345 SelfWork: Making the Hard Job of Caregiving Easier: A Conversation with Cathy Sikorski

There are some people who can take the most difficult situations and find the humor in them. Cathy Sikorski is one of those people. I met her several years ago at a midlife bloggers association meeting and became an instant admirer. She's written a blog for years dedicated to examining the hard and hilarious life of caregiving, which she's done herself for the last twenty years.

In addition to that, she's a practicing dealing largely in Elder Law and in today's episode, has all kinds of personal and professional/legal advice to pass on to you. She’s the author of several books, the first being “Showering with Nana." Today we’re going to discuss two more that outline very eloquently how to talk to your loved ones about their end of life plans – or what needs to happen when dementia is in the picture: Who Moved My Teeth and Twelve Conversations: How to Talk to Almost Anyone about Long-Term Care Planning. Not the most “fun” conversation to have – but vital ones.

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Episode Transcript

Speaker 1:

Well, you and I have known each other, Kathy, gosh, for 10 years. Maybe a

Speaker 2:

Long, I, I know a long time. We've grown up a lot in the years that it's been, so I'm gonna go Yeah. A long time

Speaker 1:

Speaker 2:

Yep. That's what I remember in that, in Nashville, I'm gonna say. Yeah, yeah, yeah.

Speaker 1:

That huge hotel ...Yeah. It was great. And I have loved your work since, um, tried to have you on as one of the first guests of self-work, and I had no idea what I was doing technically, and I botched it, and I practically was in tears and said, I'll have to have you back on. And six years later, here we are,

Speaker 2:

Speaker 1:

Well, you are incredibly kind. Your first book that I read was showering with Nana. Yeah. And I, it brought tears to my eyes, and I, I just loved that book.

Speaker 2:

Speaker 1:

Well, for those of you who don't know, Kathy Sikorski's work, basically, I mean, she's, she's gone. And I want you to tell your story, but you've gone from being someone who was caring for a lot as I understand it, gone from a family member, a friend who was caring for a lot of people who were getting older and having those kinds of problems to then you earned your elder law degree and, and really have changed your whole life. And so I greatly admire that because it's, it's something where you have said, let me take what life has given me and then be able to have the experience on a lot of different levels, both personal and professional, so that I can really help other people. And I wanted you on, because I think this is so important, um, that we talk about, um, elder care and, um, everything you talk about, you have two new books, uh, that you sent fairly New, who Moved My Teeth, which I, after I read this, I peppered my husband with questions

Speaker 2:

So, so, yeah. I'm so happy that you brought up the fact that my life, what happened in my life, really informed and changed the way I decided to have a career. Yeah. Because I think, especially women, we get very feeling trampled down about what life is throwing at us and how we can't go do the thing we thought we wanted to do, or what we should be doing, or how we thought life should let us do this. That's right. Thing. Right. We feel very trampled by, by caregiving, by caring for our children, our parents, our, our, our spouses or whatever. And yet, it's an expectation that right or wrong, and a lot of times wrong, comes with just being a female, right? Mm-hmm.

Speaker 2:

And so, I, I, I became a caregiver for eight different family and friends over the last 30 years. And honestly, this is a job for me that happened out of certainly love and respect for people in my life. My grandmother, my aunts, my, you know, my very good friend who fell down a flight of stairs and had no one to care for her, and had a traumatic brain injury. My brother-in-law, my sister passed away, and he was diagnosed with multiple sclerosis, the worst possible kind. And so I became his primary caregiver. So my only point being about that, that you made, which was, there were times when I was mad about that. Like, this isn't what I wanna be doing. This isn't what I think my life is supposed to be about. Right. I have dreams, I have aspirations. And it turns out that that's exactly what

Speaker 1:

Was that even close to anything that you had predicted or dreamed or wondered about that maybe that's the direction your life would go? Was it anywhere close?

Speaker 2:

No. Well, I didn't know it, but yes, because here's the thing. I wanted to be an actress. Okay? I was a theater major in college

Speaker 1:

Speaker 2:

So what that means for me, really what that meant for me is two things. I really wanted to help people, and I wanted to be in front of audiences in some fashion, right? Mm-hmm.

