Love Conquers Alz

DR. ANNE KENNY: Your End of Life Choices in Alzheimer's and Any Disease

November 28, 2022 Dr. Anne Kenny, Susie Singer Carter and Don Priess Season 5 Episode 65
Love Conquers Alz
DR. ANNE KENNY: Your End of Life Choices in Alzheimer's and Any Disease
Show Notes Transcript

In episode 65, Love Conquers Alz hosts, Susie SInger Carter and Don Priess dive deep into the world of Palliative and Hospice Care with their guest, Anne Kenny MD, Professor of Medicine with specialty training and board certification in Geriatric Medicine, and Palliative and Hospice care.
   Dr. Kenny has found immense joy in her work with individuals and their families managing issues related to the diagnosis of dementia. Her experience in partnering in the care of these families touched close to home when her own mother was diagnosed with dementia. Dr. Kenny’s shares her expertise and experience in
inpatient and outpatient Palliative and Hospice care which were called on when
her mother reached the final stages of living with dementia.
   The Kenny family worked together for their mother’s graceful exit from this planet Dr. Kenny has been a practicing physician for nearly 30 years and has been recognized by her peers as a “Top Doc” in Geriatric Medicine. She has been honored with a Brookdale National Fellow and the prestigious Paul Beeson Physician Faculty Scholar awards.
   In addition to her clinical practice, Dr. Kenny lectures to both healthcare professionals and the public on aging related issues such as osteoporosis, exercise, nutrition, hormone therapy, death and dying, and frailty. She is an educator of medicine and research skills. She taught and mentored clinical and research skills to all levels of trainees including medical students, post-graduate residents and fellows, and early faculty members. She has been active investigator participating in clinical research focusing on various aspects of aging. She has over 100 scientific publications
and presentations focused on improving the care and functioning of older adults.

You can connect with Dr. Kenny here:
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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 Priess.

Susie Singer Carter:

Hello, everybody. I'm Susie Singer Carter.

Don Priess:

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

Susie Singer Carter:

Donald. How you doing? Happy Thanksgiving.

Don Priess:

Do you have words? You have words to say?

Susie Singer Carter:

I have a lot of words. I have so many words. It could take a long time. But it is Thanksgiving weekend. So I'm grateful for this, this show this platform and to be able to speak to everybody out there that needs a community and wants to to be a part of the community. It's an honor. So I just wanted to say that. And and I'm kind of grateful for you, Don, because you're my BFF.

Don Priess:

Oh my goodness. just kind of just kind of okay.

Susie Singer Carter:

Yeah, when I say kinda that means greatly.

Don Priess:

Yes. And vice versa. Yes.

Susie Singer Carter:

So it's been, it's been an interesting year, we've got things to do, and missions to accomplish and I am wearing my happy face. So you know, fake it till you make it?

Don Priess:

Yeah, absolutely. Not too much faking? Yeah.

Susie Singer Carter:

That I have a happy face necklace.

Don Priess:

Whoa! That is the theme today.

Susie Singer Carter:

The theme today is happy faces. Now we have them, right. We do

Don Priess:

we do we have happy faces. Well, you know, when you consider the alternative, it's actually better to be happy. We I just I just learned that

Susie Singer Carter:

It took you a lifetime.

Don Priess:

It did. And just now do all the happy faces. I learned that it's better to be happy. So

Susie Singer Carter:

Look at that! I'm like, I'm like an influencer? Can I get Can I get some of the sponsors now?

Don Priess:

We'll try any way we can.

Susie Singer Carter:

Yeah. So. So I am I have started the documentary. I'm three quarters through of the script for No Country for Old people. And I'm deep in it. I'm like, waist high in this world. And it's Wow, the deeper I get, the deeper it goes. It's like there's no end. And well,

Don Priess:

because when you were going through it also, you know, you had no perspective, you weren't in it. And now you're now you're looking at it. And you know, and laying it all out and going and it's even more insane, I think than you thought it was at the time, even though it was pure insanity, then. So,

Susie Singer Carter:

yeah, it's really it's a lot. It's a lot and the more that I talk to the people, you know, as opposed to talking to caregivers and talking to people in the health care industry on that side of the table. I mean, it's just as bad. It's, you know, it's just as bad. Everybody's got their hands tied. And that's why I'm so excited to have our guests today. Because it's good. We need to hear other perspectives. And I mean, honestly, no one no one is a winner except for except for the very tippy top. Nobody wins in this system right now. Everybody is suffering. So why don't you introduce our lovely guest?

Don Priess:

I'd be happy to. Anne Kenny MD is a professor of medicine with specialty training and board certification in geriatric medicine plus, palliative and hospice care, a practicing physician for almost 30 years. She's been recognized by her peers as a top doc in geriatric medicine, Dr. Kenny lectures to both healthcare professionals and the public on aging related issues such as osteoporosis, exercise, nutrition, hormone therapy, frailty, and death and dying. She is the founder of together in dementia, a website and educational service regarding living with dementia and caregiving. And she's the author of making tough decisions about end of life care and dementia, an important and compelling resource that provides valuable tools and lets caregivers know they are not alone. Sounds like she just might be qualified to talk about our subject today. So Without further ado, let's say hello to Dr. Anne Kenny. Hello, Anne!

Anne Kenny, MD:

Thank you for having me. This is so wonderful.

Susie Singer Carter:

Thank you for being here. You're so qualified and you've done so much. And and like Don said, I'm not gonna go all over it. But I do have to I do have to like dig a little bit and say, what is it? Top doc? How do you become a top dog?

Anne Kenny, MD:

A top doc is just something that gets voted. And I used to say it was that my mother got multiple votes and stuff, the ballot box. But then when she died from dementia, I couldn't say that anymore. It's, I have no idea what it is. It's just a slight wrecking. It's kind of are you a doctor's doc? Would a doctor send their family? To you, I think is how most people wait.

Susie Singer Carter:

Oh, that's so wonderful. That's a high. That's a high honor. We're lucky to have you today. No, that's

Anne Kenny, MD:

I thik my mother stuffed the ballot box.

Susie Singer Carter:

Well, then she's a good, that's a good Mama.

Anne Kenny, MD:

She might be a little but partial.

Susie Singer Carter:

What brought you into gerontology?

Anne Kenny, MD:

Believe it or not, I actually fell in love with it. When I was in medical school, I had a lecture series. Jane Potter was coming back from the NIH and did a short little series. And as soon as I heard about it, I, I was hooked. It was this balance of medicine and rehabilitation, a little bit of psychiatry, it was a little bit of everything, but for the whole person and their whole family. So it was, it was the first time I really saw medicine approached much more holistically. And that kind of, you know, just the lungs, or just the kidneys, or just whatever compartment very compartmentalized. And you know, they were, they were telling us in medical school that when you pick a specialty, really start to think about what's going to be your bread and butter, what you're going to see and if and that will be what you spend most of your days doing. And so for geriatrics, most of my days would be working with older people who likely were living with dementia. And for me that at that time, this was again, back in the late 80s, early 90s. That was people who really had no voice, and were really underrepresented, completely there. You know, love conquers all was out not out there yet, there was very little going on to help to help. And so it was kind of that combination of it was holistic, and that it was this underserved area, which really offers you a lot of opportunity for creativity and for approaching things a little differently. And I that was very appealing to me.

