Disease-Specific Care: Hope for Families Facing Parkinson's, Dementia & Chronic Conditions with Emma Soy RN, BSN, MA - Episode 104

Feeling overwhelmed and hopeless while caring for a loved one with a chronic condition like Parkinson's, Alzheimer's, or Lewy Body Dementia? You're not alone, and this episode is a beacon of hope you've been searching for.

In Episode 104 of the Caregiver Relief Podcast, host Diane Carbo is joined by Emma Soy, the founder and CEO of Gentle Shepherd Care, for the second installment of our "Rethinking Home Care" series. Emma introduces a revolutionary, holistic approach to disease-specific care that moves beyond simply managing symptoms. It’s about empowering families, slowing disease progression, and dramatically improving the quality of life for your loved one.

This isn't just another conversation about standard medical care. This is about finding real, practical solutions that address the root causes of decline and give you the tools to advocate for a higher standard of care.

Ready to feel empowered? Listen to the full episode now! ▶️

What You'll Discover in This Episode 🎧

Here's a glimpse into the transformative insights Emma and Diane share:

• 🧠 What is Disease-Specific Holistic Care? Learn how this approach differs from traditional models by focusing on the whole person—physically, emotionally, and spiritually—instead of just treating symptoms as they appear.
• 🚀 The Power of Proactive Care: Discover why waiting for a decline to happen is the wrong approach. Emma explains why getting therapies (physical, speech, etc.) involved from the moment of diagnosis for conditions like Parkinson's can be a game-changer.
• 🤝 Building Your "A-Team": A single family caregiver can't do it all. This episode highlights the critical importance of building a coordinated team of experts and outside helpers to support you and your loved one through the journey.
• 💡 Fresh Strategies for Dementia: Emma shares powerful, practical approaches for managing Alzheimer's and Lewy Body dementia that go beyond medication. Topics include:
  • The profound impact of nutrition on brain health and behavior.
  • Removing environmental toxins from the home that can contribute to neurological decline.
  • Managing challenging behaviors and sundowning with personalized activities and scheduling.
  • The importance of meeting your loved one in their reality instead of trying to force them into yours.
• 💔 The Assisted Living Reality Check: Get a frank look at the difference between "supervision" in a facility and the personalized, one-on-one care that's possible at home. On average, a resident in assisted living may only receive about two hours of direct care per day.
• ☎️ A Lifeline When You Need It Most: Emma offers an incredible resource—a crisis hotline for family caregivers. Whether you're having a meltdown or just don't know what to do in a specific moment, her team is there to walk you through it.

Memorable Words of Wisdom ✨

"If you've seen one person with dementia, you've only seen one person with dementia... everybody doesn't follow a cookie cutter approach." - Diane Carbo

"Don't wait for symptoms to come for us to start doing something about 'em. Yes. Why don't we go in front of them and start to do that?" - Emma Soy

"Families are watching the person disappear by pieces." - Emma Soy

Take the Next Step!

There is hope beyond traditional medical management, and you have more power than you think.

• Listen to the full episode to absorb all of Emma's invaluable advice.
• Claim Your Free Consultation! Emma is offering a free 30-minute consultation to any listener to identify gaps in your care plan and show you how to bridge them.

Charlotte’s Premier End-to-End Senior Care Provider

704-209-5040 Charlotte Elder, aging, geriatric, senior care. It’s difficult to be a family caregiver in Charlotte. Get help with in-home care, Alzheimer’s/Dementia care, caregiver coaching, aging mom or aging dad care. We do it all in Charlotte.

Gentle Shepherd Care

And remember, you are the most important part of the caregiving equation. Be gentle with yourself, because you are worth it! ❤️

Podcast Episode Transcript

Diane: Welcome back to the Caregiver Relief Podcast, where we share heartfelt conversations, expert insights, and trusted resources to help caregivers feel supported every step of the way. I'm your host Diane Carbo, and I'm so glad you're joining us today. This is the second episode in our three-part series on what home care should look like.

Care that uplifts empowers and truly helps seniors thrive. Today's focus is on something so many families struggle with. Disease specific care for chronic and neurodegenerative conditions like Parkinson's, Alzheimer's, Lewy body dementia, and multiple sclerosis to name just a few. I'm joined again today by Emma, soy founder and CEO of Gentle Shepherd Care, a revolutionary approach to home care, rooted in compassion and transformation.

In this episode, Emma and I will take a deep dive into holistic disease specific care strategies and how families can move to beyond just managing symptoms, to actually addressing the root markers of aging. You'll hear real practical approaches for supporting loved ones with Parkinson's, Alzheimer's, ms, and more.

How Gentle Shepherd's programs are helping slow progression and improve the quality of life. We'll also cover how families like yours can advocate for a higher standard of care. The key takeaway here is there is hope beyond traditional medical management. The families have more power than you think.

Diane: Emma, welcome back. I'm so thrilled to continue this important conversation with you. Thank you. Just joining us, this is a two of three part series on rethinking home care, and we're diving deep. into disease specific holistic care.

I'm really excited about this. I'm joined once again by Emma Soy, the founder and CEO of Gentle Shepherd Care. Emma is a true pioneer in changing the standards of how home care is provided. Through her innovative and compassionate approach, she's helping families move beyond traditional care models.

