Networking & Community for Caregivers | DB Caregiver Webinar Series pt.2

 

Networking & Community for Caregivers

DifferentBrains.org is excited to present our 5 part webinar series for caregivers. Part 2 seeks to foster a supportive community by providing a platform for caregivers to connect, share experiences, and learn from one another.

For other installments: part 1 / part 3 / part 4  / part 5    

 

–ABOUT OUR HOSTS–

CAROLINA LEON, LMHC, LMFT, NCC, QS: “I have been practicing since 2013, working with children, families, and at-risk youth in various settings. I specialize in helping neurodiverse children, couples with communication or trauma issues, and families in the court system. As a dually licensed Mental Health and Marriage and Family therapist, I am also a Qualified Supervisor and National Certified Counselor. My therapeutic approach is tailored to the individual or family’s needs, drawing from frameworks such as Solution Focused, CBT, Gottman, and Bowen theory. Outside of work, I enjoy spending time with loved ones, including my English bulldog Chunky, and I am currently pursuing a Doctoral degree.”

MELODIE PLAISE, M.S.: Melodie Plaise earned a bachelor’s in psychology with a minor in Africana Studies, as well as a master’s in clinical psychology from Barry University. Melodie is currently pursuing a doctorate in counseling with a specialization in Marital, Couple, and Family Counseling. She serves as the Founding President of the University’s NAACP chapter and focuses her research on the historic marginalization of minority populations. Outside of school, she organizes and serves with community advocacy groups to promote equity and justice. In addition, she works to decolonize and destigmatize mental healthcare through her practice.


TRANSCRIPTION


Note: the following transcription was automatically generated. Some imperfections may exist.

ALI IDRISS (AI): Hello everyone, this is Ali with Different Brains and welcome to the Different Brains Speaker Series, and the second installment of our webinars here is for caregivers. Different Brains is a nonprofit that strives to encourage understanding and acceptance of neurodiversity. Our mission is three pillars, one to mentor neurodiverse adults and maximize their potential for employment and independence, to to increase awareness of neurodiversity by producing media, and three to foster new generation of neurodivergent self advocates. Here are different brains, we promote awareness through the production of a variety of media content, including our video series, blogs, podcasts, and documentaries, all available for free on our website. All of our content is worked on by those and the mentorship program through which will aid individuals and taking the first step towards achieving their goals and finding their voice. To find more information or to make a tax deductible donation, please visit our website@diffbrains.org. Before we start, I want to invite everyone to send questions using the q&a feature in zoom, or by putting questions in the chat box. This webinar will have live closed captioning, which can be controlled using the CC button on your zoom dashboard. And now I’m going to hand it over to Melodie.  

MELODIE PLAISE (MP):  Thank you, Ali. Good evening, everyone. My name is Melodie Plaise. I am a third year doctoral student and counseling at Barry University. I own a private practice driven by a mission to decolonize in destigmatize mental health care, and I really look forward to having a meaningful conversation with you all tonight. I’ll pass it on to my colleague Carolina.  

CAROLINA LEON (CL):  Thank you Melodie. Like Melodie said my name is Carolina Leon. I’m also a third year doctoral student and in private practice, I work with a lot of special needs children and their families and just look forward to being able to continue to provide resources for caregivers. Thank you everyone for joining us.  

MP:  Our colleague Pati is unfortunately unable to join tonight. But she will be here next week. So hopefully you all will be able to join us as well so that we can welcome Pati back. Tonight the conversation really is around networking and community right. And before we really get started with that, I just want to kind of like just go over the objectives of what you know, we hope to get tonight. So tonight, we really hope to foster a supportive community for you all to connect, share your experiences and learn from one another. as well. We also want you we also want to equip you with practical tools and interventions that you can that you can use to help balance your roles as caregivers. And one of those tools. i If you attended last week, we spoke about we spoke about a few different things. We spoke about journaling. We spoke about affirmations and we spoke about meditation and guided meditation. So I’ll stop sharing my screen Joseph if you could please share the mindfulness video that we have. I want to engage everyone In an affirmations guided meditation so before we get started with the material so I invite you all to relax, sit, feel the weight of the chair that you’re sitting. And repeat these two years either out loud, or you know, just internally to yourself I am peaceful, I am free. I am happy just to be mean. I am peaceful. I am three, I am happy. That’s it be me. Peaceful, I am free. I am happy just to be I am peaceful. I am free. I am happy just to be just to be mean, just to be.  

