Caregiving for a Loved One with a Disability with Insurance Agent Mario Racanelli

In this episode, our guest is Mario Racanelli, an insurance agent based in Eau Claire, Wisconsin, who focuses on Medicare and other insurance products in the senior market. Mario often gives back to his industry by supporting others, presenting continuing education classes, and giving advice to fellow agents. This conversation focuses on Mario's experiences with his brother John, who lived with Down syndrome, and his family's caregiving journey. He discusses how his family members stepped up to care for his brother, the toll it took on them, and lessons learned and advice for other families in this scenario.

Transcript

SPEAKER_00 0:00

Who would take care of your loved one if they couldn't take care of themselves? You know, many of us know that we may have to be a caregiver someday, and that care comes in all shapes, sizes, and formats. Today's story is a little bit different. So welcome to the in-between years, where life doesn't come with a manual, but we've got the mic, and we're here to talk about aging parents, long-term care, and the conversations that no one wants to have. I'm your host, Holly Westerveld, and our guest today is Mario Racchinelli. Mario is an insurance agent in Eau Claire, Wisconsin, who focuses on Medicare and other insurance products in the senior market to ensure that those seniors have the advice that they need to make the best decisions for their situation. Mari also gives back to his industry by supporting others, giving continuing education classes and advice to his fellow insurance agents. Mario has a heartwarming story to share with us today about his amazing brother John and how he and his family stepped up to help when his brother's health declined. So, Mario, thank you so much for joining us today and for sharing John's story with us. And before we jump into that caregiving story, I would just love to hear a little bit more about John. So if you could tell us about him.

SPEAKER_01 1:19

As a family, we're very blessed. My brother Johnny, born a down syndrome child, was 15 months younger than me. And so my whole life, he was just always been there and a very kind and gentle soul. And we feel in our family that John actually was needed. So we were blessed to have this child in our family. And when I say child, my brother did pass away at age 61, but to us he was a perpetual child forever. So but our family actually had to unite around him because he did end up in a care situation where I don't know that we ever planned for it. Matter of fact, we did not plan for it. It just kind of happened. And there's no school or training for that. You just start to do things. But anyway, very kind young man, and we were blessed to have him.

SPEAKER_00 2:08

Oh yeah, uh he sounds just like a wonderful joy to your lives, and I'm glad that you had the blessing of having the time that you had with him. So, you know, I understand that he's passed now, but could you talk about, you know, how the journey into caregiving started for you and how you came to to have the responsibility or the primary responsibility of caring for John?

SPEAKER_01 2:33

Well, I'll have to give credit where credit's due. The primary care fell on my sister Heidi and my mother. Okay. So retired neuroscientist nurse, but she was older. I believe my mom would have been probably around 86 or 87 when the need was there. So physically to turn and move my brother just was a challenge. And we were very blessed that my sister Heidi had him in her home, and so we got to have John there. But the care journey really started, it was kind of tied into the pandemic. And if we remember correctly, during the early days of the pandemic, they were not allowing loved ones and family members into care facilities.

SPEAKER_00 3:11

Right.

SPEAKER_01 3:12

And my mom has always had my brother since the day he was born. He's never lived outside of the home, and there is no way that she was going to allow him to not care. She was not going to be separated from him. And that's kind of where our siblings stepped in. And my sister told me, she worked full-time, I worked full-time, and I had other siblings that were working, but we had to find a way to make our schedules work to help take care of them. My brother's care, he failed. His last two years of life, he was bedridden. And for anybody that's ever dealt with somebody that's bedridden, all the care happens and everything happens in that bed. So they're they're just never getting on that bed. So in order to bathe him, to dress him, to shave him, to change him, because there's toiletry issues involved too, it all happened there. And if you would have asked me maybe five years before my brother needed this level of care, if I would ever do CNA work, the answer would have been no, I would never will. You couldn't pay me enough to do it. Well, the circumstances changed, and all of a sudden, my my mother who did have the background, my sister, my other brothers and sisters, we all stepped in, and next thing you know, we're all CNAs except for when not getting paid.

SPEAKER_00 4:29

Yeah.

SPEAKER_01 4:30

In the dollar sense, but in the sense of our hearts, we were well paid.

SPEAKER_00 4:34

Yeah. Caregiving is absolutely a journey of love, you know. And we do those things for our loved ones when we wouldn't do them, you know, as their career, you know. And it definitely um big shout out to all the CNAs out there for the work that they do to support folks every day. Because that is hard work. But yeah. So so tell us about you said, you know, he he was better than you, that lasted like two years. That's a long time um for you and your family to support. Did you work in shifts then to support him or help him, or did you how did you divide those responsibilities among your siblings?

