Dementia Care for Mom as an IHSS Provider

Alma Valencia
Alma Valencia

Alma Valencia talks about caring for her mom and the process of becoming an IHSS provider.

Listen on:
Share this post

Podcast Transcript

March 30, 2023
Note: This transcript was computer generated and might contain errors.

Alma Valencia: Okay. Well, my name is Alma Valencia. My mom was diagnosed with Alzheimer's in 2017, but then, we figured out that she actually has FTD rental, temporal dementia. So Mom. was living with my aunt for four years and I helped Care for her part-time, and I was working full-time. And then I switched over my mom, moved in with us three years ago during the pandemic or a little bit before the pandemic. And she's been with us ever since. But she moved in here with my family. It's my husband, my little girl who's gonna 11 and my son, who's 24. So I have a multi-generational household with my little one in middle school, my son in college.

Alma Valencia:  And then, you know, my husband working and I have I'm fortunate enough to work at home through IHSS in home supportive services Mom, qualifies for that. But essentially in in having her qualify for that, I had to strip her of everything. So we're just like at bare minimum here. so, so yeah. That's a little bit about us.

Katie Wilkinson: Yeah, you have a full house.

Alma Valencia: I have a full house. Yeah, and…

Katie Wilkinson:  Yeah.

Alma Valencia: so I I try to be as creative and as resourceful as possible. so, My background is in fashion design. That was my career. I have I had experience with caregiving with my grandmother and my aunt who had Alzheimer's but at a distance, you know, And I always felt like I wanted to do something more, like, I always kind of felt like I had this lingering feeling that the responsibility would fall on me to be a caregiver eventually. and, I resisted because of the finances, I'm like, How am I going to do it? Like How can I care for somebody? You know, And can't that responsibility fall on somebody else, that's older. And that's like retired and

Alma Valencia:  Doesn't have like their whole life ahead of them. I'm not that they don't have a whole life ahead of them, but, you know, Um, that they're kind of a little more settled. and, and yeah, because of the pandemic, it just like kind of like fell on me to just take over. So another factors of course, you know, but find us, This was always what was holding me back. And it is still a struggle now.

Katie Wilkinson: Yeah, I mean that's that's a huge piece of of caregiving, you know, and sometimes it's a choice and sometimes it's not that, you know, making it making it work, can you talk a little bit about

How are you funding your mom’s care?

Katie Wilkinson:  Yeah, just like the financial piece of caregiving like How are you guys funding? Your mom's care and it sounds like you took a step back from work, like just what you know what's how are you guys navigating the financial piece of caring for your mom?

Alma Valencia: So since I don't work full time anymore, I'm like, Okay, where can I? Where can I pull resources from? So like I mentioned I qualified or I have her qualify for IHSS. I'm like all right. And that whole process started really slow. I only qualified for like 40 hours. And that's like, $300 a month. And I'm like, How can I survive on this? So I had to go through all the steps and it took a while And now, I am. With IHSS you get paid minimum wage. So they're like, all right, that's not gonna cover everything. so, I started Mom's page and so I had just I'm like I have to grow and create awareness and just see who else is out there because immediately

Alma Valencia:  When Mom was diagnosed, I'm like, Okay, I'm gonna ask for doctor for help. You know, Doctor you know what resources do I have? So they would send me to like these seminars at the hospital. And again, all I would walk away with was like pamphlets. I'm like Okay, this isn't enough. I need more. So I I went over to social media like help, you know, and I started getting in contact with other people.


Alma Valencia:  And and slowly, but surely people. Have. Provided other creative ways to come up with some funds.

Alma Valencia:  but still like with inflation and everything, you know, it's like It's like you're constantly like trying to catch up. I mean, and then like recently, My mom fell. And she hurt her teeth. And I'm like, how am I going to cover? Her dental care. If I haven't even covered my dental care, you know. So all of those like surprise, you know, things that people don't consider it's like You know. Where, where do you come up with the money?

Katie Wilkinson: I think I mean, I think that's the question that everyone, you know, you're asking it, I guess, you know, in this like real-time example your mom heard her teeth and and needs. Dental care. How how are you? You know, affording dental care. Are you affording? Dental care.