And instead, embrace care that honors the whole person and supports true quality of life. Today we're focusing on families caring for loved ones with conditions like Parkinson's, Alzheimer's, Lewy, body dementia, ms, and many others. And how a holistic, personalized strategies can bring real hope and progress.

Thanks again for joining us today, Emma. we have all sorts of questions and interest in your revolutionary approach to care. Sure.

Emma: I'm

Diane: excited to dig deeper, and raise the standards in home care.

Emma: thank you for having me. Thank you. I really enjoyed last month and I think we got something good going on here.

Diane: I appreciate it. I do, and really important that with what's going on with the. Medicare system right now. Home care, really good. Home care is lacking, so I'm really excited about hearing about your approach.

Emma: I hope,I wished. our approach was covered by Medicare because the people who really needs it are the people and people who cannot afford it.

Diane: Exactly.

Emma: I know.

Diane: Yeah. So let's talk about what exactly is disease specific holistic care,

Emma: Go ahead. Yeah, go ahead. the thing is with Diane, when I, again, when I started this home care company, we were taking care of all kinds of, mush if anybody who needs care, who needs services.

And what I found was that those people who had specific chronic who are living with chronic diseases like Parkinson's, Alzheimer's, dementia, specifically Lewy bodies, really rough. And Ms. These people were, they were, they had it the hardest, like as they age because not only they dealing with the chronic disease, but they also dealing with the aging process.

a normal person dealing with the aging process had their own aging issues, but on top of this, these people having the to deal with, imagine someone who's dealing with Parkinson's. Plus all the other stuff. Someone with MS plus the other stuff. And so that's when I decided, okay, so how do we focus, how do we help these people help,with these specific diseases to be able to help either, our goal is to be able to slow down the progression of the disease because the disease itself, I have no cure for it.

But how do we, how can we slow down the progression of the disease and so we can give that person some relief? So that's my vision.

Diane: Exactly. And, personalized care is so lacking, and that's what we need. Because if you've seen one, person with dementia, you've only seen one person with dementia, that it's not, everybody doesn't follow a cookie cutter approach.

And that's what I love about your approach to home care is that you actually look at the. Person and you look at holistically at all the conditions. Yeah. And I love that because, and you also work with the families, which is so important so that the, their loved one that needs care is getting the best possible care.

And, like in traditional models, we often see a focus on symptom control. How does your approach go deeper and look at the root causes or markers of aging and decline?

Emma: So let's take a look at, for example, Parkinson's. Okay? When someone get diagnosed with Parkinson's, you know when, the first time the person hear the word Parkinson's.

Now, either through the aging grassroots, because being diagnosed with Parkinson's can be any time you have people at any age being diagnosed with Parkinson's and sometimes the person is having the symptom a long time, but they never able to pinpoint it or report it or so the whatever. they've probably been living with it and not knowing that was what it was.

But let's say somebody, diagnosed with Parkinson's and the doctor comes out, or the professional come out and give you that diagnosis. Usually it's just I turn over this diagnosis to you and then start with the prescription. Now, when they do start with the prescription.

And we just waiting for the next things to happen. Like Exactly. we waiting for the next symptom and then do we write another prescription for that symptom? Exactly. so my goal and my vision now, when I say my goal, my vision, Diane, is. is one day I would like to see all of that happen for people who are living this way.

Yes, because it's just the beginning. I see it happening and I wanna do something about it. So in, in my mind. We know what Parkinson's are going is going to do. Yeah. If it's Parkinson's and that person has been diagnosed with Parkinson's, we know the journey. We know the traditional journey of what that person is going to face.

Exactly. My, my vision is that we put things together when I speak about holistic, don't wait for symptoms. to come for us to start doing something about 'em. Yes. Why don't we go in front of them and start to do that? Because we know when someone is diagnosed with Parkinson's, what the problem is.

it's that one thing that they are missing. It's the missing that element that affect the movement. We know that. Yeah. And so immediately get that person involved with therapy, for example. That's what I mean with when we speak, we're holistic. Let's get that involved with therapy because we need to get that person moving.

Don't wait until when they start declining, and then we say, okay, I think you need therapy now. Yes. By then, that person's is weak. That person's muscles are, and they're not really motivated to do that. Number one, the next thing we know affects their vocal cords.

Why don't we get phy speech? Involved? Yes. Why don't we start training? Why don't we start doing that education with that person in the family? Now, today, the biggest educator for families that have been diagnosed with something like this is Google. Oh my God. Like, why don't we get human beings to be able to.

Work with that person to be able to coach that person. In looking at that, the next things that you see is the mental, what is that person thinking during that time? Yeah. Once that person get diagnosis every what everything is going on in their mind, they don't even know what this Parkinson is. They don't even know what to expect, and then all the fear that they have, like why don't we start giving them hope from the beginning.

And so they can be motivated to do the work that needs to be done. So that's what I mean by looking at Parkinson for chronic disease from a holistic perspective. it's the physical, the symptoms that we are anticipating emotionally, physically, and spiritually where that person is and be able to help 'em so we can work the journey together.

Diane: Emma, I love that approach. And I have to tell you, I am really, impressed because one of the things that we're lacking is a holistic approach in our, in fact, when I started in orthopedics, when I was a new nurse, this is 50 some years ago. And orthopod did, hips, knees. Everything, broken arms, now they have specialists for everything.

