Life With Grams & Caring For Alzheimer's

Kris McCabe
Kris McCabe

Kris McCabe talks about caring for her grandma, not getting too comfortable, and how to practice gratitude everyday.

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Podcast Transcript

February 16, 2023
Note: this transcript was computer generated and might contain errors.

Mary And Kris:  So, I am Kris, I am the full-time primary caregiver for my grandma living with Alzheimer's, dementia. I have been her caregiver. She moved in with me in March of 2017, so it's about six years we've been doing this now, And yeah.

Katie Wilkinson: Can you tell us a little bit more about your grandma? What what she's living with and you know what are some of the challenges of caring for her?

Mary And Kris:  A hundred percent. So my grandma lives with Alzheimer's disease, which is a progressive terminal illness. When you get to the later stages the disease constantly is changing so through the six years. Every so often it's like this new. Oh my gosh what am I doing? You get really comfortable for a minute and then all of a sudden a new change comes whether that's eating issue or a bathroom issue or whatever the case may be. So it's a constant learning journey really as a caregiver You're constantly learning new things as you go on and I'm very thankful that my grandma and I have always had a really good bond because it's helped me with this journey tremendously because I've really focused on our love and relationship and less about the reality of what we're living in with this disease because you can't really make sense of it. So it's been best for us to just kind of Live off of our our love and our bond with one another.

Katie Wilkinson: Yeah. I mean your love and bond is very apparent. Just you know, you guys are very open about your experience and appreciate all of your channels but the the connection is obviously very clear and Can you talk a little bit about like, how you ended up in this primary caregiving role? And what your relationship was like, Excuse me with your grandma before becoming her caregiver

Mary And Kris:  Okay. So my grandma has had she had a stroke in 2007 and that kind of onset her dementia, but she still lived alone for a while and then she moved into my sister's in-law suite. Just so my sister could kind of keep an eye on her because the rest of the family had moved out of state and then after a few years, my sister really noticed that my grandma's behaviors were getting unmanageable for her so then my mom took over her care. My mom tried for a little while. After a few years in my mom's care, she was placed into a nursing home. And then she was in the nursing home for about three months, and I just saw a drastic change in those three months in my grandma prior to that, you know, we were road tripping across the country together. We were best friends, so we really had a great bond and relationship, and so it was so hard for me to be like, Grandma was just driving a car five months ago, and now she's like fading away. So,

Mary And Kris:  Serendipity, I don't know. Whatever you want to call it, My roommate ended up moving out because of a family emergency, and he had to go and take care of his mom. And so, a light bulb kind of went off in my head. Like, Why don't I take care of Grandma? Everyone else in the family has tried. I was 29 years old at the time. I was the youngest I was a bartender and a photographer. So no one ever really thought that like, I would be the suitable fit, but my family said, Give it a go. And here, we are six years later, so, I did something right.

Katie Wilkinson: He did something right and That is so, serendipitous to suddenly have the like the actual physical space to take care of your take care of your grandma. And you mentioned that your sister gave it a go and…

Mary And Kris: Yeah, but

Katie Wilkinson: your mom gave it a go and can you talk a little bit about like, Who else is part of your grandma's care team Now? Are they still involved? You know, what does the rest of support look like

Who else is part of your grandma's care team?


Mary And Kris:  Yeah, so caregiving and this disease is definitely a journey. I have to say at the very start six years ago, it was a very family-oriented care squad, we'll call it. And we all kind of chipped in

Mary And Kris:  I was still working full-time so we would have a caregiver come to the house that we all collectively helped pay for but then you know the pandemic happened and that's kind of when I realized that my grandma couldn't be left alone at all anymore. So I used to go to work and I would come and relieve the caregiver or the caregiver would sometimes leave early. And there would be like an hour in between. I would get home from work and we just recognize that it was just not a safe environment anymore. So she needed 24-hour care at that point. And then, you know, luckily throughout the pandemic, I still was making money because of everything that was going on. So it didn't really seem like, any trouble. I was like, going to continue doing this. And then, the world opened backed up, and I didn't know what to do with my grandma, because I knew that, if I went back to the position that I had,

Mary And Kris:  Most of my paycheck would end up going to my grandma because at first we were only doing care, four days or three days a week for four hours. I went to work from 10 to two at the photo studio and so Yeah, I just realized that that wasn't gonna work out anymore because she was gonna need a caregiver every day. I was going to work and my family was like, well we can only chip in for the three days. So you'll have to cover the rest and then basically I'd be working at my job for only to pay for a caregiver. So in my mind it just made sense that I have to find freelance or do something else and stay with my grandma full time. So that's kind of how that happened.