Susie Singer Carter:

It's very tribal, because it's it's it's comprehensive. You're taught you're dealing, when you're dealing it's it's you know, both ends of the spectrum. When you're dealing with parents with young children. You're dealing with the whole family. And when you're dealing with someone who's you know, elder, you're dealing with the family as well. Because Absolutely, you have to and yeah,

Anne Kenny, MD:

And some people don't like that. Yeah. And I thought that was like, you really come at it as a team, I hope that you really come at it as a team. And that I wouldn't be the head of that team, I would just be a piece of that team. And what I loved is, once you're, you know, often in Doctorhood, people can get put as a head of a team, when they shouldn't be they should just be part of the collaborative team that's that's doing the best care possible.

Don Priess:

How do you communicate that to a family? Because I think what you know, people naturally come in and they expect you that's the doctor, you are the authority, you know, everything you know, you've done this before. So what do you say to a family before you start dealing with them?

Anne Kenny, MD:

First, when I first meet people, I say we need to get to know each other. I really want to know who you are. And they'll say, Oh, well, I have high blood pressure. And I'm like, no, no, who are you? I need to know your story. And I know that. I mean the beauty of people coming I again, I feel so honored. The beauty of people coming to a doctor's office is almost like going to see a spiritual person or whatever people are so usually so open and so vulnerable and so willing to share who they are. And so I have this, this huge privilege that people will open up so quickly. And so when they start to tell me about their medical issues, I'll say I need to know who you are. And then that will help me decide what gets off First, and then a lot of times, they'll say, but I just need to know what you would do. And I'll say, okay, I can give you some choices. But then I want you to start a dialogue back and forth with me, which one resonates. And then we'll go do a deeper dive into that. But if I say, Your choices are X, Y, and Z, you can see the light in their eyes when Why is what they're, they're like, oh, and then so. So we then kind of start to talk more about why if I lose them again, then I'll back back up and go back to XYZ. And we'll talk a little bit more before we kind of go down a different road, just because there's so many choices. And I say that there's so many choices, there's no one right way, you need to touch, trust your intuition, and then guide me with what information you need. I, you know, I need to know how this this system fits into your life, your family life, your your holistic life,

Susie Singer Carter:

you're just touched on so many things to unpack this and what you just said, because, I mean, first of all, does everybody have the time or take the time to get to know their patients, like you're saying, and it is an honor to have people come in and trust you. It's also a responsibility to it's a great responsibility. And so, you know, I can remember my grandmother, like, I mean, her big greatest thing was going to the doctor at that point in her life. It was like hungry, the doctor tomorrow. It was heaven.

Anne Kenny, MD:

Yeah, honestly, people. Oh, my goodness, my mother hasn't spoken this eloquently in months. I'm like it, because, you know, they're going on this big outing, and somebody's gonna listen to them. Of course, they're their brand best forward. Again, I knew that. And I was so I felt so privileged that that right, I got to be part of that. And I

Susie Singer Carter:

But you're also intuitive. took it to my

Anne Kenny, MD:

I hope so

Susie Singer Carter:

that's and you, you were you touched on that, you know, you're saying first of all, you get to know the background, which is so amazing, because I tried to say that to so many people in my mother's journey is that, you know, and even when my daughter had an issue with her baby, pre prenatalally, and I kept trying to say this is the data. But now let's see how that data fits into what is going on with you. And that's the same with anybody who has dementia, Alzheimer's, or you know, anything, cancer, whatever. But we're talking specifically about older people in dementia.

Anne Kenny, MD:

And the hardest part about dementia is, is there's a point where you really lose your voice, I mean, either metaphorically or figuratively, or actually. And so then knowing more of that, who, who they are. And that's why it's so wonderful to have the whole family there. It's fascinating because you get to see family dynamics. And often you have to kind of confront some of those family dynamics and say, Okay, that was then now let's, how can you get to a new place, as the daughter or the son or the sister or whatever, because now we have to become this individuals advocate, as a collective. And if we don't, I get that you're still, you know, mad about something that happened when you were eight. But let's put a pin in that for a minute. And we'll you know, we'll get back to that, because that's part of who you are as a caregiver as well, like, can you kind of separate from that come forward to help the person that's in front of you? And if you can't, that's okay, too, then we have to make sure that somebody else comes forward? And does that caregiving, right. And we still need to take care of you because you're still probably going to be the voice. And I just think all of that is fascinating and exciting. And it takes a creativity. And, and I think it usually as much as I mean, I know you've been on the caregiver journey, I was on the caregiver journey. I hated it. But at the same time I grew from it. And so I think sometimes when you go through those hardest things, that's your hero's journey. And so

Susie Singer Carter:

That's right.

Anne Kenny, MD:

I love when the family is there. And I not only get to help with the person living with dementia, but I get to be witness to hero's journey after hero's journey after hero's journey and I think your podcast name says it all. Love conquers all ills. I mean, we all finally get to that point where realize, oh, it boils down to Can I get to that place of love? And then everything kind of opens up in such a wonderful way.

Susie Singer Carter:

I don't know if you got a chance to see a film that we did, My Mom and The Girl?

Anne Kenny, MD:

Lovely.

Susie Singer Carter:

You did? Okay. Thank you. And but I you know, I say that that year was the hardest and the best year of my life. I think it Right?

Anne Kenny, MD:

I'm wi Absolutely. My mom's journey with dementia was hard, but transformative and I don't

Susie Singer Carter:

Transformative! I'm such a better person. Now...

Anne Kenny, MD:

I used to have an emotional range about this wide. And after, you know, I it won't show on the screen. It's so, you know, I moved on to some low, low, lows, but I went to just such new places. It was amazing.

Susie Singer Carter:

Me too. I mean, my I told my mother, like, the day before she died, I said, I you know, I love you so much. I, you taught me how to live and now you're teaching me how to die. And I was so afraid to die my whole life. My whole life. Since I'm three years old, I would have had anxiety attacks. And, and my worst thing was losing her. And she despite this horrible six months that she went through at the end, she had such as this gerada v and this this, like, just the love of the love. And that I mean that just showed so deeply and so strongly that I couldn't, you can't deny it. I mean, Don was there during the journey and hit you know, he can attest to it. It was like anybody, you would think that anybody that was going through what she went through would have just crawled up into a fetal position and just melted it away. And instead, anything that was just slightly wonderful. She would just light up.