Speaker 1:

Yeah. Wow. Mm-hmm.

Speaker 2:

Me too.

Speaker 1:

And that's, you know, how when you say you got angry about it, it, it's, I mean, that's a lot of people to be primary caregiver for.

Speaker 2:

Yeah.

Speaker 1:

So, I mean, can you tell us a little bit about, was there no one else? Did you just do it better than everyone? And you knew you did, did you, was it just everybody? That's the way your life turned out.

Speaker 2:

Everybody in your audience probably is a caregiver on some level, let's be honest. Mm-hmm.

Speaker 1:

Two year, which is a hilarious book, by the way.

Speaker 2:

Thank you. They were, they definitely wanted to, you know, gang up on me and see what they could do, get away with it,

Speaker 1:

Speaker 2:

And it worked a lot. Um, but they, but that experience then led to, you know, other family members both on my side and my husband's side needing care. And as I'm doing this, as you remarked, I, I was a, I was a small town lawyer at the time mm-hmm.

Speaker 1:

Is that an actual, uh, specific kind of law, specific law degree?

Speaker 2:

It isn't, it isn't a law degree. There are certifications that you, certifications take. Yes, absolutely. And there are classes now, I would say they're fairly new in law school. Law schools are now offering elder law classes. Um, and it is definitely a specialty in law for sure. Okay. It's ab and there's lots of lawyers. That's

Speaker 1:

So that's really what I do. I try to teach everyone out there why you need an elder lawyer. What is it that you need? And what is different about elder law as opposed to any other,

Speaker 1:

Well, you make that point very well.

Speaker 1:

And then other people just simply don't wanna think about it. You know, I grew up the daughter of funeral director and we, I mean, death was a part of life. I heard about people dying every day. And so I have a little bit of a different take on it, I think because of that. But certainly in my practice now for a long time, I, you know, mortality is something that, an illness and losing control, I mean, it's something that we all fear so much. Look at what's happening to Bruce Willis right now. I mean, he's taking the very brave step of letting some information out about it. Fronto, frontotemporal dementia or something like that. Mm-hmm.

Speaker 2:

Speaker 1:

Speaker 2:

So here's the thing though, it doesn't work that way. Yes. That's the problem. It doesn't work that way. And by ignoring at your peril, not taking, getting your affairs in order mm-hmm.

Speaker 2:

But you can absolutely pretty much ensure that they have their affairs in order. So in other words, during the journey when they were trying to figure out the problem, they made sure that their powers of attorney were in order. That they, that those powers of attorney let them do what they want them to do. Because it's like you said, sure. You sort of know about it, you hear about it, you have it. But did it really do what you wanted it to do? Which is why I talk about it more specifically in the book so people know what questions to ask. What kinds of questions am I supposed to be asking about this document that somebody has shoved under my nose to sign? Right.

Speaker 1:

Let's talk a little bit about, I mean, I did not read all of who Moved My Teeth, but the, the picture of the book that I got was certainly, there's a lot of information about exactly what you just said at the beginning of the book. And then the latter part of the book is more, um, well, practical, practical, pragmatic,

Speaker 2:

Practical advice for caregivers for really Yes. When you're stepping into it, how do I talk to my person who, you know, how do I spend a whole day with someone who's quite frankly making me insane with it? The same questions, or Sure. You know, what kinds of things can I do? What are they acting crazy? Maybe they have a urinary tract infection. And I never knew about

Speaker 1:

That. I was gonna ask you about UTIs, cuz that's really a big deal. You know, before we move on too much, there's a young man I worked with several years ago now, he lived on a farm kind of complex. All his family lived together and he adored, adored his grandmother. And she was diagnosed with, uh, a terminal illness and she refused to talk with him about her dying. And I'll never forget, he came, this young man was tough as a brick, you know, and a reared on a farm and used to, I mean, he didn't, I mean, the fact that he even came to therapy was a minor miracle. But he said, it's just like there's this, she's gone, she was dead by the time he came in. And she, he said, I never got to talk to her about how I was gonna miss her and what I loved about her. And I know that's a separate topic in many ways from some of the more legal things, but not really. I mean, it's intertwined, isn't it?

Speaker 2:

But I, yes, and I love that because these legal things are an act of love.