So one question that I have is like, how was that mindfulness exercise for you? What came up and you can let us know in the chat if anything came up for you. If this is something that you hope to use in the future, and this is something that you can go on with it as for as long as you want. If you want to do two minutes, I just love the versatility of that, right? You can do two minutes, you can do five minutes of repeating it to yourself if you wish to. So and again, I also encourage you to even maybe possibly look on YouTube or just even searching like quickly on Google guided meditation or if you don’t have much time, search up short guided meditations, right and lots of options will come up and you can pick and choose the ones that speak to you and the ones that make you feel relaxed and just like powerful in your own being. I see some some answers in the chat clearly.  

CL:  Yes, Melanie, I was gonna say. So Shelly says she loves she loves that. And she repeated again. I am peaceful. I’m free. I’m happy just to be me. And we also have some answers from the previous question. Some Bruce would like to learn about resources for elderly as well as an adult child with ASD on the ASD spectrum, chronic migraines and other comorbid conditions associated with headache disorders. From Becky and Jill states that she has a 30 year old son with Asperger’s. He still lives at home and would like to learn about resources for us and will for them and for him.  

MP:  Thank you Carolina like, hopefully the resources that we’ll be providing later on in this in this webinar will will be of use to you we we diversified it we we know that we have a wide range of different caregivers that are attending our series. So we want to kind of we want to just cater as again, to cater the content and the resources to the collective needs of everyone. So it will be a bit mixed up. There will be different things there. And we’ll also provide some links for you that you can find even more resources. So keep keep every keep keep engaging with us keep the conversation going in the chat. We definitely appreciate it. And we want this to be a conversation we don’t want just to I don’t want to do all the talking. We want to hear from you in the chat. Let us know add your questions in the q&a as well. All right, so let’s get started.  

CL:  And you have one more Melodie, Alba says she loves it. It was great.  

MP:  Perfect. Thank you so much. And I hope this will encourage you to kind of like, look for more or even repeat these to yourselves for more time. You know, like whenever you’re feeling like you need that moment to yourself. So thank you for all of the feedback. Alright, so I wanted to firstly define network systems, right? So it’s defined as a cohesive network of family and friends who provide support, both to the care recipient and directly to the caregiver. So I want to ask everyone, like how do you define your network slash support system? How do you define it? Is it defined the same way for you as it is just as it is defined here? Or do you have a different definition for it or is it does your your network or support system look differently for you? Let us know in the chat.  

CL:  So we have a “crappy lol”.  

MP:  Yeah, that’s that’s very, that’s something I hear a lot among caregivers, right? They’re always giving and caring when they don’t often get much back. So I’m hoping that this webinar will also help foster that community support and network for you as well. Thank you for sharing.  

CL:  We have a “support system is family, and difficult who find people who get it”.  

MP:  That’s another, that’s another, I guess, um, theme that I that I that I hear with caregivers, right. Thank you. So I want to make the distinction between direct and indirect right support networks. So your direct support network, as a caregiver, or the people that support you directly as the caregiver, they provide that emotional, financial, just like different support that you and as an individual need, right. And then we have indirect support network where they, they provide support, but through assisting the care recipient. So this could be someone who usually picks someone who’s assigned to pick up your your care recipients and take them to the to the doctor, right. They’re not necessarily providing you anything personally, however, they’re taking the time to take the care recipient somewhere for you, or somewhere that you won’t have to personally yourself take them to. So I definitely want you all to keep this in mind as we move on to the next activity that I have for you all, because a lot of people don’t think about direct versus indirect when it comes to support, right. So this really brings us to talking about just like your personal network, right, because we want because because this is catered to caregivers, we want you to we want to encourage you to also take care of yourself and put yourself first as well. So I am encouraging you all to just take out a piece of paper, or it could be your phone, or it could even be just like a Word document. And I encourage you to like in the next five minutes to take some time to create a list of up to 10 people, it doesn’t have to be exactly 10. But up to 10 people that you feel that you that are part of your support or net, um, support network, right. So take some time to do that. And as you’re writing, though, as you’re writing, as you’re making that list, I also want you to think about these questions that are in front of you, right? For each person, think about what kind of support are they providing you, right? Also think about? Are you able to go to this person to discuss things that are important to you. Third, I want you to think about who is this person supporting, right? Who is the support being provided to? Is this being provided to you directly as the caregiver? Or is it being provided to the care recipient, and in a way it benefits you as well. So for each of those for each person, so let’s say for example, you write Mom, I want next to Mom, I want you to say for mom, she provides that emotional support? And yes, she is someone that I can talk to. And thirdly, if she’s providing that support to you or to the caregiver, make that distinction as well. And lastly, I want you to answer How easy is it for you to ask this person for help or for a break. So take the next five minutes, it is 646 right now. So I’ll give everyone some time to write this. You know, write it for yourself, I want you to be able to refer back to it. Whenever you’re feeling like you know, my social support is not quite there. It’s a reference list. It’s kind of like your go to at this point. I’ll give everyone a few minutes.  

