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Redefining Dementia
resources and helpful life experiences, the podcast will look to connect with the audience to provide helpful and meaningful takeaways.
Redefining Dementia
Building Supportive Communities for Caregivers: A Discussion with Sheila Warnock
This episode features Sheila Warnock, founder and CEO of Share the Caregiving Incorporated, who demonstrates the power of collective action in revolutionizing the caregiver landscape. She shares her journey from an advertising career to creating a solution for the global caregiver crisis. Sheila imparts valuable advice on forming a Share the Care group, underscoring the importance of shared understanding and responsibility. She also enlightens us on self-care for caregivers and how being a caregiver can be a life-changing experience.
We delve into how a Share the Care group can be tailored to the specific needs of the person receiving care. Sheila shares effective strategies for managing a Share the Care group and the profound impact it can have on the caregiver's experience. She also emphasizes the benefits of virtual teams for those unable to be physically present, and the significance of community and nurturing each other.
Whether you're a caregiver, someone wanting to lend a hand, or just interested in understanding caregiving better, this episode provides practical tools and resources to create a compassionate caregiving network. Join us and discover how you can make a difference in the lives of caregivers and those living with dementia.
Share the Care: A Community that Cares, Share the Care for the LGBTQ Community, Who Cares for the Person Alone
About our Hosts:
https://www.personcentreduniverse.com/about/
Welcome to Redefining Dementia. I'm Ashley King and I'm Daphne Noonan. Thank you for joining us. We are your co-hosts as well as the co-founders of Person Centered Universe, where we help you provide person-centered dementia care at home, at work or in your community. Through the Redefining Dementia podcast, we are striving toward a better world for those affected by dementia by sharing resources and insights from experts around the world.
Speaker 2:When consuming resources or media about dementia, the focus is often on the challenges, stigma and fear that may accompany a diagnosis of dementia. This podcast seeks to shift that narrative to focus on and celebrate living well with dementia and what that means for caregivers. Through the sharing of stories, resources and helpful life experiences. We hope to provide you with helpful and meaningful takeaways for your journey ahead.
Speaker 1:A special note before we begin. This information shared in this podcast is for educational purposes only. If you or someone you know is experiencing symptoms of dementia, we encourage you to seek medical advice from a qualified healthcare professional.
Speaker 3:Sheila Warnock is the founder and CEO of Share the Caregiving Incorporated and co-author of Share the Care.
Speaker 3:After nearly two decades of personal caregiving experiences, she abandoned her advertising career to establish a nonprofit organization to take the grassroots philosophy known as Share the Care to a new level and offer this compassionate solution for a growing global caregiver crisis. For 20 years, as a speaker, storyteller and trainer, sheila has touched many thousands of caregivers, concerned friends, faith in community groups and health professionals throughout the US and Canada. Organizations, healthcare networks, social service providers and senior centers have engaged her to present the model or to lead the accredited professional training she developed, known as Seating Share the Care in your Community. During this episode, sheila shares more about her own caregiving roles, which have given her first-hand experience that allows her to empathize with her audience in an incredibly authentic way. She provides listeners with practical tips for creating a Share the Care group, as well as suggestions for friends or family who want to help with aspects of caregiving but who may not know how to begin. Sheila also provides insights into self-care for the caregiver, as well as how caregiving can change one's life for the better.
Speaker 2:Hi, sheila, so thank you so much for joining us. We were so thrilled to have you here today. We've done an introduction to a little bit of your company and all of your achievements and personally who you are for our listeners, just at the start of the episode, but I think we're going to dive right in and just welcome you and start a conversation about this amazing initiative that you have been the leader of for all these years.
Speaker 4:Well, thank you, daphne, and thank you Ashley. I am thrilled to be here speaking to you and to all of your listeners out there and the people who you work with daily.
Speaker 2:Well, we're very, very thrilled, and we were talking before we got on here just for a few minutes, all three of us and saying we don't want to lose any nuggets of information. So we just kind of hit the ground running and we're going to get into it. So I guess what we'll do is I'd love to ask you to start just by sharing with our listeners the philosophy behind Share the Care and kind of the story of how we're going to do it. And I think this is the story of how Share the Care has evolved and you know what's the origin story, so to speak.
Speaker 4:Okay, well, it's important because this model came out of real life experience. But first let me address where we're focused. This is our vision. This is our vision it's we want caregivers to find the support they need and we want the people who help them to realize the impact that their efforts are making on their entire community, because we need each other. We're going to have to have more caregivers in the future because of the aging population, but also it's a way for people to learn how to be a caregiver if they've never been one, to be part of a team, because nobody teaches us how to be a caregiver, so that's a big issue, and so our job, our mission, our job with Share the Caregiving is to provide the tools, the guidebook and the educational support that people need to create their own caregiving family and reduce the stress, the isolation of the economic hardship of caregivers everywhere, because they're on overwhelm. It's the hardest job in the world, really.