SPEAKER_01 5:12

So we actually did have to work really in different shifts or different times of day because it cares 24 hours, it doesn't end. Okay. So we did. I, as an independent channels agent through Midwest Select, and my agency that I worked with, they're wonderful. So they understood the circumstances and they allowed, you know, our my schedule to be handled by me. And I did, and I could I can control my block at times with clients, and then the office wasn't that far from where my mother and sister were residing, and my brother, of course. And so I could come over at different times a day to help. My sister, she worked from home, but she also had a full schedule and had to be accountable, so she could schedule breaks. And I had a couple other brothers, my brother Don, he could come up and step in where somebody else couldn't fit in. And fortunately, my I had a sister out in South Dakota. Carol, she would come back and actually stay for a couple weeks at a time. But it took all of us, and we all had to, I had to definitely take less appointments and I get paid when I see people. So your income does take a bit of a bath on that too. But it was no matter what the dollars are, it's always worth it. But we weren't prepared financially necessarily to cover those costs of hiring in-home health care, things like that. So we had to become the in-home health care ourselves.

SPEAKER_00 6:30

Right. And I mean, I know, you know, you look back and you're like, boy, I wish we would have seen this coming. I wish we could have planned financially for how that was going to hit. I wish we could have planned for the time that it was gonna take. I know. I and nobody I've ever talked to would ever go back and do it differently necessarily. I mean, they would always choose to take care of their loved one. But but those conversations are hard. And I think we don't always talk enough about the burden on the caregiver. You know, you you have already all the emotional burden, you know, of watching your loved one go through this. And then you have the physical burden of, you know, of trying to do those things you were talking about, trying to get them bathed and trying to, you know, that's physically challenging. And then on top of that, you have the financial that comes into it. And, you know, it's not just the not working, I'm sure, you know, they require additional things and support that I know gets challenging.

SPEAKER_01 7:25

And it really does. And even like it's more than just the what happens in the bed, there's other concerns there, too. It's bed sores. So there's a rotation period constantly and shifting and getting pillows in there. Then, like I said, there is no training for this. We at least on the civilian side, there is for professionals. So we had to learn that again. I credit my mother, who was a neuroscientist nurse, so she still has the skills, she's cognitively strong, she still is. So that was a blessing. But yeah, there's a lot more to it. It's not just simple walk in and start doing it. Yeah, there's a learning curve, you're gonna make mistakes, we're learning from those mistakes, and just keep going on. You have to just be grateful that you have the opportunity to serve them.

SPEAKER_00 8:06

Yeah.

SPEAKER_01 8:07

And we did, you know. Yeah.

SPEAKER_00 8:10

I just I want to take just a second and give uh an acknowledgement to your mom. She must be an amazing individual to be not only that sharp in things and in caring for her son, you know, in in her later years as well, you know, to be sharp, to teach all of you how to take care of him. And um, she just must be an amazing lady.

SPEAKER_01 8:30

And so she is, and she's very gratified that her kids finally learned to listen. I didn't I bet so. I didn't do so while I was a teenager, but I figured it out as I got older.

SPEAKER_00 8:40

Yeah, yeah, that's great. That's great. So let's tell me a little bit about how those conversations among your family happened as you started figuring out, like as you know, he came to be not able to leave the bed, and you had to make those decisions on who's gonna do what and things. I know that can oftentimes cause tension, and it sounds like your family, you know, was able to navigate that successfully. But tell me about the conversations that that you had or didn't have that wish you would have.

SPEAKER_01 9:12

We I don't know that we actually had a scheduled sit down. Here's your turn, here's my turn. We just saw a name, we all started to fill in. We were kind of like a melting ice cream cone, for lack of better words. It just started to melt and we just started to be present in whatever needed to be. But our also concern for us was by mom's age. We needed to have her bowl of salt of my brother, and we had to do our part to see to it she could do that, but she could accomplish that goal, and so we just communicated. Can you do this? If you're gonna be out of town, let us know. We just started to fill in the gaps, and I don't even know if we scheduled it to be honest with you. We just started doing it, and we were very fortunate because we didn't have bickering between the siblings, we're all adults, the work had to be done, and everybody was busy, so we didn't use the excuse I'm too busy. We we just were busy, but if you want to get anything done, always give it to a busy person, they will find a way, and that's really what happened in my family. Everybody, all my siblings were amazing. Of course, my mom was leader of the pack, or still is our pack leader. We're very fortunate to have a now 91-year-old mom. Yeah, we're still very cognitive. Um, so but it was a journey. I think, though, going back to one of your questions, if we could have maybe looked at it differently or planned, I think we probably would have been better trained ourselves, and maybe we would have set resources aside more significantly, so that maybe we could have hired professionals to come in. Yeah, but we doubt. We didn't do that. So, because we didn't do that, it was just good old-fashioned loper sleeves, go to work, get it done. But planning, the lack of planning for this life event was our challenge. We when my brother was confined to that bed, we expected a life expectancy of about three months.