Alma Valencia:  Well, luckily, I am I have insurance through my my husband so for myself. I'm okay. I'm covered. for Mom, I am going to have to pull I met, I'm gonna have to go to either UCLA to like a student dental. Facility and see if they can help when a pool from Medicaid. And well, here in California, it's medical. And see how they can help. And it's just like doing my research, like, really digging and seeing how I can get the support to help. Mom, I may not be able to Provider with everything that she needs, but at least enough where her dental hygiene is. Is. Where she doesn't have an infection, or anything like that. And it's just

Alma Valencia:  Pretty, I just have to cover the basics so that she's comfortable and she's not in any pain. You know, if she's missing teeth. She's gonna have to miss some teeth, you know? Because already twice, she's falling, and she's like broken, both of her cap. So I'm like, all right, I need to get Need to get creative and figure out what she really needs so that she can be able to chew and just like maintenance.

Process of becoming an In-Home Supportive Services (IHSS) provider

Katie Wilkinson: yeah, I mean you mentioned it before but I love how resourceful you are, you know, looking for That, you know, less expensive ways to do things or subsidies or, you know, figuring out how to make it work. And I know you, you know, you've qualified for HSS and can you talk a little bit about that process? Like what? How did you get started? What's the process like to applying and qualify? Etc, Someone that doesn't know anything about it. You know what was sort of step one?

Alma Valencia: So, I know a few people that qualify for IHSS and they were telling me, Oh, you're never gonna qualify. I'm like, okay well don't tell me, never And one thing about me and let's keep trying, I'm gonna keep trying like

Alma Valencia:  so I I went to to the offices and I researched, And I got the application done. And, as I mentioned, initially, they only gave me a few hours because they're like well considering your mom's condition, she really doesn't need You know, a lot of hours, you know, she's still like very mobile, she's still, she can still talk when she when I first signed her up for it. She was very, very chatty and she was you couldn't even tell that she had dementia. um, and I'm like, No, she really needs it and of course, to try to convince someone like All right, I will go through the motions. I will jump through the hoops. And get her what she needs. Um, and the whole process took me about two years to get done. and, and,

Alma Valencia:  Because of the pandemic. And I explained to them like, Okay, this is my situation. Um, I care for my mom completely. From showers to feeding constant supervision 24/7. She is an exit seeker. She cannot be left alone. so, once they saw all of that or they I listed all of that then they're like okay then we need a doctor's note, we need everything to back that up medication all of that and I just laid it all out for them. And then they were able to give me more hours and give me the support that I needed. But not until then I had to go through all the steps and it still took a good six months. So, a lot of people get discouraged when they


Alma Valencia:  They start applying for IHSS because they're like well this is impossible but There is. There is a method too madness. There it, I mean there are different things, different stages that you have to go through. And because I wasn't, you know, we were in a pandemic. I had the time we were here so I'm like, okay, I will do all the paperwork and do everything that I need to to get things going.

A lot of people get discouraged when they start applying for IHSS. It just takes time. And persistence. You just have to keep jumping through the hoops. I moved some finances around so that Mom could qualify. Ultimately, if I'm not going to work in order to take care of her, I have to get creative to figure out what’s best for Mom & sustainable for the rest of my family.

Katie Wilkinson: Yeah, so it sounds like persistence was key in making that happen. And is there anything, you know, of course. Well, so I see the benefit of the pandemic, that's not entirely accurate, but you have the benefit of time, I guess. But is there anything you would have done differently? Now that you've been through the process? You know, if you could start over, is there anything you would have done to that? Might have made it go faster or more seamlessly?

Alma Valencia: Um, no. No, it just takes time, it takes time. And as you mentioned persistence, you just have to keep going and keep Just going through jumping through all the hoops that they have, you go through because the resources are there, but it is it, it is difficult, you know, and And I had to move some finances around for her. so that she could qualify, so that helped me because I'm like, ultimately If I'm not gonna be able to work and I have to take care of her, I have to get creative and figure out what is best for Mom. and then, and then take it a step further and be like, okay, Now, I have to get creative and figure out what is sustainable for the rest of my family.

