Build a Partnership With Your Care Community: Six Essential Tips / Alzheimer’s and Other Dementias

This is the Whole Care Network. Helping you tell your story, one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Is your loved one in a care community or are you thinking about moving them into one? If so, do you know how to build a collaborative relationship with the care community team? In this episode, Sue and I are talking with James Lee. He's the CEO and co-founder of Bella Groves, an award-winning memory care community. And you'll hear he's also an expert in how to build a true partnership with the care community team. We're sharing six tips. Welcome. We're Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. It is my honor, James, to introduce you to our listeners. Nancy and you and I have had wonderful conversations and you bring such a depth and breadth of knowledge in that. You've been in this space for over 17 years and it began with your journey as a caregiver. And it ultimately led to you expanding out the variety of ways you are supporting the community from, as Nancy mentioned, founding Bella Groves. And one of the things I am most impressed with, and you can give all the background about Bella Groves, is I love what your tagline and guiding star are, that you've actually trademarked. Love this unconditional joy. What a fabulous way to approach being in a community. In addition, you've created the Think Tank, which has been going on for more than five years, which is supportive of aging services. You've got an executive coaching and consulting firm and you're a professional speaker. You're communicating your messages in a variety of different ways for us and we appreciate it so much. Yeah, thank you so much, Stu and Nancy. It's been lovely to get to know you through all of our prep conversations. And any guest who's been a part of the caregiver journey probably could attest to that we learn and unpack so much in the prep. You guys do such a great job in making guests ready for this. I'm really excited to be here and in particular be talking about this topic, which comes up so often just in private. And I think to all three of our credit, we thought, let's record it so it lives somewhere and people can share it. That is so true. And we hear a lot of questions from our listeners just about how to even figure out how to find a care community. And certainly how to partner with one is another struggle. This is helpful. Yeah, no, it's been, you know, in the 17 years that I've been in this profession, 13 of those years have been in what I would call traditional senior living. I've worked for many organizations, some large, some small, but before Bella Groves, I worked for other people within other organizations, other philosophies of care. And I've learned so much through that. And in the last four years, since I've had a chance to start Bella Groves, our small business here in your San Antonio, you know, one theme that has kind of transcended all of those years of experience is this insight that caregivers, both family caregivers and professional caregivers, for whatever reason, the default setting, the default relationship that I have seen have been over and over again, is that there's some adversarial relationship. And I don't mean contentious. It just means like family caregivers take on the role of advocate, as if the professional caregiver is not an advocate. So I think this topic of family caregivers and professional caregivers really needing to develop a partnership, it's become a major theme for me and through Bella Groves and all of my other efforts. It's one of the things that I really, really want to help highlight to bridge this gap to better outcomes for people living with dementia in particular. Those are so powerful, James. And thank you very much. And for this podcast, part of what we want to make sure we're doing is guiding you to get the most out of your community for both you and your care receiver. And in order for us to do that, it's important to figure out what the best fit is for the community to be supporting what you need. And that leads us to tip one, which is assess the overall fit. Yeah, you know, when when people start the process of looking at dementia care communities. You know, first of all, I think going into the mindset that it's not an us versus you it's not a caregiver family, trying to hold other people accountable. The truth is, both parties want to be accountable to the same outcome. So one of the simple reframes that I offer for families is instead of thinking us versus you think us collectively versus dementia. It's Nancy, James and Bella Groves, all of us versus dementia. So that's really a place that I'd want to start with. And then layering on top of that, most families are looking at dementia care communities for the first time, maybe a second time. If you know if they've had the circumstance of needing to look for it more than once, but almost nobody goes into it. It goes into the process of researching dementia care from the lens of the expertise that somebody like me has naturally from from all this experience. So what I mean to say is that families look for very logical things to view when they when they look at dementia care. So they're looking at practical things, location, price, you know, how nice does it look, what does the food taste like and and I would understand why people will look at that first. But over and over again, what I've seen is that it's things like philosophical alignment and true partnership feeling that lead to really great outcomes. You could have your loved one in a very small, modest, no frills, dementia care community. And if you and that care team in particular you and the management team, if you are in lockstep, your loved one is going to have a great outcome. Conversely, you could find yourself in the most elaborately decorated beautiful dementia care community with all sorts of awards. And if you are not on the same page with that executive director, your loved one is might struggle and more poorly you might struggle. So this idea of looking beyond the practical elements of fit and really determining, are you a fit from a philosophical standpoint and even something as simple as rapport? Do you get along? Is there a nice warm feeling between the two of you? I think that's something a lot of people miss. Well, and part of it is also, I think, understanding that you're becoming part of a community, right? Which sort of leads us into tip two because we're, you know, we're