CL:  Melodie we have some more participation in the chat. Somebody said their support system is their son’s, their family and their son psychologist. And same as above I guess trying to say that it’s difficult to find people who get it. It was also shared that their support system is a migraine community there. She has migraines and is a caregiver for her daughter who has chronic my migraines must be really tough because you have to take care of another while still enduring something yourself. And so yeah, somebody else put the online communities have amazing support systems. Melodie they’re asking if you could give some examples again of the types of support social versus emotional, etc.  

MP:  So it can be like any kind of support it is right? So there can be emotional support, it can be financial support, it could be that they just support with transportation if you need a ride or if you need anything. There’s also maybe food security are they helping with with providing food, and different things like that any kind of support that they provide? I don’t want you to necessarily think of just the list that was the short list that was provided, because support can look like a million different things. And I want you to define that for yourself. I want you to define that for who is this person to me? And how do they support me? I hope that answered your question.  

CL:  There’s some or movement in the chat melody, “it’s hard as a caregiver when your person doesn’t want anyone but you to take care of them”. And then “my kids are my best support system and confidence”.  

MP:  That’s amazing. It’s always good to have to have people and I really encourage you to think beyond that. Right. And, of course, we’ll have some people that provide a lot more support than others, right. But I want you to think about all of your support like me, like even if it was like just a once in a one time I really needed to go to like the grocery store. And this person like helped me out, right, they might be like far down on the list. However, you know that if you’re in a bind, you can pick up the phone and this person will help you out. So that can also constitute that support. It doesn’t have to be extremely close and like constant or consistent either.  

CL:  Melodie, there’s also some questions would you say guidance is one than prayer another? If that is a social and emotional support? Definitely, it’s gonna look differently for everybody but 100%. Absolutely.  

MP:  Thank you for and that’s why we’re you know, we’re doing this together, like having you as as my support as my teammate, as my classmate, you know, like this, you know, this, this is a lot easier for me, you know, having you here, of course, so thank you. But yeah, like, I definitely agree. Because maybe one of the people that you are listing is your pastor or your priest or you know, your rabbi, what support do they provide? It would be religious, right? So again, define it as for yourself, as in what does this person provide me? How do they support me as a caregiver, or even just as an individual? Right?  

CL:  It was also shared in the chat, they have a dispenser for meds. And compliance is an issue. And the the comment that was made earlier, when the person doesn’t want anybody but you to take care of them. I kind of go back to what Patti shared last week, right? That you have to have the oxygen mask on yourself, first when you’re in an airplane, and that that signal comes down before you can take care of somebody else. So making sure you’re engaging in some of those self care needs for yourself and taking care of yourself first, before you can take care of that person might be a way to support yourself. Right, when compliance is an issue? Can you clarify a little bit on that? What do you mean, when compliance is an issue?  

MP:  Well, I guess compliance with taking medication? Definitely clarifying. Let us know if you mean that you’re having issues with getting your care recipient to comply with taking their medication. Right, so time’s up, I hope that everyone had, you know, like, used the five minutes really to jot down whatever came up, whoever came up, however they support you. And also like, I hope you were able to answer these four questions for every single person that you have added to your list. And I want you to keep that list somewhere. If you have it on your phone. Remember that you have it on your phone so that when you’re really feeling overwhelmed, and when you’re feeling like there’s literally no one else in the world that could help you right now. Take out that list. And it might not be the first person on that list that can help you out at that moment. But hopefully out of that out of the list of how many ever however many people you you made. Hopefully you’ll find at least one person who’s able to help and support you in that moment of need.  

