The Age Guide: Perspectives on the Aging Journey

Caregiving with Compassion: A Daughter's Story

• AgeGuide • Season 1 • Episode 8

Share episode

Welcome to the first episode in our new series on Caregivers. We want to shine a light on the commitment and dedication of the more than 44 million family caregivers who take care of loved ones, providing 4.7 million dollars’ worth of care every year.  A family caregiver is defined as an individual who cares for a loved one with a short-term or long-term disability or illness. Also known as an informal or unpaid caregiver, they provide invaluable care to those who need some degree of ongoing assistance with everyday tasks on a regular basis.

As you listen to these conversations, we hope the experiences of our guests resonate and help you recognize your own caregiver needs. Be sure to reach out to AgeGuide and our funded partners to access resources and supports to help you on your caregiver journey. 

Our first guest is Jennifer Agne, a caregiver for her mother and the administrator of Lilac Senior Living, a unique alternative housing solution for assisted living. 

Facebook: facebook.com/AgeGuide
Twitter: twitter.com/AgeGuide
Instagram: instagram.com/theageguidepodcast
Podcast: ageguide.org/the-age-guide-podcast
Website: ageguide.org

SPEAKER_00:

Hello and welcome to The Age Guide, perspectives on the aging journey. We are here to be your personal age guide and enhance your quality of life on the road ahead. Welcome to the first episode in our new series on caregivers. We want to shine a light on the commitment and dedication of more than 44 million family caregivers who take care of loved ones, providing$4.7 million worth of care every year. A family caregiver is defined as an individual who cares for a loved one with short-term or long-term disability or illness, also known as an informal or unpaid caregiver. They provide invaluable care, to those who need some degree of ongoing assistance with everyday tasks on a regular basis. As you listen to these conversations, we hope the experiences of our guests resonate with you and help you recognize your own caregiver needs. Be sure to reach out to Age Guide and our funded partners to access resources and supports to help you on your caregiver journey. Our first guest is Jennifer Agni, a caregiver for her mother and the administrator of Lilac Senior Living, a unique alternative housing solution for assisted living. Let's listen in as she tells her story.

SPEAKER_02:

Well, welcome, Jennifer. We're so happy to have you with us today for our podcast. We have talked to you before. You're a good friend of Age Guide. We worked with you before, and we know you're a very busy woman with lots going on and appreciate your time today. I know you're a caregiver for your mom. Can you tell us how old is she?

SPEAKER_01:

Mom is 77 and going to be 78 next week.

SPEAKER_02:

Oh, it's almost her birthday. Yeah. Happy birthday to

SPEAKER_01:

mom. And where does she live right now? She lives with me in my home along with my two boys and two dogs. Makes an interesting mix.

SPEAKER_02:

It's a busy household.

SPEAKER_01:

Yeah, she's lived with me for the last six years. So I've been a full-time employed person with an elderly parent at home and a caregiver coming in during the days. And two kids of your own that you were taking care of as well. Yeah, at that time I had four at home. Four at home. So it was a busy house. The busy house, though, did help her and her recovery. Oh, I bet. Just the normal activities of being in a home environment.

UNKNOWN:

Sure.

SPEAKER_01:

Having a lot going on, being able to offer her to help out with certain things, doing the dishes, that kind of thing. Keeping her busy and interacting. Yeah, exactly. You know, reacclimating her to what would be a normal home environment really helped with that recovery.

SPEAKER_02:

Yeah. Yeah,

SPEAKER_01:

that sounds like that

SPEAKER_02:

would be really good for her. And so now she's been living with you for about six years. What are her care needs at this point?

SPEAKER_01:

So with dementia, as we got over the first hurdle of her kind of coming back to not her norm but a different kind of norm, she did need assistance with cooking she wouldn't be able to do on her own, making meals. Anyone with dementia, they start losing the ability to identify with being hungry, remembering if they ate, medications. picking out clothes, personal hygiene, wearing the same type of clothes five days in a row. So those are some of the things that you initially start working through. She has been regressing, getting worse in the last year and a half. Now she's starting to lose her words. She's still physically able to do everything on her own, but certain things I have to watch more for her. So I'm picking out her clothes every morning I'm making sure that she's eating three times a day I'm bringing her things to drink you can't ask them you just have to bring it and if it's there hey we're sitting down eating lunch right now here's lunch you know

SPEAKER_02:

yeah so if it's there and right in front of her otherwise she wouldn't think to ask and to say can I have a snack I'm getting hungry I haven't had anything to drink for four hours I need something she's not going to ask

SPEAKER_01:

she needs guidance and direction with just about everything. If we walk into the kitchen, I have to tell her, go ahead and sit at the table. And then I bring her breakfast. If we're getting in the car, go ahead and get in the car.

