Rayna Neises: 0:01

Giving up is not an option or in my vocabulary. Advocating and fighting for what I believe in is in my family DNA. My dementia advocacy journey will be lifelong in honor of my mom. And those patiently waiting for a cure.” That is Usha Tewari our guests today. I had the honor of interviewing Usha at the end of last year, 2021. Just a matter of a few weeks before her mother’s passing from late stage Alzheimer’s. Usha’s story is one that I was so amazed by, her ability to work full-time and single-handedly care for her mom with very little support just blew me away, so I hope you enjoy this interview today. Welcome to A Season of Caring Podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises, your host and today I’m excited to introduce you to special guest ,Usha Tewari. Usha was born and raised in Orlando, Florida, and is a first-generation Indian American. Miss Tewari has worked over 14 years in government and understands what it takes to advocate for individuals. She works full-time and is the sole caregiver to her mom diagnosed with dementia. Miss Tewari is a passionate advocate and congressional ambassador, recently, she was co-chair for the Orlando Walk to End Alzheimer’s and is the serving on the committee for a Ride to End Alz. You can follow her on her Instagram page, the Indian Caregiver, where she shares her advocacy and caregiving journey and Twitter @ushwari. I’m so excited to have you here today. Thank you so much for joining us.

Usha Tewari: 1:38

Thank you, Rayna. It’s really a pleasure to connect with you on LinkedIn and to be on your podcast. Thank you for inviting me.

Rayna Neises: 1:45

I cannot imagine first of all, what you were doing, caring for your mom full time and working full time. My journey with both of my parents with Alzheimer’s looked really different than yours, as far as having sibling support and obviously when my mom was diagnosed my dad was her primary caregiver. We had a little bit more of a team to be able to come around us. So I am so amazed at your tenacity and your ability to just step in and do what needs to be done for your mom. Share with us a little bit about what that’s like being her primary caregiver.

Usha Tewari: 2:17

Well, thank you. I know that, you know, because I’m our primary caregiver week, it took some time for us to connect. You know, unfortunately she was in the hospital but, it’s been a very rewarding experience. It’s been a journey that has a lot of bumps along the way, and I feel like that it has made me a lot stronger. And it’s also given me a lot of confidence in myself to tackle situations and to learn more about dementia. It is like a lot of things in life, it is very stressful. I stress out every little thing. If she doesn’t eat, if she doesn’t drink water. If she sleeps too much. But I think, you know, with time I’ve learned that this is part of the normal dementia process. It is a challenge. I work full-time, I manage a department of 11 to 13 individuals. So they need my attention as well. But I’m somehow balancing it. I try to take care of myself as well. Whether it’s going for a walk or bicycling, but I think one thing that I’ve learned is I’m a very high strung individual where things need to get done. And I’ve learned the, this past year where I need to step back and go a little bit easier on myself and, you know, even for me to take a walk rather than 45 minutes or an hour, if I can get in 20 minutes that I should be satisfied with that. And I’m at least, you know, helping myself So I can better take care of my mom..

Rayna Neises: 3:43

So many great things you just said there, because self-care is totally a learned process I think. We can hear a lot about it and there are lots of great tips and I give them all the time, but we have to find what works for ourselves. And the number one self-care tip I have is you have to give yourself grace. And it sounds like through the years, you’re learning how to do that.

Usha Tewari: 4:03

Yes, it’s really difficult because, you know, that’s the advice everyone says, you need to take time for yourself. You know, other caregivers like you, who are on this journey, understand it’s really difficult. We don’t know if we’re going to be able to sleep at night or, you know, for me during my lunch schedule now I have to feed my mom by hand. So, I have to eat and type in between work. So it’s just, you know, learning to adapt and to accept it and just, realize, you know, it’s, it’s, there’s another day to start all over.

Rayna Neises: 4:34

And the hard thing with dementia and Alzheimer’s is that there are no two days that are the same, much less two hours that are the same. So that can be such a challenge as well, especially with the Type A go getter type personality. We are used to juggling a lot of things and we’re used to telling where they all go and Alzheimer’s, doesn’t allow us to do any of that.

Usha Tewari: 4:55

No, we have to even have to take several steps back.

Rayna Neises: 4:58

Definitely. Well, I know one of the big things that you have really stepped into in this journey because of your mom’s diagnosis is advocacy. Share with us a little bit about how you have been an advocate for dementia and Alzheimer’s in the legislative branch of things.