CL:  Melodie I think we got clarification she throughout the PSW that was coming to help and was also mentioned in the chat religious organizations have a community that can help.  

MP:  Absolutely. Thank you Carolina. All right. So this brings us here now, right? So, I’ve been telling you about all like what networking is and what having a community means. And I’ve even asked you to make a list right? And now I’m coming to the point where I’m asking you like, is there such a thing as too much networking? That’s a question. I would love to hear everyone Sound off in the chat. Do you believe that there is such a thing as too much networking? And also, why do you believe or why not? I would love to know.  

CL:  So “sure, do exhausting to put energy to them too. And too many chefs spoil the broth”.  

MP:  Yes, yes. Thank you, Carolina, for reading those out loud. But but for sure, like, as you see here, networking burnout, it’s a real thing. Saying yes to every networking opportunity, every possible chance to, to do something related to networking, also leads to burnout. So it’s important to continue setting boundaries, even when it comes to networking, right? Being able to say no to certain things, and not really feeling obligated to go to go to an event or a networking occasion, simply because you feel like but I really need that my network, right? Yes, you really need your network. But you also have to just honor yourself and honor how you’re feeling like if you’re not feeling up for it. I strongly advise against forcing yourself to do it, because then you will not be getting as much from it as you would if you weren’t feeling like you really wanted to participate.  

CL:  Anyway, have a few more in the chat Melodie. “Sometimes I just pray because I can’t do anything else. I’ve not always thought I’ve had the emotional resource or energy to give to that”. It was also shared “at times they feel they’re always attending webinars”. That was um, there’s some more so I’ll continue reading them. At first they joined tons of online groups. But as time went on, I stuck with the ones that work best for me. And I don’t feel guilty. Oh, somebody else said don’t feel guilty. Do what you need to do that thank God for webinars to help.  

MP:  Yes. Thank you for everyone sharing and sounding off in the chat. This is what we hope to do, right? We hope to just posture that, that community amongst everyone that’s participating in attending we want you to be able to to realize that oh, there are other people that are going through the same thing as me or similar things and other people who understand what I’m going through, right. So that’s what I want to do here. I definitely want you to continue adding your stuff in the chat and also Reese I love that you’re responding to one another. So that’s definitely wonderful. Anything any anything else in the chat Carolina before we move on to General Resources?  

CL:  No, we’re good to go. Is this Canadian only?  

MP:  Oh, as in is this based in Canada? Is that the question we’re in. And we’re in Florida. We’re in South Florida in the United States. I know that we do have participants from all over I know some people like mentioned being in completely different time zones. And we’ve definitely appreciate everyone taking the time to attend. And if you do need like resources specific to your area, I do encourage you to encourage you to search them or even reach out to one of us at the end you’ll have our contact information and we’re happy. If there are any questions that you have. You can of course use the q&a set on SEC session to do that to ask your questions and we’ll do our very best to answer them. And if we don’t get to them, please feel free to shoot us an email and we’ll be happy to answer it individually.  

CL:  So we have from Scotland and Arizona and I’m guessing Canada. And so somebody else is chiming in different places at different resources. Yes, the end Toronto. Different places do have different different resource sources. caseworkers are amazing. Make sure you get one as they help a lot Boston Wow. You’re so honored to have so many people from all over.  

MP:  This is amazing. So I guess like I as people are sharing resources, I think this is a good time for us to move on to the General Resources Carolina What do you think?  