Speaker 2:Oh, oh, my gosh, I'm so excited. I'm so excited to have you here. We just, yeah, I love that philosophy and I love that. I guess what I would say is we've had several conversations now with people through this podcast and interviewing wonderful people and that theme of to be a caregiver or a care partner and supporting someone. It is a wonderful, a generous sort of act that people do and want to do. But exactly the point that you just made is that it's a learned skill too right, and so oftentimes people sort of get helicoptered into situations where they're being asked to help or they need to help someone they love and they don't know what to do. So I love that you have created not only a philosophy that sort of supports that desire, but also some structure and some practical tools, and we're going to get into sharing all kinds of those a little bit later in the conversation, for sure.
Speaker 4:Yeah, the structure is critical and that's what differentiates share the care. For anything else out there is because it has a very specific structure, a very specific meeting that is meant not just to hold the meeting but it's to introduce all the different people within this person's universe to each other, have them learn about what's really going on. So there's no guessing rumor here, say, everybody hears it in the room together and that impact is unreal and it brings everyone down to the same grounded earth that okay, this is what is going on and this is how we're needed. And they also learn in that meeting what kind of help will be needed. So maybe if I tell you about how share the care was born, it'll illustrate some of this in a bigger way. So actually, well, my caregiving experience started in 1984 when I became a solitary caregiver for my mother who lived five and a half hours away from me in upstate New York. My father had passed away a few years before and my brother lived in Japan because he was in the State Department. So everything fell on me. But it was also in the mid 80s. For people who weren't born yet or you know, old enough to know, there was nothing for caregivers. Nothing no books, no organizations, no podcasts, no interviews, no, no, nothing. So I think that's an important point to make, because we were really one of the first of this kind of models. So the reason I'm telling you about my personal experience up front is that that's what drives my passion to get this out, because I know exactly what it's like to be the solitary caregiver and have every day be about caregiving, caregiving, caregiving. Solve a problem, solve a problem. Oh my God, you know you don't have a chance to rest, and that can cause many a caregiver to experience poor health, have some kind of emotional breakdown. I was ready for a breakdown, but fortunately that didn't happen Now.
Speaker 4:At the time I wasn't my mother solitary caregiver for four years, and at the same time this was happening, I had a friend in New York City who was a divorced mom with two young teens and she was diagnosed with a rare terminal cancer which eventually turned into bone cancer, and so when I was in the city I was trying to support her emotionally or go with her to an appointment or something, but that was about all I could do because I was always with my mother. So over time, my mother really needed 24 seven care. So I had to resort to a nursing home and that could be another whole book because that was a traumatic experience as well. But my friend Susan started having issues. Her friends knew about her first bout with cancer because she went into the hospital, she had surgery, radiation, and everybody knew that happened. But Susan was very tough when she got back up and went back to work and everybody thought, oh, everything's great. And little did they know over a four year period that Susan had several more episodes of the cancer. Spreadings from it started behind the ear, was cancer, the broad and gland moved to the shoulder and became bone cancer. She had more surgery, more radiation, but she wouldn't let me tell anybody. Wow, I think that's common. Oftentimes the people keep it a secret. But Susan reached a point just like me.
Speaker 4:Putting my mother in the nursing home reached a point of no return and it was a therapist, dr Suki Miller, who said call your friends, get into my office, tomorrow night will have a meeting, will figure out how to help you. And so finally that broke through to her. She called up 15 people and 12 of us showed up. I knew two women in the room. That was it, because they were from other parts of our friends life. They were work friends, they were other moms, neighbors, cousins, you know. So everyone arrived at this meeting with a different kind of emotion. Most of the people in the room were shocked what do you mean? You're at this state, what's going on? I didn't know. I thought it was under control. I remember personally walking in the room and seeing these spaces and saying thank you, lord, that there are other people involved. I don't have anything left.
Speaker 4:And my late co author, kaby Cappicella, arrived in a state of terror because she had never taken care of anyone or anything, not even a pet, for entire life. She wanted to run for the hills. So the first thing that happened was Dr Miller asked everyone to you know, explain what they are feeling, and also asked Susan to tell everybody what was really going on. And that caused a lot of people to tear up and Susan cried. We cried, you know, and then we were able to move forward and get started.