SPEAKER_00 11:01

Oh wow.

SPEAKER_01 11:02

It was 24 months, a little bit over 24 months. So we misinterpreted the tea leaves, so to speak. And uh and then when you do have a person in a situation, especially when they're my mother was his legal guardian, you do have a social work through element to the care because hospice is involved, and hospice is not intended to last as long as it did, but when they would come in and evaluate, and they would check for the bed sorts of stuff. So we really did have to be on our game because they could have pulled that person from us. Knowing we knew that we didn't never want that to happen, so we just did. I'm very good at shaving somebody in bed, learned how to do that. So I used to and my brother, I was blessed though, because as a younger kid, I would always shave them anyway. And then as I got more and more busy, other siblings would do that. But to shave my leather was not a big deal for some. Yeah, we just did the electric razor and stuff, so wow, but anyway, we had a little bit of that kind of training.

SPEAKER_00 12:01

That's hospice is a wonderful organization, but and I know I'm sure they provided tons of support, but I can't imagine the emotions and the fear that would come, you know, if oh my, you know, what if they find a bed sore and they take him from us, you know? I and especially during that time with the pandemic going on and all those things. I that must have been emotionally difficult.

SPEAKER_01 12:24

Well, it is emotionally challenging because we know what the what-ifs are just because of the horror stories we've heard from other experiences. But we truly, and again, the engineer on this, I have to give credit to my mother and sister. They were so good at making sure this rotation happened because during the day I could be there, I wasn't always there at nighttime.

SPEAKER_00 12:44

Right.

SPEAKER_01 12:44

You know, I do know prior to my brother failing, he used to be ambulatory, and he would sometimes fall. He couldn't get up. We didn't know my mother didn't have the strength, and so we would have to come in and physically get him up off the floor. And that didn't happen a lot, but we learned how to move a person correctly so they we wouldn't injure ourselves. The work doesn't get done the way it needs to be done. So we're all very good at learning how to be careful not to harm ourselves so that we could have my mother accomplish her goal while living my daughter.

SPEAKER_00 13:17

Yeah. I and I can only imagine what a gift that was to your mom to to be able to keep him with her, you know, for his entire life. And you know, that she fulfilled. I I'm sure as a mother myself, I can feel that you know, she fulfilled her job for him, you know, with your help and support. I that must have been such a gift to her.

SPEAKER_01 13:42

Yeah, it really was. And you know, whenever you give something in life, I don't care who you are, what the circumstances are, you always are gonna get it back. Yeah, you know, so it's we got it, we got back, we got paid tenfold in this just out of my mother's gratitude of accomplishing that her son Johnny was able to go peacefully without anxiety. And if he did have anxiety, we didn't know it. As I said, he was a down syndrome child. But you know, they have a naturally nice, loving, disposition. As he did start to fail, well, that changed too because the cognitive stuff even changes more, and sometimes you know, we used to call him grumpy, but that's because he got grumpy. But that's okay. He left me in the bed for two years, I'd be grumpy too.

SPEAKER_00 14:28

Yeah, I can imagine. I can imagine. Oh. Wow. So tell me, uh shifting gears just a little bit. Uh I want to talk about the industry. And, you know, I know you work in the industry, you work with a lot of seniors, and you know, everything that you do at work impacts people like you at home, you know, taking care of their loved ones or supporting their loved ones, you know, whether that be with the Medicare or with the other types of products you work with, long-term care insurance. I mean, all those things. Tell me what you're seeing in the industry that you think is impacting caregivers today, you know, how it's changing, good or bad. Tell me about that a bit.