CL:  Sounds good. And so these these are some of the resources that that we’ve encountered that have assisted caregivers in multiple ways or instances. So obviously different brains.org Is is a major resource for a lot of neuro diverse issues. And they have amazing blogs and webinars that they’ve done throughout the years. It’s a great resource. There’s a lot of parenting groups sort of what what we’ve what everybody has kind of chimed in. Denise’s list is really empowering the parents of children on the spectrum, and obviously this one is, is in Florida, as well as early intervention. Now early intervention is one they have all over the US here in Florida, the two main ones in Broward and Dade are early steps children’s Diagnostic and Treatment Center, and the other branches in the University of Miami and early intervention. They tailored to work with children that are on the spectrum. And or they have a developmental delay. And it’s really they provide services for caregivers and for the child to be able to, to assist in helping the child get to where they need to be. There’s also the card Center, which is a Center for Autism and Related disabilities. And then obviously, as everybody is everybody has sight kind of mentioned in the chat. There’s religious spiritual support, Special Olympics and support groups and adult daycares. Interestingly enough, my grandma, my mom was also a caregiver for my grandma. And I can’t remember she went into an adult daycare she she was with us until about 93. But she loved it. She felt you know, she was taken care of and the bus would take her and pick her up. So it’s almost like they go back to their childhood. So it really something interesting that you know, gives them that support when the caregiver has to work, right, which was the case of of my mom, she worked full time and was still a caregiver for my grandma. So adult daycares there. I didn’t know about it, obviously, until until we needed it. But it’s definitely an option for the older individuals that were you don’t have to necessarily put them in a home, but they’re taken care of during the day, and then you know, you they drop them back off at home. There’s some more things in the chat. I’m just gonna read them. Again, from Boston and connect with social workers, usually a doctor can help network as well. You’re trying to figure out long term care facilities, adult daycares anything in Toronto, especially for dementia. We can definitely look into it in this shot and try to help you as much as possible. In to try to find resources for Toronto, we will definitely do that.  

MP:  Yeah. And we also do encourage you to search locally, right? Put in you know, like “near me” so that it could maybe be even just like five minutes away. I know that if we provide you resources for Toronto, it might be distances, because that’s you know, that’s a whole area. So like that it couldn’t be distances away from you. So we do encourage you and we want to empower you to search locally and find out what resources are available to you in Boston and Canada and wherever you are. We definitely encourage you to search but the name men and put near me or just search things that are local to you. Thank you Carolina anything else in the chat?  

CL:  Yes, so Bruce is sharing National Alliance on Mental Illness, NAMI is an outstanding resource throughout the US and beyond. Thank you so much.  

MP:  So, this this slide is really containing general resources and that’s for as you can see, there, a lot of them may be more directed towards you know, like your care recipient. So I wanted to add something in here that is really for caregivers, right. So I as I was doing research, I came across community connections, right? And they are I believe, like an AARP program or so it says it’s a new website that offers steps to give and get help, which I think is really awesome. Um, Karolina you can share in the chat, you can share the link of the AARP link, which has all of these resources for you. There’s also the create the good, which is an organization that connects people with volunteer opportunities and projects. You Also share their you know, like their life experiences, their skills passions in their community. Third, we have the caregiver Action Network. And this is a nonprofit agency that provides free education, peer support and resources to family caregivers across the country. And this is again based in the United States. The fourth resource I want to go over today is the Family Caregiver Alliance. And I’ve made sure to include phone numbers as well for you all. The Family Caregiver Alliance offers services to support caregivers, including carrier care planning, direct care skills, and wellness programs, respite services, and legal and financial consultation vouchers, which I think is amazing. Last thing, we have elder source, which is a national database of resources, including transportation, low income services, support groups and home repair, and they do have a few locations and Florida, I again, I encourage for every single one of these, I encourage you to look and see if they have anything near you. Because the best way to connect with your community and to connect with people within your within your area is to look up things that are around you and near you. All right. Anything you’d like to add Carolina, before we wrap up the information section and move on to our q&a session?  

CL:  No, I think just as you said it’s important to look where where you are at. Yes. Natalie stated in South Florida 211 is a great option. Yes, they give you a lot of resources and they can really sort of tailor it to where you’re at kind of what melody was referring to. It really depends on your location, because that’s also part of being successful with with obtaining some of these resources that it is close to where you are at or to the individual that you’re caring for.  

MP:  Absolutely. Thank you Karolina. So this concludes the the pre actual presentation. I do want to open. Just open the time up now for some questions. Please make them add them to the q&a. And also if there are any questions in the chat. Will we’ll make sure to get to them and answer them. Thank you for of course attending. And, of course stick around for some questions and answers.  

CL:  It was also shared in the chat Gary Barg has been publishing an excellent caregivers e newsletter for almost 30 years. Thank you, Bruce. Bruce have a lot of resources.  