SPEAKER_02:

Otherwise, what happens? She's just standing there

SPEAKER_01:

waiting for direction. She's just standing there waiting or copies me. Okay. So if I... Put gym shoes on, she'll go change and put her gym shoes on. If I put my hair up, then she will go change and put her hair up. If I take my hair down, she will take hers down. Like she will not walk in front of me. She will only walk behind me so she can see where she's going. She's really looking for guidance. Every step of the way. Right. And it's hard to sometimes equate that because of the fact that she can get dressed on her own. She can be independent. She does feed herself. She can have conversations. Everybody meets her and loves her dearly. So some of these needs are not apparent unless you're spending the time and around her okay considerably right

SPEAKER_02:

so that's why it's really a wonderful thing that she can be at home and in the community with you because you understand her so much but it is also very challenging i'm sure having her with you constantly and having someone following you around i mean you don't think about everything you do and having somebody repeating it and you're kind of modeling behavior for her all day long that has to get exhausting after a while uh

SPEAKER_01:

It is, it is. It does get more mentally taxing after a while than necessarily physically taxing. It's almost like having a... two-year-old with you. So you have to allocate time to get them up, get them ready, get them dressed, pick out their clothes, make their breakfast, have them eat it. You know, that's a process that you have to make time for and you have to schedule around it. Just like going in the grocery store. You know, when you have an adult with you, you don't anticipate that and you're not thinking, I'm going to run in, get what I need and get out in 15 minutes. Well, you have to plan No, this is still going to take 30 minutes. So I think those are some of the challenges that you have to work around and keep in your mind because you don't have somehow when you have a toddler, it's a lot easier. You already know things are going to take you a really long time when you're taking care of an adult. It's not an immediate thing. You have to really stop and think sometimes about how you're planning your day. You have to plan and try and have those other supports. So if you want some time away. want to go out to dinner. For myself, I tried to build in my schedule time that I know I still can take. So for an example, if I know I've got to get her up into her group day, I will wake up an hour earlier so I can have my coffee, read my book, start out and have some quiet time. And then the same at night. Okay, nine o'clock, let's get ready for bed so that I I can have that downtime after she's settled. So it's

SPEAKER_02:

really good advice for other caregivers as to how to take care of yourself and make sure you have a little time for yourself.

SPEAKER_01:

You absolutely do. And you have to give yourself the grace to be okay with taking that time and also to plan accordingly because it, The frustration level, I think, for a lot of caregivers come into play when they're in a hurry. They don't have time. They've got to get in and out. They've got to, you know, do all the normal things that we do day in, day out to run a home, to go to work, you know, to do any of those tasks. You have to really plan around the fact that you have somebody else with you that you have to think through. You have to, you know, time-wise plan accordingly and be present, right? You know, it's not like with your toddler, they entertain themselves. You know, with my mom, I have to be very mindful of, am I paying enough attention? Am I being present with her? Does she have something to do? Truthfully, left to her own, she will stand and stare at me. Wait for you to give her direction. And wait. Yes. So it's hard. From that regard, to be really mindful and try and manage your household things you need to do around making sure that your loved one is still... Stimulated, yeah. Keeping her engaged and busy, giving

SPEAKER_02:

her quality things to do. Right.

SPEAKER_01:

Because at her point, she is looking for that guidance on every single thing, including where do I go? Should I sit? Should I sit here? What should I be doing?

SPEAKER_02:

And I'm sure you also feel that tension of trying to provide those enriching kind of activities because you know that you're thinking the dementia gets worse if she's just sitting there and she's not really occupied with anything. So then there's this constant pressure to keep her busy and to have things for her to do.

SPEAKER_01:

Finding things that, so in our house, she has her, her domain is her room and she has her little activities that she futzes with and she'll play with her jewelry and, you know, so she can have her own time. Um, But not always. Right. So you do. You have that caregiver guilt over trying to get the dishes done. I'm trying to get dinner going. And, you know, where is she? What is she doing? Is she occupied? Is she not? Right. So you... Definitely that plays on. I think any caregiver has that balance and has that trying to figure out how do I manage that and then not feel bad if they are sitting and it's okay to let them have time. to themselves. My mom loves word search. So she'll be happy and content to sit with word search books and do that. So there's a window of opportunity for me to be doing other things. So it's just a matter of finding that balance, finding what you can have for them to be able to do on their own so that you have that time to go and do what you need to do and just running a household or getting yourself ready to go to work. It