Alma Valencia:  You know, because my little girls in middle school, she has needs. My son is in college, I have parents to take care of. So all of that, you know, and like I have to like look at the big picture and then for myself too, I still have to take care of myself. And my needs my medical needs my Mental health needs, you know, to like step away. I may not be able to get a vacation anytime soon, but at least moments where I can like step away from the caregiving, Process.

Katie Wilkinson: Yeah, I mean, that's, that's so important. We hear it all the time, right? Like you, you have to take care of you first in order to give good care. To your mom to your family, you know, to everyone around you.

Alma Valencia:  Yeah.

Katie Wilkinson: And you mentioned that you you had to move some of your mom's money around in order to qualify for IHSS are comfortable talking about just like what that means. What did you What did you do? How did you move it? What were the, you know, qualification requirements?

Alma Valencia: Well, I had to sell my mom's house. so, So she she doesn't own anything. At all. She has no assets. She has no car. She has you know, no bills that was one thing that I'm like, Mom, you have, when she was still able to understand and before her aphasia and her her dementia progressed, I would always tell her Mom, you don't have any bills to worry about, you're like debt free, you know, so I always wanted her to have that peace of mind and So she doesn't have to worry about it. However, she doesn't have any assets to her name. so, so that's why she was able to qualify for

Alma Valencia: Stay aid. Mm-hmm. We're a lot of people come,…

Katie Wilkinson: Yeah.

Alma Valencia: you know, come across that challenge where they have. um, if they have a home, or if they have what you call it, Can't think of the word. Um, well if they have other assets, if it does become an issue and And all it takes is I just creativity of like maybe somebody like taking on those responsibilities or moving. Moving the funds to somebody else's name where the person can become a conservator. I am my mom's.

Alma Valencia:  I am my mom's conservator. So I took over all that. so,

Katie Wilkinson: Um, yeah, I mean you've done you've done so much leg work to make this possible for you and your family. And since you've been caring for your mom full time and you know what's been like the most rewarding and what's been the most challenging part of being a full-time caregiver

@joingivers Alma talks on the Cost of Carinb pod about qualifying for IHSS to take care of her mom who lives with dementia. #ihss #inhomesupportiveservices #fundingcare #care #caregiving #familycaregiver #dementia #dementiacaregiving #dementiacare ♬ original sound - Givers • Caregiver Support


What are the most rewarding & most challenging parts of being a caregiver for your mom?

Alma Valencia:  Let's go with the good stuff. The most rewarding time with my family. I the time that I have, you know, to pick up my little one from school. To hang out and have coffee with my son, that's priceless.

Alma Valencia:  Do. All right, now, the bad stuff.

Alma Valencia: The Sun Downing challenge is with my mom. And just trying to navigate the dementia and everything that it entails. it just it just takes a certain person and just patience. To go through it. And I pray every day that I am. I mean, I I consider myself a very, very patient person and I enjoy a lot. But yeah, it's very tiring. It is very tiring. and, But again, I I am constantly like chasing silver. Linings and looking at the good and like, all the time that I Am I have to be here at home to cook to be here for my family, in case of any emergency, I'm the one that they call.

Alma Valencia:  And and I'm able to be there for other family members you know in case they need me. And so that is very rewarding to me because I'm able to help and I'm able to constantly get back. so, That's a win for me.

Katie Wilkinson: Yeah, I mean, yeah. You obviously are a silver, linings kind of person and you know what? You are experiencing with. Your mom is really challenging and to be able to see the glass half full or the silver lining in. That is really important. And have you always been That way? Or is that like a mindset shift that's come in the past couple years. and by way of, you know, positive thinking,

Alma Valencia: Definitely, it has become that way. Just changing the mindset. before I was so like career driven, and very focused on Um, you know, going up a corporate ladder.

