Resource Fair: Caring for the caregiver (2024)

Meagan Lockhart 0:00
Good afternoon. My name is Megan Lockhart, and I am the COLONTOWN cabinet representative who was responsible for hosting our Caregiver Resource Fair entitled Caring for the Caregiver. This presentation was hosted live on April 30, 2024. We had six organizations represented to showcase their services and information that they have, that supports cancer caregivers. I have to apologize, as I was a bit late on the record button, so we missed the introduction for our first guest. Our first guest is named Vicki Mackie, and she is the founder and CEO of the organization entitled Sites and Insights. Vicki is herself a cancer survivor as well as a caregiver survivor. For more information on Sites and Insights as well as links to all of the organizations represented in the video, following, please click on the supplemental documentation located on COLONTOWN University. Thank you, and I hope you enjoy.

Vicki Mackie 0:59
To help process this life changing journey, we offer a unique way of transforming fear, anxiety and grief, and then generating hope, motivation and empowerment. Now oftentimes people come to our programs thinking that we’re going to teach them how to draw a house or a horse. And I will be very upfront with you, it’s not going to happen, because the best that I can offer anyone is maybe some stick figures, and to be very honest with you about that, that’s going to be mediocre at best anyway. So no, you don’t have to be an artist to come to any of our classes. But instead, what we do is we teach a new language using color art, mindful techniques and complementary therapies when your cancer story is just too difficult to put into words or verbalize and I know each and every one of you can understand exactly what I’m talking about there. So what’s behind the mindful therapeutics through art programs? Actually a lot more than you would probably guess, because when I first started this and I was talking about art, oh, that’s just foo, foo stuff. Well, let me explain to you, no, because I’ve actually developed a program, what I call the SAI method. It’s all evidence based. There is research behind every single solitary thing that we do and say in any of our programs, and it has proven to improve the feelings of hope, healing, empowerment and overall well-being. It incorporates just a myriad and there’s actually more than this, but a myriad of things behind it that all have science and research behind it. The first one is therapeutic art. So let me explain. First, we do not do art therapy, nor do we teach you how to draw, as I explained to you earlier, but we also have complementary therapies. Now, most of it is actually behind the scenes, done, very, very subtly. Complementary imagery, mindful techniques, neurographic cycle, neuro immunology, electromagnetic energy and emotions, how the right and the left brain processes through the brain, color expressions, and we don’t use color psychology. We do the science of color integration of the five senses with all of that and how it works with the brain, empathetic, camaraderie and epigenetics. Some of these you may know. Some of these you may not, but if you go on to our website, it explains and defines each and every one of those. So if you’re interested in any any of that, that’s the place to go for it. So there is a holistic approach that we do, but behind that, as I said, there is science behind it, and therapeutic art can actually change the body’s physiology by reducing stress, and is shown tissue rebuilding and enhances brain function. They have found that they have to use less pain medication, and it has shown to decrease depression, and anxiety. It lowers your blood pressure. There’s a whole lot of things that they are now showing behind the mindful tools. It calms the nervous system and it stops that chattering brain, the one that wakes you up in the middle of the night, goes “tick tick tick tick tick tick tick,” okay, and we all have it, and it can be specifically about one thing or just a myriad of things, but we teach you tools to help with that chattering brain. It’s the integration of complementary therapies, such as: we do music therapy, aroma therapy, laughing yoga, play, dance, guided imagery and the five senses.

Vicki Mackie 5:16
Now, I’ve talked a lot about the a lot about the science, but behind all of that, as you’ll notice, we do a lot of playing and a lot of laughter. And here’s a list of some of our programs: the virtual, mindful Therapeutics Through Art Workshops. That’s a four week workshop. We meet for two hours, for four weeks, and it is virtual; the Self Development Mountain Retreats, I’ve kind of made that into three sections; We have Self-Exploration, Self-Discovery and Self-Awareness retreats; the Clinical Caregiver workshops. And we do those, plus we do classes for them as well, the in person of the plein air, which is actually French for painting outside, the plein air classes, the Contemplating Nature series and the Contemplating Nature classes, those are all in person. And we also do a four week Therapeutics Through Art workshops, which works the same way as virtual except that it can be any time of the day, or any place. All of our facilitators are certified through us, and so we do have bilingual facilitators who guide us through the spanish mindful therapeutics through art programs. Also we do customized programs, classes and retreats, whatever your goals are, whatever you need, what your needs are. And it’s not just painting that we did, by the way, and everything, by the way, is abstract when you paint. But we also do work with chalk, watercolors, oil pastels, masks, as you can see, collages and a lot of different other kinds of projects that we do. And there’s more. Our curriculums are evidence based, as I said, and have proven to help heal the emotional trauma that comes with a cancer diagnosis. Now, what that really means as what I actually do call, is stuffing and unstuffing. Very simply, you see, research has shown that when you stuff down negative emotions, it starts to deplete your immune system. Conversely, if you stuff down positive emotions, it will help heal that immune system. So what we do is we teach you how to unstuff those negative emotions and free stuff with positive emotions. And our method and data was actually published in the ACCC Oncology Issues Journal in 2023 showing the improvement in the participants, feelings of hope, motivation, empowerment and overall mental and emotional health. And it doesn’t matter what kind of cancer you have or had, and this also goes for the caregivers, or where you were or are being treated, or even how far you are from the diagnosis. It can be, two months or 30 years, and we’ve had both. All of our programs, of course, are all free to any adult who has been impacted by cancer, and they’re designed for cancer survivors, the cancer caregivers, survivors and the clinical caregivers. Now, when you start doing any of our programs or volunteer – whatever you do, I have to tell everybody that you are automatically inducted into the Sites and Insights family. Like it or not, this is your new family. But the way you do that is just go onto our website, click on Calendar, and it’ll give you all of the list of the upcoming programs that we have available and the dates and just register. And then we’ll get in touch with you, and we send you all the supplies that that are needed. And then also, if it’s full, we just automatically keep you on a waiting list, and we’ll send you an email and say, “Nope, it’s full. How about this date?”. If that works, great. If it doesn’t, we just continually put you on the waiting list until it works out for you. So that in a nutshell is Sites and Insights. We look forward to creating with you. And here’s our information, if any of you are interested. Thank you so much.