Anne Kenny, MD:

My mother was like that, too. There was definitely not great things, but she never lost her love of living. She just like your mom.

Susie Singer Carter:

Yeah. Oh, well, it shows in you, by the way. Yeah.

Anne Kenny, MD:

And you, too.

Susie Singer Carter:

Oh, thank you.

Don Priess:

It's funny, because you know, you, both of you, you know, you both lost your you know, your mother in a similar situation. And, and I think, you know, you I unfortunately, I think you as a doctor may be in the minority as to the way you look at things like this. And I say that is like, how important is it to know who that person was? You Because the doctor comes in, and they only see the person who they who they are now, sometimes the, the doctors and even the nurses, they they just don't look at them as a person. They look at them. It's just what's lying there right now.

Anne Kenny, MD:

You know,, I didn't realize that I was maybe a little bit different as a doctor until I was my mother's health advocate. I learned how to doctor I did research for about 30 years in the morning. That and that was on people with frailty, and osteoporosis, but mostly frailty. So these were cognitively intact individuals. And I wasn't their doctor, I was the research doc who and they were coming into my clinical trial. So it was a little bit different relationship, which was nice. So they were there to help me. And they made sure that they helped me in all kinds of ways. They were just, you know, their voice, they had a voice and they had a doctor to hear them. And it was wonderful for both sides. And what they would do is they go honey, this pill makes me feel like or, you know, this thing you're doing to me is demeaning, or blah, blah. And they, they basically trained me. And so in the afternoon, I would go take care of people living with dementia and their families. And I am because the voice was I would say, Well, my, my other co patients are telling me that this antibiotic isn't great. And they, and they because they had their own voice. They they told me that it takes about three days to get over a urinary tract infection. Most of the time, sometimes it goes into something terrible, like sepsis, but most of the time most our bodies can take it and what those people with frailty taught me and even though their bodies were frail, their spirits were definitely strong, which I think a lot of people with dementia spirits are strong, but they just don't have the voice anymore. And they taught me that their body the body is really very resilient. And that less doctoring, as we age less. Medicalization is so much better for an aging body, that the body will actually do really well. And so they really taught me to kind of be less of a medical doctor and more of a listener and more of a like, let what are you telling me and then let me look for the symbolic meaning in that. Let me look for the under the under meaning in that and then let's find a way forward that fit in sometimes there was like a sprinkling of medicine, sometimes a sprinkling of therapy, sometimes, you know, community what, but I learned that the best medicines are not medicine. And so and then to your other point done, you said I found as I was developing this pellet of practice, it takes a couple of minutes to get to hear someone's story just Just like so if you start with a story, the rest of the rest of it goes so much more smoothly. And so for me, it was a time saver to know who I was dealing with. It didn't take me more time, it took me less time. Because that makes sense, because that's like a family member would come in, and maybe be saying you and I'd say, you know, what I heard when you told me the story of your dad, who, who again, might be living with dementia and didn't, wasn't able to is that he had, and then I would name what I heard, he had this kind of spirit or this kind of belief. And so I'm going to say, why don't we? What do you think about this path, which might align with the way he was living up to the point of having dementia? And you could see the fact on their their shoulders would go down? And they'd go, Oh, is that an option? And I'd say, of course, it's an option, you know, like, but I think when you don't get to know the person, we almost do a one size fits all. And once I mean, one size fits all, does it not work in almost anything, especially in medicine.

Don Priess:

But how do we get some medical community to take on this this path, then because this is not the night? This is absolutely...

Anne Kenny, MD:

And I agree with you on that. I don't think it is the norm. And so 50 years ago, cancer was often not told to you by your doctor, it was often kept from the family member, it was all secret and people didn't talk about it. And I think that's where we are with dementia now. And what happened is that people living with cancer became their own advocates. And that that's and and they moved the medical system forward. And so I think some of us are doing the same thing with dementia is we're getting people living with dementia early in their dementia, more voice through some organizations, podcasts like this are becoming where people are going to more than their doctors to get information. And honestly, I feel like we need to demedicalize Alzheimer's a lot, much like the cancer movement kind of said, Look, I'm more than a cancer diagnosis. I'm a whole wide person. And so I think it will get right sized, when we all kind of start going, Oh, dementia is just like, I mean, why can't it be like cancer? Why can't we say, Oh, the person with dementia is this whole big old person, they're changing, no doubt, they, but they still have their strengths. And, you know, we have to, if, as I get older, you know, here's my reading glasses I, I grabbed, if I start to change how I'm going to walk in, I need a walker, I'll be the first to get a walker, I'm gonna get hearing aids as soon as I need them. That's adaptation, I think we're gonna get to the same place where we see dementia as a chronic disease, not as this immediate death sense. I mean, I know I wrote a book about end of life. But I see dementia is something you live with very well for a lot of years. And then there's a point where you start to die from it. And if we de medicalize it, I think we die better from it, that it's not as turbulent for firma, but I think once the the lay public understands kind of the living with, and then when it gets to the point where there's that adaptation becomes a little more futile, futile, and we need to adapt more to the dying body, not the the Living Well, with.

Susie Singer Carter:

No, I think you're absolutely right. And I think, you know, and again, I'm gonna sound like a broken record, but I think it's, it's very similar to children. And, you know, when your children are gaining skills, as they grow, babies come with none basically, just their, you know, their autotomic skills that, you know, to breathe to heart, they're happy. But but you know, they're gaining skills, and we don't, we don't put expectations on them until they get those skills. We guide them till they get there. And we get and we do it hopefully with grace and with love. And we realized that they can communicate without words. And we can communicate to them without words very well, right?

Anne Kenny, MD:

Probably at least 90% of communication is nonverbal.

Susie Singer Carter:

That's right. And so when you know, on the other end of the spectrum, when someone has dementia, and it's advanced, and they start to lose more skills and more skills, they're just losing skills, but that person is still they're always to the very to the very end. And you just have to approach them with different skills as you would a baby, a child, a toddler, and so on.

Anne Kenny, MD:

The hard part is that we as a culture, have lost kind of what natural death looks like, you know, once antibiotics were invented, kind of the shift made it to the hospital and a lot of deaths didn't happen at home anymore. And I think about 100 years ago, people died fairly gracefully at home. It's been in the last 250 years or 50, to 100 years, that we've kind of made that transition to dying in a hospital, which most people don't want to do, you know, they would rather be surrounded by family, but we've almost lost our ability to know how to die at home. Like, we push people into hospitals, we, we don't have the skills that people used to have that just sitting at the bedside is often the best medicine and the body knows how to die, if we just get out of the way you sleep more. And when you wake up, you're probably going to have some of those good moments that, you know, the best moments that people who live with somebody with dementia know those moments when all the sudden you're like, oh, yeah, I get I get this big smile, or you get these big squeezes or...

Susie Singer Carter:

I love you out of nowhere,

Don Priess:

of course not. If they're shot up with morphine, constantly, you know, there's times where that's probably overused or not used at the right time.