Usha Tewari: 5:16

So, it turns out that I’ve worked for elected officials, it’s been about over 14 years at the Federal Level. I worked for local United States Senator in Florida, and I really have the passion to help people understand, to navigate them through challenges and resources. They don’t realize that they have access to. So I believe it, it started there. And when my mom was diagnosed with dementia, when I was working in the United States Senate, I kind of started to use those resources because I didn’t understand it. And I figured that, for someone like me, who works doesn’t understand or how to navigate it, or, you know, what it is, how to go about doing it. I can just imagine, hundreds of thousands of individuals, you know, out there. So I think, once my mom had the diagnosis, I was determined to help not only myself, but understand, but those who are affected by it. And I I’m very passionate about policy and I think working as a congressional case worker to see how to, whether it be for individuals, with their student loans, how, you know, if they can to make them more affordable or, other challenges, whether it would be with, transportation or justice to kind of break it. So I reached out to the Alzheimer’s Association and became a volunteer. And under that, they’ve got a very strong advocacy program where they work, where every year, except during COVID over 12 of us would travel to Washington, DC and advocate on Capitol Hill. So it kind of used that passion to share my story with the congressional leaders. So that way to paint a picture that, this disease is not part of the aging process. This is a real disease that not only impacts caregivers and patients cognitively the way neurologically it alters, you know, whether it’s your mobility or the way you talk or eat, but it’s also a healthcare tsunami. You know, with the costs that are associated with it medically because it’s not a clear cut symptom. A lot of physicians spend time, racking their heads, you know, what, what to do. If it’s actually something internally going on or if it’s something, you know, cognitively and from a financial point of view, for caregivers, I you know, save my money to travel and for my future, for retirement. And suddenly, I realized that I’m having to use that money for my caregiving expenses. So, it’s very difficult to find funds for respite care, you know, to give caregivers like us a break. So that’s the reason I figured, I’m living and breathing it and I worked in that arena. I need to take that experience and translate it and help others and make a difference. I know that sounds a lot of people talk about making a difference, but you know, the Alzheimer’s Advocates are really a strong unit where we do make a difference. I have been involved with advocacy, I believe for maybe four years now. And when they see us in Capitol Hill wearing purple, they know what they have to do. And it’s interesting because more and more lawmakers or even congressional staffers are becoming open that I have a grandmother, I have a mother, I have a neighbor who suffering from it. So it’s becoming more real and that more attention is being paid to what we’re going through. And that’s, what’s needed.

Rayna Neises: 8:37

Definitely, I volunteer with the Alzheimer’s association as a community educator. And so I’m very much aware of the benefits of that organization and how the advocacy part was one thing I wasn’t aware of before I became a volunteer. So I love that it was an area that you were passionate about and knowledgeable about, but you have been able to then turn it and use it to benefit your mom and all of us that are walking this journey. And like you said, I think it’s amazing to me 1906 is when. Dr. Alzheimer’s found Alzheimer’s Disease and the research and the drug development has been so far behind. I have the unfortunate experience of having my mom diagnosed in 1986 and we just lost my dad three years ago. And the medications that were available were the same. And that was mind boggling to me that there hadn’t been more progression in that, but I know that the funding has been significantly increased in research recently because of advocacy.

Usha Tewari: 9:43

Yeah. And social media too, has played a played a large role in that as well.

Rayna Neises: 9:48

As caregivers, we do have to share our stories in order for people to understand what it really is like, because so many times, first of all, I find people don’t relate to the term caregiver. I know I didn’t in the beginning of my journey. Realizing that I was a daughter who was just stepping in to take care of my loved ones and just doing what needed to be done was kind of all it felt like, but really realizing that we’re caregivers and that we have to put that hat on to really embrace all that, that includes, which also includes caring for ourselves. I think it’s so important. And I love that you are doing that by sharing with others, your journey in social media and other avenues, by being able to share what it’s like to work full-time and caregive. What would you say is one of the biggest challenges you mentioned, respite care. What other challenges do you face trying to do that juggle with both?