Meagan Lockhart 9:57
That’s wonderful. Vicki, thank you so much for sharing more about your organization. If anyone has any questions, you can please drop them in the chat. And I just have one question for your Mountain Retreats. Where are they located?

Vicki Mackie 10:13
Actually, it’s a little town in Colorado called Beulah, Colorado, and most Colorado-ones don’t know that it exists, but from Denver it’s about a three hour drive.

Meagan Lockhart 10:28
Wonderful. Thank you so much. Okay, so our next presenter is Jackie with Imerman Angels.

Jackie Herigodt 10:41
I got it. Yeah, awesome. And now you are like, probably thinking, like, “you are sharing the wrong thing, because there is a picture of a hospital, right? Haha, that’s your dining room.” That is correct, and it is intentional, and I will tell you why. So I have this picture because everybody understands restaurants, right, and they come in mostly everybody’s lives, right? So you’re like, ask a friend if they’ve been to a particular restaurant, because you have questions about it, like, what did you order when you went there? How was the service? What did you wear? Was it expensive? And tell me about the dessert, because that’s the most important question, of course. And so you’re going to ask somebody who’s been there, right? And they’re going to tell you, “Oh, yes, this was great. You know, this is what I ordered, and yada yada”. So they’re going to go on and on about this restaurant. So of course, when somebody receives a cancer diagnosis, they’re going to want to talk to somebody who’s been there, and so they’ll have questions like, I don’t know, maybe, “is it expensive to go through cancer? Or, maybe something like, can I work while going through cancer? Or will I be able to have children after cancer?” Or, “how do I get rid of this yucky metallic taste caused from chemo?”, or if you’re taking care of a loved one, you might have questions like, “How do I balance my life and theirs? How do I tell my children about my loved ones cancer diagnosis? What if my cancer, my loved one, doesn’t make it through cancer, how will I possibly move on with my life?” Or you may even have a question like, – I’ve seen this in my family – “I have this genetic mutation. I have no idea what this all means.” So all these people are having these questions, and these are just some of the questions that are happening every single day, and I know that people are feeling alone, and that’s silly, because Imerman Angels is here to help people get through all of these questions. They don’t have to go through it alone, you see, because our whole mission is to provide comfort and understanding from someone who’s already been there, done that. So whether you’re a cancer fighter, survivor, pre-viver or caregiver, we can get you connected to someone who’s been there on a one-to-one conversation. We envision that a world with cancer is not a solitary experience. Now you probably are wondering, “who am I to be talking about all this?” Well, I wish I could say I had no personal experience with cancer, but unfortunately, that’s so not true. You see, when I joined Imerman Angels, back when the dinosaurs walked the planet, I had already lost my grandmother, my uncle, my grandfather, my aunt and my mom to cancer, so I needed a way to turn my pain into power, and Imerman Angels allowed me to do just that, because I became what’s called a Mentor Angel. A mentor angel is a cancer confidant, a person that can share some tips, definitely understanding, from a place of being there. They’ve already gone through this, so they can share simple tips and tricks, like, if you have that yucky metallic taste, go ahead and have some lemon heads, because they help get rid of the yucky metallic taste caused from chemo. But of course, there’s other tips and tricks that a mentor can share and help really be that listening ear. The power of being a mentor angel is also amazing to know about, because if you’ve gone through these different experiences, you can really shed some light to someone else who has no idea. You can be that light in a dark room, and really you may be the only person that they know who’s actually gone through this experience. Now, a lot of people want to know if we actually train our mentors, and we do. We, of course, tell them that the bulk of their training is their own experience, and we cannot, nor would we want to train on that, but we also give them a Mentor Angel guidebook and a video. The video has interactive quizzes throughout it, and then at the end, you actually get certified, and you can print out your certificate and hang it over your fireplace and show it off to all your friends. But no, seriously, a lot of people talk about how cancer has made them feel like victims, and yet Imerman Angels has allowed them to feel like a hero. Now, this magic that you’re hearing about is not just happening in a small little town, it’s actually global, and we’re in 120 countries. We’re helping all cancer types. We have almost, I haven’t updated this, so don’t tell anybody, but almost 15,000 mentor angels and over 39,000 mentees have been connected. That’s almost 80,000 people when you put the mentee and mentor together. And it’s such an honor. We’ve been doing this for 18 years almost, in August. That’ll be our birthday. So this is how you do this. You go ahead and go to our website, super easy. It’s imermanangels.org, not mermaid, not Zimmerman, not double M. That’s the biggest problem we have. Is our name. I’m not going to lie, but I want to explain Johnny Imerman is the reason for that name. He is our founder, and he was a two time testicular cancer fighter, and he went through his experience, and while he always had a room full of people telling him it was going to be okay, and he appreciated it, he didn’t have anybody that had been in his shoes. So remember that restaurant analogy? It’s kind of like if somebody says, “Yes, order this food, it’s not expensive. This is how you dress. This is how you get there”, and you’re left, “Oh my gosh. Thanks so much for this information. When’s the last time you were there?” and they’re like, “uh, never”. The information is just not valuable. I’m sorry, but it’s true. It may mean a lot, but it’s not as valuable as from talking to someone who’s been there. So back to how you go to imermanangels.org and you actually register, and we will give you a date to get assessed, and you’ll talk to one of our amazing Cancer Support Specialists, and we’ll go through what you need, or if you’re becoming a mentor, we’ll go through the training with you, but we make an introduction, and y’all take it from there. It’s super simple. I’ve also put here the phone number, in case you don’t want to do online. It’s totally fine. We will go ahead and register you on the phone. Now, here’s some of our partners that we already work with, and you can see, they’re pretty vast. I do want to point out a special organization on this list. It’s down here on the bottom, so hopefully you can see my little mouse moving. So COLONTOWN is one of our peer to peer partners, and so we are very honored to be teamed up with y’all and thank you again for having us today. But these are all part of our peer- to-peer partners, which means we have a very large net that we’re casting to make sure we have the best mentor for each person that comes our way, which is the most important thing. Here are some of the resources that we have listed on our website. And we give these resources because Imerman Angels has a team that has all been personally impacted. As I mentioned, I lost several family members. In 2019 my sister actually got diagnosed with stage IV breast cancer in 2020. I then got diagnosed with skin cancer in 2022, we had already had genetic testing, but it came back. There was an upgrade to my sister’s genetic test, and they actually said something about her actually having Lynch syndrome. So we’ve started to really build on all of our personal experiences, because we know our personal experiences are actually part of the community’s personal experiences, and that’s vital to learn from our own situations. And so we’re building out these different resources, built off of our experience and our community. So I highly encourage you all to take a look and take advantage of any of these resources, because they’re free. Now, we have an upcoming event, and it is about cancer uncertainty, which couldn’t be any more broad as far as a topic, but it is going to have a panel of Mentor Angels discussing their experience with cancer uncertainties and how they dealt with it. And it’s May 21 at 6pm and I would love for you all to take advantage of it and join us. And that’s it from me. So if you hover over that QR code, it will take you to our website. But again, if you don’t want to do that, feel free to call that number listed. And again, thank you all for having us and listening.