And I go for chronic pain, All the time. And you have to be very specific about the part of the body you're talking about. They don't wanna, they don't care about the pain I have on other areas. Yeah. It's just at that day. Yeah. and one, I like the proactive approach because research studies are coming out that people with.

Neurodegenerative diseases benefit well, from weightlifting. Now it doesn't have to be heavy weightlifting. But even using resistance brand, bands can lower your, lower your ability or increase your ability to delay symptoms. yes. Yes. And it's so important that people don't realize that, they become paralyzed when they hear this.

Awful diagnosis.

Emma: Yeah.

Diane: And they're not thinking, what they should be thinking is, I gotta call Emma soy. Yeah. Because we need for her to ask me, get through this.

Emma: Because my goal Diane, is to that person need to be surrounded by a team of experts.

Diane: Exactly.

Emma: Who can, who not just having a physical therapist when the problem comes, like for example, in my mind and my vision.

someone living with Parkinson's should never be without a therapist.

Diane: Yes.

Emma: Should never be without a physical therapist. Should never be without a speech there. Like the, and it from mental health. these people like bringing the kind of team together to help that person navigate.

Instead though, currently we just wait when that person. families are watching the person disappear by pieces.

Diane: yeah, one

Emma: day this, one thing fall, this one thing fall, this one thing fall. And every time they go in and the doctors say,maybe we should add this person. Oh, maybe we should refer this person, but we already know they, they're gonna need these people.

Why don't we bring them in a place where they have surrounded by a group of. expert and support, and at least that give that person hope that they're not by themself trusting that each of these people are working together, like the therapist is not working so low. the speech therapist is not working solo long, andwe all working together so we can encourage these persons to go through this journey together.

That alone will give that person hope and motivation to move forward instead of watching their body falling apart piece by piece.

Diane: Yes. there is a new, there are new programs coming out right now where therapy will be hybrid. Some of it will be online. Instead of person to person and the family caregiver will be the one to be directed via televisit on what to do with their loved one to get them moving.

what I'm seeing is really, and it, but it's no, but like you said. in, in the olden days 50 years ago when I started nursing therapies communicated with one another, Yeah. and there was a contact and they also were in contact with the doctor, to give updates and.

That's not happening to the degree it used to. And and that's sad. That's why I like somebody like you who's going to care, manage everything and coordinate it so that things don't get dropped.

Emma: Bring the right person and, bring in and the team,from the beginning. Now let me tell you what I have seen Diane, in regards to caregivers.

When family caregivers are caring for someone with chronic diseases,

Diane: yes,

Emma: they're already taking care of that person day to day, okay? Yes. Like they already make sure that person is eating like the basic things that they already doing. Okay? Now remember, that person used to be a person who had their own responsibility in the house.

Diane: Yes. Okay,

Emma: so let's think about a husband and a wife. Okay. The husband, the wife now has to carry on that husband. The wife now has to carry on all the responsibility that husband used to do. Yeah. Okay. Yeah, because let's say they used to do 50 50,whatever. That's just normal living.

Diane: Yeah.

Emma: Already that family caregiver is taking on the role of that person on top of it. Yep. And so now when we bring things to them to do on top that, what caused them to be so overwhelmed? Now they're not physical therapists. Okay. So now when we tell them we have this long list of things, now they have to make their husband do,

Diane: yes,

Emma: the wife know this is good for their husband.

They know. If the husband doesn't do this is gonna happen, yada. They already know that. Yes. Now the husband doesn't see the wife as a therapist. Exactly. You not my therapist. Exactly. You're my wife. Yes. So now you are making this wife become a therapist. That the husband is not receiving. When I walk into a home as a professional, I tell a client to do something.

I come in, they know I'm leaving. So even if they mad at me, it doesn't matter. It's not the same when you asking the wife to do the work of the physical therapy. A hundred

Diane: percent. And you know what I see is the. The care recipient, the person receiving care often lashes out at the person, the very person that's their care that's caring for them because they know they'll come back

Emma: because they need them to be their wife.

yes. So now that is that is what's so difficult, and that is why having outside helpers is so important. If that person, I'm not even saying if you can afford it, because if you cannot afford not to have an extra person to be able to help you carry that load.

Diane: I call it building a care team partner support group from the beginning. That's what I really encourage people to start to develop a care team partner approach because, you have, most caregivers hate to ask for help. Yes. They feel failures if they do, and they're often dealing with, judgmental. UN involves siblings and extended family members.

Yes. And they have so much pressure on them. 63% of family caregivers become seriously ill or die before the person their Yes. Yes. And that's very disturbing to me because with what's going on right now, more and more pressures being put on the family caregiver that we're gonna be at a hundred percent.

I'm serious with what I'm seeing.

Emma: How do we have. Family caregivers though, the issue is that I'm seeing also is that family caregiver to understand Yes. to accept and to receive the theme because this family caregiver, we can talk about the statistics all, we can always want to, that person doesn't respond to any of this until they are laying in a hospital bed.

Diane: 100%. Absolutely. that's why I bring it up every single time I can. And I'm, really push, push, push for the family caregivers to start, standing up for themselves. And,

Emma: but then how can I help? How can they see the value? Yes. The value that a team brings to their issue, that's my biggest struggle to see what can I do to have family sees the value of having someone and come in just so they can do therapy?

