Alzheimer's Advocacy with Fran McInerney

Frances McInerney

Alzheimer's Advocate Fran McInerney talks about all things Alzheimer’s advocacy, research, and her caregiving journey.

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Podcast Transcript

Published:
February 9, 2023
Note: This transcript was computer generated and might contain errors.

Fran McInerney: I am Fran, I am from New Jersey, and I was one of the primary caregivers for my dad, John who had early onset Alzheimer's. And I always say, early onset Alzheimer's because he was very young. He's 58 at the time that he was diagnosed, and from what his doctors told us actually, it was probably in development like much earlier. So very much on the younger side, a lot of time. Alzheimer's dementia patients, are thought of this, just like older people, you know, 70 80 plus and here he is relatively young for someone to have this disease. I took care of him for probably like very in-depth for probably about two years a little bit by proxy for a couple years because I was in grad school at the time and and yeah I mean I cared for him the most of the pandemic which was an experience unto itself, a bit of a blessing, a bit of a struggle and but of course I wouldn't change that for the world.

Katie Wilkinson: you mentioned. You were in grad school for a little bit before you started caring for your dad in a more full-time capacity who was caring for him sort of in that interim period. Okay.

Fran McInerney: My mom. And but also during that interim period, I guess you could say his independence. Was relatively okay? I mean at that point, you know, he couldn't drive anymore, but With me not being there and then it just really being mostly my mom. She felt very comfortable like going to work and being able to stay at home, things like that. So safety wasn't an issue at that time. Of course, that increases as the disease, progresses safety awareness, and that being a major issue. Um, so really when it became the two of us really tag, teaming is very intense.

Katie Wilkinson: Yeah, I believe it. And do you mind sharing a little bit about what it was like, caregiving during the pandemic and like the challenges of the pandemic?

What was it like caregiving during the pandemic?

Fran McInerney: Oh, okay. So, big challenge was working from home as someone who works. I'm a speech therapist. I work in a school and so to switch to totally online which is like learning a new skill onto itself and then being home for that time was just good because then, you know, we get like a first eye view. You really get to see what's going on with my dad and how all this is impacting him. But at the same time, you're also like Oh wow. It becomes so much more real because you're in it every day. You know, about I would say

Fran McInerney:  Maybe six to nine months. The summer before, we'll go with the summer before my mom and I haven't discussing like what was going on with my dad where he was at. It was always a check-in, no matter when I was living at home or I was at school or anything, there was always check-ins kind of like update status updates and we were talking about the fact that that coming winter. He probably wasn't going to be able to remain home safely. If she went out to work, So what were we going to do about that? And he wasn't at the point where he was going to need.

00:05:00

Fran McInerney:  Like a medical care at home or like an ate at home or anything like that. He wasn't quite there. So we needed something that was kind of in between and fortunately we found the tender which is an Alzheimer's respite program which was like two towns away and we were able to send him. I think it started from like eight to one or eight to two and it was just enough time for him to go and everyone there had Alzheimer's. So everyone they are kind of understood where everyone's at. It was very nice, social community space. There are model of care was wonderful and the bonuses that they always served lunch so we didn't have to worry about like a meal which is also huge. Like when you go through the planning process of the day and who needs? What? And at what time and things like that to have like one meal, check to office huge. So

Fran McInerney:  We started, he started going there in the summer, it carried through to that fall. And then, of course, when Covid hit, like everything, shut down. So that unfortunately was not something that he could do anymore. then from there, we transitioned into being at home full time and just really Being there with each other all the time which was great because it was kind of like found time. You know what I mean something that maybe I wouldn't have had the opportunity to spend that time with my dad but at the same time it was all the time which could be incredibly overwhelming after a while.

Katie Wilkinson: Yeah, I mean that's like a lot of time with with any but person you…

Fran McInerney: Yes.

Katie Wilkinson: and now you're caring for someone and of course that's special. But also I imagine is is overwhelming. Did you find ways to like, get a break or take care of yourself? You know, what was working when you guys were just like, in that,…

Fran McInerney: Stoned. So intense.

Katie Wilkinson: like we all were in the house all the time.

Fran McInerney: So, fortunately for a very short amount of time, I would say about three months. My siblings, my two siblings were there and so that was very helpful. In terms of like, Okay, like Let's go for a walk. Let's just take a drive in the car. You kind of alternate, we can all trade off on like meals meal, making things like that. So that was really helpful. My sister lives in Berlin. So she did eventually have to go back. So she went back and then my brother, he moved out and after that it was really just my mom. And I So having like an extra set of hands having the support of others during that period that like very crunch time period during the pandemic was incredibly helpful and then even beyond just having the support of others in the ways that they could figure out how to be assistance of you. Alright, assistant's for you obvious use was huge.