Meagan Lockhart 21:23
Thank you so much, Jackie. It’s so great to have you present for us once again. And as she mentioned, she is a COLONTOWN partner with Imerman angels. And if you are looking to become either a mentor or get a mentor, you can sign up on their website, and they can match you very specifically to someone who has gone through something very similar to you. And then next up we have Nicole Jarvis with Cancer and Careers.

Nicole Jarvis 22:06
Thank you, Megan, thank you all for having me here today. I’m Nicole Jarvis. I’m Assistant Director of Programs at Cancer and Careers, and I am also a licensed social worker, as I realize you can maybe see right here. I’d like to start off just by sharing just a little bit of history about Cancer and Careers. Since 2001 we’ve been at the forefront of balancing a cancer diagnosis with work. As I mentioned earlier, we’re a national nonprofit, and we are the only program of its kind that’s solely dedicated to empowering and educating people with cancer to thrive in their work environment. So just a little bit on how we got started: Cancer and Careers is an initiative of the CEW Foundation, which is the charitable arm of Cosmetic Executive Women, which is a trade association for the beauty and fragrance industry. So CaC was launched more than 22 years ago at this point, after five of CEW’s board members were diagnosed with cancer and facing the work-related issues that tend to come with it. Now, these women were very high up. They were leaders in their industry, heads of companies, glass ceiling breakers, and they really, really, really wanted to keep working, but they found that there was nowhere to go for the answers to many of the questions that they had, so they decided to create a program to help others who were experiencing these same challenges. Now on this slide, you can see, this is a list of the free programs and services that we offer. Our comprehensive website that’s available in English and Spanish is really the heart of everything we do. Anyone that’s been on it can see that there’s a ton of information on there. You can also find various support services on there, which include our resume review service and access to career coaches. We have educational blogs and news feeds that are really rich resources where those who’ve been diagnosed, as well as caregivers, employers and healthcare professionals can really stay current on topics that are related to work and cancer. We also offer a free publication library, which is available in both English and Spanish, really providing tangible and easy to digest information on working and looking for work after a cancer diagnosis. These are available in both hard copy and PDF formats, and they are free for order. And additionally, we offer numerous events each year, hour-long webinars and full day events. And I’ll touch a little bit on those in just a bit, but I do want to just start by taking some time, just to highlight some of the challenges around caregiving for someone with cancer, while trying to maintain and balance the many, often competing responsibilities that are separate from caregiving. So I want to just talk about something that many of you as caregivers may relate to. We know that caregivers of people diagnosed with cancer often find themselves confronting some very common misconceptions related to work that can be pretty difficult for them to counteract. Some of these misconceptions include that they don’t want to work, or they won’t be as productive because of their caregiving responsibilities, or that because they themselves are, “fine”, they don’t need any special consideration. Or they can easily compartmentalize or separate their jobs from their caregiving experience. Again, these are really, generally, misconceptions, which means that they’re largely faulty ideas and notions and also serve as barriers to understanding the full picture of an individual’s experience. So really, one of CaC’s goals is to show that there’s so much more nuance that can be involved with caregiving in the workplace than a lot of these misconceptions tend to allow for. And there was a report released by the ARP Public Policy Institute in 2020 that illustrated many of the caregivers shared experiences. So the majority of caregivers were managing work, either part-time or full-time while caregiving, and of those, many experienced an impact to their employment as a result of those responsibilities. Days off, cutting back work, hours and even leaves of absence, were all cited as the ways that they changed their approach to work while they were caregiving. Now this is, of course, not everyone, but it can be really validating to recognize that these are some of the ways that caregivers were balancing their work and caregiving responsibilities. And it can also be really tempting to try to keep everything status quo, but the reality is that when a loved one is diagnosed, the impact of that diagnosis is felt far beyond just that diagnosed individual. So it’s really important to recognize what those impacts are on caregivers in order to really strategize how to best address some of those associated challenges. And of course, you can’t really discuss the experience of caregiving without digging into some of the challenges that are associated. So from that same study from ARP that I mentioned, there were three primary struggles cited. The first was mental strain, so feelings of stress, guilt, anger, anxiety and so much more, were really prevalent among caregivers that were surveyed. It can often feel very frustrating for caregivers who wish that they could do more or control the situation better. There’s also the physical strain, so experiencing their own health challenges as a result of this new amount of emotional stress, but also some of the physical aspects, like less personal time in the day to address your self care, less sleep, more household tasks that you’re taking over, etc. And also, many caregivers are already dealing with health issues themselves. So what does it look like to balance your own with that of a loved one? Vicki said before, the “survivor caregiver”. Then there’s also the financial strain. It can be really challenging to plan for, since there’s no set timeline. This really comes into play when communicating with an employer on what will be needed and what the next month, quarter or year might look like for you. And it’s not uncommon to take on debt when caregiving as a result of medical bills. Loss of income from a partner, loss in income, if your work hours are cut or you need to take some time off, these are just to name a few ways that that happens. And similarly to identifying how caregivers handle their situations, it can also be validated to understand these common challenges that are associated with caregiving so as to not feel so alone, but also to give oneself some grace on the mental and physical responses to their situation. And of course, this is something that Imerman Angels could could really help with, in terms of just feeling like you have a community and you can relate to others. So just really important to keep in mind. So now that I’ve covered a little bit of that, I just want to touch on Cancer and Careers offering employees who are caregivers are often looking for supports that are very similar to those that people who are diagnosed are looking for. There’s a lot of overlap in some of those challenges. So one way that CaC addresses the issues around work in cancer, is through our educational programs. So here you can find some of our programs that are held throughout the year. Educational programs include our three full-day conferences each year. Our national conference is coming up on June 21, and this is virtual, so I would definitely encourage anyone who is interested in it to register. We also offer 12 “Balancing Work and Cancer” webinars that are presented live throughout the year on a monthly basis. We have one tomorrow, actually, about networking. If anyone’s interested in that, we do post the recordings on our website if you’re not able to attend the live session and we are now captioning them in Spanish, those recordings. We also provide in-service trainings for healthcare professionals. These are designed specifically for healthcare, or help professionals, who work with cancer patients that are facing issues around their diagnosis and employment. There will be two held virtually later this year. I’m not exactly sure of those dates as of yet. We also offer animated “How To” video series in English and Spanish, and we partner annually with the Harris Poll to conduct proprietary research initiatives that really inform everything we do. And we structure a lot of our programming around the results of those. We also provide supportive services to patients, caregivers, healthcare providers and HR professionals via a number of channels. This includes our “Ask a Career Coach” message board, which provides access to a roster of professional coaches who offer their insight and custom responses to each individual that poses a question or scenario. We currently do have a career coach/HR professional who was a caregiver himself, so his insight is really valuable in those responses as well. We offer a resume review service, which allows patients and survivors to submit their resume and receive personalized, tailored feedback by one of our professional career coaches. We also open this service up to caregivers whose careers have been impacted by a loved one’s diagnosis. So it’s not initially offered for caregivers, but we do make exceptions on case by case basis, and we also offer one-on-one calls with staff members, typically me. We take pride in being accessible. And the opportunity for someone to pick up the phone and get a live person on the other end of it is – the importance of that is not lost on us. And we also offer this in both English and Spanish. We have some staff members that speak Spanish as well. And then our English and Spanish language websites offer a wealth of information. As I mentioned, it’s a ton of information on there. So on all the issues related to the world of work and cancer. This includes hundreds of informational articles. As I mentioned, our blog and news feed, people can also learn how to explain gaps on their resume, prep for an interview, download job search tools and a lot more. It’s also the touch point for accessing the library publications which I mentioned, which provide a tangible and easy to digest way to really deliver key information to patients, survivors, healthcare professionals, and caregivers as well. And just mentioning again, these are in English and Spanish, and can be ordered for free in hard copy or downloaded. And I do also want to note that we are working on expanding our content and offering for caregivers. And while much of the information on our website is currently geared towards patients and provided with more of a patient lens, a lot of it is really applicable to caregivers as well. Since, as I mentioned, some of the challenges can be very similar. And I do want to point out that we will be doing a “Balancing Work and Caregiving” webinar in November that I will be hosting. So if you want to hear from me again, there’s your chance. And I do just want to leave off with this… There’s something called a “Caregivers Bill of Rights”. There’s the link to it at the bottom of this slide. And while the challenges of caregiving can feel really great, this is a selection that really provides some valuable reminders and affirmations. I encourage people to take a look at it, keep a copy of it, print it out, and just sort of look at it when you’re starting to feel overwhelmed and guilty and stressed, and it can provide both that validation and justification for how you’re feeling when you really need to have that with you. Things can get heavy. So as Meagan mentioned, we will have time, I think, for questions if there are any, but if not, this is my contact information for anyone who wants to reach out, and I’m happy to answer any questions either through email or over the phone.