Speaker 4:And that night was very unusual because we came up with one of the key systems or share the care that night, because it wasn't just one or two people thinking, it was a group of people thinking we had 12 people. We decided we should work in teams of two. We would call the teams captains of the week and the idea was that the captains of the week would go to Susan find out what she needed, then call everybody else, because there was no email or zoom or anything. Get the jobs bill, give Susan a schedule of who was coming when, to do what for how long, so she could relax knowing that her needs were met, and then the following week a fresh team would rotate in. We always had two people, because if something came up in the life of one captain it was always another one to keep the ball rolling. And, importantly, working this way and going to Susan to find out what she needed weekly took a load off of her. She never had to ask for help.
Speaker 2:That's so powerful.
Speaker 4:We started in the next morning and I remember I was paired up with someone from her office and it was after that meeting the night before. It was as if I knew this woman from her office for years, because we had gone to ground zero emotionally, spiritually, and committing to help her.
Speaker 2:Wow, that's on so many levels. That's such a beautiful story because it also extended your community as well, right?
Speaker 4:Yes, yes, because all of those people after, after our group disbanded, we were still like a family. That's what it becomes a family. We started the next day and we did everything under the sun, moon and stars for three and a half years and somebody started calling us Susan's funny family and that kind of stuck. We did, we did everything. We took her to the Bahamas for an alternative cancer treatment, we cleaned, we shopped, we did all the usual stuff and we also, before she passed away, organized her youngest daughter's wedding under Susan supervision. What she wanted is what we did.
Speaker 5:That is so incredible.
Speaker 3:Wow.
Speaker 5:I'm so lucky enough to provide support to my grandmother at home and so much of what you're speaking about, sheila, resonate because I know that feeling of you're only doing the best you can with what you have to work with, and usually it's your immediate family. I know that they're going to help, but they don't know how. And I think creating that community is so special and so important because, for me, with some of my grandmother's caregivers, we've retained relationships far beyond that provision of care and that care experience that we were together in, because we were bonded in a very unique way.
Speaker 4:We were like family, and that's what I tell people the creating of caregiving family around them and especially if they don't have family and there are whole communities, even the LGBTQ communities, may not have family that you know near them or accepting of them or whatever and they they feel comfortable having their friends and loved ones and neighbors who they know really well involved in their care. The other thing I was going to mention was that sometimes I get a call from people and they say, oh, is there a share the care group in my community that you could send? But does it work like that? People are out there volunteering just to help anybody, but they're volunteering to help someone they know care about kind of relationship with, whether it's really close, or they barely know the person and sometimes the people that you think are going to be there for you can't be there for whatever reason, and the person that you almost didn't invite turns out to be a super duper caregiver or wouldn't have expected.
Speaker 4:Yes, yes, and also when I talk about share the care, I say that in the beginning. When people hear about there's an issue with the family or family member or whatever, people want to help and they say, oh, call me if you need me or let me know if I can do anything, and then nothing happens. Yes, and the reason for that is the caregiver or the person doesn't want to impose on anybody and the people who would like to help have no clue, like you said, where to begin. So this is their plan of action.
Speaker 2:Yeah, so like one side is overwhelmed and the other side just doesn't know where to start.
Speaker 5:Yeah.
Speaker 4:Yes.
Speaker 5:And.
Speaker 3:I'm sorry.
Speaker 5:Ashley. Go ahead, you go ahead.
Speaker 4:I don't know.
Speaker 5:You go ahead. Well, I was just going to kind of tie this into the next question.
Speaker 4:So if you have something that you want to share before we do, please, we knew this wasn't going to be a linear conversation, kind of where we're led yeah, exactly, and that's what a group does. It's not, it's not cut and dry you do this, do this, do this. We have guides, outlines, and I'll be talking about that later, because, out of this one model, it's been used for really, really difficult circumstances Like patients with ALS, which is, you know, physically really difficult and requires a lot, a lot of help, but also for people with Alzheimer's or Louise body dementia or any memory issue. There are protocols that can be done and we can talk about that later that are shared cares malleable, depending on who you're caring for, what, the challenges, how many people you have, all that sort of thing. It all comes into play. So that's why it makes sense for the people involved who know the people in the family to come up with brilliant solutions.
Speaker 2:Yeah, and so I I'm going to just jump in because I think we actually this question is probably going to be around the dementia, you know those practical things. But I guess I have a question that would be just because what you were saying is the person not wanting to reach out and stuff. So I guess what would be kind of the first step of someone, let's say like such as who you've described, your friend or the care partner, so yourself in the situation with your mom, who's at that point of overwhelm or whatever, whatever the best word is to describe that what is the first step that that someone could take to put themselves out there, to kind of get that ball rolling, to create the team, of share their share of the care team?