Usha Tewari: 10:40

Besides not being enough hours in the day. It’s, you know, the COVID to me has been a blessing to a certain extent because it’s allowed me to work from home for an extended period of time. And I’m more aware of my mom’s cognitive state. And if anything, medically goes on I’m able to monitor it rather than be away for over eight hours and come home at nighttime and like, okay, how long was this going on and get, answers? Oh, I didn’t know. I didn’t see that. So, you know, I would say that, it has been challenging. I know for a lot of, of individuals COVID, but fortunately for me, in a way it’s been a blessing that I’ve been able to work from home. Obviously the challenge, my mom’s condition is rapidly deteriorating. So before I would have situations where she would use her walker and there would be mobility and balance issues. So there would be the fear of her falling. So I was constantly getting up, making sure that she was stable. She had her walker with her where she’s walking and now just in the past, three weeks it’s been, she can’t feed herself. She can’t even drink water on her own. I have to hold it for her. So in between of me doing, having meetings or being on the work computer, I step away for a brief second. I have to have a lot of patients because she’s prone to silent aspiration. So, you know, take care of her. So it’s become, it’s becoming a lot more delicate. And I didn’t realize that the challenges that I thought I experienced maybe last year or the year before are really, you know, significant challenges. Compared to several years ago, and it’s just requiring a lot more patients and paying attention and juggling you know, with her, work. And I’m also having to realize too, If I need to take a day off that I just, I need to do it. I’ve accumulated a lot of time. And now is the time I’m not in a situation where I can run myself ragged. Like I can keep going, going, going that, you know, I’m neither good at work nor for my mom, nor for myself. That’s, another thing that I’ve come to terms accepting that I need to take time off for myself when my body tells me when I mentally and physically exhausted.

Rayna Neises: 12:56

It’s so important that we learn to pay attention to those things. And as you are talking, you’re kind of talking about the journey itself of caregiving and how in each stage we feel like this is the worst it could be. Right? But unfortunately, as the time progresses, the needs changed significantly. And it sounds like you’re really in a point where those needs are really looking different. But I do appreciate you mentioning, being able to work from home, because I do think that that can be such a big difference and it feels like now most employers are realizing that there are some of this that can be juggled, that we can work from home and still meet the needs that need to happen. So I think that’s important. What would you say helps keep you going as a caregiver with all of these things that are going on in your life? What really gives you joy and helps you to keep going as well as what support have you built up around yourself?

Usha Tewari: 13:47

I think a lot of my support has been on social media. And because the social media caregiving community understands what you’re going through and fortunately, I’ve got, one or two very close friends who are constantly checking up? How’s, your mom comes and helps, but a lot of people don’t understand what you’re going through. You know, there’ll be like call me if you need help. And then when I reach out, I don’t hear from them. So you don’t have a caregiver, you become even more and more sensitive and vulnerable. So I find a lot of solace in that, you know, social media realm for caregiving, because I reached out to one individual who takes care of her grandmother, who is an under hospice care. And when I had. So go through that decision process with my mom home hospice, I reached out to her and I think after talking to her, she broke it down in simplistic terms rather than a physician or medical team talking to me that I found, more comfort in that. And I think also just knowing that you use your voice to help others, you know, who are scared to talk about it, or don’t know where to look for resources. I’ve had quite a few individuals reach out to me and say, you know, thank you for sharing your story. It’s given me courage. Or I didn’t know the Alzheimer’s 800 number, they do this or you know, that type of thing. So that’s what makes me happy at the end of the day and keeps me going on this journey, that is mentally and physically exhausting that, it does, it never stopped.

Rayna Neises: 15:14

I think that’s so wise too. And in that realizing again, I think our world got smaller whenever COVID happened because we were stuck at home. And so we had to find ways to reach out. I know I have the privilege of being able to lead a support group during the week that started right as COVID started. And so the opportunity to really meet weekly with this group of caregivers and just share our journeys. And encourage each other, no matter what the day looks like can be such a blessing. And I do think social media is allowing us to do that as well to really find those connections to people that we can really relate to and have those tough conversations when our peers or others around us haven’t been there and they don’t get it.. I’m glad that you’re finding that. And I’m glad that you’re offering that as well. I love on your Instagram that, you share lots of pictures of your mom and, and of what’s happening with you guys. And I think, again, that just brings a lot of comfort to others that are walking the journey wherever they are, whether it be in the early stages or like me in the aftercare giving seasons.

Usha Tewari: 16:15

And I think also you’re gonna to add to that, you know, you spoke about caregiver groups when I was working prior to COVID. I couldn’t join any caregiver groups because a lot of them are during work hours. So, they would say all these resources, but I said, what good are these resources? If I’m working and then you have it after hours, but then who’s going to take care of my mom, you know, because they weren’t close by. So there were a lot of challenges. So it’s nice how it’s become a lot tighter. And there’s also, you know, a virtual community where, caregivers have access literally 24/7

Rayna Neises: 16:46

Such a good point. And I think even as a person who tries to offer support to caregivers, it is hard to find that good time because when you are working and you’re younger, like you are, then you have to be working. And so your day is taken up with that. And then your evening. That’s the only time you have with your mom. So it is hard to even pull away for an hour during those times. So I think it can be challenging to find something that works, but there are so many different choices. I’m always encouraging our listeners to keep looking and find a good fit because we do need support. I know part of this passion has been launch this global virtual summit that you’re looking at doing so tell us a little bit about Let’s Talk Dementia and Caregiving that’s coming up in February.