Meagan Lockhart 34:18
Fantastic. Thank you so much, Nicole, and when you said that your website has a wealth of information, that is an understatement. You could spend days on there and not see everything that that you’re looking for. So thank you so much for being here today and presenting your services. And next, we’ll have Amanda with Cocktails and Caregivers.

Amanda Clark 34:41
Thank you for having me. My name is Amanda, and I am the founder of Cocktails and Caregivers. I’ve been loving all your presentations. When my husband was diagnosed with colon cancer in 2011 he was 28. I was 28. I very vividly remember the nurse walking into the room and saying, “Are you his caregiver?” And kind of like looking up, like looking around for an old lady, you know, like, I know I’m way too hot to be a caregiver, and then realizing that it was actually this job that I had not applied for, that I very quickly was thrown into. I felt very underqualified for, and how utterly alone I felt because of that. There just were not other people out there like me or had gone through this, and the people that were, were going through completely different life experiences. And so I decided to kind of take that word ‘caregiver’, which I hated for a very long time, and embrace it and try to make caregiving cool again, and do exactly that. So like I mentioned, my name is Amanda, and this is my co founder, Mira. Mira was just 11 months old when her dad passed away from colon cancer in 2014, the shitty disease, as you know, and I had a moment after my husband passed, we had been sharing our journey, like so many of you do, as like a coping mechanism, and we started the blog, “Cocktails and Chemo” because we went from our martini cocktail dates to chemotherapy dates, and it just kind of transitioned in that way. And the more that we shared really authentically and vulnerably, the more that we started connecting with other caregivers that were just like us, and they’re like, man, we’re going through this too, and I’ve never met anybody else. And the little internet world started to feel smaller and smaller as people started following our blog. So when my husband died, I remember the day he died, and telling me, he’s like, “Man, we’ve really done something cool here, like, there’s something here”. And I kind of felt that as my calling, but I didn’t know what to do. I was like, “I don’t know how to solve the cancer problems. I don’t know how to do any of this, but I do feel like I can kind of tackle these issues that have faced me as a as a caregiver, and Joe was all in 100%”. And so everything we do is really in honor of him, but really also in honor of the invisible caregiver that’s fighting alongside them. So we’re constantly I making it up as we go. I vividly remember googling ‘how to start a nonprofit’, and a lot of our work has been just from a need and figuring out what to do from there. We offer three main things through our nonprofit. One of them is that we send care packages monthly. If someone is nominated on our website. It is my goal that they will receive something to us from us within 30 days. So it’s really that feeling of when you don’t know what to do, Cocktails and Caregivers does. Because we’ve all been in that situation where our friend is hurting, or they’re a caregiver, and I don’t really know what to do. It’s like, “let us do this”. You nominate them here, we’re going to send the love to them. We also do some events in person, which I have here, is like our caregiver essays. It’s about forming that connection. We have a place on our website where people can submit their stories and we share them, and we also host in-person events. So the events are really essential, where we can refill their cup with wine or whatever they may need. But really it’s about that that energy and telling them that they can’t give from an empty cup and allowing them that grace to do that. And then we have our grant programs, the ‘Our Tribe Grant Program’ helps people pay for childcare needs. Maybe you have someone that’s going through chemotherapy and you need to be in two places: home with a child and at chemotherapy. Let us help pay for your daycare, or a nanny, or sending your kids to camp for the summer so that they can feel like some sense of normalcy. We’ve gotten really creative with those grants throughout the years. We’re actually getting ready to have our 10 year anniversary this year of being an official nonprofit, which is wild to me, super crazy, but like so many of you had talked about, is just the patient-caregiver connection and a need that I really felt during that time was the financial burden. Let’s be honest. It’s, like, people are like, “What can I do? Can I bring you a lasagna?” And you’re like, “I really need $10,000 but yeah, that sounds great.” And that’s just, like, the transparent thing that we try to do. If we can find a way to fundraise and do what we can to take some of the burden off of caregivers, even if it is just one month of pain for their child care, or giving them a little cushion. That’s what we aim to do, because we know how important it is. Which leads me to our newest Grant Program, which is what I really wanted to make sure I talked about today. Our ‘Keeping Caregivers Close’ program is all about providing travel expenses for caregivers who are traveling with a patient who need to maybe stay at the hotel nearby, Uber back and forth, the plane tickets, they’re eating in the hospital where they like to charge you $14 a Starbucks, so that the caregiver can feel like they can go with them. And so it’s all about keeping the caregiver close, and while so often insurance can provide help with the patient, there’s not a lot of that help for the caregiver. They need to run to the grocery to pick up a few items: that’s where this new grant program comes in. I’m really excited about it. We just launched it at the top of this year, and have started giving grants away monthly. It’s an easy nomination process. We have our caregivers go online, and fill out the paperwork. We’ll have one of our volunteers check in with you, do a little mini background check. It’s nothing crazy, and then find the best way to meet that