Speaker 4:Yes, it could be started. Well, it's meant to be started by two other people other than the caregiver. The idea is that the caregiver is, their health could be, you know, impacted. Maybe they have their own health issues, maybe they have to go back to work. You know, it could be a million reasons. So I share the care group is meant to be started by two friends or neighbors or whatever, because the very beginning of the share the care book manual how to is written to these two people to describe to them the best way to work, introducing this to the family or the patient or the you know or the other people who might be involved, and organizing that first, all important meeting which is in the book.
Speaker 4:It is scripted. They don't have to make up anything. There are directions about how to keep the meeting on track and someone keeps interrupting. I mean it's very well thought out and it's been probably done hundreds of thousands of times over the last 27 years, because we didn't write this book until 1995, which again was a long time ago. But the point is it works and it's universal.
Speaker 2:It was a tried and true method by that point.
Speaker 4:Yes, with all kinds of issues, all kinds of challenges. The other thing is, too, if the person isn't cognitively impaired, in some way getting their permission to start a group for them or getting them on board. In other words, acceptance Acceptance that this would be a good thing for the person needing the care, or their caregiver and their entire family, especially if they have kids, or one child is ill and the other one or two aren't, how do you keep their lives going? That can be handled through a shared care group as well. So it's acceptance also on the part of the caregiver to allow others to help them. That can be tough sometimes, because sometimes people say well, my husband doesn't want anybody else in the house, I can't do this. Well, you have to find a way around it so that you as a caregiver get the support you need and you tell him you may not want this, but I need it. So look at it as my group Right? Yes, exactly, whatever you have to do to make that work.
Speaker 5:Yeah, sheila. How could the share, the care framework, be used for individuals living with dementia and their caregivers? You shared a bit, but is there anything specific or how can it specifically be used to help somebody living with dementia?
Speaker 4:First of all, yes, there are a couple of things that I tell families, people, whatever dealing with this is the caregivers and the people in your team who are going to be involved in this, because to share the care group for someone with Alzheimer's or dementia, you don't want 20 people running in and out of the house.
Speaker 4:You have to have continuity, you have to have, you know, everything has to be the same. So you start by, excuse me, having a very small group of people who feel comfortable being with the person with dementia, have a relationship with them, maybe their friends, but also having the caregiver and these people that are close in that will be could spend time alone with the care recipient or work on projects with them that they might enjoy. Everybody needs to get some training about Alzheimer's or dementia because it's not something you can just intuit. You know you have to get some professional guidance about what to do when this happens or that happens, because it's very specific and nobody, unless they've done this before, really understands that. So the valuable training or learning everything you can about the disease or the challenge.
Speaker 2:And I love how, in one of the things that you've shared with us and we will share on the podcast page is the understanding of that continuity piece, like where you've said almost having like a core group right for the people who go in the house. But that doesn't mean that you couldn't have, say, a group of 12 or larger group to kind of help with outside things like getting a group.
Speaker 4:Yeah, yeah, they can do all that mowing the lawn, driving the groceries in, you know, they can make meals and drop them off, but they don't have to interact or be involved in the everyday bit unless there's some specific reason. There's so many things people can do Walk the dog, take the kids to soccer, you know whatever. It's neat research, helping to make calls and find out what services are available that could supplement or share the care group. So always take advantage of anything you can where you have additional help, even for the shortest amount of time. So yes, that model of inner group, outer group works great. I also recommended it during COVID, when people couldn't go in the house, so maybe it was just the family members or one or two people who were next door. You know, if there wasn't active COVID going on, then you know people shouldn't feel bad, but they could call, they could send music, they could, you know, send food, they could do things. You just have to use your imagination a little bit. What would you like if you were in that position?
Speaker 2:And, you know, even just taking up that practical suggestion as well from the idea of the pandemic, when people couldn't necessarily be present in making contact with one another, that also probably could add another layer. It wouldn't necessarily help with, like, all of the immediate needs in their immediate, but there may even be room for sort of a share-the-care virtual team to kind of provide support to help with some of the elements of you know being isolated or you know, just having that contact and you know engagement or something that could be done virtually perhaps, right, no?
Speaker 4:that's an excellent suggestion because it's so true. You know people don't necessarily know what they can do. And also things like watching a video with someone or just you know, like you say, having a little mini support group to make the caregiver feel like they're not left out in the cold. You know people. Some people sometimes run away. You know they don't want to engage and that's too bad, because this experience is life-changing. It really changes people for the better. They begin to realize how much inner strength they have, how much they learn, how many friends they make and what a joy it is to work on a project together to better someone's circumstance.
Speaker 2:Absolutely so. Again, you're giving us lots of examples, but I guess I'm thinking about our listeners and I'm thinking about someone sort of having even the confidence or getting you know, trying to muster up a little bit of confidence to even raise the topic of needing help and whatnot. And I'm wondering and even for those who might be sitting on the sidelines wondering how they can help can you think of one or two examples of situations that you might have encountered over the years where this has been successfully applied, in a situation where someone is living with dementia or in a community?