Like to the days that the therapists do not show up, because the physical therapist, let's say, every time they come, it's $150. Okay. And you cannot have them seven days a week, right? Yeah. And then they, when they come, they only do therapy. But what if you could have, a caregiver, like my caregivers come in?

Yeah, they do other things for you, but then they can incorporate therapy in it.

Diane: Exactly. and I want you to know, I have a good friend who is a care manager and she is one that also trains her aides to do it. But it's a rarity. aides go, oh, it's not my job. They don't want the aides go into the home.

They don't wanna cook, they don't wanna clean, and I don't wanna say saying deep cleaning, but. throwing a laundry in or changing the bed, there's a big argument about that. So often, and, they don't wanna do it. And these people are paying big money for these people to be there only to be frustrated.

So that's why I really like your approach because you really are training your. People that are under you, the aids and the therapist and everything to work with you to help give a better quality of life. And that's a rarity in this healthcare system.

Emma: so my caregivers, I train them to do holistic care.

Okay? Yes. Because even taking care of somebody's pet is part of holistic care, because if somebody have a dog. huh That's their pet that emotionally they attach to. Yeah. And they are unable to take care of this dog, or they are unable to take care of this pet. They're going to worry, they're going to worry about this.

Absolutely. Yeah. it's going to bother them. So when we can take care of their path to make sure that their path is being cared for, that is part of holistic care. So they can take the time to heal. They can have the peace of mind. Oh, okay. They can continue to heal that, have that dog to provide the support that they looking for, emotional support that they need.

So holistic care is all of this stuff I talk about when the holistic care, having someone being in a clean environment that's healing. you cannot have a care recipient and a home that's dirty. Yes. And that's, full of stuff and you can't find anything.

The place need to be healing the home. Yeah. Need to be an environment that's healing. So that is why it is our responsibility if we caring for the client to make sure the environment is clean. you cannot tell, not do laundry because if the care recipient cannot do his laundry, that is why you there?

Are you gonna put dirty clothes on that person? No, their bed needs to be made every day because that also is the, it create the environment of healing or, light and

Diane: Okay. Yeah. And you also have to worry about, fall risks. So you wanna make sure it clutters out of the way. Yeah. And yeah. a home safety eval is done.

and I really encourage all my clients, you need to have a home safety eval done by a physical therapist, to go in or an occupational therapist just to check it out. Yeah. And see if there's things that need to be improved so that there's less chance for a fall risk. A fall, that's great.

Yeah. it's really better to be proactive, and maybe you need,arm, grab. Bars on certain places, so that the, your family member can help pull up, while they're still able to, those kinds of things. Yeah. yeah. let's, let me, let's talk about Alzheimer's and Lewy body dementia.

It can be so overwhelming. What's something most caregivers haven't been told or need to hear about managing these conditions differently?

Emma: So Alzheimer's is specifically for Lewy body. It's the behavior that comes, it's the behavior. Now, most families, they quickly bring their loved ones to facilities because they are unable to manage people with Alzheimer's in dementia and Lewy body because their symptoms some of them are not managed because exactly.

Because there is no cure for this disease, right? They don't manage the symptoms. But my holistic, aspect or point of view is we need to manage everything about that person, with the person with Alzheimer's, including their basic things. It sounds basic, but their nutrition, it is. We need to revamp.

Completely how they eat because type of food you give these clients will affect their brain and their behavior. Okay? So if they were, if you were younger and you could eat sugar daily, every day, three times a day. When someone is living with that kind of disease, they should not have it.

That's an example. Yes. and so nutrition become very important. Having the proper nutrients become very important. So one of the way we look at it is we have the four Rs that we look at is to look at what are we removing? What are some things that we need to remove? We look at remove, we know that we store what are they needing that we need to restore?

What are some nutrients that people are missing that they need to have? remove what they need to remove. and we establish is at like, for example, even toxins. Like environmental toxins that are around in the home, things like that. We have to look at all of these things that may be affecting the person one way or the other that we may not know.

We don't know. We don't have a cure for these diseases, but we can manage the environment or the cause of some of these diseases, sleeping patterns. families have a hard time with a lot of like sundowners and so those are the kind of things that families are dealing with behavior. how do I talk with them?

How do I tell them to do certain things and they don't wanna do things like that? So showering, personal care that they don't want to no longer do. Those are the kind of things that I see families struggle with a lot. And when you bring all of them together as family said, you know what? I can't do this.

I gotta put 'em somewhere.

Diane: families also don't use the power of activities to keep their loved one busy. it's a pain for them to do it because it distracts them. But if you can find certain activities and music and memory is so good for any senior. Because, you find music that they love.

And that they're, that they, and it's usually from when they're in their youth That go back to that makes them, gives them comfort and you create a playlist. It helps them manage the behaviors better.

Emma: Oh, things that they used to like Yeah. Yeah. That they used. Yeah.

Diane: it's from decades ago.

Because, as all of them are struggling with their health right now and. and some of them with dementia are absolutely losing their, long-term memory and or short-term memory, and then they're starting to lose their long-term. I can, I have seen music, change, person and it's really impressive when and decrease the abilities of.

Decrease the negative, challenging behaviors that occur. So that's really one thing. you do talk about nutrition, movement, environment, and an emotional connection.

how does that factor into your disease specific programs? Because that's never discussed in traditional, healthcare.