need. So a new grant program, if you have caregivers in your life that are looking for some of that, is something we’re really proud of and it’s really close to me. So just more about that: This is our first family. We actually were able to give a grant to the Rivera family. He actually has colon cancer, and they live in Chicago. It always makes me cry, huh? And this wife’s just, she’s doing it all, right? She’s a superhero, badass lady. And she’s just, she’s drained. They have this little boy, and they’ve got to get back and forth between Chicago and MD Anderson and the expenses of that. So I had her give me some of those rough numbers of what that looked like for her. And you guys, I’m not telling these caregivers that are on this call anything they don’t already know, but she was asking probably $7,000 per trip, and what that does to a family in a year and truly, we all know we’re giving so much more than an Uber ride a plane ticket. We’re giving hope, because in those moments when you feel like there’s a doctor somewhere that may have a second opinion or may have another trial, or may have something whether the end result gives us something different, I don’t know, but in those moments, hope is the greatest gift we can give. And so that’s where that some of the financial aid comes in. I threw in some pictures of some of our cute caregivers that we’ve helped, some of the events that we’ve posted, because I think they’re cute. Look at all those cute faces. But what is a caregiver? So for us, a caregiver is any unpaid loved one who is caring for someone who is sick, facing cancer, a disability. We’ve expanded a little outside of cancer, which was weird for me at first, because that is what I I know in my personal life. But I started connecting with all these other caregivers who didn’t have resources either, and at the root of what we knew, that invisible, lonely feeling was there. And so we’ve expanded, and that’s actually why we changed our name two years ago, from Cocktails and Chemo to Cocktails and Caregivers, so that we could create an inclusive place where any caregiver, mother, son, father could come in and hopefully find some of that connection in the resources there. So nothing you don’t already know, all the jobs that caregivers are doing, assisting with medication, coordinating medical appointments, doing freaking everything, cleaning, the therapy, counseling, emotional support, best friend, loved one, punching bag. Caregivers are doing it all, and it’s why we know that they’re so important to keep their mental health strong, so that they can be strong for their loved one. It is essential to the family unit. It is essential to our society. And I truly believe that. We host a luncheon every year in the Chicago suburbs, if anyone is close to that area. This is a photo from our last one, where we had caregivers from all over we hosted for a three course meal. We paid for them. Some of them drank too much wine, but they’re having a nice little time and a nice little respite moment. And we have gifts and raffles, and it really is like, I want them to come in and feel like it’s okay to say, like this is really hard, and I need a minute to just recharge, so we love our lunch. This is a look at the care boxes that we send. We also do some blowout parties. We sponsor families around Christmas, but this is just a look at some of the little gifts that we send to the caregivers who are nominated on our website. We also have a new partnership with Indiana University, the Simon Cancer Resource Center. I’m excited to be on this call with you, because I don’t have great ins at hospitals beyond my local hospitals, and we have created these caregiver survival kits. If you’ve ever found yourself all of a sudden in a hospital stay, you realize you have nothing that you need. So in these kits, you would have a toothbrush, some makeup, wipes, a phone charger, pens, a journal, just some small things. And we’ve been able to pack up 150 of these that are sitting at the IU Simon Cancer Resource Center, so that a nurse could bring it up to the room, or they could tell a caregiver, “Hey, go down to the resource center. There’s some things for you”. I’m looking to grow those partnerships with other hospitals, because I have the goods. I’ve packed the bags, now I just need to find people who will help me pass them out. I love a little call to action for all of you, if you know anywhere where we could get them in. Another response that we got from a caregiver that was in the hospital, and they received one of these care bags, just saying that it brought tears to her eyes, and it meant so much to her. So that might be happy sometimes, you don’t know, and so that felt good. I’m going to send this video out afterwards so that you guys can see it, but it’s just a little story about what we do, why we do it. Look how cute my little girl is. She’s 10, she’s big. She just shouldn’t like anymore, but she’s so sweet, and it’s just a special way for me to honor her dad and just kind of show her that when hard things happen, you have a choice, right, crusade or crumble, and sometimes that can feel really overwhelming. But if there’s anything that I can leave with a caregiver that’s on here today, I want you to know that while you have a sad story, you are not a sad story, and you have the power, and you have, you deserve to be cared for, and to take a moment just for you, and to say, “this is really freaking hard.” You’re allowed to that. And I hope that that you can hear that from me today and give yourself a little bit of grace. But this is our new grant program, you can look it up online. That was smart, how you guys put your websites at the end. I didn’t think about that, but we’re just at cocktailsandcaregivers.org and at the top it says, “I’m a caregiver”. You can click there if you want to nominate somebody, if you want to find out about our events. I am headquartered in Indianapolis, Indiana, but we are a national organization with a chapter in Florida and in the suburbs of Chicago. So that’s my spiel. I tried to be quick. Thank you guys, so much for having us and just for all the work that all these other organizations are doing.