Speaker 4:Or can you think of you know, without naming names or anything like that, whether it be rural or city or yeah, there was a program in Wisconsin for a while that was meant or shared the care groups to help support people who had no family, and so there was no family involved. So what happens is the group of friends who want to help this person and they're in early stage. Of course, yeah, alzheimer or dementia, this is not, you know, full blown because, again, it will depend on the group of people you have. Not everybody will be able to handle that. Some people will. You may have to bring in like someone who's an aide or something who is there constantly, you know that sort of thing. But the team then really has to become like family and they have to become very observant. Again, they need to have some background training from a professional about how to work with someone in early stage dementia so they know what to look for or what to consider. And again, they can also have that outer group that does a lot of things.
Speaker 4:Specialist captains is something that we instigated when my late co-author died of a brain tumor and ironically, we had to have a shared care group for her and she opted for brain surgery, which left her totally helpless, unable to speak right, walk, move, do anything, and we had specialist captains. So people who might be very close friend of the person needing the care, who is good with numbers, might manage paying their bills, for example. But there has to be a trust happening there or have two people so they're monitoring each other it depends on the circumstance Someone who keeps track of the medications, making sure that every day that person takes their meds at the same time if possible, so that it's very routine, and they have to also be very observant about things that are starting to happen with that person, so their observations will alert their doctor or health professional. It's not about spying on people, but it's about being there to protect them from any kind of harm or anybody trying to take advantage of them. You become like a real force in nature.
Speaker 4:You know, yeah, also figuring out this is also in some of the handouts that I sent you figuring out how people, who and this goes for all groups how people who go and buy groceries or purchase you know, I don't know cart to bring the groceries home or something how do they get reimbursed? Right, and that has to be figured out right up front. You know how do they get paid. And in terms of the group for Cappy, my late co-author, we had one woman who was really close and really great at paying her bills, but also if we spent anything, we provided the receipts to her and we would get reimbursed with a check Right and that sort of thing.
Speaker 4:The other thing that's critical when a group starts is to create an emergency plan as soon as possible who to call, what to do, what to take a list of all those numbers and everybody in the group should have that and it should be posted in the person's home. If someone from out of town could happen to be there and they don't know the hospitals or how to direct the EMS to your home in a rural area, you have written directions. It's very it's laid out in that handout as well.
Speaker 1:Yeah.
Speaker 4:So there's so many things.
Speaker 5:There's so many details that you know need to be considered and well thought out, and I think for Daphne and I, that's what we thought was so brilliant about to show. The care was that you don't have to think about those things. It's identified for you and you can add your own personalized, individualized spin on it.
Speaker 4:Yes, but you're able.
Speaker 5:you know things that we've never thought of You've identified just in the five minutes of answering this question is amazing.
Speaker 4:So many groups come up with their own version of a form. You know, they may not like how our form is, but they'll create their own version that works for their group. That's fine. You know what I mean. The idea is to have one. You know, you're absolutely.
Speaker 2:And what strikes me, that observation that I would have is just an observation, not a question or anything, but it's just such a perfect example of just a grassroots initiative that just has evolved and become layered and layered, and I can just only imagine the treasure trove of just rich stories that you have of like success and you know, in the share, the vault or the, you know the, it's just over years and years of just people just making it their own and adding and adding, and adding.
Speaker 4:Yeah, so cool, and the more people share their experience with us, the more I can share it with more caregivers and families. You see, that's that's the goal is sharing this, because it's all about love and kindness. You know, when you boil it down, and that's certainly something we all need. A lot more of other things I would mention that people carrying for someone should notice is has their visibility change? Are they having problems seeing? Are they having problems hearing? Those things can be addressed by a doctor. Or the stability are they, you know, will wobbly. Do they need, you know, a walker? Do they need some, you know, help with managing? You know those are the kinds of things you can look up on the internet or find other books that have that kind of thing. Or is the person you're caring for depressed Right? Are they eating? Some people stop eating.
Speaker 2:So yeah, well, maybe they have to change how they're eating, or maybe they're ticker, and then you know right and again strikes me we probably would have to do, you know, another two hour podcast interview just to kind of cover the topic of loneliness and isolation. But all of those things that you're talking about, those are would all be things that if somebody was isolated, those are things that could go unnoticed for a long time, right, and so it's also obviously helping with the actual pragmatic side of care providing or, you know, receiving care and all the logistics, but also just that, that sort of lens on it of someone being there to notice where they might be at risk for, you know, just being isolated and being not no one there to advocate for them or to support them and whatnot.