Katie Wilkinson: Yeah, I mean, I think what you've just said is a Dilemma that a lot of caregivers and parents face. You know, all of my income is now going to caregiving. So what's the alternative and you mentioned looking at alternatives, like freelancing, Can you just share a little bit about like What was the shift you made from bartending a photography to like How are you making money now?

Mary And Kris: Yeah. So at first, my sister would watch my grandma on the weekend so I could go and do photo shoots and it worked out really well for a while. Again, family dynamics can sometimes tend to change with this disease and and stressors come up and things happen and unfortunately it just my sister has two kids and my mom wasn't around anymore. She hops back and forth between Chicago and New York. So I didn't really have as

Mary And Kris:  Reliable of resources, as I felt, I had, when I was going to work, I feel like once it became. Well, you want to stay home with her all day, every day. That's gonna be a different situation for everybody, so that dynamic changed a little bit, but luckily, I've been able to continue working, you know, social media. And the Internet has been a really blessing for me just because it's kind of relieve. Some of my stress on like the next project, I'm gonna find and things like that. So I have no idea how I became a social media influencer, but I woke up one day and here I am. So I'm very, very thankful for those opportunities as well to help me kind of maintain. A flow of income.

Katie Wilkinson: Yeah, that's awesome. What I mean just as an aside what's it been like to? Like to to become an influencer or become a content creator, what's that been like for your life?

Mary And Kris:  It has been wild and crazy and it's definitely You don't really know how to process it, because it's happening. I'm also caregiving in real time while still sharing my journey. So it's like I haven't really had much time to reflect on like what I'm doing because I'm living it in the moment and so it's very interesting I'll say that you know it's it really has been a blessing not only just you know the opportunities that have come for us but the connections I've been able to make with people I think that's really been my lifeline like What just happened?

Mary And Kris:  But it's just been like my lifeline of being able to connect with people who understand and you don't feel so isolated and alone. Because even when I had my like care squad, my family helping out here and there, it's a really different story. When you're the live-in, when you are, you're constantly, the one there. So it's nice to kind of hear from people who have very similar situations as I do.

Katie Wilkinson: Yeah, I love that. The caregiving community, or whatever you want to call it online, is really a special place. And I'd love to shift gears. We, This podcast is to talk about, you know, the cost of caring, primarily financially, but the hidden costs of caregiving and And talk about a taboo topic, you know, money and can you share a little bit about like what types of things you spend money on as a caregiver for your grandma?

What do you spend money on as a caregiver for your grandma?


Mary And Kris: Yeah, in the beginning, obviously it was the in-home care. So that was a big chunk of the money, but now it's just equipment and different needs that she has. It's a constant around the clock. Like I said, it's a progressive disease, so we're always changing now. We have to get safer shoes, safer socks, you have to get the underwear. You have to get the bed rails, all of the things, all of the equipment that sometimes isn't covered by medical insurance or anything like that. We recently this two weeks ago where eligible for hospice. So that has been very beneficial now on the pockets because we get the depends and we get the wipes and the bed stuff covered now. So that has been something that is kind of a blessing, but yeah, it's a day in and day out, I mean, I live with my grandma, so it's all the bills, every aspect of it, you know, if she wants to do something, if you

Mary And Kris:  Just to live. It's it's all of it. So we're really. Yeah, I'm really thankful for the that I am able to do this. I know a lot of people don't have a situation where they're able to stay home and take care of a loved one. So I know that I am very, very lucky and extremely fortunate. I know that I also I don't suggest people doing what I do because doing it all. You should pay for someone to help you. You shouldn't be like it's one barrier that I've had a really hard time breaking down because I'm very much a hands-on like Oh I'll do it. I could do that. Yeah, no, don't worry, I'll do it. So as a caregiver definitely I know people are like, Oh, I don't want to pay or I don't want to it's so hard to afford in home care, um, but I definitely suggest finding ways to set yourself up. So you're not

Mary And Kris:  The only one.