Anne Kenny, MD:

I don't. And I'm, honestly this is where I'm gonna sound like, I'm talking out of both sides of my mouth. But I'm actually there's two times that I think we under treat people living with dementia, and one of them is pain. And, and I think morphine at the end of life is a great drug. And, and even at the moderate towards the end of life, there's a lot of medicines that have very long half lives. And if you put him give them to people with dementia, they they hang on way too long. But morphine is pretty like quick in quick out and so you can kind of use it and then get it out of

Don Priess:

Yeah, just basically just know somebody like here. there when you don't need it anymor e. So I think that what you're saying is like really high doses of morphine, but low doses.

Anne Kenny, MD:

Yeah, you don't need to snow people.

Susie Singer Carter:

Well,

Don Priess:

But I'd like to get Suze. I don't see your camera

Susie Singer Carter:

That's okay. I'm on Don't worry. You anymore. sure? prob. Yep. Don't worry. Last time. Yeah, I promise you, I'm on. Yep. Yeah, we'll get into that Don,, because we need to, we need to segue into that I kinda want to know. So for me when my mother went into the hospital, because of a stage four wound, and that went into sepsis. And that went into pneumonia. And that went into kid low kidney function. And it triggered a lot of situations that could have been treated better, and would have given her last six months, a better quality or eight and maybe even another year, we don't know, because, you know, the day before she went into the hospital, she was as my mom ever was at that stage. Right? So I think, again, it goes back to what you said about looking at people as individuals, and what is their base? And who are they? What would they like? And, and and a lot of as much as the the, the public doesn't understand Alzheimer's and dementia. The medical field in general doesn't really understand it, either.

Anne Kenny, MD:

I say you get on the medical conveyor belt, and you know, if you come in with this, you get, you know, right,

Susie Singer Carter:

yes. I mean, I literally in that when my mom's in the hospital during COVID. I mean, I was I wanted to get them to FaceTime. So she would know that I was there. And when did the charge nurse said honey, she doesn't talk. And I thought, Oh, my God, you you don't get it, as most people don't. And it's, it's really important that people do because, you know, there's, there's so many first responders that make mistakes. And my mom ended up in, you know, locked up in a mental ward for seven days, plowing her with Depakote and that's when she never walked again after that, and she was very healthy physically.

Anne Kenny, MD:

And that can take somebody living with dementia. And if you don't do things just quite right, there's this kind of gradual decline, but you can make big step offs. It was gonna go one time, but at the same time, yes, maybe later if if she had been

Susie Singer Carter:

later, right.

Anne Kenny, MD:

I would love to kick that can down the road.

Susie Singer Carter:

Right? Wouldn't we all I mean, this, this is the thing. It's like, yes, it's a it's a sentence. But in a way, we all are sentenced

Anne Kenny, MD:

Absolutely.

Susie Singer Carter:

Right? So it's just a matter of time. And so all we can do is honor the time that is now so if my mother, I have no idea how long like my mom lived with it for 16 years. So we have no idea how long one has with this disease when it's going to, you know, kick to the next level. But in the meantime, let's honor the level that they're at now and not and not kick the can down or kick it closer, you know, because they we all deserve the time that we have here. I mean, we all know we're on borrowed time and in that's, that's that's the nature of this game.

Anne Kenny, MD:

That's the human existence. But

Susie Singer Carter:

That's That's the human existence.

Anne Kenny, MD:

...your spiritual mother was still in there saying,," okay, honor this part of me."

Susie Singer Carter:

I'm not ready and my mom kept saying she wasn't ready. She was I kept saying to every doctor, I promise you I'm not living in, you know, LaLa Land. I know my mother will die and will die probably soon. But right, she's not ready right now I'm telling you, I know her she's not ready.

Anne Kenny, MD:

So, I mean, I mean, there are statistics on that, that and I walk into a room and I say that to people, I say, I'm, you know, I can tell you where your mom is in the dementia journey, from a functional standpoint, and that can help guide you. But no matter what 10% of people want everything done till the very end. And that's a fine decision that, and in my family, I come from a family of six kids. And there was a conversation I needed to have with them about where my mom was. And I needed every I wanted everyone to be on the same page about what we were going to do and why we were going to do it. So I went around the room. And I asked all of us to say what we would want if we were living with dementia. And I have one brother who said, who really valued cognitive acuity. And so he said, as soon as I saw show any signs of cognitive loss, I want to be put on an ice floe and set out to see. And at the other end of the six kids, I have one who said, God gave me this breath, I want to take every breath that God gives me. And so we had in my six siblings, you know, I want no cognitive loss to I want to live every breath I am given no matter what. And then there was the other four of us somewhere in the middle of that, obviously. And so everyone's stated their opinion. And then I said, Okay, we've all so now we know where we're all coming from. Now, what do we all think Mom would want? So let's all say out loud, where we think Mom would be honest, that was pretty consistent, because my mom was pretty good at talking to all of us about what her life wishes were. And I loved that, that everybody could then because I think that as the conversation started, everybody was coming at it from what they would want, you know, at first, what would they want? And I think that's Suzy, what you're saying is sometimes the doctors are like, Oh, this is our real, this is our reality. Well, we're jaded, we're in the hospital. That's a jaded reality. So by getting my six siblings to talk about their wishes, and then reframing it to what would mom want, everybody was easily and then we all respected that. This is hard on the eat the other five, because it isn't quite what each of us would want. So it actually built compassion between the siblings, and still to focus on what my mom wanted. And that's, and that's all I needed. I needed everybody to come together on that on the same page. And I was supposed to be a family when it was all over. And I think we got there. But again, it was part of that huge journey that is not necessarily always fun, or always easy. And those were that was one of our conversations, but I think it was really helpful.

Susie Singer Carter:

It sounds like it was and, you know, I to that point. I remember and I've talked about this - the palli, there was a palliative doctor that called me during, when my mom was in the hospital, and he said, listen, anything that you say is fine, whatever you want, I'm here to help you. But, you know, I'm going to ask you this question. What would your mom before she had dementia? How, what would she want? And especially because my mother had it for so long? What my mom would have said at 70 was a lot different than what she was saying now. And so it's not a fair question sometimes. Because when someone has a long term, when my mom was 70, and full of piss and vinegar, and she would go and visit my stepdad, or my step grandpa in the hospital, and she goes Susie, when I'm you know, just, she didn't want to be in a home. She you know, that whole thing. Then once she got dementia, and once I say I walked over the bridge, and she embraced it. She was so happy. And every time I would see her, I'd say mommy, how are you? And she go, I'm great. I'm alive. I guess Life is good. And she was so happy that I have to I had to look at the stage that she was at and not where she was when she was 70 and full of bravado and full of that kind of thing. I was like, ah, you know, because that's so far in advance. Right. And I said that to people when they said, you know, in the hospital like your mom's 89 I mean, you know, and I go okay, I I get what you're saying. But when you're 89, you tell me how you feel. Do you want to just go?