MP:  We definitely need Bruce in our corner. Right Bruce sounds like he’s done the work. And he’s fortunately willing to share that with everyone. So thank you for doing that.  

AI:  Thank you so much Melodie and Carolina, we’re going to move over to q&a. And speaking of newsletters by Bruce that we have, one of the questions is, are there any newsletters I could sign up for to be involved in the caregiver community?  

MP:  Thank you, Ali. There are definitely a lot of newsletters specific to caregivers. And again, like some of the links and resources that we’ve provided, if you join that specific organization, or you become involved with that specific organization or nonprofit, they will have resources for you. So that’s why I encourage you to look up what organizations are available to you in your area because they definitely will have a lot of newsletters for you.  

AI:  Okay, so next question is, how would one prevent too much networking and find a balance in their network?  

MP:  Boundaries. That’s the word boundaries, right? saying no. Putting yourself first right? So if initially when they bring this up, you’re not that excited about it. Don’t don’t just agree because it’s an opportunity to network and you feel like no opportunities ever going to come by again, right? We often have FOMO when it comes to opportunities, right? We don’t want to miss out. But it’s important to maintain these boundaries so that we don’t get burnt out so that we can continue to maintain that balance that we all strive to maintain.  

CL:  And also I was shared in the chat “to not feel guilty. And that’s the hardest. Definitely don’t feel like you have to overreach to network.” I think it was also shared in the chat they join that people will join a couple of networking opportunities and they stay with whatever it is that feels more comfortable for them, or whatever it is they feel that supports them best, even in the chat, even try doing it all yourself. Yes. So it’s really important to try to, you’re just sort of going to eliminate those that maybe are not as helpful and go from there.  

MP:  Absolutely, I agree. And I encourage you to join as many organizations as you can and as you want to and as as many that feel right to you, right? And then as Carolina mentioned, then slowly, you can remove things, you can leave the ones that do not specifically align with what you’re looking for. But there there are, I promise you there is something out there for you specifically look like something that an organization that literally pinpoints exactly what you’re needing it’s out there, it’s just it’s just a matter of researching it. And I hope that you find one in your area specifically, because sometimes you might not, and you might have to join a national thing, right. But I hope that you’re able to find local things as  

AI:  Okay, so next question is how can I find caregiving resources in my area?  

MP:  So Google, what I would say would be like your top like, search, and I guess the the top search engine, right? So simply putting exactly what you’re looking for, if you’re looking for a support group, I say, look up caregiver support groups near me, right? Looking up things that are within your area, a lot of times will will, will be a lot easier for you to want to participate. Let’s say for example, you simply you don’t look at you don’t look at things that are near you, and you find something and it’s maybe 30 minutes away. Yes, it might be beneficial. Yes, the content might pertain to you. But just thinking about that 30 minute drive there and 30 minute drive back might not make it so appealing to you. So again, like we encourage you, and we want to empower you to do the research and do the legwork and and find these resources that specifically work for you as an individual, not necessarily as a caregiver, right. Because beyond a caregiver, you are a person, right. And we want you to look at resources and look up resources that that that validate that that really do make you feel like an individual and not just as a caregiver who’s just there on this earth to care for someone forever, right. Anything you’d like to add Carolina?  

CL:  Yeah, and I think it’s also important to sort of narrow down what you’re looking for. Because sometimes when we’re looking for, let’s say, a bigger topic, like caregiver resources, maybe be a little bit more specific, if you’re struggling as to what you’re looking for. Are you looking for transportation? Are you looking for, you know, specific caregiving, you know, something to assist you. You know, what is it that you’re looking for specifically, might help whether it’s daycares, right, adult daycares, or just being a little bit more specific, rather than caregiving might help you. And as somebody else stated in the chat, being able to sort of network out and delegate as well, if you can, right, not trying to take everything on yourself.  

AI:  So so next question is, if you have loved ones you’ve never approached for support before, but want to what’s the best way to approach them?  

MP:  I always strongly encourage open and honest conversations. Going to the person and simply expressing why their support would be a value in abuse to you, is honestly the best way to go about it. So just being open and honest and not beating around the bush and simply if you need if you need it, if you need that support, and that help simply coming out and asking for it. The worst that can happen is that they say no and that they can’t help. However, just knowing that you did your part and you asked is is definitely there’s also that the part where they might say you So you might get that support that you’ve been wanting so definitely, openly and honestly asking.  