Speaker 4:Personally, I told you that I took care of my mother for four years by myself in a rural area was so hard and towards the end of the four years I was literally so stressed out that I was bursting into tears. And it was actually. I was at a doctor's appointment and I don't know if she asked me something and I burst into tears and I told her I'm here and so you know that's how it comes out. You know you break down somewhere and fortunately she suggested that I talked with the therapist, and so I talked to the therapist and I explained to her what I was doing and how I had some different issues and she said you're doing a great job.
Speaker 4:Yes, yeah being so poor.
Speaker 5:Yeah, and it's so often you don't feel like you're doing it, doing a good job right or a good enough job. You have no idea. What would you consider when someone is setting up a share, the care group? What is critical for them to consider, to think of and to implement?
Speaker 4:Well, again, it is for the caregiver, or even two friends who see the caregivers breaking down. They say, hey, I heard about this model that really it's called share the care. It's a way we can help you. The book addresses all these different perspectives and how to introduce it to someone who needs a caregiver, their family or the care recipient, so that they begin to consider it, because it's not going to be oh yeah, sure, okay, go ahead. It's going to take a little time to sink in and consider it and maybe discuss it with their husband or wife or friend or some. It's a process, it's not. It's usually not a oh yes, we're doing this, but sometimes it's that too. So there are reasons why all addressed to these two people in the beginning, like I said, the first nine chapters deal with that. The next thing that they have to do is work with the family or the person to figure out who could we invite to this meeting. This is an all important meeting and we wanna ask as many people as we can, because not everybody will come or they all can't come on the same night, so you might have to get the most people together and then maybe have a mini meeting or it kind of blends. You know what I mean. If you have a group that are already connected, the rest of the people will be connected. So it's getting them to think out of the box, looking at their holiday lists, looking at the clubs they belong to, their neighbors, their best friends, people they went to college with. Again, we got lists of where you can think about going.
Speaker 4:And the next thing that is really important is to get people thinking about what kind of help do we need right away? Because at this first meeting there's a form that we created that collects contact information of the abilities, that sort of thing. But there's a page that has a list of the jobs that you know you're gonna need right away and they may change over time so that people can rate themselves on the jobs. Oh, shopping, I hate shopping, don't call on me or somebody else like yeah, I'm really good at caregiving. I took care of my aunt for like four years and I've been through this. So call me if you need something organized right away. You know that sort of thing and it could be anything. It can be walking the dog, it can be finding someone to build a ramp so we can get a wheelchair in and out of the place, or find a great walker or doing research.
Speaker 2:Yeah, and it's a true team, right, and everyone has their role, like different talents, different skill sets. It's just the definition of a team.
Speaker 4:But it all emerges over time. Yes, you know, you pick the jobs that you feel comfortable doing. You don't have to do anything you don't wanna do, unless you happen to be the only person there and there's an emergency. Then you'd find it in yourself to step up that one time. But you can always call on someone else to come over right away, which happens, yeah yeah, like anything right, There'll be emergency situations but then also just routine, right?
Speaker 4:So getting in to improve and a rhythm and yeah, also, another important team within the team is the medical team. They would be people very close or family, or they would be people who maybe are this person's healthcare proxy or they're very good at being specific, because there are ways of keeping track of medical history that are very easy in the book that we invented for Cappy but also to keep track of medications and make sure that they're refilled, make sure that the dosage is right and sure, but it's not a job to be shared across the board. It's too important. So you have two or three medical captains, right, yeah, almost like subteams within.
Speaker 2:I love it. See, I'm a structure person, so I love process and things like that, and it just strikes me that this is such a gift because it provides that type of structure at a time when people really need it most. Right, because it's a very chaotic time often when you're having health needs, and especially immediately after diagnosis.
Speaker 4:That's a really tough time emotionally for people, so having their friends be there and not running away is so important.
Speaker 2:Yeah, so we're going to. We have two questions that we love to ask everyone who's on our podcast. So I think maybe, if you're okay, we'll ask, we'll shift gears for a minute and then we'll kind of come back towards the end just to make sure that there's nothing really that you missed sharing and whatnot. But I think this next question I'll ask you you've kind of already touched on it for sure, but it goes to the values, I think, behind Share the Care, and so, thinking about our audience and our caregivers of someone who has had a diagnosis of dementia and the person living with dementia, how would you like to or how do you think you are? Because I think you are redefining the dementia experience through Share the Care philosophy.