Anne Kenny, MD:

You know, 89 is just a number. Right? It's just a number.

Susie Singer Carter:

exactly.

Don Priess:

Absolutely. Yeah. Yeah, they need to be there's plenty of people older than 89, who are living very full lives

Anne Kenny, MD:

I think, again, I'm very fortunate because my day job was to see families and people living with dementia. And I got to see people who were doing it beautifully. And I got to see people who weren't doing it not so beautifully. And so I knew. What's the difference? It's not the people live in it. Right. And your mom embraced. She, yeah, she embraced her today. And, and that's wonderful.

Susie Singer Carter:

She did.

Anne Kenny, MD:

Everybody does. But yeah,

Susie Singer Carter:

no, they don't.

Don Priess:

There's a very natural question that people ask, and it's similar to what we got a little sentiment is basically, they asked you the dot, well, what would you do if this was your mom? What would you Is that a fair question? Is that I mean to the doctor,

Anne Kenny, MD:

I think I would be careful what doctors I ask that too. I say this all the time. If you go to Midas, you're going to get a muffler, right. So if you're going to a heart doctor, or you're going to a lung doctor, you're you have to remember that what they see and what you're, what you're experiencing maybe two different things. And there's a lot of doctors who will propose doing all kinds of interventions, but they say that if it were them, they wouldn't do those things. So it's it's, I think you I think it's tricky. I think you have to, like, if you really trusted somebody, I would ask them that. I think that's fair. If you feel like you know them enough, and you like their judgments. But I think a doctor that I don't know, I'm not sure I would ask that to

Susie Singer Carter:

Don. It's like having somebody like going to somebody that you don't know and saying, how should I dress for the Academy Awards? What if they have the worst taste? The same as yours?

Anne Kenny, MD:

I mean, don't come to me...

Susie Singer Carter:

I mean, yeah.

Don Priess:

Hard. Yeah. But it's so hard. Because sometimes the doctor asks you, What do you want to do? And it's

Susie Singer Carter:

like, oh, I got that all the time?

Don Priess:

How do I how would I know that? As a person,

Anne Kenny, MD:

What I would ask them is, Can you outline maybe the three top choices? And tell me what happens if I do that? And if I don't do that, I think that's what you're getting at is what happens? Because what people say to me is, I don't want to regret that I did too much, or too little. How do I how do I know if I did too much or too little? or too little? So I like to tell people, okay, if we do this, you know, this, like say this is the most invasive, the most intensive, this, this may happen, you may have a cure, I mean, not for dementia, but for something else, you may have a cure. But here's how much it'll cost you, you know, like, this is the bird. Yeah, if we do something in the middle, you'll probably get this probably is a big probably, but we can still turn around and do this one, or we could still back off, or if we do this one. And then I think you need to know, is it like, what happens? Is it kind of, is there no going back? Or can I do things, you know, and move them around? And so I'm often saying to people, okay, if right now, you don't want to do anything that invasive? Why don't we just watch it for three days and reevaluate. And in three days, we'll decide what we're going to do it and honestly, it's the same with I know your mom went through like sepsis. Sometimes people will say, Well, if we don't treat this, there's a really high chance she'll die. There's a high chance but there's also a chance she might not die. And they don't tell you kind of the end, we could just wicked kind of stop this whole snowballing medications causing side effects by giving it up to let's see what she's got. Let's let's see how well she's doing and, and see what happens. But

Don Priess:

It's a risk-reward thing...

Anne Kenny, MD:

you know, in Susie's case, it sounds like they didn't give her the options they gave her like, we're going to do this because if we don't this is going to happen. Or you had to ask for all you have to ask for option A They only told you option C and never told you option B of choices.

Susie Singer Carter:

Yeah, correct. And that that comes down to the system and that comes down to lack of staff and lack of time and you know, and all that stuff that they're just trying to get get through it, get through it, get through it without getting pings right, without getting for liability or anything like that. And not to get you know, mercenary here but, but the truth is, is that, you know, when my mom went into hospice and this is my next question to you, I had no idea the difference between hospice and palliative. I was Just learning that word, honestly. And going back to something you said before, like the process of death, who knows the process of death unless you live in that world, nobody wants to know it, we don't know it, we go there where we have no idea what the process of death is. And, and when we are told anything, a lot of times it comes even with the hospice professionals, very clinical and not, not individually. So it's told to you like a fact on Wikipedia, this is what happens will, you know, you can't I know that for a fact, just because I may not be a doctor. But I know that that you know, one size does not fit all.

Anne Kenny, MD:

Well, I have to say that. In the different hospice organizations that I've worked for, or worked with, they they don't get dementia even very well. And I've usually had to be the one to say and, and for primary care, doctors don't offer hospice to a lot of people who are living with dementia very, as often as even. Cancer definitely gets offered heart failure and kidney failure, not as much dementia even less. And so I think that, you know, what, palliative care, I think of it as it should be in everybody's care all the time. Like if I get a headache, I take a Motrin because it makes me feel better. That's palliative care, going for my quality of life that today I'm going to have the best day I can have that's a philosophy right? Now there's there's palliative and hospice as medical benefits as well. And so I think that's what you're talking about is what is the hospice medical benefit. That's not so much the philosophy that's a governmental reimbursement for the care you get, that fits some criteria. And so there is a there is a bit of one size fits all in that you have to meet the criteria, or you have to get the doctor to agree that you've you meet some criteria. But I love hospice, because I love it in, in theory, because of the benefits you get, you get more access to dirt, durable medical equipment, so the hospital beds and the walkers and all that gets kind of usually taken care of, and the medications that you need get taken care of. And you get x I mean, I think that's where you get the holistic approach, you get the the spiritual leaders, and you get the social worker involved. And you get the volunteers who really just are such loving individuals usually and you know, you get the bigger package, you might get pet therapy more often you you just get a different package of things. But but I know it you're but unfortunately, we often only bring in hospice at the very very end of life. So you only get three or four days and then you really get kind of that medical push, which is what Don was saying, you're gonna get offered morphine, and you're gonna get offered Ativan, and you're, you know, and maybe that's not what we need.

Susie Singer Carter:

Can I describe what I think palliative and hospice is from my point of view that I just learned, okay, and you can tell me that I'm wrong, because I'm going to be the voice of the of, you know, family, hospice for dummies. Okay. And that's me

Don Priess:

because yeah, this is not what you learned. This is what you experienced. This is what different very different from what you just described.