Katie Wilkinson: Yeah, I know I'm throwing questions at you that we didn't talk about previously,…

Fran McInerney:  No. That's okay.

Katie Wilkinson: but what, what kind of things were they able to do? You know, after they've like, gone back to Berlin and moved out, how were they able to support from afar? What things were useful to you?

Fran McInerney:  Um, so I love my sister but her like weekly check-ins. Like I mean, just doing this right now being on like Google meets or zoom being able to just kind of be a different face and checking in and kind of updating. I think that was very exciting for my dad. She sings at the Dome in Berlin, so sometimes their services would be online, and sometimes just have some solos, which is great, but then, you know, be like, okay, Dad, look, there's Sarah. This is required. This is what she's doing and it would just be like excitement and it would just the minute, 20 minutes, half hour of like that. Type of distraction was also like, Okay, I'm gonna run and like grab a cup of tea or something like that's huge and it was just like brought him joy, which is great. And then my brother could come in at least one more than once a week. But like would have like this is your meal this week and he would come in and cook dinner. We should be a break for me or a break for my mom, depending on our work schedules. And once again that little break is huge, it just one.

Fran McInerney:  Thing on your mind. So that was really helpful.

Katie Wilkinson: Yeah, I love that. That's Awesome. That they they could find ways or there was like touch points that were nice for your dad but also a break for for you. and, Your dad has…

Fran McInerney:  Yes. Yeah.

Katie Wilkinson: since passed. Can you talk a little bit about what life's been like since he's been gone?

Fran McInerney:  Yes.

Fran McInerney:  It has been and I say this now because it's been about a year and a half had you talked to me a year before or a month like you know I mean and by arify me laugh this time last year or a month after I would probably have a very different response or may not be quite as calm as I am right now. But I would say since my dad died has been a lot of reprogramming. Trying to re figure out who I am. Now that I've had this very big experience, very Life-altering experience for not just myself, but of course him. So trying to refute who I am. What I want to do, how I'm going to channel, all of my feelings and emotions from that experience into something. It's a lot of refiguring that out. Like, I remember,

00:10:00

Fran McInerney:  Listen, it was there was this like week of Oh my gosh. Okay this is a whole separate story but there was a week of time from when we put my dad into the memory care facility and But the time that we within a week's time, we brought him home on hospice. So it's very quick that I wound up going with my boyfriend, his family down to the beach and I just like, read for three days and it was amazing. It was like right I like reading. Oh my God. Great. Like I you forget about it. You're like I can't dedicate like time to like two chapters in a book or if I have the time I'm exhausted. Maybe I just want to veg out on the like so far or something. So, like no trying to remember the things that I liked before and kind of getting back into the group of doing them too. So a lot of you know, getting out of that caregiver mode of like I need to be on, I need to be doing something and I need to be figuring something out to like, okay, take a breath. Like, yes, we have things to do but you don't have to be on edge all the time, which is huge.

Katie Wilkinson: Yeah, my my mom passed, it's been eight years now, but I remember sort of similar to you just said, like, you know, in the year after versus now I would have had different answers but it was it was confusing to like, really, not confusing. But it was an interesting experience to sort of reconfigure, like our family dynamics and who I was, and you know how we sort of operate now because there had been this sort of focal point in the family. And now everything was different was very like nice but weird experience to come back to things like Oh I like reading, you know,

Fran McInerney:  Yes.

Katie Wilkinson:  Thank you for sharing about, you know, how, how things have been different in the past year and a half. I know also, you've gotten, you know, more involved in community work related to Alzheimer's and dementia. Can you talk a little bit about, you know, what you've been doing, and what's exciting to you?

Fran McInerney:  Yes. So while my dad was still alive, I wound up getting involved with the walk to end. Alzheimer's specifically, the Philadelphia walk to end Alzheimer's because even though we are from South Jersey, we are very much Philly, folks. And Philly fans, which, which is really great little side story. My boyfriend is from being North Jersey area. So when it comes to hockey or football, there's a little bit of a little bit of arrive already there. But so I got involved with the Philadelphia walk to end Alzheimer's because I was like I feel like I need to do something channel. This energy, this frustration this

Fran McInerney:  Many emotions, whatever was kind of going on, but like What can I do right now? Because I can't do anything like super big, right? Like we still have our dad here, he's the priority at this point but I need to do something else and this is a really nice way to get involved. I also happen to know the person who was managing at the time she had been my college roommate. So I reached out to her I was like Hey how can I get involved? What can I do? Like I don't just want to join a team, I'll create a team we can all walk together but like maybe just getting involved a little bit more and so I wound up on the planning committee and I've been doing that for the past I guess going into this, this will be the fourth year because walk season ends and like November. So we're going into the fourth year. And then, after my dad died, I remember like really sitting down having a conversation with my mom being like this is nuts like

Fran McInerney: What this is ridiculous. Like how how are we gonna change this? Like this is what happened to our dad and there's so many other people who knows, somebody else like, how how are we changed? Like What are we going to do? So there is like a legislative branch of the Alzheimer's Association. I'll just go with that. And it is the Alzheimer's impact movement. So once again, I reach back out the Holly, I was like, Who do you know? And she said Here, I'll send you in this direction and I wound up. meeting some people at the walk who then I got like, It up. Sorry. So there's a little it's a long story and let me what are all the steps who wound up helping me meet up with the right people to get involved with Alzheimer's impact movement? Yes. I mean I think I can keep going with it.