Alma Valencia:  That. I always deep dive into whatever I'm doing, you know. So now I've just shifted my mindset of like, okay, That was me back then. And now I just really have to focus on the positive and And at the end of the day that's all that really matters you know. So so yeah there has been a switch you know, where I'm like I am going to completely take over this caregiving role. and just You know, and just give back to my family and give back to the community as much as I can and help out. Whoever needs help, you know, because there's a lot of us, there's so many of us and and I and as I mentioned before, I'm like, I knew that it would it would fall on me, it would it would come back to me in some way, you know, I

Alma Valencia:  I reached, I've had recent conversations with former former co-workers or they would tell me they told me they're like, you know, you would mention this before that you weren't, you would end up taking care of your family. But you hesitated and I'm like, Yeah, I was scared. I didn't know how to like how to go forward and, you know, but, At the end of the day, I mean you just have to, you just have to do it, you know, and just have to jump in and you know take care of your loved ones as best as you can. And just constantly be resourceful constantly like look for new ways, you know, And there are other trailblazers that have gone down that path that you have to reach out to and be like, Okay, how did you do it? You know, there are so many people that have already gone down this journey, you know, and just constantly reach out to them.

Alma Valencia:  You know where we're not alone, none of us are alone in this. And we don't have to be alone. We don't have to suffer in silence.

Katie Wilkinson: Yeah, I think that's a good reminder. I think sometimes caregiving can feel really lonely, but to your point, there's a huge community of people. I mean, especially on social and who are sharing their experience and expertise and just like, you know, listening ear which I think is really special community. And I guess now that you've like jumped in will not now it's been a while, but, you know, now that you've jumped in, you know, two feet, you're all the way in caregiving, how has this experience, you know, impacted or affected, your thoughts of spending and saving and just thoughts of the future, you know, for you and your family financially.

How has caregiving impacted your thoughts of the future?


Alma Valencia:  Well. I feel like, you know, Mom's dementia is going to be here. Mom's gonna be here for a while. Mom is still very young and very, very active. So I'm like, all right, I need to either create a business or, or

Alma Valencia:  Yeah, create a business and just figure out like, how we can make this even more positive and just grow from this. because, Dementia runs in our family. I my grandmother had Alzheimer's by grandma. My aunt had Alzheimer's, an uncle has Parkinson's. There were 12 siblings in my mom's family. so, It runs in the family. So I'm like, all right, so nobody wants to talk about this. I'm gonna talk about this and we are going to build something out of this, you know? And and create, you know, something that will help all of us and hopefully, financially, you know, where we can, we can, maybe it'll start with us. My little family and it'll grow with.

Alma Valencia:  My extended family, my cousins or like you know, close friends and stuff and we can just create something especially in the Latino family and Latino community. which is which dimensions like, you know, we don't speak of it, you know, I'm sure another culture as well. but it's very, very prevalent in our culture. that we just like, we just Just, you know hide everything conceal, they don't show it. And I think we need to correct that. Because they are still. They are still our loved ones and we they are still part of the family. So we just have to like create some kind of inclusion. and still create like this, this like fortress, you know, of just like

Alma Valencia:  helping one another, you know, and make a stronger. So those are my future plans.

Katie Wilkinson: Yeah, I mean like you just mentioned, you know, we don't talk about it like it's there's obviously you have a huge family, you know, but sort of unspoken has that changed in the past couple years. Like Are you guys more open about talking about dementia or cognitive decline or health in general? You know, or is it still kind of like hush hush. Just keep it in your house.

Alma Valencia:  Major. Hush-hush. Nobody talks about it.

Alma Valencia:  Luckily, I mean not luckily and With the announcement of Bruce Willis. now, they're like, Oh And I make the connection. I'm like, you know what, Bruce Willis is dealing with. That's what we're dealing with and like oh so they're curious. But they still want to talk about, you know. so, or they're just like, well, you know, we're just gonna have to caregiver and that's just, you know, What we have to do, I'm like all right. Yes, we it's gonna happen. It's not a matter of if it's a matter of when So I'm like, let's just plan for it, you know, let's, let's figure out what How We Can Financially Support One Another, You know, whether we create like, we create a pot or something of money or just like, create some source of fund.

Alma Valencia:  I just haven't figured that out yet.