Katie Wilkinson: yeah, yes, I totally understand the feeling of like control over the situation or feeling like it's too hard to hand it off sometimes because you know you have this all the information and also the connection and, I guess my question is you mentioned you know you guys are eligible for hospice now and that's sort of changed your financial situation or at least how much you're spending on on some. Products and what's your experience been otherwise with you know financial assistance or insurance like how has that factored into? And

Mary And Kris: Sweating.

Mary And Kris:  Um,

How do you leverage financial assistance or insurance for caregiving?

Mary And Kris:  so my grandma is on Medicare, she has social security and disability that she gets. It is not enough money to pay my rent and all the bills. It's a very small amount of money, but we do get by. So that is, you know, at least she has something. But yeah,we were not eligible for Medicaid, unless we took her money away, which then it's just so interesting because it, it's like this scale. Really, for me it was like, weighing my options. What is the most beneficial for us for her now, and for my future as well? You know, really because I also need to be thinking about my funds and my future, and what's going to happen when I don't have a roommate, you know, like situations like that. So

Mary And Kris:  For us, I know a lot of people are like, Oh we you know, sold this and got this, so we can of be eligible for this. My grandma never owned property. She's never owned anything in her life. So those kind of financial things for us we're very easy because it was just like this is what she gets a month. This is what I get a month. And now how are we going to live our life, you know? So, I think a lot of people I've just from being in this space, who's loved ones have assets and who have homes and things like that. I look at them and I just Whoo, it's a lot. The financial situation is a lot. A friend of mine's. Grandpa is 91 years old and he's relatively healthy, but he's recently started falling and it's just too much for my friend's grandma to take care of at this point. And we were just having this conversation today. She's like the places are $5,000 a month.

Mary And Kris:  $5,000 a month or they want him to sell his home and everything else. And so I think there's a lot of things that people don't realize when it comes to long-term care when it comes to aging adults and what's going to happen in the future. So yeah, she even, she's like, you're so lucky that you are able to do that. I said I am and I'm lucky that I enjoy doing it because if I didn't, I would hate my life, like, I would, who wants to do this day in and day out all day? If you're not happy, if you're not happy waking up every day, then you know what I mean? So, we get by with, with what we have. And, you know, that's just kind of how my grandma raised me too is


Mary And Kris:  You know, you don't need the extra fancy stuff, you don't need to purchase the, you know, this and the that and the designer handbag if you have what you need and you get by and you know that's that's kind of where we're living. But with knowing everything I know about my future, it has been a little scary for me to think about. Okay. Oh snap. Hold on. What does my future look like? Because I'm 35 years old, I don't have Forever to raise money for my long-term care, you know. So it's it's pretty wild.

Katie Wilkinson: Yeah. And I've never understood designer handbags either but Something I do have a follow-up question for you, but something I am really appreciate about,…

Mary And Kris: You.

Katie Wilkinson: like, watching your content and you've just expressed it right now is like your attitude of gratitude, like being grateful and counting your blessings. I think really changes like a mindset of what it, you know, what it means to just like exist in the world, but also to, to manage a challenging situation,…

Mary And Kris:  Yeah.

Katie Wilkinson: like, curious thing. and, You sort of talking about it, but, you know, in what ways has caregiving affected, your, you know, thoughts on saving and spending and thoughts of the future for yourself, beyond your caregiving experience.

How has caregiving influences your thoughts on on saving and spending?