Susie Singer Carter:

Right? So when my mother was put into hospice, which was right out of hospital, and that was because of a weird event that happened in another emergency hospital, where my mother was being said, told that such a long story, but she was, they told me she was on life support and that I should take her that we should put her into comfort care, and let's let her die. And I said if she's on life support, yes, of course. But she didn't die. And she didn't die. And she didn't die and she wasn't ready to die. And so when they released her, they recommended that she go into hospice. So I didn't know the difference. What I found was when my mom got back to the facility, she had a G Tube, but it supposed to be temporary while she was intubated. When she got back to the facility, they said it was too invasive to remove it and that she's going to ask for it. I said, but she's not aspirating. I'm feeding her juices and smoothies and she's loving it. And they said, well, it's too much of a risk. Well come to find out later a G Tube is much more of a risk of aspiration than anything else. And it causes a whole slew of problems and I didn't want her on that G Tube. I would have rather her aspirate from juice and drinking orally than anything else, and that would have been fine. I said I'll sign a release. I don't care. But it was you know, at the end of the day, it came down to the time they didn't want to invest the time I'm into getting my mother to be able to have an oral experience when she went into the hospital now, they wouldn't take out her catheter, a Foley catheter, and I kept asking them to she went back into the hospital hemorrhaging from that Foley catheter, and they weren't treating her wound, I asked for a wound doctor every single day, they never sent a wound doctor. And what I found out from the doctor in the hospital, he said, because it's not covered in hospice, she needs to be in palliative. So and it wasn't about extending her life, Dr. Kenny, if someone is in pain from a wound, let's treat the wound and get rid of it. And then whatever her body's going to do on its own, fair enough, but that wound is not normal.

Anne Kenny, MD:

So from this whole scenario, there's so many teaching points, right? There's just so many. One is Do you were not listened to, which was wrong. One, if they ever say to you, you can't have that because of hospice. And you want that, you say, I don't want hospice anymore, and you go right back to full coverage on Medicare, or, you know, back. So people should be told as soon as they sign up for hospice, that this is a different, usually full philosophical road and and the direction we're going, and you can back out of it, any time you want, it is not etched in stone. And so you say, if I want this thing, then get me off a hospice, get my mom off a hospice, but which is free. And may

Susie Singer Carter:

They kept saying to me said,

Anne Kenny, MD:

I'm so glad we're talking about that here. Now, right now, we should be saying, you sign up for it. So don't be so afraid to sign up for hospice because it won't often be like Susie's. I hope, I hope it'll be a much better experience. Yes, God, right. And that's why we're here right to educate that it should be better than that. And anytime, it is not what you are wanting, get rid of it. Just it, you can undo it like that.

Susie Singer Carter:

But we don't know what they offer I from from the dummy point of view me. I didn't know that because what I kept getting from the doctor was the hospice doctor, I'll check into it, I'll check into it

Anne Kenny, MD:

and then just not just say to the, so one you say, then I don't want it, and then they'll, they'll get back to you so fast. Because, you know, the paperwork to undo it to when people are at the end of their life, they still should get care, any kind of care, wound care, personal care, care, yes. A wound may not heal at the end of life, because the body doesn't have enough of the healing powers. But that doesn't mean we shouldn't take good care of that wound, just to keep it clean and as good as possible, so that it could potentially heal and pain management for it. So both of those things should have been happening, no matter what. So asking for I, I'm a hospice medical director, and I have somebody with a wound and they are getting wound care all the time. Maybe that's a Connecticut thing. I mean, every hospice in every state is a little bit different. But it's also that different hospices will offer different things. So if the hospice that you're in, in the state that you're in, and you say, if they say, I'm not, I don't cover that, then you say, give me the names of five other hospices, and then you call them up their people and say, do you do wound care? If that's what you want? And I know that's a lot of burden to the person. That's, that's doing it. But you're Susie, you were such a strong advocate. And so I can imagine that a quick five phone calls are asking one of your friends to make that phone call, you know, again, delegating some of the care out to some other people, easy enough to say to one of your friends, please do me a huge favor and call these five hospices and ask if they cover wound care. And you don't have to give out any other information. They don't have to know anything else. I just need to know to recover wound care. So you have I mean, we as individuals, as consumers have so many rights, and you're not going to necessarily hear him unless you listen to some podcasts like this.

Susie Singer Carter:

Thank you.

Don Priess:

Even worse, though, to Sue's was also that they weren't even just saying they won't do it, though. It was you're constantly getting well, we'll all look into that. I'll look into it, and then you'll never and then never,

Susie Singer Carter:

And we don't know. That's what's gonna say is that we don't as as someone that's just entering into this world that is so foreign to us. I don't know that they're not going to look into it. I don't know if it's covered or not. I don't even think of that. I think that the charge nurse told me your mom's wound is not a level of stage three. It's a stage four and she needs to see a special was, so I say to the hospice doctor, and she says, Well, let me look into it. And then when finally down the line when one of the doctors at the hospital says, we're going to put your mom back into palliative, because that's when they'll cover it. And when and it wasn't until she and it was too late to, you know, $1 short and a day too late, because, you know, they put her on a wound vac, and all these other things. But there still wasn't enough. It was like they just put the boon rack on. And like, I remember going in there because I went every day and I was like, the wound vac is off. Does anybody know why? No, we don't know why can I talk to the wound doctor? I never talked to a doctor, she finally called me and I said, she goes, Oh, well, it shouldn't be off and I go well, it is.

Anne Kenny, MD:

whenever you're in either hospice outpatient or hospice inpatient or palliative care, inpatient, whenever you're in the medical system, and you're not getting the answers you want. There is either a social worker that's involved, asked to talk to the social worker, because they're like the team builders, so say, so hospice has social workers, palliative care, has social workers, hospitals have social workers, whenever you're in the hospital, and you're not getting what you need. Talk to the social worker to be kind of the the go between Who exactly are

Susie Singer Carter:

liaising. However, I'm going to keep playing devil's advocate because the social worker in the hospice was useless. Useless and literally, I would get completely I would get like a phone call or an email, like I just want came to see your mom. She looks comfortable. And just wanted to let you know she was sleeping most of the time, but she was comfortable. And so if you have any questions, let me know. When I would show up, it was the room was hot as hell. My mom was a curse because she's not getting oral care. So she can't even open her mouth because it's so full of gunk. I had to pry the gunk out first. And it just she's she was anything but comfortable.

Anne Kenny, MD:

You needed a brand new hospice, you know, everybody every so whenever I

Don Priess:

didn't know, that was even optional.

Susie Singer Carter:

We didn't know and I'm in a five star facility that is beloved here in Los Angeles, the love it. So how would I think that there's any better and everywhere I talked to us like this is the system Suze you have, that's why I was under so much stress because I thought I'm the only line to to comfort she has, because I can't rely on anybody. I had the charge nurse at night, when my mom went back to the palliative saying, if she goes to the hospital, don't bring her back, Susie, you're a good daughter, you've done so well. Don't bring her back here. We can't take care of her. And, and and I'm only set. I'm not trying to to negate the system.

Anne Kenny, MD:

The system is broken in all kinds of places.