SPEAKER_02:

sounds like you've done a really good job of kind of building a support system for yourself to help you with this. And I know it doesn't solve all your problems by any means, but you've got her in some adult day programs and some other activities, right? I

SPEAKER_01:

do. So she goes to her adult day center one day a week. And she really does enjoy it. It was a challenge for her to go more than that because, of course, well, where are you going to be? Well, why am I going here? Well, I don't need a babysitter. You know, we get into that whole conversation. One day, as we call it, you know, her group. Her group is a good name for it. One day a week, yeah, she calls it her group. And I say, yeah, you've got your group today. Those are her friends

SPEAKER_02:

and it's her

SPEAKER_01:

place. Yeah, and that works. So just having that one day to be able to have her, it's important for her to have time away from me as well so the more that she's mimicking me I will call it that's basically what it is it I don't think it's helpful for her to be around me just all the time. Right. She can kind

SPEAKER_02:

of find herself a little bit when she's away from you.

SPEAKER_01:

Yeah. And just being around other people, I think she needs to find her way. Now, obviously, she's in a safe environment where they're directing activities. But again, I know that she's there all day. They're doing stuff all day long. That's entertainment that I can't possibly provide her pretty much 24 seven days. All week long. Wow. Except that time

SPEAKER_02:

where she's with her group. Otherwise, you're the caregiver full time.

SPEAKER_01:

Yep. One of my sisters has her over on Sundays from 5 to 8.30 for dinner, which is very nice. More so for my mom. Just, again, to have her out and away from me. Interacting with other people

SPEAKER_02:

who are

SPEAKER_01:

not you.

SPEAKER_02:

Yes. And see a different environment.

SPEAKER_01:

That's

SPEAKER_02:

good that at least you have that little bit of respite too, but it sounds like a pretty full-time intensive job. It

SPEAKER_01:

is. And I think that all caregivers probably go through the struggle of, you know, it's almost like a job, right? So you have to think for someone, you have to take care of them, but then you're still a daughter or a son or, you know, whatever that relationship is. So you still... Right. That's a really good point, too, about your different roles, not only in your own life, but

SPEAKER_02:

also in your own life. where you're kind of in that sandwich generation, or I've heard somebody call it the panini generation, because sandwich is too gentle. And it's really a lot more intense than a sandwich. It's more of a pressure of a panini. So not only that for yourself, but also your role in her life changes. And you're like you said, you're still her daughter. She's still your mom. And you want to be able to maintain that as much as possible for both of you.

SPEAKER_01:

Even the caregivers that start out just doing a few things, then it grows and it grows and the needs change, like you said. And you might still have your full-time job and then you're going to moms or you have your parent move in with you and you have a caregiver during the day. And somebody might say, well, you're not the caregiver. You have someone coming in. But honestly, when that personally leaves at six o'clock, now you are the caregiver and that is a job that is a job in and of itself so that's still a part-time job right and when people haven't been in that role as a caregiver I think it's hard for them to identify how much of it is it's the physical it's the mental it's you know the back and forth of caregiver guilt am I doing the right things am I giving enough time but yet I still have to do all these other activities so and no matter what you're still

SPEAKER_02:

like the organized and the planner of their lives. Even if you're hiring somebody to come in for some hours a day or even most of the day, you're still the one who's generally responsible and has to plan all of the medical appointments, make sure medications are all set and phone calls. Tax returns. Right. There's so much involved in caring for somebody and that's all caregiver role.

SPEAKER_01:

Yeah, exactly. So even if you're not the, you know, nine to five caregiver, you still are, it is still a whole role. So having some support is absolutely tremendously helpful. But I think that important for caregivers, especially when I say, give yourself some grace because you may not realize all of the things that you do, but it's still, it takes a toll. And it is a huge time commitment. Absolutely. Yeah. Yeah.

SPEAKER_02:

It sounds like you've learned a lot through this journey and that you have a lot to share with people. I think someday you're going to have to write a book or have your own podcast for sure. Just to share all of this stuff that you've learned. And I know that you are putting some of it to use right now because you have a home, an assisted living home. Can you tell us a little bit about Lilac

SPEAKER_01:

House? Sure. So we opened this assisted living home. It's in a regular residence. Our home is for four to five people. And it's in a neighborhood, in a community? It's in a normal neighborhood. It's in a normal house. So all the residents have their own rooms. They can bring in their furniture. We can provide furniture. They can hang things on the walls. They can have their TV. Make it their own. Yeah, absolutely. So we have 24-7 caregivers. We are licensed through the state as an assisted living facility. So we follow all the same guidelines, rules, regulations as the larger facilities do, only this is home, and it's meant to be home. And part of the motivation behind this is that at some point, When I can no longer take care of my mom, she will be in this type of environment. It's not as drastic as being in a larger facility. It's kind of apples and oranges completely.