Emma: And yeah. Again, it's not easy because it people don't do well with changes because you are asking people who are 70, 80 years old to change their lifestyle and how they used to do things, and which is not easy to do. So I'm not gonna sit here and tell you that it's easy to do, but

I preach it. To every one of my families that are dealing with these kinds of chronic diseases, as something that is. the basic five or six i things,the nutrition, the hydration, the sleeping pattern, the managing, how do you manage that specific disease? Their behaviors know what to expect with each of these diseases and how do you deal with them?

people get so exhausted. Like for example, the, one of the frustrations people have with Alzheimer's is when the person is asking you the same question over and over again, over and over. So families get really frustrated and said, okay, how do I, and then, they talk about their dogs.

Can I have my dog? Your dog is dead. No, you have to teach the family. How do you communicate now with this person? Yes. not fighting back and forth and talking, trying to bring them to reality because you need to go to their reality. It's not, you bring them to your reality every day.

Diane: 100%. Yeah. In fact, I tell my caregivers.

Somebody with dementia is really living mindfully. Yeah. And they look at me like, what does that mean? they're not able to look to the future. Yeah. It's just not possible anymore. And they're losing memories of their past. Yes. So they truly are in the moment and they pick up on your, and a lot of times their processing of information is not, is slowed or it's gone.

So the only thing they have to pick up on is sometimes your emotions.

Emma: Yeah. Can you say you, they still have the, being able to detect aura. Yeah. They still able to detect. just like a baby, when a baby sins that you are nervous. they know that. if a baby feel like they're not safe, they know that.

older adults with these kinds of disease feels the same way. Yes. If you feel nervous, if you are anxious, if you feel like things are falling apart, they sense it, they drawn to it and they behaving, they, they respond to that kind of behavior.

Diane: Exactly. And it's really hard. I tell my, I encourage my caregivers, Hey, anytime you have to respond to something, take a deep breath.

and really just focus on that breath at that moment and let go of how you're feeling and think about things logically. It gives you, but

Emma: I also tell 'em,take time off. Oh, absolutely. Yes. Because sometime when you with that person 24 hours a day, you need. You need to not feel guilty to just take a day off, take a weekend off, take some time off, take an hour off, take an afternoon off.

Just walk away. Exactly. Be safe and walk away so you can, we can recalibrate.

Diane: Exactly. That's why I encourage the care team partner approach because it takes a team of people. It takes a village. As it did for children, it does for aging seniors, it does, and we have to look at it that way. Everybody should play a part, in that person's family and supporting that the caregiver and the person, that's trying to remain at home as they age for as long as possible. It's a great step.

Emma: Diane, one of the things that I offer to people is a hotline. Like I want people to be able to use me as a hotline. what does that mean? If you having a bad morning one day, even though you don't have a service with us, if you only sign up with us just for a hotline that some you pick up the phone and you call our office and said, this is what I'm dealing with today.

How in the world I do it. Like I have a client who called me. I think I don't know if I shared that with you. She's been having, she has eggs every day for 15 years. This morning the, she won't eat eggs, she will not have it, and I can't, I don't know what else to give her. This is what she like if you are having a meltdown that day.

She, that client is having a meltdown. Then it calls you to have a meltdown. You don't know what to do. Pick up the phone. You have a hotline, call me and I will walk you through it for the day. Yeah. I will tell you what you need to do. It's an, it's a crisis. It's become it's a crisis hotline to help you to go through that moment.

Sometimes that's all someone needs.

Diane: You know what? that's exactly, they just need to be acknowledged and know that somebody else is out there understanding their frustration and their pain. I get that. I really

Emma: do. Yeah. The client called me and said, Emma, I can't get her to put her nightgown.

Yeah. I said, I walk her through it, okay, this is what we're gonna, okay. Okay. just having that person and the other line to be able to help you through that. Sometimes it's all you need.

Diane: all of a sudden their burden is lifted off their shoulders. It's shared, and they're much more relaxed, which in turn makes the their loved one more relaxed and it just goes smoother.

Yeah.

Emma: so the daughter who calls the daughter who says, Emma, I can't get her to put her nightgown. I said, oh, what? What do you mean? I, she's in her room and I gave it to her and I came back an hour later. She still have it holding in her hand. Oh my. I'm like, she does not know what to do with it.

Yeah. I said, imagine if she was a baby, would you put her nightgown in her lap and tell the baby to put her nightgown on? Yeah. Because then the baby wouldn't know what to do, a nightgown. So you would come back. The nightgown would still be there. She said, yeah, because in your mind, you think she's your mother and she had been putting her nightgown on for 90 years, and so she should know, okay, she has a disease.

She does not remember what to do with it. So what we need to do is to stand there with her and tell her, put the arm in here. Put you actually, even if she, you dictating to her what to do. Yeah. But you need to be able to do that with her and not just give it to her because you're gonna be frustrated and she's.

She doesn't, she's not even frustrated. She does not know what to do with it. So

Diane: yes, they've lost that ability, that long-term memory that helps 'em get dressed every day. And it's really challenging. But, family members feel A lot of times, like they're embarrassed to help dress and undress.

they hate to toilet their family members. Yeah. And that's why,it's really nice for companies like you to come in and take that or take that burden away from that family caregiver. 'cause they don't want to provide intimate care. yes. And if they, and it's not because

Emma: they don't want to, it's because, for example, the daughter.

