we have to be able to consider those things and find workarounds. I mean, I'm a big believer in getting all the big towels you can find and putting them in the dryer and turning it on on high heat before you get started with the shower. So that when you're done, you've got these warm, warm, warm towels to wrap them up.

Susie Singer Carter: 14:21:48

Ooooohhh! That sounds good. That sounds good .

Gail Weatherill: 14:21:50

Yeah! You know, there's a lot of things like using lavender, I get a lot of reports from that, you know, have a diffuser going in the bathroom with lavender, or in the home or anywhere that they're having a hard time or they're struggling. It has been known there are studies that have proven that that particular scent does help, yes, decrease anxiety, and all these other, you know, different non mainstream interventions. And that's, you know, I'm sorry, but modern medicine just doesn't have doodly squat to offer. These folks with brain failure, they don't have a drug to cure the condition and the drugs that they have to minimize the symptoms. Half of them have black box warnings, which means if you're on it, your chance of dying is higher than if you weren't on it. So looking at these alternative treatments, CBD cannabidiol, CBD, whether it's oil or gummies, or SAVs is an excellent alternative. It's plant based. It's the incidents, you literally cannot overdose or die from having too much CBD. It may wreck your stomach a little bit, but it's not going to kill you. Not like the drugs that you know, we get handed at the doctor's office every week. So, not that. I mean, I'm not anti drugs. I'm really not because I've seen a lot of people whose quality of life was immensely improved through getting some of these medications, the anti psychotic medications that have such a bad reputation. It's... you've got to cast your net wide and try a lot of different things for your loved one,

Susie Singer Carter: 14:23:50

Right. Right

Gail Weatherill: 14:23:50

And just be willing to go through trial and error, because that's what it takes to find what's going to help them the most.

Susie Singer Carter: 14:23:57

That's so important. You're right, it's trial and error, because it's not just one fix, you can't just say, because we're not one size fits all, we're individuals and everybody is different, you know, and that's, I agree with you, 100%. And so when, let's say we get to the stage, what like my mom was at the end of law in the middle, right before she died the last couple months? Not much words coming out, if any? How do you communicate with someone at that stage? What's What's the tricks that you think are the best?

Gail Weatherill: 14:24:28

Oh, you know, I have the saying, and I actually have it on a magnet. And I send it out to people sometimes, because I think it's so important. And the saying that I use is what the brain cannot remember, the heart can never forget, the brain may not remember who you are, but their heart is in there and their heart knows who you are. They can't communicate that to you in a way that you understand. But it's in there, and it feels you. So for people to say there's no point in visiting, because she doesn't even know I'm there. That's not accurate. And this came from all my years of working in intensive care units, because I worked with so many people who were right on the verge with one foot in this world and one foot and whatever comes after that. And I just experienced so many things where I just felt like, there were, I mean, people were communicating on a spirit level, I would always tell people, if you can't be here, at the moment, then, you know, you might want to be at home sitting in the rocker that the two of you sat in and drank beer and talk trash for the last, you know, 40 years, that may mean something more to you, and they're gonna know that you're there. Because when we get that close, we're communicating heart to heart. Music is huge. What's the music that meant was meaningful to that person. Touch is huge. You know, you don't have to give them a full body massage, but boy, just just a tender rubbing of the face.

Susie Singer Carter: 14:26:13

Yeah. It's, yeah, you're so right. And you just validated everything that I experienced last year, you know, when my mom wasn't speaking, and I could see her she'd been through so much. And I could see I would come in and do my dog and pony show. And I'd see her looking up to the right. Always she'd look up to the right like that. And I go you look, you got some words for me, don't you? You're looking for those words, and you're trying to get those words out. I'm waiting. I'm waiting. I'd always tell her I'm waiting. I got all the time in the world. I'm waiting. Any I didn't expect anything. I just knew that she was trying because I could feel her I know her. And then she looked at me with a big smile. She go ah, and then but one day out of nowhere. Dawn was in the room. And and this was two months before she passed. She just said clearly like it was my mom from 20 years ago. I love you. And I and she hadn't spoken for a couple months, at least before I speak afterward. I was floored because I said Mommy, what a gift that was so hard for you. That was like running the marathon. Yeah. And she had to tell me.

Gail Weatherill: 14:27:16

She did have to tell you and I have seen that. So many times. I can't even tell you, somebody who's you know, they talk about the rally right before they depart. I had a gentleman one time who had a severe nergic degenerative disease, and hadn't spoken for years. And the day before he passed, he suddenly it was like he woke up and his son's where they're from out of state and his family. And he's sitting there talking to him, telling them how much he loves him and how proud he is of him. By midnight. He was back to not being able to speak at all. And the next day he took his leave. But what a gift that was. That's,,,

Susie Singer Carter: 14:28:02

It's a gift. It's a gift. It is such a gift. It's funny because I have dreams about that I dream that my mom is totally talking to me and I go wait a minute. You're all better now in my dream. She's like, Yeah, why not?