Meagan Lockhart 43:23
That’s fantastic. Thank you so much for sharing your story, and then everything that you’ve done to help the caregivers going through something similar of what you’ve had to, so thank you so much for being here and sharing with us today.

Amanda Clark 45:51
Thanks for having me.

Meagan Lockhart 46:29
And I’ll have your website in our program at the end, posted on our website too, so we’ll be able to find you.

Amanda Clark 46:48
Thank you.

Meagan Lockhart 46:49
All right, and we have two more speakers for this afternoon. Next up, we have Anita with the Patient Advocate Foundation.

Anita Reynolds 46:57
I’m Anita Reynolds. I’m the Manager of Grassroots and Comunity Partnerships for National Patient Advocate Foundation, which is the advocacy affiliate of our sister organization, Patient Advocate Foundation. I’m going to share with you how together we can help patients and caregivers and really amplify your experiences, as well as partnering with other organizations across the United States. So like I said, we are the advocacy affiliate about PAF, and PAF provides free case management services to patients with cancer, chronic illnesses and life debiliting disease. Now, case management does not provide direct financial assistance. However, we do help patients navigate any insurance barriers, questions regarding understanding their insurance period, of finding local resources and national resources they may qualify for to help with their co-pay program. We also have a co-pay program with various diagnosis, one including the metastatic colorectal cancer, and we have a few financial aid grants in partnership with a few other organizations. And how PAF and MPF work together is, PAF helps one patient at a time, providing direct services and support. And then the scale is we have patient education and partnerships. We also are really big on data collection and analyzing patients’ experience and all that together with NPA, if we really raise that with patient advocacy and policy. It’s what we find out as patients ourselves, is that when we’re denied something, it’s because there’s a policy of it. How can we amplify that? How can we advocate for that? So that’s how NPF takes everything PAF does and moves it up on a policy side. So we are a nationwide organization, and so the data I’m providing is from our most recent Impact Report. So it’s for 2023. And as you can see, our highest population that we help is always the big cities in Florida, Texas, California and whatnot. But really, cancer and chronic illnesses is across the United States. So what we’re doing as an organization is we’re trying to really amplify and focus on these smaller communities, but these communities and towns that really don’t know about us and also don’t know about other organizations. So we’re trying to partner with other organizations to bring that presence to them to explain our case management services, and this is what we call our safety net ecosystem, is all of our departments together. So what case management focus is, is understanding health care services and medications, issues related to health insurance benefits and denials, financial concerns included any out of pocket expenses or paying their medications, transportation, nutritional needs, assisting with filling applications with a disability, and getting medical insurance coverage. Now, reducing financial burden, the way we do that, like they say to case management, does not provide direct financial assistance, but we look for local and regional organizations that they qualify for if they have any utility grants, transportation grants, food and wellness grants and that assistance. We help educate them with the ADA and FMLA rules and regulations, and I would love to connect with Cancer and Careers to see how we can further expand that with our case management team as well. We help patients and caregivers understand and even enroll in the appropriate insurance, and charity, and social programs, including social care disability. We’ve helped them with the appeals process. We help them step by step in educating them and helping them guide through them as well. Then with insurance navigation… Now, PAF will never tell a patient which insurance company to choose, but based on their diagnosis or income, we help guide them to pick the best insurance that best fits their needs, and if also they have any denials, we help the system with any insurance appeals. Now, who is eligible for these services, is anyone that has a confirmed diagnosis, or if they’re in surveillance for a health condition or getting tested for the condition. They have to be an active treatment, or at least including surveillance or follow up treatment. It must be a legal citizen, a resident of the United States and be receiving treatment in the US. Now, our co-pay relief program, they are on a first come first served basis, so I always encourage anyone to go on our website and to sign up to our listserv so that they know when the funds are open. Currently, there three ways in which a patient can can apply to the co-pay program: that’s a patient themselves or their caregivers applying for on behalf the patient, the providers and even the pharmacies. So if you guys want to share this with your doctor, saying, “Hey, I heard about this co-pay program”. In case there’s any other patients that we may benefit from it, they can apply on behalf of patients as well. When the application starts, as long as you provide and upload all the necessary documentation and complete the application, you will know by the end of the application whether or not you’re approved or denied so it’s instant eligibility. In addition to it, we do a six month look back. So if you’re just hearing about us today, and let’s say a colorectal cancer co-pay is open, and you apply, and at the end of the application, you’re approved. If you paid any co-pays, co-insurance, or even your insurance premiums for your diagnosis. If you can provide proof of it with receipts, or I’m showing that you’ve you’ve already paid it, we will reimburse you into the next award amount. This also goes, for example, the fund is closed today, and then next week it opens. And then you apply. You can also go back to to providing your receipts for reimbursement. Now, our patient education and national financial resource directory, and I like to do a live screen, so if you guys can see, can you guys see this page? I’m going to show you how we use / what we have, the National Financial Resource Directory, all of the resources that our case managers use, as well as our intake and everyone. We want it to be easily accessible to anyone and everyone, because we have two different types of patients and caregivers, those that say, “Can you just do it for me? I just can’t. You know, there’s just so much going on”. Completely understand. And then we have the type that says, “Just give me the information. I want to take control of it. I want to go through every process. But thank you for your help. I’ll call you when I need you.” Which is fun. And then also, let me add the third layer. There are organizations that just want to learn of other resources to share with their patients. So we created this, and it’s on our website. I’m going to say I have health insurance. I’m 27 to 45, I reside in Virginia, my medical diagnosis is cancer, and I’m looking for emotional support services. And this will narrow down all the resources that we know of, and I’m going to narrow it down to my area, if I want to, I can even narrow it down down to the type of cancer. So these are all the resources that we know of that we’ve vetted, and the options that you can select them all and either email it to yourself or print it. And what I hope is that these wonderful organizations that are on this call, if you don’t see yourself on here, we have a link on our website that you can add your organization on here as well. I do know Imerman Angels is on here, but I need to check on the other ones as well. This is a great resource to use as well. Now, co-pay program, you can always see when our funds are currently open or closed. And just because your colorectal cancer is closed doesn’t mean you may not have another diagnosis that we have. Examples, COVID-19. If you yourself as a caregiver or patient has had COVID-19 in the past six months and you need help paying with your co-insurance deductible, there’s a maximum board amount of $2,300 for that currently. And then, our Educational Resource Library. Now this is also created because of the two different types of patients and caregiver. And even organizations that we help, is that we wanted to provide all the educational resources that our case management uses, including topics on insurance benefits, insurance options, medical costs. Understanding Medicare, I can, first hand say, I don’t understand Medicare at all, but I had to learn Medicare because I have an elderly neighbor who’s a widow, and his daughters live in two different states, and every open enrollment, I go to our educational resources, I read up on Medicare, and I help my neighbor every single year go through the open enrollment process. Now he tells me, “Anita, I have insurance. I like it. It’s great. Can we just pick the same one?” And I tell them, “No, we can’t. Well, yes, we can, but I want to ensure that the insurance that you have and you like hasn’t changed this next enrollment year, to ensure that your health care is taken care of”. And he says, “Okay, do your thing”, and we’ll go through the process, but we’ve created our educational resources for that specifically, so that it can be used widely, not just for those who have cancer or chronic illnesses. Next, our Health Equity and Community Engagement – so what NPF really focuses on is patient-centered services, including telehealth, palliative care and psychological, social, psychosocial support, communication, important that prioritizes the needs of patients as well, ensuring that the access is affordable for patients and everyone specifically, and also navigating people to the safety net programs, not just always navigating patients to PAF, our co-pay program, but also ensuring that the patients are navigated to all the resources that they need.