Speaker 1:

Yes.

Speaker 2:

This is an act of love both for you as the person who is doing it. And for you as a person who's saying, mom, dad, I wanna spend time with you. I just had this conversation with two three daughters who, who have a, a podcast as well, which, which we talked about doing that. But, but they, they said we had to step in so quickly as caregivers. We didn't get the end of times as daughters.

Speaker 1:

Right.

Speaker 2:

And, and I have read this again and again, that people would so much more rather be grandsons and daughters and loving spouses rather than caregivers trying to deal with paperwork and, you know, and hospitals and doctors and anything you can do to make the hard road, the, the, the legal road, the people, anything that you can do to make that crisis part of the road smoother, gives you time to be a loved one.

Speaker 1:

Oh, that's a great point. It's such a significant one. Um, it, this the other book I talked about, 12 conversations really does pick out, you know, how do you talk to your dad? How do you talk to your mom? How do you talk to your siblings? How do you talk to your children? Um, and I I I loved a lot because you actually then have dialogue that we can read and go along with it. And you made jokes along the way. I love one of 'em called, I mean, I, I, I I dogeared it. What was it you said? Um, let see. Oh, it says, as you go through this chapter, you'll begin to understand that although this basic paperwork is crucial, it is the tip of the iceberg. And we are on the caregiving Titanic.

Speaker 2:

Well, wow, that was good. Yeah,

Speaker 1:

That was good, wasn't it,

Speaker 2:

Speaker 1:

And you're right, it's inevitable. You know what's gonna happen eventually, um, I've been on a hospice board for, or I was on it for many years and, you know, heard a lot of stories about how people handle palliative care and hospice and was thinking about that as I read your books. And, um, but I, I love the specificity of, of what you talk about in who Moved My Teeth, for example. You literally have a list of 60 ways to be more patient. You know, everything from count to 10 to drink a large glass of water, change what you're doing, take a bath, put gum in your mouth,

Speaker 1:

Tell a joke, take a picture, order food, put lotion on you or your loved one, clean out a drawer, go through family photos, dance, bake color, and a coloring book. Tell a story. I mean, it's just these, I love the specificity of this.

Speaker 2:

And that gives not only you control, but the, but your loved one. Right. Right. So whether they have dementia or they're just ill, or they're just homebound or, you know, everyone doesn't have dementia, Margaret or, you know, caregiving isn't isn't just for those people with dementia. Like, it, it, it extends itself to lots of different kinds of people and their, their challenges. But if you are, for instance, coloring with them, it just gives them some control. Here's your page, here's my page. You can pick your crayon, you can pick your colored pencil. And even that, that little tiny weird thing of the two of you sitting there, you know, adult coloring was a big deal. Okay. Several years ago. Right.

Speaker 1:

Especially during the pandemic. Mm-hmm.

Speaker 2:

Speaker 1:

Yeah, sure.

Speaker 2:

So, so any of those things is, is yes, certainly to, helpful to you as the caregiver, but it's probably also helpful to the person you're caring for as well. Mm-hmm.

Speaker 1:

And, and them accepting that I, I recently had a, um, a benign tumor removed and my son, who's 28, came and stayed for three weeks to help take care of me cuz it was a more serious surgery and that kind of thing. And we sat down and had a talk about, okay, let's, let's talk about what's in our future and you know, you are our only child and you know, what, what comes to you now? And he looked at us and said, well, I think I'm probably gonna have to move to Fable, Arkansas, or y'all going to move where I am. One of the two eventually. And, and we talked about timing and, and I decided after reading your book that the next time he comes, I'm gonna ask him to stay another day and go over, go to our lawyers with us and talk about these documents that we've signed that he's named in. But he was, what he was 16 or 17 when we did them. Right.

Speaker 2:

So

Speaker 1:

He needs to hear about it and know what's going on. And, and I, I loved that taking, that was my own personal takeaway from your book. Excellent. And I, I think that that is so important for people. And, and again, doing it when you're 40, I mean, uh, waiting, you know, oh, I'll do that when I'm 85. Well, you don't know what you're gonna be like at 85

Speaker 2:

And what you do at 40 is not what you're gonna need to do at 60. Right. It's very different. So if you did it at 40, you and you're 60, you need to take a second look.