SPEAKER_03:

Yeah,

SPEAKER_01:

it sounds like it. We have three residents right now that eat three different types of food. Three different diets for their nutritional needs. Wow. And you can accommodate that. We can. And we can accommodate what time they get up in the morning. We don't have schedules per se. I mean, within a reasonable amount of time. But it's just individualized care. It's

SPEAKER_02:

like being at

SPEAKER_01:

home. It's in a home. It's in a neighborhood. It's more individualized. You know, like I said, apples and oranges. Some people might like more of the activities and the larger environment. Not everybody fits that. So this is a great alternative. The other big thing is we have one caregiver taking care of three people. But it's a hard job. It's a very hard job. And like you said, it takes a

SPEAKER_02:

special person to be a caregiver.

SPEAKER_01:

It really does. Whether you're the caregiver at home or you're a caregiver at a facility. Definitely need to recognize.

SPEAKER_02:

Yes, I agree. That's something we've been talking about on our podcasts a lot, both the unpaid family caregivers and the care economy with the paid workforce. It's a challenging job and we as a society need to recognize that and reward that work. So you recognized a need through your mom and you went out and created something, this amazing, creative, alternative living arrangement. are there other, or is this the first one in, in Illinois

SPEAKER_01:

or in our region? There's not a lot. There's not as many. I was fortunate to my significant other. His family has six of these type of homes in Dallas. So when I went out there and I saw it, I was like, this is exactly what my mother needs. And I'll just kind of replicated it. Yeah. She was a nurse. Okay. So as her dementia, she still recognizes herself as a nurse. So your

SPEAKER_02:

mother was a nurse.

SPEAKER_01:

Okay. So for her, for my mother to be in any facility, it will always confuse her. She will think she's working. It causes anxiety. So when I saw these homes, I said, okay, this makes sense. This is now a choice. I can do this. I'm already taking care of her. Why not? More than her. Take care of more than just her. It's not that easy, but, um, yeah. So once I started putting this home together and getting through the state regulations and licensing, I did reach out, and there are a few. There are a few. Not as many as we need. Certainly not as many in some of the other states. Arizona, Florida, California, Texas. This is very prevalent here in Illinois. We do not have very many at all. I know of probably... Four, the goal is, and for a lot of the residents that I bring in, depending on what they're able to do, I love to have them do more of the day-to-day things. So when my mom is with me at Lilac Senior Living, she does help. I'll have her clean off the dining room table. Here's the Windex mom in a rag. Or she'll swifter the floors. So... point being is that any of the residents coming in, be it A senior assistant like mine or even being with disabilities, being in that home environment allows them to interact to where their abilities will let them and still maintain some level of normalcy. These are the normal things we do every day in a home.

SPEAKER_02:

To take care of our own space and be able to clean up after ourselves. It gives them some ownership of the space and

SPEAKER_01:

some

SPEAKER_02:

pride in being able to contribute. And that's a wonderful opportunity for

SPEAKER_01:

people. That's a perfect way of putting it, Gretchen, contribute, because if they're living with other people, say they are in a home with five others or six others, if everyone can do a little bit, it's running just like a family. And that's kind of what I think brings a lot of value still. You know, you strip people from all of these things that make their life. you know, the normalcy of everyday living, right? Not intentionally, you're trying to support them, but the choices of what that support looks like right now are not that great. Right. Yeah. It's very

SPEAKER_02:

institutional and very cold and not very human, unfortunately. So you're providing a whole different alternative option. I love it. I

SPEAKER_00:

love

SPEAKER_02:

it. Thank you.

SPEAKER_00:

Now that we have learned about our guests and who they are, We want them to walk up the steps, grab a microphone, and get on our Age Stage. This segment allows a soapbox-like platform to speak to the aging community on any topic they want to shine a light on. Jen, on her Age Stage, will talk about reforming our long-term care and assisted living funding structures to better meet the varying levels of need for supportive care. Let's listen in.

SPEAKER_02:

Next, we're going to do what we call the Age Stage. And this is your chance to get on a soapbox-like platform, if you will, and speak to the aging community about a topic that you're passionate about. And it doesn't have to be about caregiving or about dementia, but it can be. And we would like you to say... the world whatever it is that you want to say on the topic of aging. What are you passionate about, Jen?