Usha Tewari: 17:31

So it turns out just back in June, I had taken some time off about a week off and some people had reached out to me on Instagram Messenger and wanted to connect with me. And I connected with this individual, so Shanthi, and she lives in Vancouver, Canada, and she was talking about, what she does and her vision for her nonprofit. And she happens to be Sri Lankan. I connected with her on that ground, my parents are from India and I said, you know, it really frustrates me a lot that there are a lot of misconceptions. I know in a lot of communities, but especially, in the south Asian community about dementia. Because they think that it is a mental health illness or they think that there is a, you take a medicine and. This disease is going to go away with time, kind of like, lowering your blood pressure. And, with my mom, a lot of people, I mean, she has no social life, no one calls her, no one asks about her because they don’t know how to approach the situation. So I said, let’s work together. We have this thing in common and let’s, break down the stereotypes and provide resources. To individuals that, that way if they feel embarrassed, they know where to access it online and, openly talk about the challenges that we have. Especially as a South Asian community and help others recognize what the symptoms are, whether it be early on or at whatever stage. So that way they can help their left loved one or even, you know, help themselves. And, gradually break down the stigmas that are associated with this disease, because I feel like by sharing our personal stories, it will give others courage to talk about it. I know I have a Facebook page called the Indian Caregiver and I had some individuals reach out to me who were Indian and said thank you, I really don’t talk about it. And I’m scared to talk about it, but you’ve given me the courage and that’s the reason, you know, they called me or even for the Alzheimer’s Walk in Orlando, I had quite a few South Asian friends who came and walked and showed their support. By that, it starts at the grassroots level where you’re gradually, helping and educating others.

Rayna Neises: 19:39

I love that because I do think it’s so important. It is easier for us to learn from people that we really relate with. And so the more voices we have out there talking about our experiences, the more connections that we can find that person that really can support us. With this global event, tell me a little bit of what people can expect when they sign up to be a part of that.

Usha Tewari: 20:00

So they basically are going to, have access to resources and hear personal stories. We have an individual who will be moderating the event, he himself as a caregiver to his mother with Parkinson’s Dementia. And he brought her from India. There’s another individual from England who is diagnosed with dementia and he’s an advocate and we’ve got some individuals who are froma Scientific area who are talking about the disease, what to look for. Basically, what are the signs, having a Frank conversation, what are the challenges, how we’ve overcome it, here are the resources. We’ve tried to touch a little of everything from everywhere, but I think the power in this would be the personal stories to let people know that they’re not alone, that this is not a mental health, this is nothing to be ashamed about, just, you know, to empower them and just have a Frank discussion and hopefully, make it interactive via chat. But I don’t want it to end on February 19th. We want to continue the dialogue on a monthly basis and incorporate those individuals and kind of give them a safe place, where they can ask questions. And if, you know, if we, they can’t be answered, we can guide them, to the appropriate resources. Whether it be giving them tips or for them to call an 800 number where they live or to connect them, like you said, with a caregiver group. Because like I said, myself, despite being, you know, if it’s savvier with resources, I it’s, it’s a completely different world and it can be scary when you’re navigating it on.

Rayna Neises: 21:28

For sure. Well, I’m excited about the opportunity for people to connect with you again. It’s, it’s been great to have you here. Tell them a little bit about where they can follow you and stay connected and definitely where they can find out more about your event.

Usha Tewari: 21:42

Yes. So I am active. I try to share my advocacy and share caregiving journey when I can. I’m on my Instagram account called the Indian Caregiver. I’m also on Twitter, on Twitter. I post a lot of legislators stuff. So if you’re into that realm to see what’s going on with Alzheimer’s Dementia Caregiving legislation, my Twitter handle is U S H w a R I and I also have a Facebook account that’s linked to my Instagram called The Indian Caregiver. And that’s where I’ve created the event page, where people can learn more about the event as well as access resources.

Rayna Neises: 22:19

Well, thank you again for being here today and thank you for all that you’re doing on our behalf in advocacy, as well as just all that you’re doing to care for your mom. She’s very blessed to have you, and I’m sure that this is a really precious time for the two of you to be journeying together through this disease and this just the season of.

Usha Tewari: 22:38

Thank you so much. Rayna is really a pleasure to talk to you. And I look forward to us continuing the conversation in 2022, because there’s a lot of ground to cover. And, people like us who have shared these experiences, it gives us the ability to empower others. So thank you!.

Rayna Neises: 22:55

Definitely just to reminder, A Season of Caring Podcast was created for the encouragement of family caregivers. If you have legal, financial, or medical questions, be sure to consult your local professionals and take heart in your season of caring.