Anita Reynolds 56:48
So when you saw the first map, you saw that we helped nationwide. Now, what we saw is that there was a gap across the country. In 2020 the CDC released their Social Vulnerability Index. So the SVI index, which looked at a couple of different scenarios across every county, and it basically rated counties against each other based on a couple of different things, like on transportation, and access to care, access to care, education and across that, we took their index and looked at our own data that we have, and we see, well, could it be a correlation that the information is just not available to them? And how can we go to these communities and share with them? Not only about PAF’s mission and the resources and NPAF’s of mission and resources, as well the resources and missions of other organizations that may benefit them. So as a phase one approach, we’ve identified 226 counties across 31 states, and it’s my job as the Grassroots and Community Partnership Manager’s to contact all of these counties and communities and tell them about organizations as well as our partnerships. So these are the statuses. The central themes of 15 variables we looked at was socioeconomic statuses, household composition, disability, race, ethnicity and language and housing, and transportation statuses. So those are the four central themes, and that’s how we got to our 226 counties. So what Patient Partners for Equity is, is a new program that PAF has launched, it is to exactly get all the resources to these communities. And the way I can best explain it is when my daughter asked me, “Well, Mom, what do you do for work?”. And how do you explain patient advocacy to someone in middle school? You don’t, it’s kind of it’s even difficult for me to explain it sometimes, but the way I explained it to her is, you go to school, you have a math teacher, a science teacher, PE teacher, and together, all these teachers encompass your education. Well, Patient Partners for Equity is, we know what PAF is really good at, and we know what NPF is really good at, but we want to also bring in the other organizations and what they’re really good at, and bring those resources to the patients so that together, we can have patient-centered care for the patients and their caregivers. So that’s what the focus on Patient Partner for Equity. And as of right now, these are the current 21 partners, and we are trying to expand this partnership. So if you know any organizations that you think that we should bring out to these communities, please let me know, and I would love to connect with them and partner with them. And here’s Esmeralda, a colon cancer patient that we assisted in case management. And specifically, what the case manager helped her do was doing the applications for financial assistance, and was actually able to successfully lower one of her monthly payments. And then she was so thankful that not only did we help her, guide her through everything, but at the end, when we closed her case, they sent her a summary of everyone they’ve contacted, everyone they emailed, and even sent her reminders, like, “we need this free application to finish it forward”. It included financial assistance or any other application she was going through. So that’s how we helped out Esmerelda and her family navigate health care. So thank you. And if you have any questions, please feel free to reach out to me. Thank you.

Meagan Lockhart 1:00:16
Thank you so much. Anita, and I know, as many mentioned, a lot of those tasks often fall to the caregiver, and the fact that you and your team can alleviate some of that weight and help them navigate the system in that way is super beneficial. So thank you very much. And the last presenter we have today is Mallory with the Cactus Cancer Society.