becoming, we have to think of this as a community, not just as, you know, the same thing that was happening at home. So, yeah, I love this as a tip number two of embracing the community aspect of dementia care. You know, the way I think about this is any decision that you make in life is really making trade offs, right? So if you're going to receive more of this, you might have less of that. And in the context for dementia care, if you wanted one-on-one direct, you know, support and care for your loved one, well, you have the option of that you can bring somebody in to your home and help them with that one-on-one care. The trade off is it's going to cost a lot of money. And not only financially is it going to be almost cost prohibitive for the majority of people, but the other part is your loved one is not going to have a lot of social engagement, right? You've got one person that's trying to be all things to your loved one. Conversely, in a dementia care community, you get a lot of socialization. You get a lot of helping hands. You get a lot of personal relief to you, the family caregiver. But the trade off of that is now your loved one is one of many other residents of that community, all of whom, by the way, have different types of dementia and are experiencing dementia differently. You know, living in a community has so many positive benefits, but now you also have to contend with we're in a communal setting where other people's needs and symptoms are going to be part of the mix here. I think if you go into a partnership understanding, okay, there's other people in the mix here, and we're going to have to be thoughtful of that, you're going to be set up for a lot better experience if you approach it that way. One thing I would also add on top of that beyond just looking at it as a community aspect of caregiving is that you are going to get close to other families. If you are if you are an engaged family member of your loved one, you are also going to run into other people who are the same or similar, you know, situation like you. So I think one of the most beautiful things that that I've seen happen again and again at Bellagroves is that when a new family member is potentially coming into the mix, one of our family members has has and frequently volunteers to reach out to that person, even even going so far as to have a cup of coffee and having lunch. Have you done that? Oh, yes. Yeah. Yes. Yeah. Why, why do you do that? What's the benefit of that that you see of that occurring? Part of what I wanted to be able to do for them is give them answers to questions they didn't know to ask. I wanted to help them through the emotional part of those first few days when you're it's like, you know, I haven't been a mom so I haven't dropped my child off to school for the first day. I have dropped off several loved ones to a community for the first time. And so it's being able to invite them into the journey. No, they're not alone. Give them a face and a voice. Have them see someone who's gotten adjusted to this part of their care that they will be able to do that and just help smooth the path for them. You know, I see one of the other things you always talk about too is, is recognizing at that point too that your role has changed from being, you know, the primary caregiver to being a care partner with the, with the care community, right? Absolutely. When our loved ones are at home, we're the primary caregiver. And we are managing the care for our loved one. And we begin to outgrow that role sometimes. And we bring care into the home or we identify as I did several times that the right choice, the wisest choice is for us to move our loved one into a care community. And we do that because we need someone who's been able to provide the care that we haven't. So we shift from being the primary caregiver to what we talk about now with tip three, which is your role has changed. And for example, with mine, when we moved my dad and we moved my husband into a care community, there were several areas where I was still a primary caregiver. And yet in other areas, I'm now the care partner. And it's important for me to do my very best to support the care team in the community. And so I reached out to them. I got to know them. I asked them questions. And I said, what are the things that will be most helpful for me to share with you? And when we walk through that, I would say, teach me. So I didn't come at anything from a place of judgment. And if things weren't done the same way I would have done it. I asked, I used curiosity, help me understand, teach me so I could learn from their lens, because James, like to the point that you raised before, as our loved ones, journeys progress. When we have them at home, we're caring for them differently than when we're caring in a community. These professionals know what to do and know how to provide the care. I don't. So it's really being very helpful to them. Yeah, there is a very strong correlation in my experience of seeing so many families go through this, that when a family care partner is really kind to our caregivers, and not just polite, I mean, actually care about them, check in with them, write a thank you note. You know, and, and in particular, whenever something doesn't go right, imagine the power of a family caregiver saying, Oh Nancy, you know what I know you weren't able to help with that shower. I've experienced this so much. But if a family member comes and brings attention to that situation, a care situation, and alerts the caregiver, they can go by it one of two typical ways. And the first way is anger. Right. It's saying this is unacceptable. You got to get here. And this is, you know, and, and so immediately that caregiver, their anxiety goes up and and they subconsciously every time they see you coming into the community. You know, right alarm bells are going off. Compared to if the family member went out and said, Hey, my mom needs a little assistance in there. So, you know, why don't we do this together. And then while you're while you're helping your mom together, you know, just sharing like, I know what this is like, I've done this so many, so many times. And so, thank you for, you know, always looking after my mom. When you do those things caregivers now they feel comfort. They feel safety to be able to talk to you about things that aren't going well, versus a caregiver who has to report bad news to an angry family member, they're going to avoid them. And so, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know, you