Rayna Neises: 0:00

“If you think you’re too small to make a difference, try sleeping with a mosquito.” That’s the Dalai Lama. I love that quote when I think about advocacy because I think we all feel small. What difference does it make? What can I do to make an impact on the world? Hi, this is Raina Neises, your host of A season of caring Podcast, where there’s hope for living, loving, and caring with no regrets. And today I have Carlos Olivas III with me and we’re going to be talking about advocacy. I really enjoyed my conversation with Usha Tewari on podcast 103 where she is been an advocate in many different roles, actually at the legislative level for years. But her mom’s diagnosis of Alzheimer’s really helped her focus, her passion to advocating for Alzheimer’s Disease. And with that, then I thought of Carlos right away. And Carlos has been a guest on our podcast before. He’s currently a primary caregiver for his 80-year-old dad who’s living with Alzheimer’s. He is the father of a beautiful and talented daughter. Carlos is an entrepreneur. Who’s passionate about learning. He lived in Yuba City, California, and was raised in Sacramento where he returned to be able to take care of his dad. In 2016, life changed forever. And that’s when he returned to his childhood home to become the primary caregiver for his dad. His dad is a Navy submarine veteran and is currently living with Geriatric Alzheimer’s Disease. And this caregiving season has enabled Carlos to connect, encourage, and empathize with caregivers around the world. It’s inspired him to advocate for more elder health policy, as well as the practice of self-care for caregivers. Additionally, he’s archiving and documenting his dad’s progression through his vast assortment of art, which is included COVID doodles and hopes that the dementia community will embrace the artists, living with this devastating disorder and allow them to display their talents and bring this disease to the forefront. Welcome, Carlos, I’m excited to have you here today.

Carlos Olivas: 1:54

Thank you, Rayna, for having me. I’m excited to be here. And it’s a pleasure.

Rayna Neises: 1:59

Advocacy is such a tricky subject, I think, because of that feeling so little, you know, we feel like we, how can we really make a difference? So what has caused you to choose to invest your time in advocating for elder care? And even on behalf of the Alzheimer’s association?

Carlos Olivas: 2:17

Well, great question. I guess. Advocating for elder care I guess this fell into my lap with the diagnosis of my dad’s Alzheimer’s disease. And struck a chord, advocating for some way that you love and making sure that they have serving their best interests. And that finding out that not everybody’s in the same boat, my dad took measures early on to make sure that he was cared for and in case of something like this. I feel it, you know, I need to carry on his legacy, you know, reinforces dignity and. that needs to be shared with others. Advocating for elder care policy is something that is not really in the forefront in mainstream media. Our healthcare system in many ways is broken and we need to reinforce it. We need to look after our elders with dignity and love.

Rayna Neises: 3:26

Such a good point. I think that. There’s just a, I don’t know if there’s an assumption that we’re just going to take care of them. I don’t know what people think is going to happen we get old, we have to a voice for them they don’t have the same ability to have their voice heard that they did at one point in their life. And I think is important to realize that we’re all going to get there and all the things that we can do to help this generation are going to also benefit us. And so getting that conversation out there and having more understanding of what’s not working, I think is really important. I recently attended an advocacy workshop for the Alzheimer’s Association in Kansas. I had no idea. That there’s actually no recourse in assisted living if they choose to kick you out. So, in Kansas, because each assisted living is actually governed by state policy, not federal. Federal policy governs nursing homes, so skilled care, and in skilled care, you have to be given at least 30 days. There’s an appeal process. There’s all these things that are involved but in assisted living there’s not. And in Kansas right now, there’s a law that is working its way through the legislation. called Charlie’s Law. And his widow actually shared with us why she’s petitioned the legislature to get something on the books. She and her husband were living in an assisted care. He was in the Alzheimer’s side and staffing became an issue and the owners decided to close the Alzheimer’s assisted living units. And without notice they were just told they needed to move him within the next day. For him, the move was traumatic and literally his disease progressed overnight, and he passed away within nine days of the move. And she was in total shock that they could just lose their home like that. And that she had no choice. There was no appeal process. There was nothing in place that she could have stopped the move. Obviously, she didn’t expect the move to have the consequence that it did. And that’s not always the case for every person, but it was eye-opening to realize that in elder care, there’s no rights when you’re in assisted living. I didn’t know that. And obviously, most people don’t. And so that’s why advocacy is so important for us to become aware of things we did not know as well as to bring about change and to try to really influence change. So, Carlos, how do you, how do you try to influence change? What things do you do?

Carlos Olivas: 6:15

Well, I have to change myself. It might change my thinking. It’s a mindset to understand happening and how we can kind of speak out with policymakers to have a conversation. And share the information and resources that we need to see and review that may need to be changed. And those institutions and policies that are already in place need to be reviewed. Adjusted a little bit because of the climate because of cultural differences and generational kind of practices that we’ve, you know, most of, many of us like myself and our family practiced. It’s not uncommon to have a multi-generational living in the same house, caring for an elder. And yeah, that’s not going to change. just, we need to give people the information and educational resources to assist them with these end-of-life kind of elder challenges that we have.