Mary And Kris: Yeah, before I was a caregiver I very much lived moment to moment. I think I still do that because we're not guaranteed tomorrow, none of us. And so that's kind of always been my mentality of life is just kind of go for it, live the best life and figure it out when the problem comes

Mary And Kris: But as a caregiver, it's really kind of opened my eyes that I don't want my family. Or I don't want, I mean, I don't have any children, so I couldn't imagine if I got older, Who's where will I end up you? You know, you really do start asking these questions. So for me I definitely have taken a look at my spending and how to just start implementing a savings. Just for my own self, you know, like not a savings. If my car breaks down and I have a couple of thousand to, you know, fix it. But like an actual, what is the plan for the future? And I never thought that way up until recently. And I think with my grandma's progression in this disease and starting to slow down, it's kind of more open my eyes. I've been awakened even more to. Okay? What is the next plan or steps for your future? Because as much as you want to fly by the seat of your pants and you know live your best life, there is questions and concerns that

Mary And Kris:  You have to focus on we're if we're lucky enough to get older, you know, there are going to be things that are going to be harder for us to do and even just the future. I think about, you know, Okay, I have a car now but you know what's gonna happen if I don't have a car, then, you know, this, you know, I've lived through a fire my apartment burned down and I lost everything. I own six years ago and so life happens. And so I think being a caregiver It really has started to kind of show that you have to be ready for anything too.

Katie Wilkinson: Yeah. And for those that are listening and Thinking the same questions that you've been thinking about, like What happens when I get older, who takes care of me, Where's that money? Come from and Where did you start when you started thinking about that? And How did you I guess I wanted to logistics like you were like, Okay I should put aside money. You know. Did you think about saving a certain amount? Did you look at specific types of accounts? You talk about sort of logistics of setting up this savings plan for your future?

Mary And Kris: Logistics, not so much, it's more which I should definitely do. Um, you know, but for me it was just kind of like What what can I get ready for at my sweet little 12 year old niece was like, Don't worry and kris you could live in my house and I'll take care of you. So I had a little bit of relief but no, it's just kind of like

Mary And Kris:  Yeah, I don't know what the logistics would look. I have to, I have to continue that further to help my future. I think we all do. Like I said, I was talking to my best friend earlier about her grandpa and I said the same thing. I said, You know, we don't talk about it enough. A lot of people don't realize that long-term care isn't covered in most insurances or you have to put money away for it. And she said something, she was like, Who has, who can put money away right now? Like, you know, it's just, we are really going through it as a millennial. I feel like I've gone through it constantly in, you know, our world and so yeah, next plans would be To find something that's going to really. Help me save and build because I can put the money away. But how am I going to grow that or how am I going to?


Mary And Kris:  Yeah, continue it so definitely thoughts. I think about it's definitely in the back of my head. I just really need to create a plan and and go a little further and dig a little deeper with it.

Katie Wilkinson: Yeah, I mean, it's hard. I heard someone say that I, we you and I are the same age and, and I heard so my other day say like Well Millennials are never gonna be able to retire. I was like,…

Mary And Kris: Yeah. Why'd you?

Katie Wilkinson: well that's that's not great, but okay.

Katie Wilkinson:  Yeah, it's nice. That you are sweet. Niece is gonna take you in when you're older and Moving back I guess to talk a little bit about like the cost of caring for your grandma actively right now. Not so much your future and You've mentioned. you know, you didn't need to like, sell any assets or like some things have been easy but I guess my question is you know what's worked well for managing Money. And you know what? What systems have room for improvement.

What's worked well for managing money as a caregiver?

Mary And Kris: For managing money, for me. I really always make sure that I pay all of my bills. I start that. So for me, like the funds that come in every month, I have to make sure that what needs to get covered gets covered. I think that's a pretty basic tool of how to spend your money is make sure that what you need is covered. So I always make sure that my bills are paid at the top of the month with what I have and then we can kind of go from there for my grandma. Again, our needs are all just kind of together at this point, you know?

Mary And Kris:  We take care of each other. I take care of her. She takes care of me. And so, you know, the gas for my car and my car insurance, and all of that are again, are just big bills that I make sure that I get paid. As far as like, savings and funding, we don't really do much. Unfortunately, at this stage of her disease, you know, in the earlier stages we were going on airplanes and taking trips and I was able to budget for things like that because she had the ability. So now I have been able to save more money because we're not doing as many activities. So that's kind of been beneficial. Um also kind of savings and having a plan set for her passing as well is expenses that we've been discussing as a family and trying to figure that out.