Speaker 1:

Yeah.

Speaker 2:

You need to really, what

Speaker 1:

Do you think, what do you think is the, is the most common either error in thinking or behavior or both that people,

Speaker 2:

Well, the, the most common is not doing anything. Right. That's the most common. So, so if anybody who's listening to this now says, okay, I didn't do anything. I'm, I need to go do something, then yes, please go do that. Get your powers of attorney, get your wills, get your advanced directives. Just get them, get them. Mm-hmm.

Speaker 1:

That old pair of underwear you used to be able to get into. But

Speaker 2:

Exactly. This is where I held up the granny panties and say, you need the granny panties of the wills. It's fresh, it's clean and it covers everything.

Speaker 1:

Is, I don't see him anywhere. I keep online my

Speaker 2:

Head

Speaker 1:

Well, so what I did, I I sort of, the night before the surgery I went, what, wait a minute, what if something happens? And so I gave him the major passwords I could think about and we both kind of cried. And, and then I said, you know, but I, I should have all those written down somewhere or can

Speaker 2:

Somewhere. I mean, everyone says don't write them down, but truthfully, if you can't get into your computer where your passwords are, not having them written down doesn't help you. Right. Right. So you at least have to have your basic passwords somewhere where your loved one can have access to it, but legally also give them access to it. I see. In your documents. And that's new. That's not even in, I don't, pretty sure that's not in my first book. It's probably in my sec, my second or third book. Um, but things keep changing and that's why you need to keep looking at these documents, say every five years or so. Cause life changes.

Speaker 1:

You know, I also, um, my dad was always really sad because after his dad died and his dad died when he was 15, there was such family uproar about the will mm-hmm.

Speaker 2:

Um, and so you, your work in my work are the same in that regard because in the sense that communication mm-hmm.

Speaker 1:

Have, and also, uh, it, I mean, my brother died three year, three and a half years ago. It also, you, you can't talk about it without your own feelings about mortality or getting ill or losing control or, you know, these things that we fear that we just distract ourselves from and, you know, either have another beer or watch another baseball game mm-hmm.

Speaker 1:

Right. You don't, you don't get outta dying. Right. So, um, it's, I I just think that these conversations are, they really can be trust builders. They can be things that, that offer clarity, that offer trust, that offer a sense. And as you point out a sense of control to the person who is older and realizes that they have a disease that is going to weaken them or, or cause their life to be something that frankly, you know, they wish did, hadn't happened to them, uh, like Bruce Willis. But at the same time it can, and we don't get to pick. So it, it's not like going to a, a restaurant and saying, oh, I'll have that. You know, it's just not like that. And,

Speaker 2:

But it's in the same vein, it's much harder to have a disease than it is to have a conversation about what happens if I have a disease.

Speaker 1:

Right.

Speaker 2:

It's not that hard. My friends, which is why I wrote the 12 conversations book. Yeah. It's really not that hard. It's five or six simple questions you need to ask yourself about what you want, what you think you wanna do, um, and then get a lawyer to write it up for you. It don't make it harder than it needs to be.

Speaker 1:

Speaker 1:

Number one, there is nothing that is more mentally health challenging than being a caregiver. Mm-hmm.

Speaker 1:

As many people found out during the pandemic when it was all of a sudden 24 7 kind of

Speaker 2:

In your face. Yes, exactly. And if you are not yet a caregiver, but you see it coming down the road and you just happen to be going to a therapist, talk to them about that mm-hmm.

Speaker 1:

I, I, I also, before we, before we stop, I wanna make the point, I I, you're right. Caregiving you, you think, oh, I'm just taking mom to get her hair done, or Oh, I'm just taking dad to the post office, or I'm just doing this, or I'm just doing that. But those things add up mm-hmm.

Speaker 2:

Mm-hmm.

Speaker 1:

So, or aunts or uncles or whomever, grandparents. So it's just a conversation about it and, and to say, gosh, this is, you know, maybe people say, oh, I'm, I'm, I'm loyal, this is what I'm supposed to do. But that doesn't mean you have to, you know, you can't grieve it or feel different feelings about it other than, you know, I, I, I just, I just have to do this. It's, it's like, it's more complex than that.