Rayna Neises: 7:28

When I was doing my research that there’s been in the Congress, the federal at the federal level, the ability to have a tax credit of $3,000 if you’re a primary caregiver, but it hasn’t gotten to the floor. It hasn’t gotten to the point of even being voted on. And So, I think a lot of these things can be really helpful for families to be aware of, to contact their officials that represent them and say, Hey, let’s, let’s do something about this. Let’s actually give us credit for what we’re doing. And we are spending our time and energy and our own finances to help care for our loved ones, whether they be in the home or not. We aren’t necessarily getting it all the way to the finish line. So, I think it helps us to become aware of some things that are available or in-process and have it become available but have already been a great thought. Sometimes we’re thinking we should get credit for that just like you get credit for, caring for your dependent children. But we didn’t realize that that was even a bill that’s already been worked out and it’s in process it’s just not moving forward.

Carlos Olivas: 8:35

Right. And I feel that just having the conversation and sending a letter to your representative in your area or your Senator, and just saying, look, I support this and you are representing me. And this would directly help me or somebody I know. And that will make a world of a difference, especially when people are having financial burdens of caring for loved one. And being the unpaid caregiver. I don’t have the statistics, but there’s a lot of unpaid caregivers providing support for loved one and having a hard time with it. There’s financial difficulties right now. And the pandemic didn’t help very much. But it’s bringing that to the forefront right now and having a conversation about it and we need to apply some leverage to the policymakers in Washington DC to say, this is going to get bigger. Caregiving is not going to go away and, you know, just providing a little assistance for us and resources will go a long way.

Rayna Neises: 9:48

And like you mentioned your dad prepared. And so, you’re in a place where you have funds that make it easier for you on your personal, but you’re spending your time. You’ve been there and not working, caring for him. And so, it impacts your long-term future as well. I again in was in the same situation my dad prepared had long-term care insurance and things that helped us to be able to provide the care for him, but it definitely has an impact and not every family is in that situation. So not only might the parents not have the finances, but others that are caring for them are losing out on opportunities to have income as well. It’s a very complex situation with lots of challenges, I think sharing our own personal stories have a significant impact. Have you had an opportunity to share your story with lawmakers in your area?

Carlos Olivas: 10:40

Yeah, we have a state legislative kind of forum able to, you know, reach out to different Congress people and share my story. We do go on the federal level, I belong to a advocacy group who has meetings with our local Congresswoman Matsui. and we share our stories with her. We tell her what’s difficult, you know, and what other people are going through. I share a lot of information from my caregiver support groups locally. Give them the pulse of what’s going on with caregivers and how you know, a lot of them are, are having financial hardships just, hardships with finding resources and education to, support them. It’s, hard kind of emphasize with With other and to share that with lawmakers. So I feel that passionate about it and then there’s a purpose behind it.

Rayna Neises: 11:48

Definitely. Caregiving is one of the hardest things we will ever do. And so we don’t ever want someone else to have to experience it, but you know, that those of us that have experienced it, being able to be that voice and really share with those that haven’t been there that are impacting decisions a national level, local level it’s such an important thing because our lives, our stories, our loved ones make an impact. When just the statistics don’t. So I love that you’ve been able to participate in that. what would you say are some of your most important concerns that you’re advocating for at this point?

Carlos Olivas: 12:27

That one’s a hard one. Well, last year, the Alzheimer’s Association released a facts and figures and a report that outlined disparities with the under served, people of color and women, and it reflected demographics across the board of this nation that there is some pitfalls in regards to education and resources and funding. And that kind of, yeah, I guess tugs at the heart, you know, cause there’s other people that look just like me that you know, are going through some hardships and they don’t know what. Or they don’t know where to go. They don’t know who to call. And I think that’s why it’s very important that the Alzheimer’s Association has their one 800 number 1 802 7 2 3 900. We can give them a call 24/7 it’s free and can answer questions that people have, especially if they’re in conflict or maybe depressed or just need some answers or information about what they’re going through. And that’s how I got involved. I called them up one night when I was struggling with my dad and, got some resources and information, myself into a support group. Essentially led me to advocating for elder care and caregivers. But I feel very passionate that we need to really reach out to other people. I feel a little bit of a financial burden for my long-term future for my retirement and stuff like that, but there’s other people that don’t have that motivation, that goal to see that through. They’re just living day to day we need to include them in the conversation and in find ways to communicate with them.