Mary And Kris:  So yeah, I mean I'm definitely not the most technical when it comes to money and situations like that again. It's like that bartender mentality. Like Okay, well, I have this much money right now, let me pay that and then I have to work for this and that's just kind of how I've always continued and continue to do things. It's like, Okay, I have to pick up a project so we can be good for next month or oh, it's someone's birthday or, you know, so that's just kind of how I live. It's probably not the most. You know, organize or I don't know beneficial way but it's what gets us by and it's what works for us and has worked for me. So, um, yeah, there's a million different ways to budget and to save your money, but I like to get it all out of the way, at the first of the month and kind of figure it out from there. So,

Katie Wilkinson: Yeah. Thanks for sharing that. I think, you know, if it's if it's working for you then it's the best way for you. And do you use like a like does this all just live in your head or do you use pen and…

Mary And Kris: If it's basically my Bank of America like I my mom instilled in me like checkbook mentality,…

Katie Wilkinson: paper to use an app? Yeah. Okay.

Katie Wilkinson:  Yeah. Yeah.

Mary And Kris: like growing up in the late 90s early 2000s, like Get out your checkbook. So I very much do that digitally. Now there's no real one place where I'm like writing and organizing um but yeah it's it's there it's stored compartmentalized in there for what I need things for but I have to say like the digital age is so beneficial. I don't use any apps or things like that to help me budget, but I definitely deleted all of my subscriptions and things like that, I think You don't realize, like sometimes you just sign up for all these silly things. So that was one. Budgeting thing that I did recently was kind of go through. All of it and get rid of all of that. But yeah.

Katie Wilkinson: This is the subscriptions that sneak up on me. Are the ones where you sign up for a free trial? You're like, Yeah, I'll sign up for three days or…

Mary And Kris:  Yeah, 150 dollars late.

Katie Wilkinson: seven days of this free trial. Yeah, yeah. What is this app even? I guess looking well,…

Mary And Kris:  oh,

Katie Wilkinson: not looking back because you're still caring. But like What do you wish you've been doing this for a while. Now what do you wish you knew at the beginning, if you're caregiving journey?

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


Mary And Kris: Oof at the beginning of my caregiving journey. I wish. I wouldn't have been so worried about the technical aspects of it all, you know, the the, the house, and the whys of how we're going to continue this. I think I got really, so stressed out in those first two years when I was paying for the caregiver and like the scheduling and, and the money situation. And, and all of that was just so much at first, I think, at first for us, too, there was a lot of hands involved. So, there was a lot of outside voices, telling me where my grandma's money should go and what I should do with that money and how I should save for the future, but without really taking into account that

Mary And Kris:  I'm not getting paid. So why should I withhold a thousand dollars every month for, you know, like to me that's just how I justified everything. And so I think for me to tell myself in the, in my earlier self is to not to listen to everybody else, if they're not the ones involved in the everyday, you do just a great job on your own, you know, you can budget, you can save, you can get by, you can live life, I think people don't realize just how much it takes and how much

Mary And Kris:  It's it's all of it. So, yeah, I would tell little me to just not stress into not worry about everyone, else's opinion.

Katie Wilkinson: Yeah, that can be hard and I think it's still hard like no matter how well you know about boundaries or you know, theoretically setting boundaries, have you found Like have you been able to set boundaries with your family? Do you have any like, advice for other people that are struggling with the same thing? Lots of voices and lots of opinions?

How to set boundaries with your extended family

Mary And Kris:  Yeah, I think for me it's really expressing myself the best that I can with my family because everyone has a viewpoint like two weeks ago when I went on hospice with my grandma. My mom was like, well the pictures she takes. She looks fine, you know? And so from a photograph, it might look like she's great and fine. Um, but yeah, I think for others going through similar situations is that, you know, your loved one best and really try to communicate um your needs and your loved one needs to the people who are going to be involved in this as well. I think open communication is really important. I think that's something my family has struggled with. We don't like to really express ourselves fully so we kind of just like mm-hmm. Okay. And and then you end up in situations like I'm in now where my family is going through.

Mary And Kris:  Drama. Like, there is a lot of stuff going on, and I'm not getting the help that my grandmother and I deserve because we didn't have that open communication, when things started getting tougher. And I think that that's really important, whether that's money wise, I know money is one of those things I see it in in the social media land. It's like my aunt wants all the money and this is and it's so hard because you are gonna have all of those voices and everyone has something to say. But if you always just focus on the best interest of your loved one, that's gonna be the most important, you'll figure your stuff out, you know, but right now as a caregiver the the person that is In need everyone in the family. Needs to focus on that.