Katie Wilkinson: but, You know I mean we loved we'd love to hear more that's so serendipitous that your college roommate wasn't was involved there and…

Fran McInerney: I just you don't know if you

Katie Wilkinson: you know has been able to like connect you with all these things because there's no way you would have known in college that this would be a connection.

Fran McInerney: No. Yeah,…

Katie Wilkinson: that would be useful or,…

Fran McInerney: no. I know.

Katie Wilkinson: you know, And meaningful. Yeah, and yeah, I mean, we'd love to hear more about The address sort of how you've gotten involved in all of these. And and if you're comfortable like the work that you're the organizations are doing and ways other people can get involved.

00:15:00

Fran McInerney:  Sure. So specifically I'm from District District 3, It's very what was that? Not hunger games. Yeah. Was it hunger games?

Fran McInerney:  I'm from District 3. In New Jersey, No, but I work with Andy Congressman, Andy, Kim's office and we just check in with him. Let him know what kind of legislation is coming through, whether it be for caregiver, support patient, support, funding, for research, which is obviously, so, crucial as this is just like a terminal disease and you know, we have a couple meetings with them once a year to check in. Let them know things that are coming down the pipeline or requests that maybe they take a look at this maybe sign on to it, you know, or this coming march, we'll all go down to DC and everyone from all of the States kinds to go down. It's called the Hill Day and everyone goes and meets with their members of Congress, or their state senators and just has a little chat and check in and like, a refresher of like, Hi. We're still here Alzheimer's. Still a thing. Here's the legislation that we can, we can

Fran McInerney:  Sign off on to make a little bit of a better place, you know.

Katie Wilkinson: Yeah, I love that. What a I love it. You and your mom were like we need to get involved, we need to do something. And now this is like a very tangible output of that. And can you talk a little bit about some of the legislation or…

Fran McInerney:  Yes.

Katie Wilkinson: research that is coming down the pipeline? That you know you might want to talk about on Hill Day or is just sort of on your radar in general.

What is the ENACT Act?

Fran McInerney:  Yes, so one of my favorite pieces of legislation this past year, was the enact act, and it is all about equity and neuroscience research. And the need to go into every community and have all members participate in research. So we were lucky living near Philadelphia, like just across the bridge, there's various hospitals, universities teaching facilities, research centers, things like that. So my dad could very easily participate in research which he did while he was still alive and even afterwards because we donated his brain, so keep it going but that's not always possible for people. We're very lucky once again being so close and proximity, my mom being a nurse, having flexibility with her job to take him back and forth, having a car, all of these things, so, This piece of legislation was really looking at. How can we reach communities that aren't necessarily?

Fran McInerney:  Being, you know, have the access to participate, which is great because, you know, one medication, or one treatment, might not work for everybody. And we really do, of course, want this to work for everybody because this is just like a horrible thing.

New Alzheimer's drug could slow disease

I mean and the other thing that is very exciting is all the lakenemob research that's coming out and the fact that the FDA recently approved it's this is for individuals who are in the early stages of all timers and this drug kind of slows down the progression of the disease. So while it's not a cure, it is definitely you know, just giving someone a little bit more time, I believe there's a couple other things coming down the pipeline but liberty to say right now, um, but there's no, there really is. There's like other things coming on the pipeline, and this is a really great first step in a direction, towards a more effective treatment or cure, no matter what state you're state. You're in, in terms of disease,

Fran McInerney:  But very exciting.

Katie Wilkinson: Yeah, I mean that's amazing like that's yeah. It is very exciting and you can tell that, you know, your eyes light up that's meaningful to a lot of people and families. Especially this medication. Yeah.

Fran McInerney: Yeah. Because right like you know you you get a diagnosis and you're just like well best of luck, you know what I mean? They're there are some things there are some Drugs out there that will slow things down a little bit, but they're not stopping anything. So it it's,…

Katie Wilkinson:  Mm-hmm.

Fran McInerney: you know, here's kind. It's you're just getting a death sentence. Basically a long-term progressive death sentence, and it's awful. Like, there's just no hope and so to have You know, funding go towards research and then to see some like something fruitful come from it is is really great for anyone who has this disease or just like, you know, looking towards the future.