SPEAKER_01:

My passion. So since I am the owner of a senior small residential assisted living, any assisted living is private pay. Medicare does not, or I'm sorry, Medicaid does not provide funding for this medium intermediate level of care

SPEAKER_02:

for any institution whether

SPEAKER_01:

it's a private home whether it's private facility it's a facility okay um whether it's a small assisted living so basically anything that is licensed as an assisted living is not set up to where we can take in anyone that is on medicaid

SPEAKER_02:

okay does medicare cover it

SPEAKER_01:

no no okay uh medicaid is for, as they call it, supplemental or supportive living, where they can go. It's almost like independent living. They are still in a building that is supportive. They have congregate meals. So they have someone that can kind of check in with them. But they're not able to deliver services for their activities of daily living.

SPEAKER_02:

So it's a very low level of care.

SPEAKER_01:

It's a very low level. No one's there to be with them outside of getting them down to the dining room. They're not getting them dressed. They're not there to help them in the bathroom. So then you go from that. to skilled. So now the only two options are this supportive or skilled. Skilled on the other hand is the extreme. That's for such a higher acute level of care need. So now you've got some folks that really just need assistance with their activities of daily living. can't afford to be in a assisted living where that's the intermediate care level. And so now they're in an environment where their peers are at a much higher state of need. So it's not necessarily appropriate at all to have these people in that space. So it begs to the question as to assisted living is not as expensive as far as the affordability of care that a skilled is at. So to me, it would make sense to open that up to take some of these older adults that don't need to be in that environment Right. it'd be an alternative that would work for them, but also be fiscally responsible because the care cost would be so much less. And as we are in this population, baby boomers that are going to be getting older, that are going to be needing this assistance, I think that we're in for a tough road if we're not recognizing that this guild is a very expensive option to be taking care of people that don't need all of those services. So even if you want to not look at the personal side of it, which is, you know, not great. Even if you were to look at it from that perspective, the dollars and cents of it does not make sense. It is going to tax our system hugely.

SPEAKER_03:

So

SPEAKER_01:

that is my passion and why I don't, I don't understand why we're not working more towards creating that as an option.

SPEAKER_02:

Right,

SPEAKER_01:

and creating more

SPEAKER_02:

flexible assisted living arrangements like what you talked about on the podcast, that you have a home in the community that feels like home, that's more comfortable for people, and they could make that whole process a little bit easier too, and more people would take advantage of that, especially over the option of a skilled nursing home.

SPEAKER_01:

Exactly, and I should note too that there are very few Medicaid skilled that also provide memory care. So people who really should be in a memory care facility, there are very few that offer both. So now there's a whole other gap of care. that's not out there. And for families that have to bridge the gap, there's only so much a family can cover as far as that goes.

SPEAKER_02:

Right. It's only a small handful of options for people who have dementia and need skilled care.

SPEAKER_01:

Yep. And that's, I think, that the indication and what we're seeing is there's a larger and larger portion of people who do have Alzheimer's or dementia, and we're seeing that increase need in that diagnosis increase.

SPEAKER_02:

Right. As people are living longer, we're going to see obviously more of all kinds of different illnesses and needs and dementia will be

SPEAKER_01:

included in that. So that I think is a real... hot topic that should be discussed that should be looked at that we should be planning for that we need to find solutions for before it gets too far down the road and then there's problems or funding gets cut or there's not enough because we've got so many people with so much need if we don't have that middle space it's going to be very hard to have the financing to back up these seniors that need help music

SPEAKER_00:

Thank you for listening to The Age Guide, Perspectives on the Aging Journey. We hope you learned something new on this podcast because we all have a stake in promoting a high quality of life for people on their aging journey. Age Guide coordinates and administers many services for older adults in Northeastern Illinois. We serve DuPage, Grundy, Kane, Kankakee, Kendall, Lake, McHenry, and Will Counties. Our specially trained professionals are available to answer questions and connect you with local service providers and resources such as the Family Caregiver Support Program, which provides valuable resources for those who are giving unpaid care to adults 60 plus or to someone with Alzheimer's disease or a related disorder. The program includes caregiver resource centers, respite services, gap filling services, legal services, caregiver counseling centers, training and education resources, and support groups. If you are interested in these services or want to learn more, go to our website at ageguide.org. Call our offices at 630-293-5990. Please follow our podcasts so when we post our monthly podcast, you are notified on your streaming account. Thank you, and we will see you next time On the Age Guide, perspectives on the aging journey.