Don Priess: 14:28:18

So I had done you know, we talked about all the you know, these these things that we as the family caregivers can do to communicate with them, but is there any is there any hope for training the people, the medical staff, the nurses, the doctors to do this? Because they don't know them? They can't read cues. They can't you know, especially a doctor comes in and sees them once every three weeks or or a nurse you know the nurses, the staff change. They can't read those cues. What can we do to to, because they're super important, that's that's who's around them all day long every day, they have to deal with them. And yet they don't know how to communicate with them.

Gail Weatherill: 14:28:59

It's called educate, educate, educate. And then when you're done doing that sit down and do some educating. We need to actually approach our medical schools, our nursing schools, our programs that are training people, the people who spend the most amount of time with these folks that are in facilities are the nurses aides, they are the ones that's your lifeblood, that's the backbone of the long term care system, people don't realize that, but it's true. So we need to be educating them and they want to learn, but they don't want to learn on a computer module tucked away, far from the patient somewhere, it's we need more education, we need different methods of educating people. Because so much of what they need to learn is more of a tactile, you know, nonverbal sort of communication, you can't teach that in a book or in a video, you have to be there with them and tell stories and see how in those stories, principles are demonstrated. But if we're doing that in our medical schools and our nursing schools,

Susie Singer Carter: 14:31:10

Yep. your.... Yeah. Again, you're right. Again, you're right. And I keep telling people that it's and in our programs that train nurses aides, and then if we're like, I'm not, you know, some, some people don't, don't really want to revisit what they've been through because it's hard. doing it in the hospital, doing it in the facilities, you know, And, and it feels like, you know, maybe, you know, it doesn't like maybe it's not healthy, that you're still it's once again, it's a humongous, humongous problem. thinking about that once your loved ones gone. But I feel I feel differently. I feel like if I've, I've seen and learn things And it's tempting to say, Oh, God, there's no hope for this. that I can't unsee and unlearn. And so therefore, I want to, I feel I feel the responsibility to pay it forward. I feel a But that's not true, either. You know, we have a responsibility. responsibility to say things and to and to educate and, and some people are aren't gonna like me for it and they're gonna think Those of us who know and those of us who are aware, have a I'm angry. I'm not I'm not angry. I'm heartbroken for people. That's all Yeah. And and I want people to be able to take responsibility to act. And when we don't, we're not only letting power back. And and the only way is by knowing what's going on, ourselves down, we're letting down our children and our and by sharing what you've learned, bless what you do every day. You share what you've learned, was such an immense grandchildren. Because I can tell you that Alzheimer's and heart. You're, you're a lovely, lovely lady.

Gail Weatherill: 14:32:26

Oh, thank you, darling. Thank you. I knew that I needed a big heart would come in, come in handy some days it these other types of dementia are not going anywhere anytime soon. over the course of 43 years of a nurse has gotten broken more than once. But I'll tell you it's - it gets bigger each time it gets broken.

Susie Singer Carter: 14:32:43

I love that. My mom would my mom would love you she would be going,"Girl. Let's go have a cup of coffee and talk about things!"

Gail Weatherill: 14:32:51

I'm telling ya. We'll drink a little mash and talk a little trash. Let's go.

Susie Singer Carter: 14:32:53

That's right. Oh, my mom would have loved you. My mom would have either loved her too. Well is there anything else that you want to bring up that we didn't bring it up because we could talk forever but I just enjoyed it anything else that we might have missed? I can assure everyone that we'll have all your all of your ways of contact in the show notes. Where to find your book, where to find you where your Facebook pages and if you want some good support, get a hold of this lady. She's she's a she's a gift.

Gail Weatherill: 14:33:25

That's it. My motto? I know everything and what I don't know I'm not afraid to make up so go ahead and call me up...

Susie Singer Carter: 14:33:34

Barooom chuck! And I love that you I love that your philosophy about heart. We're all about heart right, Don?

Don Priess: 14:33:39

Yeah. Absolutely.

Gail Weatherill: 14:33:40

What gets us out of bed in the morning? Love gets us out of bed in the morning. You know love lets us lay down at night and put our head on the pillow and know that because we were alive that day, the world is just that much better than it was if we hadn't been there. So it doesn't get any better than that.

Don Priess: 14:34:02

Absolutely. And that is because as we always say, Love is powerful. Love is contagious, and Love Conquers Alz. We thank everyone for listening and joining and please do if you if you like what you heard, you know, like it or subscribe or tell other people about it. We got to get the word out, share, share, share, and, and Susan, anything else you want to say before we say bye bye.

Susie Singer Carter: 14:34:28

I just want to say have a lovely, lovely rest of your day night. Whatever time you're listening to this middle of the night. Who knows? Anyway, thanks for listening, and we'll see you

Don Priess: 14:34:39

See you next time Bye. Bye bye.