Katie Wilkinson: Yeah, I mean that's what I was going to say. Like, even this medication and of itself is very exciting and hopeful for people. And A reminder that like the funding that's going towards this research isn't for nothing. Like there is you know there's potential for more here which is exciting.

Fran McInerney: Right. I think I don't obviously I'm honestly I don't have to fax and stats in front of me, but I think is it by 2050 that Alzheimer's is Alzheimer specifically or dimensions in general like bankrupt Medicare just with the aging populations. So we kind of needed something to It it is and…

00:20:00

Katie Wilkinson: Yeah, that's an alarming statistic, yeah.

Fran McInerney: like like that's actually gonna be like me at that point and like Oh my God, you know I don't have any children but what if I do like what is that falling? Like what's falling to them, you know, Like, let's look for the unfortunately not so distant future.

Katie Wilkinson: Yeah. Yeah. That's a scary statistic. I actually don't know that. I knew that and I'm glad that you shared it. Yeah.

Fran McInerney: yeah I was talking to really sorry real quick on that second to my uncle he teaches a nursing class and…

Katie Wilkinson:  Of course.

Fran McInerney: he's like Hey do you have any like videos on you know, Alzheimer's that you think I could kind of incorporate into my lesson just because Powerpoints are awesome but so this video you know and so I was bringing up a couple of things and I found this one video and I realized this from like 10 years ago. And unfortunately like nothing is really changed there, except for the number of people impacted, I think it was like five million in this video and now it's up to six million. You know, tank like Oh my gosh. These numbers just keep keep climbing and I think this is a 10 year difference. Oh my gosh, an extra million people oh,

Katie Wilkinson: Yeah. It's not great. Yeah, those compounding numbers and Yeah, I mean thanks for sharing about what you're excited about and what you know is coming, is there anything else? I guess I'd love to talk about, you know, the financial side of caregiving that sort of our like, aim in this podcast and…

Fran McInerney: Yes.

Katie Wilkinson: It's just really uncovered, you know, these hidden costs of caregiving. But before we jump into that, I just want to You know, make sure that we've like, covered the work that you're doing. And also, if people want to get involved in, you know, the Walker and the Alzheimer's Association, like any of these things, you know, where, where can they start?

Fran McInerney: Start well one reach out to me because you know if you live in New Jersey I might know a guy. No let's start at the end Just the Alzheimer's Association in general and you'll be able to Google Walk or look up walks near you find out who to reach out to in terms of the Alzheimer's Impact movement, I mean and then just use an individual can always just reach out to your Congress person or you know, whoever and they can kind of guide you…

Katie Wilkinson: You.

Fran McInerney: if you need like financial assistance, medical assistance, things like that. and chances are, you know, The woman who I am in contact with, in this office. If you reached out to somebody there, like they've probably heard of us at some point because it's very large and loud group of people

Katie Wilkinson: That's good. We need that.

Katie Wilkinson:  I yeah, I mean I would love to talk about sort of your experience when you were caregiving. Many things with specifically about, you know, finances. And if you're comfortable with love for you to share a little bit about how caregiving and the cost of caregiving impacted your thoughts around, like spending and saving and just future thinking. It's not just the small question. Yeah.

Fran McInerney: Okay, that's a let's like a loaded question, right? Okay. So let's think how do we want to start? So I would say the first thing, the first piece of advice that we were given when my dad was Given this told us diagnosis, I was about the five-year. Look back. Are you familiar with this at all? Yes. Okay.

Katie Wilkinson: Yes. And if people want more, we've got a blog post about it.

Fran McInerney:  Okay, great, honestly. That was like the biggest thing, they really get him off of anything that could potentially be an asset. Beca3use when you go to look for long term care, they're going to be looking back at anything and everything financially that could be related to you. So that was probably the best piece of advice that was given to us. Unfortunately, with this disease, like You know, you could have 10 okay years and then you have to go, you know, receive long-term care. You could have three years and then maybe you said they need long term care and that three years doesn't necessarily fall into that like five year. Look back period. So do that immediately get get off the assets.

When someone applies for long-term care Medicaid, there is an asset/resource limit. To be eligible for Medicaid, one cannot have assets greater than the limit. Medicaid’s five-year look-back period is meant to prevent Medicaid applicants from selling for less than true value, gifting, or otherwise transferring assets to meet Medicaid’s asset limit.

Fran McInerney:  Yes, so my I think, well, I think a couple people said it, but specifically my one aunt, she is a physical therapy assistant and she works with the older population. And so just from her job, you know, conversation she's been with the people that she cares for there. She picks has picked this up along the way and related to us.

Katie Wilkinson: Awesome. Yeah. I mean That's definitely a good place to start.

Fran McInerney: which we were very Yeah,…

Katie Wilkinson: Yeah, as

Fran McInerney: we were really fortunate, you know, with that.