Susie Singer Carter:

It's broken, It's broken because what it set up to do is beautiful. And there are other I know I know there are there are Listen, the audience I know that there are hospice says that are fantastic. And they do what they're supposed to do. They are the minority, unfortunately, right now, and that's because the system is set up to make money. And that the problem.,

Anne Kenny, MD:

Well, and the other thing I would recommend, and I'm sure maybe I'll get hate mail now but your best bet is to go for not for profit hospices first. There you usually smaller. They they're usually not you they're usually working at a loss and there. But they're compassionate.

Don Priess:

yeah. But just to know that just the information that oh, you can choose your hospice, it'd be really didn't even know that was an option. Right?

Anne Kenny, MD:

And they're supposed to tell you,

Don Priess:

it's like, oh, no, this is what happened, right?

Anne Kenny, MD:

And often when you're in a hospital, they'll tell you, they'll offer you the one they're the most familiar with, and use anyone who who is being offered hospices say please give me five choices. And if they say I don't have five choices, then give me three but do not give me one. And then you can write you can look into that. And then I would personally I would look for the the one that's not for profit first and and go with that.

Susie Singer Carter:

And what is the difference between palliative? I guess I'm not I'm not seeing quite so what is

Anne Kenny, MD:

in - the difference? Again, what hospice is a subset under a palliative philosophy and if you're talking about palliative as a medical benefit. So hospice, palliative is just a construct that the medical system that that an insurance company, whatever insurance can Any you're working with has decided to call it palliative. It isn't actually anything special. It's that insurance company has earmarked extra training for the people in that area or whatever. But it's it's not its own medical, it's not its own insurance. Hospice medical benefit is the only thing that's that special, some visiting nurses or, you know, some health care organizations have decided to carve out a piece and call it palliative. And that's why basically, they're just going back to regular insurance to cover everything. But

Susie Singer Carter:

Oh my goodness that's so good to know. Guys, this is so good because I thought it was a separate thing. And the way that it was defined to me even by the the doctor that you know, that was attending, my mom was saying send her to palliative not hospice. I was like, but what's the difference? Because I thought it was an umbrella of hospice to know how they seemed to cover the wick. They seem to cover things that the hospice wouldn't,

Anne Kenny, MD:

because I was saying is your back to regular

Don Priess:

and do more treatment? And actually, yeah, medical treatment. .

Susie Singer Carter:

Yeah. And at the end of the day, I didn't want to keep her alive longer than she would naturally I wanted not to hasten, it was the was my goal. I didn't want to say I didn't want to give up on her because she was too labor intensive. Right. And I knew I was up against the state system, right? Their system. And I said, I kept saying to them, I like like you said, even even in our medical community, they don't even in hospices, they don't understand dementia, I had the chaplain come in to talk to me, because every time I asked for something, they'd send the chaplain. She said, you know, and she was like, oh, okay, here we go. She would tell. And at one point, she said, you know, your mom's demented. And so it's not like, I know what you're feeling. But your mom, I want you to know, she really doesn't know what what's going on. She has holes in her brain and, and I said, Stop, I said, you have to understand I've been in this community for I'm not a doctor, but I really know Alzheimer's, I really understand it. Right. And I said, She's first of all, she's not demented. She has dementia, right? And I said, and she knows I'm here, and she hears you right now.

Anne Kenny, MD:

And you can leave right now.

Susie Singer Carter:

Let me show you video. Yeah. And you can leave.

Don Priess:

There's only one person here who has holes in their brain. And so go bye, bye.

Anne Kenny, MD:

Don't talk about my mom.k

Susie Singer Carter:

I think that. Yeah, and people don't understand because words are powerful. You know, and we there's a connotation to demented demented is a very sick word. And that, and I don't mean sick physically, it's a it's,

Anne Kenny, MD:

it has negative connotations. And, and so with dementia, we're fighting the stigma, you were fighting, the stigma around death that most of us don't talk about death. So you weren't able to have complex and complete conversations around it, because people are either avoiding it by pushing it on faster, or avoiding it by denying it. But not I mean, you were trying to have a conversation about how you envisioned your mom dying. And that's a valid conversation, and you needed to have it with people who are willing to engage in a conversation with you. And unfortunately, that wasn't happening. And we and people don't like to talk about dementia either. Because we don't we're just not at that place yet. Just like they didn't 50 years ago talk about cancer, but you're changing. Changing that bias. And it's your podcast, and your documentaries are changing that that so that we these, you know, we don't need to shove people out of our sight. We need to respect who we all are. I mean, it's it's a human right, right. We're talking about human rights. And that's all we're saying. Yes. Let's have life isn't all in there. Easy conversations all the time. We need..

Susie Singer Carter:

No, it's not. And, and again, going back to what you said, which is so true. It's not one size fits all. I mean, if someone gets agitated, and they're violent, like you might have a very strong man who's having a problem right now with his with his dementia, and he does get violent and, and he might hurt himself or someone else. There's a time and a place to use medication to help make his life more.

Anne Kenny, MD:

And I would argue that helps. Yeah, but I would argue that oftentimes we go with medications that are not approved. And we don't try to treat pain first, where we don't like look at his meds and see if could this be a side effect to the medicines that he needed as a 50 year old but he may not need anymore as a seven year old living with dementia. We don't We Don't look at it as in the complexity. We are complex human beings. And we don't necessarily take the time and the energy to look for that complexity. And I say it's creative. Like, look at the people you're taking care of whether it is a caregiver, or as a health professional, with some creativity, and it flips the whole thing to I don't have time for this. But what a great challenge this isn't. Can I? Can I tease out what's really happening and get it right? I find it fun and fascinating. And I did. I mean, I was plenty tired as a caregiver a lot of times, but in the morning, if I mean, luckily, I got a great therapist when, when my mom was going through dementia, and I was going through the dementia journey with her, and who basically taught me to sit in meditation. And it was during those times that I think that things would bubble up like to, to better care for my mom, when I basically when my brain wasn't stressed out when I could quiet long enough. And I did not think that that that true answers would come up, I really learned to to live much more from my heart and, and as a physician, I guess I had been doing that. And I hadn't realized it until but much more after my mom was living with dementia, I think I became much more compassionate doctor as well.

Don Priess:

You were very Yeah, you would have been a very probably not I don't know how different because you, you have so much within you already. You know, I think passion and and all those things you would have probably come along maybe down the line. But what a different experience you've had as a doc.

Anne Kenny, MD:

Absolutely, absolutely. Again, the transformation, my mother provided me through her journey with dementia. As much as I did, I wish she hadn't had to go through it. Though the amount my siblings and I learned and and I've been and my goal now is to try to give back as much as you guys are doing through your journeys. I just hope to make it easier for the next group of people. And I think my Can I my pieces that I do have kind of that both both the medical and the caregiver. I'm sorry, Susie.