Rayna Neises: 14:30

Yeah, definitely. And I think one of the things too is they’re also underrepresented in trials and in research, and we’re trying to get a handle on what is happening in the brain with Alzheimer’s and other dementia. And we need a good representation of all people of what’s happening so that we can really make some progress in finding the cure. And so think it’s so important for us to get that education out there like you said, because that allows people to understand more. We have to find all communities realizing that this is a disease that’s impacting them. Even the term old timer’s disease, you hear that. I think there’s such a mentality in some cultures this is just what it’s like to get old and Alzheimer’s is not normal aging. So really getting that message out is so important. I think advocacy definitely helps us do that. Helps us to educate, get those resources and then research is such an important piece of that as well. And the federal government has a great impact on that as well, what research is available? What’s approved. funding has been increased significantly over the last few years, it definitely is an area that we have to continue to speak out about and that includes types. I know Carlos and I share that passion for Alzheimer’s because of our family connections, but I know that our listeners are not all in that journey. Might be dealing with caring for a loved one that has MS or cancer or other ailments and all of that major illnesses seem to have an association. I noticed the national Ms. Society actually has activists that advocate for federal state and local levels to increase MS research access to quality care, disability, rights, long-term services, and supports and awareness and organizational support. So I think each organization has that and as a caregiver, Your time and energy is limited. So it’s probably not the season for you to be the most outspoken, but I both respect you, Carlos and Usah that I spoke with on our last podcast of how you’ve used, the time that you have now, even as a caregiver, to be a voice for your loved one and a voice, really for us as caregivers, because all of these bills benefit the caregiver, as well as the elder that’s being cared for.

Carlos Olivas: 16:54

Yeah, I agree. Research is a mission that’s by the Alzheimer’s association. It’s really reaching out and highlighting the current and an approved an emerging therapies to find a cure or a treatment for this devastating disease. Cognitive decline, it needs to be addressed. It’s, widely known across board that women will get it much more than men, people of color you know, especially native Americans and African-Americans in the Hispanic, Latino communities acquire memory challenges along the way. And we need to reinforce that and make sure that they’re spoken for, and that they’re included in these trials. So it’s really important and I feel advocacy is one way to reach out and communicate.

Rayna Neises: 17:53

And communicate in a way that is really going to get the ear of the people who are actually have the resources to help. I think that’s really important piece as well. I think the numbers are almost two times, as likely to develop the disease if you’re a person of color, I think that does that sound correct to you?

Carlos Olivas: 18:11

Yeah. Yeah. You know, the numbers and data stuff they’re fleeting for me because they’re, they’re, they’re staggering. We need to be there to kind of be that voice and share this information out there. It’s hard enough caring for a loved one, and then trying to advocate at the same time, but it needs to be done. Speak from the heart, share this passion and this purpose to make sure that the policymakers are aware that other people need this as well.

Rayna Neises: 18:45

Yeah, older black Americans are nearly twice as likely to have a neurodegenerative disease or other dementias Hispanic Americans are about 1.5 is likely compared to older white Americans. And again, the women, the number with women as well as twice as likely. So those numbers are just they’re mind blowing and we have to have a voice. Research is where we’re going to have the biggest impact and the purse strings are in Washington, DC so all of that equals advocacy. And again, no matter what your loved one is suffering from those opportunities to be an advocate for research in those areas are available to you as well. I will link some of those things on our show notes page, be able to kind of connect you to some things that I’ve found that were actually, working in advocacy to help with beyond just research everything, dealing with that. But I think it’s so important for us to think about this topic. Be realistic with our time and energy that we can invest but realize that our voice matters.

Carlos Olivas: 19:52

Right, right. And I’m not sure if it’s it’s appropriate to mention that the Alzheimer’s has what it was called the Alzheimer’s Impact Movement. AIM and you can text them and they’ll send you notifications via your phone. So you can advocate with your local legislation and promote your, I guess, support for bills that are coming up in Congress so they can vote get the, get the message across.

Rayna Neises: 20:21

That’s great.

Carlos Olivas: 20:21

sure if that’s something we can link into our, into your, into the bio or.

Rayna Neises: 20:26

Yeah, definitely. I think all of those resources are helpful and I do feel like most associations are getting to a point where they’re making it really easy for us to be able to send information to our representatives and let them know where we stand. So I really appreciate just the fact that it doesn’t take writing a whole new letter yourself, but a lot of times they give you, a structure. They definitely give you the information that you need to let the lawmakers know what you’re supporting and why. So thanks for that, Carlos. We’ll definitely put that in our show notes page as well. Well, our time has gone already. I really appreciate your time and opportunity to be here today. Carlos, any closing thoughts?

Carlos Olivas: 21:04

Learning about Alzheimer’s as really changed trajectory of my own personal life. So, you know, take with a grain of salt, be kind yourself, love yourself first, give yourself oxygen. I think isn’t, Teepa Snow Say that? Give yourself oxygen. So you can provide a positive approach to care for your loved one living with Alzheimer’s Dementia.

Rayna Neises: 21:33

And all caregivers, we come right back to it every time we have to learn self-care, without caring for you there’s nothing left to care for them. Thank you again for being here today and just a reminder, A Season of Caring Podcast is created for the encouragement of family caregivers. If you have financial, legal or medical questions, be sure to consult your local professionals and take heart in your season of caring.

*Transcript is an actual recount of the live conversation