Yes. It's so respectful to their father. Yes. Who doesn't want to see their Exactly. areas. Exactly. Their son who doesn't want to disrespect their mother and have to Exactly. Untrust their mom. So all that, and it's okay. It's okay. Yeah.

Diane: Oh, it absolutely is. Yeah. And one of the things I have to tell family caregivers is you have a right to be selfish.

You have a right to ask for help, and nobody on God's green Earth is able to provide care 24 7 for forever. It's just not possible. Babies, we get away breaks for them with babysitters. AIDS and home care to support us through the caregiving journey. People don't understand that caregiving can be as long as a few months to average is six years, six to seven years.

But I have people that are, have, create, have done caregiving for 20 years. Yeah. Yeah.

Emma: Yeah.

Diane: I had one woman because

Emma: these chronic diseases can be, the person can be, a lot of time when somebody's diagnosed with dementia, for example. It could be the person physically is doing well.

They have absolutely, they have no other diseases.

Diane: Yep.

Emma: So that means they are, and they could be like 60. Okay. And they could live another 20 years like that, be looking all cute and everything. Exactly. It depends

Diane: on the diff the person, the, the type of dementia they have. But I have one client who has been caring for her dad for 15 years.

And he had the slow, I said he had the slowest form of dementia I have ever seen. yeah. and it was really hard for her, but she was very blessed in that he belonged to AA and he was, went there for decades. His buddies would take him out once or twice a week to a meeting. For aa, just get 'em out and give her a break.

And that really,

Emma: yeah.

Diane: Yeah. Emma, can you tell me, you're asking

Emma: me some of the things that I do specifically for these diseases? Yeah. So for example, things that people don't think about, we moving toxin is very important. and because toxin can be, something that is environment that affect the neurological that cause neurological decline.

So heavy metals, household chemicals, all of the detoxing, the body is one of the key one things that I really encourage families, my families to do, I help. With the detoxing, the body. The other thing is we build a strength no matter what kind of these kind of diseases that they have.

Focusing and building their strength and their energy is very important because that's the only way you can get them to continue to do things without him, them declining.

Diane: Exactly. Exactly. and

Emma: so very important with that mobility. So strength, physical strength. And the other thing is to make sure that, we are doing things to relieve any kind of pain that they have, okay?

If they have pain, especially when the person is dealing with a chronic disease and they, and the pain is not being managed properly, that's something, especially if they have. Alzheimer's, dementia, and they cannot express it. On top of it, they're having pain somewhere. Yeah. that's another focus.

Then how do we help to decrease inflammation in different parts? Arthritis is very prominent, and so how do we decrease their pain so they can feel good and still, so you can do this. So it's the things that they cannot communicate, but you know that they, that's bothering them.

Diane: one, when you're bringing this up, I always think of, I had a call from a client whose mom was in assisted living, and he calls me up and says, there's, her behavior is awful.

It is terrible. they're kicking her out and he said, she's been like this for a week, and she keeps getting worse. And I said to him. Did they check her for a urinary tract infection? And he called them back and he said no. So I said get her to the er 'cause they're not gonna be able to do it.

take her to the ER and if it is not a urinary tract infection, she needs to go to behavioral health. So that gives you chance to, for her to get medically managed. here it was a UTI and people in the facility didn't know, I really push my, I really try to educate my family caregivers on the fact that if you see even a person with dementia.

Become more irritable. Or cranky. Or very confused. The first thing you should think about is a urinary tract infection.

And I'm sure your staff has already trained on that, but I was shocked that these people are making are cost state charging, in assisted living, $10,000 A month. For care that is not being

Emma: but can I tell you why the reason is? So when people place someone in assisted living, they always tell them, we have a nurse on, they think like nurses are taking care of these clients. I know. And so you have day-to-day caregivers that are taking care.

They see this client day to day. Yeah. they don't have the clinical skill to make this kind of assessment.

Diane: Exactly. They don't have the clinical expertise and they've not been trained by the staff, where the,the professional staff to say, Hey, this is a problem. If

Emma: you notice.

Yeah. If you,

Diane: and then people,

Emma: their turnover rate is so high. Yeah. So even when you were to train this person and that, you just can't keep up with that.

Diane: Yeah. Yeah. what people don't understand about assisted living, and I bring this up every time I talk about it, assisted living is based on a social model, not a medical model.

So the person in assisted living should be able to direct their care, tell you their likes and dislikes and preferences. That's not happening in memory care. And that's why, and they're also not, staffing according to Acuity. And they'd be better off at home with good care, a holistic approach to care than spending all that money In a place where all it is a locked unit. And you may or may not get fed or provided care or even medication given to you.

Emma: Yeah. I can't, I don't know how to. how to get that and people, because people are using money, the money Yes. to make that kind of decision. Yeah. because if I have, $10,000 I'm spending in home, but I can bring this person for 6,000 in assisted living.

Oh, and they go, they get 24 hour care, what do you call care? Because the person is just living there. Yes. Did you know the average care hour of care a person get an assisted living is no more than two, about two hours per day care.

Diane: if they get two hours per day, I'd be shocked.