SPEAKER_01 15:08

Well, in the industry, in in the specifically in the care arena, the cost is expensive, first of all. And the trained people probably are not really adequately compensated enough for what they do need to do. And it isn't 24-hour day care, so you still have voids in time. So the industry, a lot of people let's say that let's take it away from the Down syndrome for a moment and just go into aging, yeah. Also, relationships, we do sometimes have uh a stroke or a cognitive decline, and we didn't get maybe a long-term care policy of some sort. And when we start to realize when we get to this age, I'm personally on Medicare myself now, I'm 66 and I plan on doing what I'm doing for about nine, maybe 10 years at the outside more. But by the time we think, oh, you know what, I should probably have a long-term care policy. What we see is that the underwriting, the medical data that the people have to give to see if they can get approved to get a policy that'll help us with these costs, whether it be in-home or in a care facility, it's pretty expensive. So the change in the industry we've seen have come out with some new hybrid products where you can do like a single premium deposit, maybe CD money moving into a single premium deposit with long-term care rider attached to that policy, or a Medicaid-approved annuity that can help pay these costs, and it's protected from creditors. So we're not sitting there losing our assets. We can still protect our assets as long as we find the right products and the right people that will counsel us on that. And I as an and I do specialize primarily in Medicare, and I should actually offer more of those products to clients because there are solutions. We just say they're there. We just have to be willing to listen and learn. But definitely you want to, if you feel like it's gotten too expensive, there are alternative care options that you can fund without it really changing your lifestyle at all. And that I have seen in the industry, which I think is a positive.

SPEAKER_00 17:10

Yeah, I would agree with you. And you mentioned those single premium type products. There are tons of seniors that have, you know, some money sitting in a CD or some other account that they're not using or maybe not planning to use. And it's a great way to get some protection and leverage that money that maybe they're not using to live on, but to cover, you know, that expense of the what if they need that kind of care. So that's it's a really great suggestion that you give. And those products are newer on the market, you know, they haven't been around forever.

SPEAKER_01 17:42

And some of those seniors actually have a fear of, well, if I don't use it, I'll lose it. That's not the case. They could they can set up beneficiaries, they could pass it on to family. It's there in case you need it. So it's in case you need it, but if you don't need it, it doesn't go away. It's not like just paying a monthly premium for the coverage, and all of a sudden we pass on and we're out the premium money all those years. We have hybrid plans now that say, hey, if you didn't use it, you didn't lose it, and boom, it goes back to the estate. If how it depends on how they set it up, you know. Yeah, have some. Because those are all customized plans to the individual.

SPEAKER_00 18:24

Right. I I think that is I think that's wonderful advice for people is seek out professional and talk to them about your options because there are options in most cases, almost every case, there is some kind of an option out there for a person. So I think that's really wonderful advice. Well, John, we're John Mario.

SPEAKER_01 18:45

Talking about John.

SPEAKER_00 18:46

Mario, we're running close on time. And I just have one more question for you. And is the way I like to end all of these because caregiving is really a journey, and it's you have said all through answering your questions that you know you weren't prepared for it, you didn't know what you were doing. But tell me, what's one thing you took away from that journey that you were just really unprepared for and nobody warned you about?

SPEAKER_01 19:11

The starting gate, never even knew what it was gonna happen, it just happened. Yeah, totally shocked. I'm not shocked. I mean, I guess we did have some advanced warning. I just did not realize the detail of the burden and the responsibility and the pressure. And I mean, making sure you had their food, everything, hydration. Oh my gosh. I had a technique that worked for hydrating my brother that I could do pretty efficiently, but not everybody could, so you know, we didn't want them dehydrated. I don't even know. That's such a broad question. I don't even know. We were just so many things, right? It's kind of like being in a tornado, you just figured out you gotta survive and you just don't really know what to do, especially if there's no cover. And there is no cover. That's coming, and you just gotta try to survive it. I think had we planned better, I think it's a lack of planning, is probably the biggest shock of all.

SPEAKER_00 20:05

Yeah.

SPEAKER_01 20:05

And we should have known better. We had 60 years to plan for this.

SPEAKER_00 20:09

Yeah. But we don't it's and that's the whole point of this podcast, right? It's the conversation nobody wants to have. And we need to have it because it would help. It would have helped you in your situation, and it would have helped plenty of others if they would have had the conversation ahead of time. Just even about how would it work and how we're gonna pay for it and all those things.

SPEAKER_01 20:30

Procrastination is not your friend. That is great advice. It's not your friend. If you thought about it even once, you do have to get proactive just one.

SPEAKER_00 20:42

There you go.

SPEAKER_01 20:43

Started, just start.

SPEAKER_00 20:46

That is great advice. And I think we will end it on that. Mario, I thank you so much for sharing your family story, for telling us about John, um, and for sharing the wonderful advice from the perspective of a caregiver. So, everyone, please look for the next episode of the in between years coming your way next month. Thanks for listening.