Katie Wilkinson: Yeah. Have you I what you just said you haven't figured it out but I guess, you know, have you In your years thinking about this. Have you thought about like tools or You know, anything that could make it easier? Then you know, it's hard to sit down with family and say like Okay let's talk about hard stuff but you know are there ways that you thought about that might help facilitate making this easier amongst family. Maybe the answer is No, you just said, you're not sure, but you know, I'm just curious. What, what's been floating around in your brain?

Alma Valencia: um, the conversations that I've had with my family is more prevention.

Alma Valencia:  Because they asked like how did your mom get it? How can we prevent it? So, that's, that's pretty much where the conversation just like, Like dies there. You know, I can't quite get past that like All right, so when when it happens, what are we gonna do?

Alma Valencia: I think it's just too hard for them to like comprehend. so, Yeah,…


Katie Wilkinson: Yeah, that's a…

Alma Valencia: it's not worth.

Katie Wilkinson: That's a lot for you to shoulder. You know, to be caring for your mom and have your family. Not really Understand it or you know like feeling uncomfortable talking about it. That's a lot for you to to carry, you know, in your four walls with just your immediate family.

Alma Valencia: Yeah.

What do you know now that you wish you knew at the beginning of your caregiving journey?

Katie Wilkinson:  I guess, you know. You're several years into caregiving. What do you What do you know now that you wish you knew at the beginning?

Alma Valencia:  Um, What I know now.

Alma Valencia: I think for, for us, Forgiveness. just forgive like letting go of what what happened with with Mom or like a few years before like Before her diagnosis it was just so crazy. Like there was just so much going on like every day it was like, you didn't know what like what was gonna come around the corner.

Alma Valencia:  so I just wish that we would have like forgiven ourselves instead of like, Spent so much time with back and forth. I wish we would just like gotten straight to the like. All right, something's wrong, let's fix it. Instead of like oh something's wrong, let's just ignore it, you know? And it just like continued and continued and continue. if I could go back, I would just like have a dress, it sooner. Not that it would have like changed. My my mom's situation too much because it was already bound to happen. But it would have, I would have crossed, I would, of course, corrected some things.

Alma Valencia:  And maybe even financially maybe not having to sell my mom's house. You know, that is one of my biggest regrets. but I had to, but yeah.

Katie Wilkinson: Yeah, you're doing the best the best you can with what you have. If you.

Alma Valencia:  Yeah.

What is your top tip for other family caregivers?

Katie Wilkinson: Top tip for other family, caregivers.

Alma Valencia: I'm sorry, you broke up really What was the question?

Katie Wilkinson:  Oh sorry, based off of. Yeah. Based off of what you just shared or not, maybe something entirely different. What is your top tip for other family? Caregivers?

Alma Valencia:  top tip for family, Other family givers, um, we we all all say this and it's like and it's so truecreate your village, create your village, find your people, Um, because that is the only way that you can. Keep going. I always check in on social media. I have certain friends that, you know, I always tap into and just constantly we just constantly motivate each other. And and just keep going, but I just wish that we could just like continue to share this like, extend this love with everybody else because it's such a beautiful community. You know and we all like release and even like when one of us is having a really bad day like we just all support each other so so beautifully. and so,

Alma Valencia:  I wish I had that. Years ago. You know, I've owned I've recently had it like in the past two years. I wish I would have had it like, you know, when Mom was first diagnosed, Because I was kind of writing solo.

Katie Wilkinson: Yeah, what a difference that would have made to have, you know, more support when you especially at the beginning when you're like, What do I do. So and if people are looking for you and…

Alma Valencia:  Yeah.

Katie Wilkinson: want to follow along you and your mom's story, and your family story online, where can they find you?

Alma Valencia:  At Mom has dementia. On Instagram or on Tiktok. I pull up.

Katie Wilkinson:  Awesome. Yeah. We'll We'll be sure to tag you so people can find you and Alma. Thank you so much for you know your time and sharing about your family's story and and what it's been like for you over the last couple years.

Alma Valencia: Oh, well, thank you so much for inviting me.

Katie Wilkinson: Yeah. Yeah,…

Alma Valencia: I really appreciate it.