I'm talking about care. I know what you're saying. I know care. But, 'cause

Emma: otherwise the person is just there. They gave, they just make sure the person is safe. They're not running around or whatever.

Diane: Yeah. Yeah. And they, they're not. Turning people, they're not bathing them. I have so many family members that come in and call me and say,he's soaked in urine and it's 10 o'clock in the morning and his cold breakfast is sitting there and it's in assisted living in a memory care unit.

I just want to scream. Yeah. Yeah. and people don't understand, there are other alternatives out there. You just have to look for them.

Emma: again, I think finance has become okay. Finance has become, oh. do I bring this, if I leave this person here at home, in her home, I'm going to have not only the cost of care for home, but I have to manage this house.

I have to managing this house. I can sell everything, and then I could take this money and I can throw it in for care for $6,000. But what kind of care? So it's what kind of care are you gonna get?

Diane: And I've worked in the PST, most expensive places in assisted living, and I can tell you whether they're in a posh place or they're in a Medicaid run, assisted living.

The care's not much different except that in the Hosh places they have, brightly painted rooms. They have staff that the dining room staff has fancy hats and bow ties and all that, and linen tablecloths. And you still might not get fed.

Emma: Yeah. But the thing is, I don't think it's care. They get supervision.

Diane: Exactly. exactly. You know what? That people don't understand that assisted living is. you might as well be in this, in independent living because unless you have someone that you pay to give pills, take their vitals, do the laundry, they do an a la carte thing. And while it may be $6,000 a month for this, all the, a la carte stuff is like, the medical stuff is awful.

Emma: yeah. So they get supervision. Yeah. Meaning that, make sure that they don't run around outside the building because they can run around in the building all they want. Yeah. they don't go outside the building and get hurt. Yeah. somebody to make sure, oh, it is, where is Sally and whatever, thing like that.

But the, if we talk about care itself. I don't know about that. I don't know about that. Oh,

Diane: I know they're not getting the care because I've seen so many examples of it. I can't even tell you. it just astonishes me, of what I've experienced and seen,

Emma: and then it's the, and that it's the decline.

Yeah, it's the decline because these people continue to decline. yes. And so my fight is how can we slow down the progression of whatever it is? And when, since we talk about chronic disease, how do we slow down of that? Because when you slow it down, the quality of life is better,

Diane: is improved, and it's for a longer period of time.

And that's what I don't, I want anybody who's listening to this to take away that knowledge that there are steps anybody can take. To de decrease the, decline or to decrease the decline by, do being proactive in your lifestyle choices. And it's not a lot of change, but it, over a period of time, it can give you a better quality of life for, and I've seen it in so many people.

I'm like, oh my gosh.

Emma: And then can I tell people just can't do it alone. No, you can't. That's true. You do need the accountability. You need the accountability. You need the knowledge to implement some of these holistic treatments. Yes. Correctly. Yes. Correctly. So you need the accountability and you need the detail knowledge to, of someone who comes to come and help you implement holistic care.

Exactly. Exactly. knowing is not enough.

Diane: so what are the road biggest roadblocks families facing when trying to advocate for more than just conventional medical management?

Emma: The roadblocks is knowledge. They probably don't know. They used to the standard. I agree. They don't have enough of us talking about this.

Yes. So you know, it's, they accept standard as normal. Yes. Okay. So they accept standard as normal, number one. Number two, the other roadblock is always finance.

Diane: Yes. But I

Emma: always tell people, let's. There is always ways that you can work around finance. Don't look at, because when you look at 10, oh, it's $10,000, but you already spending that.

If you don't spend it here, you're spending it in different ways. Yes.

Diane: and what you people don't understand that the personal, when you are in assisted living or in nursing home. You're identified as a group of people, you're not getting personalized care. It just doesn't happen anymore. It's not possible with the ratio of patients to, to one person, staff member.

and that's the sad part, and. Personalized care is really important to also slow the process down. personalized music, personalized activities, personalized diets, exercise programs that they can do. people don't understand that balance is a big thing when you get older and it makes you a fall risk.

One fall can can't

Emma: change everything. A

Diane: senior from ever returning home again.

Emma: Can change everything. One phone can change everything. Yeah. And pers when you talk about personalized sleep is important. Exactly. You might think sleep in an assisted living, everybody goes to bed at the same time.

They wake up at the same time. They don't though. No, what I'm saying is they put them to bed.

Diane: they put them to bed. yes to bed.

Emma: At eight o'clock they wake up everybody and say, so there is no personalized, just imagine, for example, my husband is a night all. if you put him in an assisted living, he's not gonna live because he's not gonna, he's not that morning person.

Yes. That you're gonna wake up at six o'clock in the morning and get going. let's go to the dining hall at eight o'clock. He's not that person. Exactly. So he's the person who stays up late. He's the person who gets up late. And so how do you personalize that in a place like that?

Diane: and that's a perfect point because one of my biggest issues with memory units is they don't have somebody 24 hours a day to do activities for those night owls that are up. and if there's sundowners out there. Yeah. they don't have anybody to make sure that they're eating and hydrated at during those times because when they're anxious and pacing, there's no activities, there's nothing personalized. To approach them. They just let them wander and it can be so much better, so much better quality of life that you could get their attention and talk to them or share photos, photo album or pictures, and get them interested in things that are specific to them.

It makes a huge difference.