Speaker 4:Well, I think again, because you are supplementing the caregiver or providing caregiving because they have no family, is critical. It's a way to really make a difference, contribute to that person's health and wellbeing and also, if there's a caregiver, the caregiver's wellbeing. Caregiver could sure use a couple of hours to get their hair done or go to the movies or just get out and be in nature taking care of oneself. Whether you are the person meeting the care or the caregiver and the group, if we don't have our health, we can't do anything Really when you come down to it. That's why, if we fall in the cracks and get sick, then what happens?
Speaker 2:Right, yeah, as the caregiver you mean, yeah, yes, then what happens?
Speaker 4:So that's part of my resistance pitch. If you get sick, then what?
Speaker 2:That's actually really practical. Yeah, like I guess. Sorry I'm sneaking in one more practical question, ashley, I could ask a million, but I guess that you touched on it earlier in terms of getting permission and you've given a couple of quick examples. But so if I was someone who I'm out again wanting to help, do you have in the book sort of a little script or a little bit of a guideline for how to approach and go and have that conversation with somebody to offer the help? I'm sure you do, but I just yeah.
Speaker 4:It's in the first nine chapters because it's gonna be read by the two people meant to organize the meeting. And if you need three people, that's three people help, but the point is you need at least two. Yeah, there's a million ways, and also using as a friend. You know the players, so you know sort of how they might react to something, but then again, when you're talking about illness or dementia, you don't know. So patience is needed here. You gotta remind people to bring their patience and their smiles. I had one other tip that I thought was really wonderful that somebody was doing, especially for someone with dementia. Even if you have four or five people who are coming, you have their picture in a little book. Yes, that folds up, and you say to them I have to leave now, but in about five minutes Jane is coming and show Jane's picture.
Speaker 4:Leave it open on the table so that they feel, oh, I know her and she's coming through the door next. That is very good. So on, you know the next person, the next person, yeah that's brilliant, yeah. Anything you can do to relieve anxiety or fear, yeah.
Speaker 5:I love that and it's so true, and I think it leads us well into the next question, our last formal question and another one that we asked all of our podcast. Yes, so, sheila, for you, what is your hope for the future for people affected by dementia?
Speaker 4:Well, my hope is that we make enough people aware of this model so that there is help for everybody who needs it, no matter whether it's dementia or cancer or ALS or whatever it is. Whatever somebody's hurting and they need help. This is about kindness and love. That's what I keep saying, and the fact that nobody teaches us how to be a caregiver, and if you've never been a caregiver, the best place to learn is in the midst of other people. Probably among them are caregivers who've been there, so you are learning together, and there's that saying. I think Margaret needs that. I can't remember exactly how it went, but if you want to change the world, there's nothing like a group of like-minded people.
Speaker 2:I love that quote. Oh my gosh, dua. Yeah, I mean, we could literally talk to you for hours. I feel like there's so many themes within this, and I think we're going to make sure that we share all the resources that you've given us and we'll direct people to how to get the book and everything. But is there anything that you feel that we haven't asked you or that you just really would love to share, even if it's just what you're up to now with? Share the Care, like any cool things you're working on or people should watch for? Whatever the case may be, there might be something we've neglected to cover.
Speaker 4:Well, as I said, I co-authored the book in 1995 and my co-author died in 2002.
Speaker 4:And that experience again because I've helped a lot of different friends through end of life. But that experience was so close that it inspired me to start the organization and update Share the Care with the second edition and I added 50 more pages into the second edition. It was published in 2004. I want to do a third edition because I have so much more of these protocols for Alzheimer's and dementia. There's also protocols that are for faith communities that can't do the deep dive day-to-day caregiving but can use this model for a faith community very effectively or make people, just make more people aware of it, so it can be employed and used. I think it's up to us to make this a better world and we've got to get out of this looking at our iPhones constantly and get back to personal connection, because there is nothing more rewarding, more growth happening in terms of developing your character or who you are as a human being, than helping people. One last thing I have to throw in here People who live alone.
Speaker 4:There's a lot of us I live alone, but there's a lot of people that live alone If they are not already doing it and this applies for everybody we should get our wills done. We should have a healthcare proxy. We should get a list of our friends and give them to our friends so they could connect if they needed to wishes that we have be prepared in case you happen to need help, and also start going out and helping other people and building your network. Don't tell me I don't have any friends or I only have my cousin and my friend down the wall. Get out there, start doing this work and you will create a team for yourself.
Speaker 2:Being proactive, as you say. Thinking in that last point that's a little bit more upstream thinking of try whatever baby steps if you feel like you don't have a community, to start to create one. How can you even if it's volunteering one hour a week somewhere or joining a church, or joining a faith-based group of some kind or, yeah, it's signing up for a neighborhood block party? We?
Speaker 4:have to nurture each other.
Speaker 3:Yes, yeah, oh, that's so important.