know you're an advocate for your loved one, you're inviting other advocates to be part of your story now too. And so, if you go into a thinking this team wants a good outcome, those caregivers want a good outcome and they're going to advocate for my loved one the same way that I am. And I think going into it from that perspective that we have co advocates and not, you know, this adversarial default relationship, which is, you know, sometimes we see family members come in and there's kind of this presumption that, we are not doing all of the things that we should be doing. Right. But, but think about how often if you had a family member that you're caring for in your own home, and then a friend of yours unexpectedly came over to your house. How likely is it that your house is going to be pristine, that all the laundry is done, that your loved one is showered and their hair is combed all the beds right. How likely is it that all of those things are going to have happened? Not, not very likely and it doesn't mean you're a bad caregiver or that you were not being an advocate. It's just the nature of dementia. Right. And so I think knowing that going into it knowing that the people that are there to support your loved one are also advocates and that your positive relationship to them will solicit more of that advocacy. That's what you want. Right. Where I think one of the most powerful ways that this is going to be supportive is leading us into tip four, which is the diagnosis is going to progress. By the time that somebody is moving into a dementia care community, not only have they progressed pretty far into their dementia journey and their symptoms, but they're in the steeper part of their journey. Things will change even faster. So I think recognizing that your loved ones needs are going to change. That's one of the things that as family members get used to a standard of care of their loved ones. And then they start to see gosh, moms wearing the same clothes more often or her hair seems a little bit more greasy or gosh, she's having more falls. The assumption sometimes is, I guess the care is changed around here, you know, and they tend to kind of go to the things like it must be turnover or it must be lack of training. And the first thought isn't gosh, my mom's dementia has really progressed. And so as a care team, we recognize that things are going to change, but sometimes families forget that. And I think if you keep that perspective, and you keep yourself educated about what things are going to change, then you've got two parties coming into that partnership with an understanding that things will continue to progress. And the point about that that's so powerful, James is when we're all advocates, when we're seeing a change, we come to ask you the question. Right. And then you have to be able to teach me what's going on and help me understand and is there anything I can be doing to support you. And one of the other things that I have found over the years is that I'm still a very valuable part of their team, because they've got their lens into my loved one. I may see something in them that they wouldn't have noticed because they don't know them in the same way I do. And when I see something, I feel it's my responsibility to introduce that to them so that we can collaboratively look at how do we work together to support this new progression with our loved one. Yeah, I'm really reducing it down to a bit of an oversimplification here but for educational purposes. What we talked to our families about is you are your loved one expert. We are dementia expert. Right. And the two together give us the best chance to get this right. So there are so many things that you know about your loved one that we will never know unless you bring that to the table. And conversely, there are so many things that we've learned about dementia care from all of our repetition and years of experience that you can't possibly gather from Google. So if we bring that to the table and you bring your family's rich story to the table and we put those things together and we approach things with curiosity rather than who didn't do what. But I've got this piece of the puzzle, you've got that piece of the puzzle. Let's put it together and see if we can see a clear picture. And there's another dimension of that puzzle that's going on every single day, multiple times a day. And that's what we're talking about in tip five, which is acknowledging that we as the loved one for our care receiver are grieving. And we're grieving every single day. I call this drip grief. And grief can come out as anger and resentment and you definitely don't want to be coming to the table as a care partner with the community care team from a place of anger and resentment as well. So you definitely want to try to address your grief in some, in whatever way you can with help so that you are bringing your best self to the to the care community partnership that you're creating. Yeah, you know, the grief is. It's, it's, it's a part of this process that I think not enough people acknowledge and address. And in most scenarios, like, you know, I, I'm an advocate for this partnership approach and therefore I and the team at Bella grows. We tend to bring up this topic for discussion. We talk about grief in our support groups. We offer grief counseling to our team members whenever loved ones passed away, whenever our residents pass away. We provide resources to families when they are experiencing, you know, grief. But again, not every dementia care community is going to do the things that we're doing. So this episode and the content of this conversation is to help people where if people aren't giving you the opportunity to address and talk about your grief. Well, now this is your sign, right? This is your opportunity to hear that message that, you know, I kind of think of it as if, if the 3 of us were on a team building a house and I broke my leg. You know, and I said, I'm just not going to deal with it. I'm just not going to deal with it, but I'm here. I'm here to help you. No amount of good intention on my part is going to compensate for the fact that I have a broken leg. But, you know, grief is like a broken heart. Right. And if you're not, if you're not addressing that it will impede and it will affect and it will change the nature of the partnership. And you may think of it as you're deferring it so that you can take care of it alone on your time when it doesn't affect anybody else. But here's the hard truth that