Emma: Do you know with, with our clients, with that sundowning, first of all, we assess to see what time. They start having the behavior changes. Number one. So we wanna know that and we want to adjust whatever medication that they have. Uhhuh, we want to adjust the time. Okay.

We want to adjust the time. We don't just give them that medication every day at 8:00 PM because that's what it is. So if we need to figure out what time the behavior's worse and we need to be able to hit that before the behavior hit comes.

Diane: Yes.

Emma: So at home we could do that. And also we will build activity around that time.

We know that's between four and six. Between four and seven, exactly. Depend if it's summer or winter or whatever it is, that person is gonna behave certain way. We are ready for that.

Diane: Yeah.

Emma: Yeah. I even would put the staff that I'm staffing, with the kind of, attitude or behaviors around the person that's calm.

Yes. The person who knows how to manage someone like that. Someone who understands, someone who's skillful. Okay. They need to be working during that time because they know how to manage this person. If you have someone who's having sundowners and you have a fam, a caregiver. Who's opposite, who's fighting with that person?

Everything is off.

Diane: Yep. Yep. Family members are tired, they wanna sleep. And the family caregivers, like when somebody sundowns they, it's a sleeping disorder. So you have to make adjustments and take different approaches and I think that family caregivers. Get really anxious.

They get upset. And they respond and react to and fight with their loved one in sundowning instead of lowering the lights, putting calm Suzi on maybe doing a lavender spritz on the pillow. Lavender massage. there's so many specific things that you can do to calm a person that they change the environment in a, in an assisted living.

Emma: And be anticipating that, coming with, so I would tell people. If a family says, I don't have any money, but this is how much I can only, so I would schedule, I would say, why don't you take that person, get the caregiver around that time between four and seven because you know that's the time they having sundown actually exactly having sundown, and you need that extra hand with you.

Yeah. And so then we will do a prescription around that time. the caregiver will go in, that's what they are going to be doing because they go in around that time where it's critical. And so we will be with that person until we put them to bed. and so you'll have that person that, you'll have that cushion, that time, exactly.

That extra support during that time.

Diane: So how can a family caregiver, or some, especially someone new to this journey, take the first steps toward implementing a more empowered holistic care plan? I say call Emma.

Emma: Yeah. You know what I offer? I do. I'm offering a 30 minute, I offer 30 minute consultation.

To anyone who's listening to me today, anybody who's listening to me, number one, during that time, we will look at specifically what is going on. What is going on with you, and looking at any gaps, identify any gaps, and show you how we can bridge the. You know how we can show you what we can offer to bridge that gap no matter what you're going through, is it, caregiving, whatever the issue is.

But if you are dealing with a chronic, you are a caregiver with a someone dealing with chronic diseases right now. Whatever the issue is, I'm offering a 30 minutes. It's free to anybody who's listening to me. And during that time we make an assessment, identify the gap, and show you what you can do, what we, how we can help you fill that gap and, to help you.

That's a pretty awesome offer. Hold your hands to go through this journey. No one should go through this journey by themself.

Diane: I agree. So what message? Would you want to share today with caregivers who feel like there's no hope beyond medications and decline?

Emma: There is hope. There is hope. There is hope. it,and part of the hope is preventative.

So don't wait because any of the, don't wait until you see things to wait for symptoms or when things get worse, you no, don't wait. If you dealing with a cri, someone with a chronic disease, I know what's gonna come forward. It's easier to plan. Yes. the interventions then to wait until you start do, you start having living in crisis.

And so that's what I would tell them. The other thing I would offer them, they need to reach out to me. Anybody who's dealing with a chronic disease, the least they could do is registered to be part of our hotline. Like you can call us any time and we will help you when you're going through a crisis.

Diane: I love that. I love that.

Emma: Even if you don't have any other service, if that's the only service you can get the hotline service.

Diane: I'll put the hotline number on the page at the bottom of this podcast. So people will be able to reach out to you. Yeah,

Emma: reach out to me. Like even if that's all the service you sign up for.

Okay. It is a crisis. It is a crisis hotline. it's there. Whenever you need it. You can call me once a week. You can call once a month. You can call me once a day. You can just call that this is someone you can, this is like a, that you can just call, it's a lifeline that you can just call and say, okay, he's on the floor.

What? He doesn't want to eat this egg or whatever.

Diane: You know what? that's awesome because, caregivers just sometimes just need that support.

Emma: Yeah, absolutely. To help you go through that time and then believe me, it's. A lifeline.

Diane: Yes. Emma, you are a lifeline and, I want you to give out your company information to everybody so that they can come back and reach you.

Emma: Yes. Now, first of all, you can Visit us at gentle Shepherd Care. You can email me at Emma soy at Gentle Shepherd Care, or you can call us at (704) 209-5040 no matter where you are in the United States.

Diane: That's gentle shepherd care.com. Everybody. Gentle

Emma: shepherd care.com. Thank you.

Yeah,

Diane: I don't want them. We'll put it on our site too.

Emma: Gentle shepherd care.com. Emma soy@gentleshepherdcare.com. Yeah.

Diane: Yes, thank you Emma for your time and to my family caregivers out there. Remember, you are the most important part of the caregiving equation. Without you, it all falls apart, so please be gentle with yourself.

Learn to practice self-care every day because you are worth it.