Katie Wilkinson:  Yeah, anything else. Like when you first started caregiving you got this piece of advice. Was there anything else that really influenced? Like how you got care for your dad or how you thought about spending money?

Fran McInerney:  Yes. Okay. So, caring for him during the pandemic. financially, we were okay, and I say this in that I was able to work from home and so where my dad was at, in terms of the disease meant that he still, did he needed someone to be with him that he didn't need intensive medical care during the day. So we didn't need to hire. Anyone else I could stay home with him and then my mom being a nurse, she was able to work her schedule. So that she would also be home specific days during the week. The weekend was kind of like other people come over and help out, you know, so that wasn't, you know the priority, but we were really lucky and that we were able to delay some of the bigger financial costs.

How caregiving costs sneak up over time

Fran McInerney:  in terms of saving and spending, I think Can you can you really because it's hard because what? I think you don't realize until afterwards until you're really in it. Is that there are all of these very little costs along the way. That.

Fran McInerney:  Add that add up over time, right? So you might be getting new kinds of clothes, you might be switching from regular pants to some type of adaptive clothing, like adaptive pant or shirt and those are Not five dollars, you know, at target, they're gonna be a little bit more expensive because of the type of clothing that it is. If you need certain types of hygiene products toileting products, those suddenly are an added costs. And I don't, I know we didn't know how to save on it, but the best. I mean, the best thing that happened to us is that we had family members who said, Okay? We will be at some at one point, we will be buying this for you, the supplies for this each month, we will be providing this for you for the season which some of the costs were kind of split up. But we never asked people that was the kindness of others coming and offering to help us saving. And like I don't saving was this. We got lucky with

Fran McInerney:  Being able to, you know, work through. And I'm not saying that didn't take a toll on us, mentally or physically or emotionally, but financially, we were able to save during the pandemic because we were not really going anywhere. I was able to work from home, my mom was able to manipulate her schedule. So we we did kind of get lucky there. Actually.

Katie Wilkinson: Yeah, I don't think of the grimace. I mean everyone's A situation is so different, you know, and and ways that you were blessed, Other people are not in ways that other people are blessed.

Fran McInerney: I know. I think it's like the guilt of knowing You…

Katie Wilkinson: You are not like, it's

Fran McInerney: how intense caregiving can be and to feel fortunate because you know, that that's not the case for others and just how, like, Oh my gosh, how are you doing this? How are you handling? This and just wanting honestly like almost like she could help you because I know that it can be so intense. Like, Oh yes.

Katie Wilkinson: Yeah. Yeah. I mean there's intense as a quick plug forgiver, something that we're working on and it's young right now. But we're working on a marketplace and for people to, to save on the cost of caregiving products and services, and put them all in one place products that are vetted. And then we're negotiating, like the best possible discounts that we can get for people. Again, it's really young right now but we hope that that can be a place that people can come and, you know, and save on some of these caregiving expenses. and, like, the little things like new clothes or, you know, different toiletries, like, you know, the stuff that adds up over time You mentioned.

00:30:00

Fran McInerney: Yeah.

Katie Wilkinson: That people were generous and, you know, chipped in and brought things over and bought these things for you and that you guys didn't ask for this help. I guess looking back, is that something that

Katie Wilkinson: Variances. Like,

Fran McInerney: I don't know. I think. Once you get into the mentality of like I'm just being this like strong person that I can't I can I'm gonna figure it out and do it and no one else is going to have this burden on them. I don't know that we would have asked. Or if anything, it wouldn't have been for physical things. It would have been like, you know, how we need help. You know, can you come over and stay or

Fran McInerney: Yeah. How could you come over and maybe give us a little bit of time to go to the food store or something? I don't think we would ever send someone to go to the food store. Maybe I mean. Unless, but it would. Yeah, we're probably would have come from somebody else. Like, How can I help you? And then be like, Okay, here is the list of stuff. But also, here's my credit card because I'm not gonna like, force you to buy us groceries. Even though, Thank you for the taking the time. So it's one listening that I have to do, like, I'm not gonna Oh yeah.

Katie Wilkinson: Yeah. And are there any ways that people offered help that was like easier for you to accept that help like questions they asked or…

Fran McInerney: No, I don't think we would have asked for it. No.

Katie Wilkinson: ways they showed up for you.

Fran McInerney:  um, yes. Okay, so my grandma was still alive at the time and so it was very easy for when she like Oh, you know let John come over and stay for like a day or two to be like. Yes, absolutely.

Fran McInerney:  Because you know, this is your son and we want the two of you to have time together. So anytime that she would offer for him to go and stay. If it was just overnight one, it was good for them for that time. But then also for us, it was just like cool. I don't have to worry about any like, getting up at a certain time, making sure like I'm up getting breakfast or picking up dinner or whatever. So kind of would work out both ways.