maybe a lot of people won't say is that your grief on addressed will affect the care team. It will affect the care team. And so I think that it's a gift that you give yourself to process it in real time. And believe me, you are going to have opportunities afterwards to continue to process it. But it's a gift that you give yourself and to the professional care team that you acknowledge and deal with it. This leads us into tip 6, which is engage with the community caregiving team. I will say that the families whose loved ones have the best standard of care, life, joy, positive experiences, they tend to also be the ones whose family members have a rich engagement with our care team. And so as an example, we had one family member tell us in a care plan meeting recently, hey, there's a lot of new faces around here that I've seen. And I'm curious, are you teaching them about my mom's story and her preferences? But the nature of the question was, are you making sure that your new team members know about my mom? And I said, absolutely, those are things that we're working on. And then I kind of flipped, I flipped the script a little bit with her and I asked, have you approached those new caregivers to tell them about your mom? Because it's very different when you tell them, mom loves to dance. If there's music on, she may not be able to talk to you, but she will dance with you. And there's just something about that. It's so powerful to hear that directly from a loved one rather than hear your employer tell you about a quote, unquote client. So engaging in the community means things like that too. Absolutely. And one of the things that I prioritized is recognizing the care team. They're a valuable member of the team. And I wanted to get to know all of them. When I saw someone new, I went right up to them and I learned their names. I greeted them by name when I saw them. I would often take them cookies or something else. When Costco had sales on dark chocolate sea salt carols, I would always bring them in so that they would have a little special treat. But what I wanted them to understand is how important they were as part of the care team. I saw them, I respected them, I appreciated them, and they would ask me if there was a question. They were fearful of talking to some of the family members because they felt they would be judged or the family members would feel like they weren't doing their job. And I flipped it around. I was like, the more that you share with me, the more I have the opportunity to help in things that I could observe. And I would go in and help with the activities that they were doing. How can I be a part of the team and support what's going on? So I wanted to be an active part of what was going on and meet them where they were as well in giving that care so that I could help them and just really recognize and respect them. I love, you know, when I'm hearing you talk about all of these things too, it makes me think about a leader on a team. And in fact, that is kind of what you're doing is that you are leading this team. And if you were leading a team of employees, you would want to approach them in a similar way. Appreciation, coaching, guidance. If people stop talking to their leader, that's a very bad sign. So if caregivers don't feel confident telling you bad news, that doesn't, that's a really bad outcome for everybody. And so creating the atmosphere where, look, of course you want to hold people accountable to things, but also understanding, give them the same amount of grace that you would give yourself. Anything that you would give yourself a little bit of kindness and grace for, extend that to the care team as well. And the thing is, they are going to want to show up better and more for you because of how you treat them. Those small little courtesies, they do so much for care teams to keep going and keep persisting and keep getting better for future families. And I think that's what we mean by engage in the community care team is not just be nice, but if you're going to invite them to be a part of your life, invite them all the way. James, thank you. Thank you. Thank you. Thank you. Thank you so very much for sharing these valuable insights so that people who are considering community and they're not really sure what it's like have a much better idea of where and how they can consider it. And then how they can be the best care partner when they move their loved one into a community to have the most supportive and advocate versus adversarial relationship. So thank you again very much. What I hope this conversation will spark is at least the insight to reframe from this, this default relationship of, you know, us versus them to all getting on the same side and saying us versus dementia. Thank you. Thank you. Thank you. Let's summarize. So today we talked with James about how to truly create a partnership with your care community team. And I hopefully reframe the way you're thinking about that team moving in. We shared six tips. The first tip was to assess the overall fit. Remember, it's not just about the obvious things. Second tip, embrace the community aspect of dementia community living. The third, acknowledge your role has changed. The fourth one. I really thought this is critical. Realize that your loved ones, dementia is going to progress while they're in the community. So things are going to change. And while those things are changing, tip five was to acknowledge your grief because when things change, we grieve yet again each time. And tip six was to engage the staff. Treat them with respect. Be kind. Put on your best Surayan because she knows how to treat people like nobody else. Now, we brought this up last episode. I want to bring it up again since it's fairly new. Just want people to know that for every episode, we have a matching blog. And effectively, the blog is where we've taken notes for you. So it's a written version of the episode, a short written version of the episode. So look for the same blog number that matches this episode number. And you can go on our website and do that. Or you can also find a link to the blog in the show notes. Now, if you have tips on how to be a great partner with your care community team, please put those on our Facebook page or our Instagram page. The links are in the show notes. If you like this podcast, please share it with other people. Please subscribe to it or follow it. We really, really appreciate it. And as we say, every time, Sue to you, we're all on this journey together. Yes, we are.