Katie Wilkinson: yeah, I think that's a nice way to frame it but, you know, it's not It's not necessarily about you. It's not about your mom right now. It's not about your aunt that wants the money, you know. Like how can we central the center around the care recipient or your loved one? Yeah. and,…

Mary And Kris:  Yeah.

Katie Wilkinson: We like to ask everyone to close out these conversations. You know, what is your number one tip for other caregivers?

Mary And Kris:  Hmm.

Kris’ number 1 tip for other family caregivers

Mary And Kris:  My number one tip for other care. Givers is definitely to find support from like-minded individuals, people who are really in your shoes and people who are just willing to listen, I think as caregivers people are often always wanting to share their advice or share their opinions and sometimes it's nice to just be able to express yourself. This is what I'm dealing with this is the situation I'm in so that kind of goes for friends of caregivers, too is sometimes, just listen, but as a caregiver really find the support, I mean, find the people find your group that just gets you. I'm very lucky. I have a certain group of people that at any point in time, I could text or call up and just say, Yeah. And and they will be like, Wow, I feel. Yeah, you know. So I think that's really, really important as a caregiver. You gotta maintain that support and maintain your peace.


Mary And Kris:  Think that's really important is Don't lose yourself. I do this 24/7 pretty much 365 But I find time every day for me, I meditate, I journal. I do things that are really going to benefit my well-being, and I think that's really important is that you're caring for someone. Don't forget to care for you.

Don't lose yourself. I do this 24/7, pretty much 365 days a year, but I find time for me every day.I meditate, I journal, I do things that are really going to benefit my well-being. I think that's really important when you're caring for someone. Don't forget to care of you, too.

Katie Wilkinson: Yeah, I think and that's very important, like, you can't, you know, can't pour out an empty cup, I think finding time for you is important. I also think you're in, you know, sort of unique situation, having somehow doubled into influencing and having a large community online. But for someone who maybe isn't connected the way you are, do you have any like Advice or resources or people that you might point them to, like, How do you find your people? You know, if if you're like, I just started doing this, I don't know what to do. How do you find your people?

Where to find a caregiving community online

Mary And Kris: Honestly, before I did the social media, I mean, I was on Instagram for five years. I had a few hundred followers, but I had started in face on Facebook, in the Facebook community groups. And I know those can be overwhelming, but I really love hilarity for charity. That's kind of where I started going into the social media world is when I found what they do and they have drop-in support groups, seven days a week and you can really find your little niche and what kind of Who you're caring for or who you are, whatever represents you best. And I think that's really important. I know that it's so overwhelming as a caregiver.

Mary And Kris:  But there are certain resources, so definitely check locally where you live if there's any caregiving groups around. I know my local library actually has a dementia support group which is really cool. Most people wouldn't think that, you know, that's where you would go to find it. But yeah, there's plenty of places all. So aside from hilarity for charity, if you're looking for It dependence on what kind of disease or what kind of caregiving you're doing? Obviously hilarity, for charity does geared towards dementia caregivers but there are a lot, social media is really kind of the way of the world these days and I'm telling you you will find your people. Look from Google search. It type it in. On tiktok instagram, caregiver. Someone you will relate to will pop up and I'm sure you can find or start a community.

Katie Wilkinson: Yeah that's awesome. I mean Tiktok and Instagram have even just like from a logistical standpoint of really increased like improved their search functionality. So it's a lot easier to find who or what you're looking for, you know, on that those platforms beyond Google.

Mary And Kris: Very specifically. Yeah.

Katie Wilkinson: Yeah. And if you want to find you online, you and your grandma, where can they find you to follow along your story?

Mary And Kris:  Yeah we are at life with Grams Instagram Tiktok Gmail everywhere, we also have a website life with, It is currently being updated so it should be all up to date very soon and I'm excited to share that updated version with everyone. But yeah,

Katie Wilkinson: Awesome. We'll make sure to link you, you know, all over the posts and all of this. Thank you so much for your time and all this information that you've shared and being so open about you're and your grandma's experience you.