Katie Wilkinson: Yeah, I mean I've I found sort of the same when someone says, You know, let me know how I can help. That's like, I don't know, I can think of a million ways, I'm not gonna ask you but if someone's like, I'm bringing over dinner and maybe that's a bit Invasive,…

Fran McInerney:  Yes.

Katie Wilkinson: but just doing and always felt more. Useful. And…

Fran McInerney:  Right.

Katie Wilkinson: then like, putting the work back on me.

Fran McInerney: Yeah, I remember when because at some point, like them coming over to help, like, doesn't help. So, yeah, it does. You know. You want the other person to take the initiative even though I think they don't want to step on your toes and…

Katie Wilkinson:  Right.

PSA: How to *actually* help a caregiver

Fran McInerney: then take the initiative. So, for anyone out there who wants to help a caregiver, I will tell you, find a way to give them back some time or it's just make their day easier. Meals, great,…

Katie Wilkinson: It.

Fran McInerney: have someone come over and clean their house. Awesome find, you know, offer to come and take your loved one for a drive. Of course, if they're not comfortable, you know, going in the car. That's a whole other thing. But find a way to give them back, just like a little bit of time so they can breathe and maybe reorganize their thoughts.

Katie Wilkinson: Yeah, I love that. I love that PSA to people that might want to help the caregiver.

Fran McInerney:  Yes.

Katie Wilkinson: You know, you mentioned you and your mom were home during the pandemic which you know, may have been a blessing or a curse but it did help you like delay. Some other sort of major financial decisions.

Fran McInerney: yeah, so that would be whether or not to have Well, to go from having someone, come in part-time for care, for my dad, to coming in full-time and possibly having like around the clock, nursing care and whatever capacity that would have been at the time or placement into a memory care facility that was where two very big decisions that we were able to put off for a little bit. I did eventually have to go back into work, so we wound up. My mom was still able to kind of manipulate her schedule.

Fran McInerney:  Our information manipulated work her schedule out so that she you know would have these very designated days home and we were able to find our neighbor up the streets, our news up the street, their son wanted to go into nursing school or he was in the process of going to nursing school, something like that and he actually came down and then would stay with my dad during the day once again, like you didn't need that intensive. Medical care yet but he did need his meals prepared. He didn't need to make sure that you know, He wasn't gonna walk out of the door, out the front door, possibly in the winter without a coat on or anything and

00:35:00

Fran McInerney:  Or even walk out anytime and just get lost, make sure he's drinking throughout the day to the best, you can to, you know, encourage him to do so or even just having someone there to talk to or listen to music to or watch something on TV. Like you did that kind of companionship competing care type of bit. So we had that for a little while and then what I heard happens and it did happen was that there was just this like snap moment where you're like, Oh this we can't do this anymore. And it's, this is not a, you know, too much and it really did kind of happen like that. And then we had to suddenly make the decision between 24 hour care or, you know, a living facility and we chose to go with living facility.

Katie Wilkinson: How did you make that decision? I can't imagine it was an easy one.

Fran McInerney: um, well. The steps in the house, I told my mom. I was like, I can't find him at the bottom of the steps. It's gonna fall down and I think even we would have never been Feeling. Okay, you know. even if there was someone there 24 hours a day, Like that. It's nope. I couldn't do that. I know, I can do that. And then my mom was like, I don't know if I could sleep knowing that there's just someone awake in my house 24/7. So, I made more sense to have the to move into the living facility.

Katie Wilkinson: Yeah, that makes a ton of sense if you remember and if you feel comfortable, can you talk a little bit about the cost of of that facility and and your mom both still working so put it maybe you paid out a pocket but just like how you how you managed the cost of a living facility.

Fran McInerney: so, We okay. So my dad had, you know, retirement account. So, that was, what was being pulled for. To cover the, you know, initial costs and that was going. What was going to be used for? However, long it could be used while he was living there. Unfortunately. And I kind of alluded to this earlier. He moved in on a Wednesday and he was coming home, the following Thursday on hospice. So we did not have A long-term experience with long-term care. So I really, I can't speak too much to the cost for it and managing that or navigating it. I will say my mom and I had a couple discussions, I mean, some some things are pulled out of his retirement account ahead of time for other other costs.

Fran McInerney:  But just given the state of the economy right now versus a year and a half ago, two years ago, it's very different. She was like I you know, the way the stock market is because my dad had a 401k then verse now and the losses that have, you know, taken, she's like, I don't know, actually, what would have happened? Long-term if we had to pull from that account, given the state of the economy that right now, at this time. So we also got a little bit lucky there as well.