AI:  Okay, next question is, what are some examples of online communities that you too are a part of that we can join to stay connected to a network of caregivers?  

MP:  I personally, I know Pati pot like, I know Pati has a lot to say about Denise’s list, right, as a resource for caregivers, because as a caregiver herself, you know, she, she has shared some resources. But again, like, I do want you personally, I’m not part of any caregiver specific organizations. The organizations I’m, I’m a part of are, of course related to counseling and psychology and, and different things like that, right things that work for me things that I need for me as an individual, right. So again, I’m saying it again, I know it’s getting redundant and repetitive at this time, but I do really want to encourage you to think about you as an individual and what works for you.  

CL:  I’m a mom. So I can say I do belong to some parenting groups. I also work a lot with special needs, children. So I may be in some of the ASD on the autism groups, and whatever, maybe any any family member or client would want me to support in. I can recall one, it’s a Sanfilippo syndrome. And again, this is because somebody asked me to join and just provide that support. But I agree with Melody, you have to find out what works for you. And what are those networks that really speak to you and your needs, it’s going to look a little bit different for everybody. And if you want to continue, you know, keeping in contact with with any of us, you have our information, and feel free to reach out anytime.  

MP:  We definitely encourage that. Reach out to us, let us know if you have any questions, let us know if there’s any way we can continue supporting you, right, we want to go beyond this. We want to be able to provide you these things that maybe we’re not able to provide here in this webinar.  

AI:  Okay, so next question is, do you think it’s okay to discuss my network of caregivers with whom I’m caring for?  

MP:  I think that’s entirely a personal decision. That’s something that’s really up to you. If you feel comfortable, and you feel the need to share that with the your care recipient, then by all means do so. However, if you do wish to keep that separate, as well, do so do whatever feels right for you. Yeah, do whatever feels right for you.  

CL:  And I think it’s also really going to depend on the population that you’re caring for. Right. So again, I go back to my grandma, that’s just my biggest point of reference. She also had dementia, right, she had senile dementia. So sometimes sharing with her too much wasn’t beneficial for my mom. So it just really depends on the population that you’re caring for, and you will know them best. So however you think is more comfortable, or would be beneficial to both, I think is really the way.  

AI:  Okay, one last question. How can you make sure you don’t overuse your networks?  

MP:  So hopefully, you’re the people within your network. Once they do see you setting boundaries, right? Hopefully, they’ll also be encouraged to do the same. And that’s why it’s so important to set these boundaries. I also want you to encourage your support network to set those boundaries, right, like encouraged, like, if you, you know, like, always encourage them to, you know, say no, if it’s not, you know, if it’s not possible, and just letting them know that it’s okay to say no, and just really encouraging them again, to set those boundaries. And the best way to encourage people to set boundaries is by modeling these boundaries. So when they see you modeling these boundaries, they’ll be a lot more comfortable and feel a lot less guilty when they have to set boundaries for themselves.  

AI:  Okeydoke and that’s it for the questions.  

CL:  Thank you so much.  

AI:  Okay, so Carolina, Melodie, you guys have any closing thoughts before we finish up?  

CL:  Now we just appreciate everybody who joined us and the level of participation and even support within our webinar right you could see that the support for one another ally you’re always wonderful. Thank you for for guiding us and joining us in this journey and we hope to see everybody next week for our third webinar series.  

AI:  Thank you Carolina.  

MP:  Absolutely and I, I echo everything Karolina has already said, Thank you, everyone for participating. Thank you for engaging in the conversation. Thank you for participating in the activities. I hope that you got something out of it, I hope that you’ll be able to use them later on in the future. And I we hope to see you next week at you know, 630 Eastern time for our next webinar. Again, thank you for joining and we hope to see you next time.  

AI:  Thank you, Melodie and thank you to both of you are amazing presenters, and thank you everyone for attending. Be sure to come back in one week for the third installment and Please Visit differentbrains.org for more content and resources related to caregiving, as well as many other topics. We will be sharing links and contact information for everyone in the chat box and on the screen. From everyone here at Different Brains. Good night