Susie Singer Carter:

I know it's beautiful. No, no, not at all. I want to say I want to talk about just one other thing about, you know, doctors and healthcare workers because I was talking to a doctor for my documentary and, you know, she was saying how she's a emergency doctor, er, Doctor Who loves loved her career went into it with such, you know, joy and and motivation and, you know, high hopes and she said, it's, it's almost that she can't see herself retiring in this field anymore because it's so hard on her emotionally. And, and there's a stigma of getting therapy as a doctor or their you know, there's is that is, can you talk about that so that we can get understanding of what's going on there with doctors and, and taking care of themselves emotionally,

Anne Kenny, MD:

there's a stigma about therapy in the United States, period. I mean, I think we are cowboys, you know, like we we're this is the, the US is known for being fiercely independent, right? I mean, that's kind of what we're what we're all raised on. So I think to admit that you might need some help in some way, shape or form, especially mental health is is a sign that you're not as strong. And then there is just a conditioning in medical school because you are going to learn so many things so quickly. And there are life and death things that it's much like I'm sure military boot camp, there is a breaking down and building back up to be in the to be ready for whatever medicine throws your way. Because you often are the last one to make that decision. So I think that's a part of it is we're in a nation that is known for being independent and we and we're in a profession that is been put to be required to make rapid fire decisions, especially in emergency room medicine, I'm sure it's even worse. I mean, I'm, I'm a primary care doc geriatric and then and then specialty trained in end of life, so I probably have a little more woowoo touchy feely background, and it's no surprise that I went into that and then I'm open to something like therapy Because I again, like, for me, it's just like, why wouldn't I go talk to somebody who might have a broader view of how to make me become the best I can be at something. So I guess I look at therapy not as something to be ashamed of. But for me, it's just about how am I going to personally grow more and become the best that I can be. And I was struggling with being in academia, at the same time, my mom was starting to get sick. There's, you know, I was I was writing grants, writing papers, doing research, teaching classes, and taking care of people. And raising a young, you know, young family. And it's, you know, that that's a lot. And so I thought, maybe the therapist can help me out. And oh, my gosh, she gave me some tools. That definitely helped me in the dementia journey with meditation and journaling, because there's so many emotions that come with with being a caregiver to somebody who may one day love you up and the next day that know who you are, and the next day be angry.

Susie Singer Carter:

Call you a whor!,

Anne Kenny, MD:

all because of the disease. Right?

Don Priess:

Or the next day.,

Anne Kenny, MD:

right. Okay. Yeah. Right. And, and so, and I knew I shouldn't take it out on my mom, or, you know, but, you know, sometimes it was like getting smacked in the face, and I needed, and so I needed and so, between meditation and journaling, and then having her for, for me for an hour a week, was building kind of some sacred time for me, which, I mean, I think a lot of caregivers think no, I'm only going to give, give, give, give, give, but if you don't feel you're well, you can't keep giving. So I mean, I, I you know, I went into a depression, taking care of my mom and keeping a high pressure career and raising a family, I, you know, I am one of the caregiver statistics, and I knew better I knew, you shouldn't push yourself that hard. Because you'll break I broke, and, and, um,

Don Priess:

Because that comes out of the fear of guilt, because you don't want this like if I'm not, if I'm not caregiving 24/7,

Anne Kenny, MD:

But you are, and if you don't fill yourself, and if you don't build a team to help you with that, and whether that team is for you, or you're for you're the person you're like, some people say, Oh, only I can care for my mom, well then build a team for you. Because if you won't build a chain for her, you better have one for yourself, because somebody's got to do some of the backfill. And, and I you know, and I'm, and I think it's helpful that I lived through the caregiving experience. So when I'm counseling people, I can go, you think you're not going to break? I didn't think I was gonna break. And I knew better. I really knew better. And I did it anyway.

Susie Singer Carter:

Yeah. Well, you're also you know, a very, you're an ambitious human being to on top of it. So you've got your that is very rare, you know, combination of empathy and emotion. And then you're also academic and, and you're driven. And you're, you know, you've got it, you've got it all. So sometimes we think we think we're stronger than we are just because it's just we think we can do. And I like that I feel like I could I just kept going and going and going and going and going.

Anne Kenny, MD:

But it's it takes its toll. Right, Susie, it takes its toll.

Susie Singer Carter:

Do you think it takes his toll physically as well?

Anne Kenny, MD:

Absolutely. I mean, studies after studies show that people living with dementia are much more likely to have medical conditions, comorbidities, the rate of dying goes up for caregivers who don't care if it's specific, it's for those who don't care for themselves. And the number one thing that helps caregivers is building that sense of community building a community to support them, those people do the best of all, so that their sense of burden in the caregiving because, you know, just like raising children, there's parts of that that are boring. Well, there's parts of caregiving, somebody living with dementia that are boring and tedious and yeah, and repetitive. I mean, it's it isn't always sunshine and, and flowers. It's, it is at times, but not always. And so, yeah, it takes it's a physical toll, the stress, your body can't take that much stress all the time. And it will show up as heart disease and stomach problems and changes in your, you know, biome and yeah, it's hard on it. It's a hard job.

Susie Singer Carter:

It's a super hard job. Yeah, well, you're doing so much so much. And, you know, I just feel fortunate that you're out there teaching and modeling how to be a good doctor, it is hard. And I don't mean that in a disparaging way because I've been in enough emergency rooms and hospital rooms now to feel the stress that health workers go through. So I have such a big respect and compassion for all of them. And thank you so so much. And thank you for for sharing your positive and, and intellectual prowess with us because it's, it's really it's really lovely and reassuring.

Don Priess:

And and you're sharing all your wisdom on your website together in dementia.

Susie Singer Carter:

And her book.

Don Priess:

Yes, making tough decisions about end of life care and dementia, which is so they can get on Amazon. Is that correct?

Susie Singer Carter:

Yep.

Don Priess:

You just got a little bit of a taste of it today.

Susie Singer Carter:

And what a soothing voice you have on the site, right?

Don Priess:

Yeah. And yeah, your whole demeanor,

Susie Singer Carter:

Your demeanor. It's like, oh, I just feel so comfortable. You're just sitting here like sitting like a warm pillow. Yes, you are.

Anne Kenny, MD:

Thank you.

Susie Singer Carter:

So, anyway, and thank you guys so much. And, you know, you were talking saying about our podcast is about love, love conquers all. And it really does come down to that because Because love is so powerful. I saw it with my little two year old granddaughter who spoke no words to my mom, but climbed into bed with her in her room, and the two of them had a complete conversation. We don't know what they said. But there was a lot of kissing going on. And that's, you know, so what do we always say Don?

Don Priess:

Well, that is that love is powerful. Love is contagious, and love conquers all. So we thank everyone for joining us today. Like share, do all those things that that so more people can see. It is it is absolutely. And we hope you'll join us next time and have a wonderful rest of your day. Take care