Speaker 2:I think we can, if you go. Allow me conclude the formal interview and say thank you. I will ask a little bonus question we might put at the end. This is a bit of a different, but I would just really be curious, because this podcast is focused on primarily people who are in communities and individuals, but we do work with a lot of organizations as well at Person Centered Universe. So I guess one question that I would have is if I was part of an organization or leading an organization and wanted to become involved in some way with Share the Care, are there some things that like have you worked in partnership, say, with nursing homes or other community-based organizations that have collaborated with Share the Care? Are there any examples?
Speaker 4:Well, yes, one of the things that I did when I started the organization was I started to go out and try to speak to caregivers. I was very frustrating because I would have someone promoting it for two weeks. So I'd show up and there'd be two people and I'd say then come back and do it again. Then I said this doesn't work. So I created a training for health professionals, because caregivers if I'm we're back at the same place remember back to my experience are too exhausted to go listen to someone like me talk about caregiving.
Speaker 4:However, the health professionals in the community, the social workers, the nurses, the support group leaders, anybody that works with caregivers, no matter what the challenge I had a training that I was doing all over the country. I did it up in Canada, I did it all over the US. It's called Seeding Share the Care in your Community. It teaches professionals the nitty gritty of Share the Care not to start groups for people, because that's taking away their power, but rather to introduce it to the families and patients they have in the community so that it can spread. And that way we've been able to reach so many, so many hundreds of thousands of people that we couldn't reach as one organization, because our organization is relatively small and it's all volunteers.
Speaker 2:So that's a really good answer. I'm really glad I asked you that question because there will be people who are in those health you know, allied health professions that probably will listen to the podcast and certainly we will take that in and as person centered universe for sure.
Speaker 4:Also it's evidence informed. There's a study I think I sent it to you if I didn't, I'll be happy to and also that that paper on LGBTQ community and it's accredited by the Northeast Nurses Association for six hours of credit.
Speaker 2:Okay, wonderful, yeah, we'll have to talk to you about that offline and, you know, maybe there's a way in the future that we can find a way to collaborate. Wow, what a true privilege it was for Ashley and I to be able to spend some time with Sheila Warnock. In the US and Canada alone, there are 61 million unpaid caregivers, who contribute more than 51 billion hours to caring for loved ones, friends and neighbors. As a person who has focused her life's work on alleviating the negative impacts on unpaid caregivers and communities around the world, sheila is the very definition of humanitarian. Her philosophy and model Share the Care is really about community empowering, inspiring and helping people to build community around them because, as she said early on in our conversation, we need each other To try and condense the lived experience and knowledge that she has to share after 30 years of doing this work into an hour-long conversation was an almost impossible task. After I reflected on our talk with Sheila, with its many twists and turns, I wanted to underscore a few key takeaways for you, our listeners.
Speaker 2:Caregiving can be overwhelming, to say the least. Share the Care as a model can provide much needed structure for individuals who are feeling that they need help and they have no idea where to start, who or how to ask. Asking for help is hard. Caregivers at times don't know what they need, don't want to be a bother, or they feel guilty that they can't do it all themselves. It is imperative that allied health professionals, friends, family members and neighbors of individuals who are providing unpaid care at home be tuned in and seek to offer help continuously. It may take some time for the person to open up to receiving help, but we should keep trying For any caregivers or individuals who are seeking to help someone in their lives. You can learn more about the story of Share the Care on their website, sharethecareorg, and also download some of the free resources that Sheila referenced throughout the conversation. You can purchase the book, which serves as a handbook for implementing Share the Care in your life or in your community, via their website or on Amazon.
Speaker 2:This conversation made me reflect on humanity as a whole. Quite honestly, in our fast-paced world today, we often don't pay attention to the small things that we can do as individuals to change some of the more challenging narratives. Sheila's reminder at the end of our conversation that it's up to us to make a better world was a profound reminder. I looked up the Margaret Mead quote that she referenced and wanted to share it for our listeners, as I promised her that we would Never doubt that a small group of thoughtful, committed individuals can change the world. In fact, it's the only thing that ever has. What a beautiful way to end our episode with Sheila Warnock.
Speaker 1:Thank you for listening to this episode of the Redefining Dementia podcast. We hope that you have found this information helpful and inspiring. No matter where you find yourself in the dementia journey Whether you are a person living with dementia, a healthcare professional, family and friend care provider, or an ally we aspire to shift the narrative and redefine what dementia means to you.
Speaker 2:This podcast was made possible by the New Horizons for Seniors program. Our music is written and produced by Scott Holmes, the podcast was produced by Janna Jones, and we'd like to offer a very special thanks to our affiliates at Lifelong Inspiration and, of course, to our amazingly talented and knowledgeable guests who gave of their time to share their expertise with us.