Katie Wilkinson: Yeah, yeah. I mean, I think it's good to, to count your blessings and

Fran McInerney: I wish it was given better advice. I'm just Sharing…

Katie Wilkinson: No, I think this is useful like again I think you…

Fran McInerney: what happens?

Katie Wilkinson: every person's caregiving experience is so different, but I also think there's like a lot of relatability you know, this across the board. I think it's useful. I don't think it has to be advice. I think it's just helpful for people to hear, you know, how different people are managing this experience. And you mentioned you guys for pulling from your dad's retirement account or accounts, and which, of course, is really lucky. I'm curious about just sort of like, your systems for managing money between you and your mom did you know, use an Excel spreadsheet or like How are you managing this like on a logistical standpoint?

What’s your system to manage caregiving expenses?

Fran McInerney: Oh, it was very old school. It was very pen and paper and comparing notes. I'll just, I me in Excel, we're not friends and my mom and Excel have never met. I'm not, I don't, I don't think so very pen and paper, and very checking in with one another Like we're going to balance the checkbook type of thing. The physical checkbook together. Yeah.

Katie Wilkinson: Yeah, is there? Like, did that work for you? Or is there a different way? You would have preferred to do it? Or if you're like not in the thick of caregiving, you know,

Fran McInerney:  yeah, I think it was just kind of like well this is just always what happened and I'm not going to like figure out a new system right now, because if the system isn't broken, I'm not trying to fix it because I've got other things on my mind, if there was something that was like specifically for someone, in a long term, Care situation that made it easier for people to track their finances and expenses. That would be fantastic. I would totally endorse that but I was not going to create that system.

00:40:00

Fran McInerney:  Yeah, no definitely very, very paper friendly. I mean, we do online banking, but they're was like, you know, one of those Ottomans that is actually like it contains the files we had one of those and, you know, you know, where all of the files were and all of the paper goes, like I'm not joking. It was very, very paper happy.

Katie Wilkinson: And that's good. I mean if it works, it works, that's

Fran McInerney:  It's, that's what it was.

Katie Wilkinson: You know, useful in the caregivers actually you know, want and love to use and make it easier like if people back time and…

Fran McInerney:  Yes.

Katie Wilkinson: energy and So you're not spending your time, taking their papers or like, managing a million accounts, or whatever. That's our, that's what we're on a mission to do here.

Fran McInerney: which yeah, no, that's, that's really good because I mean You look on the younger side I'm gonna go with that. You don't? You don't like my mom's age.

Katie Wilkinson:  Thank you.

Fran McInerney: Um no. But I think finding like better tools just given tile technology is and people our age and younger just being much more tech savvy than like paper and pencil savvy like having an app would be amazing because that's just how we function at this point. Right? I mean I do love my, you know, write down planner, of course, right. It's January, everyone buys a new planner, but really like right, you know, my phone is where everything is and what I'm gonna check in on. So to have that available, especially as people, our age are now taking on caregiving roles, more and more for their parents, that was going to look for things that like an app or something that's gonna help them out.

Katie Wilkinson: Totally and yeah, right? There's this millennial. Section of people's millennial generation is. Is becoming the bulk of caregivers at this point. So, I think we will see a shift,…

Fran McInerney: Yeah.

Katie Wilkinson: hopefully to products like givers away from pen and paper. But again, whatever system, Works works.

Fran McInerney: Right. Oh my gosh, right. If you have a system, I'm like I do not want to throw around in that.

Katie Wilkinson: If you could go,…

Fran McInerney: No, no.

Katie Wilkinson: Like, back to the beginning. You know, people end up in caregiving roles. Unexpectedly. And what what would you have told you or previous self or what do you wish you knew at the beginning of your caregiving journey?

Fran McInerney: um,

What would you tell your younger caregiving self?

Fran McInerney:  I mean, I guess at the end of the day is that you can do it. You can, you can do it. It's going to be hard and you are going to cry and get very frustrated and upset, but like you really can do it. And as corny as it sounds, at the end of the day, it is going to make you a different person.

Fran McInerney:  I mean, I can't speak to anyone else. I don't want to say it made me a stronger person, but it did make me a different person. I think it has put me on a different trajectory than what I would have thought, you know, 10 years ago for sure. I did not think I would ever be in this space. Like that was definitely not on in the plans, but here I am and hopefully this experience that I had with my dad will be of benefit to someone else. Now maybe it'll just make their experience a little bit easier or maybe, you know, talking to Congressman Kim, will influence legislation to make caregiving easier make various drugs or treatments more accessible to people or at a lower cost. Or I don't know what at this point, but, you know, it will just make you with different person in a good way. Hopefully. Anyway, hopefully

Katie Wilkinson: Yeah.

Katie Wilkinson: Yeah, I mean I think that's like Yeah I think all of life is learning and and so if you can take I hope you know. I hope it made you different and in a good way and…

Fran McInerney: Yes. Well,…

Katie Wilkinson: As you learn.