Mallory Casperson 1:00:42
Hi, everyone. I’m Mallory Casperson and I run an organization called Cactus Cancer Society. We’re a nonprofit that offers online support programs specifically to young adult cancer patients, survivors and caregivers. So really, anyone between the ages of 18 and 45 – you are our people. I myself am a two time cancer survivor, and was also very fortunate to serve as one of the primary caregivers to my mother during her cancer experience. We are a small and nimble team. We actually just hired employee number four, and then we have two part-time program coordinators. The whole team is made up of survivors, and a few of us have also been caregivers, and we live absolutely all over the country, so we pride ourselves on really understanding what it is that other young adults facing cancer, survivors, and caregivers are going through, and how best to get these survivors and caregivers connected and engaged in online programming. We also have a number of contractors who run a variety of programs. We really work hard to keep activities varied and unique and valuable for for everyone. When I was diagnosed the first time in 2011 I was 24 years old, and it took me two and a half years to meet another young survivor. I had already started my caregiving with my mom, and I definitely never met another young caregiver. So I felt really isolated and alone. I think a lot of people here on the call can connect with that idea. The survivor that I talked to actually lived in Australia, and we chatted on Skype, and talking to her was really life changing. So I ended up spending really the next year talking with hundreds of young survivors all over the world, and through those conversations, I really learned that regardless of where someone is diagnosed or treated, and this says survivors, but I know that it’s very, very true for caregivers as well, that we need connection to one another. We need concerns to be validated, and we really need a safe space to process what has happened. So I founded an organization, Cactus Cancer Society. We gained our non-profit status in 2015. I know we’ve heard this story already, today. We started as a blog. So I found friends and friends of friends to really write about everything young adult, cancer survivor, and caregiving that really came from a lifestyle perspective. So people wrote about infertility and dressing and layers at chemo and DIY projects that they were working on, and any caregiving tips or tricks that they had, and finding time to exercise while they were caregiving, and a whole lot more. And we started focusing on all of those lifestyle aspects of having having cancer or caregiving for someone with cancer, whether that person was a patient, a survivor, a caregiver, a pre-vivor or really any of the healthcare providers and family and friends who might also be along for the ride. And now we offer over 20 programs, so all are really geared towards young adults facing cancer, any diagnosis and any stage along the experience. And once again, that phrase that we used facing cancer, we really mean patients, survivors and caregivers. All of our programs are online. It makes them very accessible, really, regardless of where you’re located, how much free time you have, whether you’re living at home or you have a survivor with you who’s inpatient and sort of stuck in the hospital, all of our programs provide a safe space where young adults facing cancer can connect with one another and cope and really learn to thrive in an online community through creativity and expression. The programs offered happen via video chat, and so they they happen at scheduled times, and they give the survivors and caregivers that chance to be face to face with people, even though you are in your own home and you’re with people who totally understand what it’s like going through cancer as a young adult without having to go anywhere. Our programs are all free of charge, and because they’re online, we really welcome a very diverse group of young adult cancer patients, survivors and caregivers. So we see people from absolutely every state, rural, suburban, urban environments, a big spectrum across the LGBTQ community and more. And we run a bunch of different things. So I have a couple of slides that show program squares, but we run journaling workshops and art workshops. We actually send supply boxes to your home so that you have everything that you need to participate at the scheduled day and time. A goal setting, a book club. We have a program with Dr. Anne Katz, who actually takes anonymously submitted questions about sex and relationships and answers them. So I got ahead of myself. – We also have Lego workshops and creative writing programs, programs specifically for guys, and then a couple of sort of longer term programs where you’re with the same group of patient survivors and caregivers over eight weeks, and those are very cool because they create this very neat little community within this already niche and isolated group of people. And we have a lot more. I think one of the things that’s cool about us is that we have an ever-rotating set of programs. And because things are online, it’s easy to sign up for things and easy to try out new offerings. Signing up for programs is really easy if you go to our website, which I put in the chat. This is just an example. I chose a program, the story mapping program. On all of the program pages, there’ll be a button that says, sign up here. And then there should be a whole lot of information about the day and time and what you can expect from the program. If the program is full or if you’re not available for that specific program, but just want to hear when the next one is announced, you can click on the ‘sign up for email notifications’ button, and then that actually sends you to our email list where you can give us a little bit of information about yourself and specifically choose the programs that you’re interested in hearing about. So sometimes our programs fill within an hour of being announced, so being on the email list to be notified when any of the registrations launch is really the best way to hear about things in time to sign up. I think there are a couple of things that are unique about our programs. One, I mentioned it already, but they’re online, and they’re happening all the time, and we have a huge variety of things that you can sign up for. Programs are really focused on the creative coping side of things. But if you’re more visual and like to draw or doodle or paint, we have programs like that. If you want to write a little bit more, we have programs like that. If you want a combination of the two, we have programs like that as well. So there’s lots of different things that you can try. And then we also continually evaluate our programs using validated measures and more informal ones. So we use anonymous pre- and post- program surveys. We’ve published a number of abstracts at conferences over the last few years demonstrating the effectiveness of our programs and running psychosocial interventions online, and we’ve actually shown that our programs reduce feelings of anxiety, depression and psychological distress. I’m an engineer and researcher by training so I love data, and it’s really important to us to make sure that the programs are filling the need that we that we think they are, and they’re doing so in the best possible way. So those surveys also allow people the opportunity to give us some really honest anonymous feedback, which we definitely use to improve program offerings. I’ve gone really fast because I know that we’re going over, but this is my contact information, and like I said, absolutely everything is at our website, so definitely feel free to poke around and find something that might interest you.

Meagan Lockhart 1:09:28
Thank you so much, Mallory. Your workshops are so fun, and in addition to sharing with our carepartner community for all of our early onset caregivers, I’ll definitely post that in our early onset patient community as well. So thank you so much, and I want to apologize for all of our presenters this afternoon for going a little bit over time. When I was researching organizations to invite to this event today, I knew how absolutely fantastic the things that each and every one of you do, but despite spending many hours speaking with you in person, going through emails or just browsing your websites, you’ve blown me out of the water with how much really great, fantastic work you’re doing. So I really appreciate you taking the time to be with us this afternoon, and I will make sure the recording of this session gets posted on our website, as well as our PDF supplemental document for all of our current and future caregivers to browse and look at and hopefully you’ll be hearing from some of our members in the coming days, weeks, and possibly years. So thank you once again, and if anyone has any questions about the event today, please feel free to reach out to me at any time, and all of the contact information for all of the organizations represented today will be in that PDF supplemental guidebook that will be found on COLONTOWN University, hopefully sometime next week. Thank you all for coming.