Speaker 2:

Agreed. It is more complex than that. And you need to grant yourself the grace to understand that.

Speaker 1:

Yeah. Wow. What, how have you changed in, in, in taking care of these folks that you've loved or you've cared for being an elder law, um, specialist Now? What, what, I mean, how have you changed Kathy?

Speaker 2:

Um, I,

Speaker 1:

Being an author, a speaker.

Speaker 2:

Speaker 1:

You mentioned that

Speaker 2:

The, the empathy is great, but the practicality is hard. And it's okay for you to recognize that and, and to have expectations of others. Not the person that you're caring for, the person who should be helping you, the person, you know, even your partner. Um, it's okay to have expectations of others. And I think I often when I'm teaching that, that often becomes a question. Um, you know, but my mom won't talk about this or I can't, she won't go to the doctor or whatever. And I'm like, you, you have two choices. You can take the tough love perspective that this is what we're going to do if I'm gonna be your helper, or you can tell them that they will have to suffer the consequences of that action. And you have to be okay with that. Yeah. So, wow, tough love caregiving is hard. Mm-hmm.

Speaker 1:

Actions. And it's really, I what comes to mind is sort of the age old. You, you have to parent your parents kind of thing. Mm-hmm.

Speaker 2:

The other thing, and that's so important. Yes. The, the other thing that I'd like to bring up that I have changed, not changed my viewpoint amount, but have, have really put into practice and want more women, especially to do this, is get paid for your caregiving. Yes. If your parents would pay Jane, they should pay you. Right. Especially if you don't have Jane coming, if you are doing all of it. And if you are taking a f, especially if you're taking a financial hit, if you have, you know, gone from full-time to part-time work, if you have quit your job to take care of them, if you moved into their house and got rid of your apartment or you're paying rent over there, but living with them, if you are taking a financial hit and they have assets, they should pay you. And you get a signed paid caregiver agreement to protect all the parties.

Speaker 2:

But that's really important. There are far too many unpaid family caregivers who can and should be paid. And we are recycling this, this, uh, women get to the point then in their lives where they have no retirement, they have no right savings. They have no, because they stepped out of the workforce to be a caregiver 1, 2, 3, 7, 9 times, right? Mm-hmm.

Speaker 1:

Mm-hmm.

Speaker 2:

Two more great.

Speaker 1:

Like it's a little bit different a conversation than we would've had six years ago. So

Speaker 2:

Very much yes.

Speaker 1:

That's, um, that's to everyone's benefit I think. So I thank you so much. How can people get in touch with you to speak or to teach or, um, just

Speaker 2:

To, so yeah, so if you're in a workplace, in a corporate workplace, that would be awesome to have me come in and help teach your, your team about not only caregiving, but what benefits you may have at work that you're not using to help caregivers. And that what you could bring into work. Uh, if you want to just, you know, look at my books Kathy Sikorski and see my name on the screen there. Just type that in. I come up for the first three pages on Google, but I'm on Amazon, so all my books are available on Amazon. And my website, which is being recreated as we speak, um, is kathy sikorsky.com. Um, and that's c a t h y s i k o r s k i kathy sikorsky.com. Um, and anytime you have a question, Kathy sikorski kathy dot sikorski gmail.com, you are free to email me. I love to interact with people who have questions and I will answer them as best I can and guide you to the resources that can really help you.

Speaker 1:

Kathy, I admire you so much. Thank you very, very much. And you are really funny. So, and

Speaker 2:

You told me about

Speaker 1:

That, that it's so important to keep your sense of humor.

Speaker 2:

Please. You guys, you gotta laugh about this cause it's, it's, first of all, it's a laugh worthy and second of all, if you're not laughing, you're doing something else. You don't wanna do

Speaker 1:

Speaker 2:

Yes. I'm on your dad's side. Yeah.

Speaker 1:

If

Speaker 2:

He, if he ever figured out how to do that conversation, you should put that out there,

Speaker 1:

Speaker 2:

Very much. So great to spend time with you. I really loved it.

Speaker 1:

Yeah, me too. Bye. Bye.

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