Fran McInerney: it just I mean yeah. Ever as you learn and hopefully in a good way because right this is like an all-encompassing thing as I said before, kind of before with like even just a little costs that add up everything kind of adds up and so it really does take a mental physical toll. And for others, a real financial toll on them. It's a lot of people wind up in the middle, the middle of the group, right? Like I remember taking a course and we were talking about care and the woman there she was talking about. Oh yeah. Like the people like, you know, with the bucco bucks their facilities. Oh my God. Beautiful amazing. The chefs make their favorite meals from their entire life. It's wonderful. And then you go on like the total opposite end of the spectrum. And I've seen facilities like this and it is awful and it's, you know, just people are toss there because they don't have the financial access, they don't have the resources and it's terrible.

Katie Wilkinson: Sure. Yep.

00:45:00

Katie Wilkinson: Yeah, and I think there's I think there's also a Like an education piece, it's missing. Also, about like what kind of financial support is available to people or, you know, programs reimbursements that that might help them? they're not only is it like access it's like access to education which I think is

Katie Wilkinson:  a piece that's also. Missing is like There are programs that can hopefully be helpful to people and discovering them.

Katie Wilkinson:  For qualifying for them, you know, can be hard and not knowing that they exist.

Fran McInerney:  I would say Qualification is absolutely hard. I mean, Yeah, as you said there are definitely, there's definitely state-run programs. You'd have to check with your individual state but the financial limit is often relatively low. So, You know a lot of people don't qualify my dad did not qualify for any of these things. Actually in the We talk about advocacy Last fall there was a panel it was Congressman, Kim Congressman A common Watson. And I forget who the other man was and they were talking about, you know, finances for the state of New Jersey and things like that. And one of the questions that was asked, was like, when you fall into this middle-income group, right? You know what Where is your help? And it wasn't really ever answered because it's just not there. So Oh, the financials.

Fran McInerney:  All right, the education of what is available and quite frankly, what is not and having that information being able to make smart decisions with that.

Katie Wilkinson: Yeah, yeah. And It's a lot of things you've learned in the past, you know, years. And I think this question might be a little bit redundant…

Fran McInerney: Yes.

Katie Wilkinson: because you just shared, you…

Fran McInerney:  Oh no.

Katie Wilkinson: what you would have said to yourself.

Katie Wilkinson:  A couple years ago but we like to ask everyone to close out these conversations. You know, what's your number one tip for other caregivers and financial or otherwise?

Fran McInerney:  oh, number one tip, I don't know. I think any of like five

Katie Wilkinson: We can do, we can do five.

Fran’s number one tip for family caregivers

Fran McInerney:  No, I'm not gonna come up with five. My number one tip would be and I know we've talked about this but look for the people who can help you. and,

Fran McInerney:  There's people that can help you in different ways. You know, and obvious way someone could help you is like, bringing over dinner as you mentioned right? Like that's huge, it's wonderful. And that's where people, you know. A lot of people find themselves but then you might have a friend they call or you know, an aunt as myself you know who through their job has learned about the five-year look back you know or maybe something else financially related that they be able to help you out with or maybe you know someone who's actually really good at fixing toilets or something. You know and they'll be able to help you out there and maybe not a few dollars off when you need something fixed and all of it, kind of adds up and it's helpful in different ways, you know? So look quite like you know except help but then also look for the people who might be able to help you because it could be unexpected.

Katie Wilkinson: Yeah, I love that and it reminds me of that Mr. Rogers quote that says Look for the helpers. I don't know.

Fran McInerney: No. Yeah.

Katie Wilkinson: The whole quote is it's about like the world's a disaster but look for the helpers and…

Fran McInerney: Yeah, it's true.

Fran McInerney: And and you do need to support around you and I don't I know what you're talking about. I don't like Mr Rogers but it's just so true.

Katie Wilkinson: Totally. Yeah.

Katie Wilkinson: Yeah I think it's a good quote. I love it. If people would like to find you online and…

Fran McInerney:  Yeah.

Katie Wilkinson: follow along with, you know, the community work that you're doing and where can they find you?

Fran McInerney: Oh you can find me on the good old social media, primarily Instagram and Facebook. I my millennial self can't quite grasp tiktok yet. I try. I try so hard but you can find me at Fran, the millennial caregiver. All one word.

Katie Wilkinson: Awesome. We we will will be sure to include your links and, you know, wherever on all the different platforms so that people can find you there and…

Fran McInerney:  Thank you so much.

Katie Wilkinson: I really appreciate your Time and like, willingness to share so much about what you're working on now. And but also you your dad's story and your caregiving journey, it's meaningful and I think helpful to a lot of people, so thank you for joining us.

Fran McInerney: Well, thank you for having me and I do hope this help somebody.

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