Kandis Draw – Real Life as a Caregiver (Episode 96)

Join host Kay Coughlin and Kandis Draw, contributor to Caregiving.com and a member of the Illinois State Commission for Gynecological Cancers. Kandis talks about what it was like as a 30-year old to care for her mother, full-time, for 3 years. She shares her real-world thoughts on what caregivers really need while they are in their caregiving years. As always, no judgment, no guilt, and no pressure.

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Transcript of episode is below.

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Transcript: Kandis Draw – Real Life as a Caregiver (Episode 96) 

You’re listening to From One Caregiver to Another. I’m your host, Kay Coughlin. I’m a business coach and an advocate for people with family caregiver responsibilities. I’m a family caregiver for my mother, too, and I just don’t believe that we caregivers have to put ourselves last. I believe that our families, government, and society in general owe us a lot more help than we usually get. And I’m here to help you learn to speak up for yourself so you can live your own life again.

Kay: Welcome to the podcast everyone. I am so glad that you can be here with us today. I would like to welcome my friend and colleague, Kandis Draw. Kandis, thank you so much for being with me here on the podcast today. I’m so excited that you can be my guest.

Kandis: I am so excited to be here, to be talking to you.

Kay: Kandis and I met because of an event that happened in Roanoke in November of 2022, and that was called the “Caregiver Colloquium.” So Kandis lives in the Chicago area and Kandis was a caregiver for her mother beginning in 2012. Her mom unfortunately passed away three and a half years into that journey, so that was a long time. Her mom did die of cancer and she was very sick, so Kandis has got that to share with us.

Currently she is a contributor for Caregiving.com, so you can find her there on that site. And Kandis is also on the Illinois State Commission for Gynecological Cancers.

Kandis, your mom had ovarian cancer, is that right?

Kandis: That’s right, yes.

Kay: Okay. So Kandis, I would really like for you to tell me a little bit about yourself. And include whatever you think our listeners would like to know about your caregiving experience, what it was like to have caregiving responsibilities for you.

Kandis: How I became a caregiver was suddenly. You know, one day everything was normal. The next day it wasn’t. That’s how it happens. One day we had great Thanksgiving meal. Next day she was sick, got a diagnosis and everything changed. Difference with me was that I was just shy of my 30th birthday upon her getting diagnosed. And I remember them breaking the news to us in the, we were actually in the ER and the doctor called me back first.

And you know, that’s when you know everything was wrong. I said, is this really serious? Are they serious? And then he showed me the scan, he showed me everything. He talked to me. And I was like, wow, that, I mean, talk about like a boom, like, you know, that’s literally how it happened. And then time went on.

You know, they did not expect her, because her cancer was found in the fourth stage, already spread to a major organ, that they did not think she would last longer than a year, but she lasted three and a half. So caregiving journeys, how do they start? They start sometimes suddenly, sometimes some people can see it coming. But others like myself, didn’t see it coming. I ended up being her caregiver for like the next three and a half years, um, until she passed.

And those were some hard years. I’ve heard people say before, like, when I’ve talked about this, you know, that’s supposed to be at a prime time and you know, you were dealing with all this. I said, well, it’s what happens. The conversation of her going to a home or going to like a, that, that was not something that I even wanted to entertain. Okay? After having a discussion with my dad, but I’m just glad that, you know, I, I’m glad I was there for her now that I’m out of the situation.

But I have to say, going through it, I know why people don’t do it. I know why people don’t do it because it is extremely difficult. It’s not, this is not an easy thing and it requires you to, you can’t be selfish, you know, when you’re a caregiver. It’s about caring.

You don’t know how far you’re going to go with, with, with the caregiving journey because each person is different. You know, each experience is different, but some caregivers are not close with the people that they’re caring for and they find themselves in that situation. You know, it’s kind of like, what do you do?

In my case, my mother and I were not the closest, but I would say about the last year of her death, we became close. That’s really how I started my, the caregiving journey.

Kay: You are a caregiver advocate now. Can you tell me a little bit about that?

Kandis: I started advocacy in cancer, in the cancer space. Okay. Because I noticed that gynecological cancers did not get a lot of awareness around them. You heard a lot about other cancers, but gynecological not so much. So that’s how I just started getting curious about diagnosis, how it happens, why does it happen, and when it happens in so many cases, you know, it’s so far advanced.

Like, you know, what are they doing, you know, to, to combat this issue. Because I remember sitting there and saying, okay, my mother went to the doctor. I know she did. So what did they not look for? What did they not see? And it’s just like after asking more questions, I realize you can’t diagnose it by a Pap smear. Oh, and there have to be other things that you look for that a, a woman going in for an annual Pap, that tests for cervical, but that doesn’t tell you if you have ovarian.

You have to get a lot of more invasive testing for you to know exactly. And it can look as simple as gas, you know, gas or bloating or that, that could be IBS, you know, you have to be very strategic.

So, when I found out that that’s what you had to do, I began to learn and understand why gynecological cancer is number one, why there’s – cancer in general is deadly, but why those why gynecological cancers are so deadly. And then why they’re so far advanced when you find out you have them.

Well, that’s how I started, you know, advocacy, just doing that. Volunteering on the Illinois chapter for run walks, for different committees. And then that led me to, uh, state advocacy, which led to national advocacy, which landed me on the state Commission mow.

But as far as caregivers, I remember wanting a mentor or someone that I could really, really talk to and vent to. I remember those hard, hard days. I had a good group of friends, but caregiving is not something you understand till you’re doing it.

Kay: I hear that a lot. Honestly. In fact, that’s the second time today that I’ve heard someone say that, you don’t get it.

Kandis: You just don’t. Yeah. And. When I found out that, you know, when I found myself in a caregiver space and I’ve seen people who have been faced with the same decisions, you know, family members getting sick, and I have to now do this, and some people are not trying to do it. Some people aren’t going to do it. It’s not for everybody.

But being a caregiver advocate, well, I started doing it because I saw that there was a need. Caregivers need a lot of understanding. And not just in friendship spaces, but also in uh, corporate spaces. If you find yourself in a position where you can’t afford to send your loved one to a person to get cared, or you find yourself having to step into that, how do you navigate that?

Kay: So the situation with your mom, it’s really heavy on my heart. That’s an extremely difficult and painful thing to watch anyone go through. It’s hard to watch a parent go through that. It’s harder still to watch a parent go through it if, like you said, you don’t have the best relationship with that parent going into it.

I really want to thank you for being so vulnerable and, and talking about that, because I hear from a lot of caregivers who don’t actually have great relationships with the people they are caring for. I think it’s pretty common. I think mostly that has to do with family dynamics.

And also, what I’ve learned from my own work is that we aren’t taught to become emotionally mature adults. Especially with our families. And so, you know, there are a lot of families where you can be 40 years old and they still treat you like you’re 10. And, and that can happen in caregiver relationships too.

And, and that doesn’t lend itself, necessarily to relationships where there’s any kind of balance between the needs of the person that you’re caring for and you as the person with caregiver responsibilities. Because you still have an entire life to live. Even when you have caregiver responsibilities.

Kandis: Yes, but to be transparent, caregiving means setting your life aside for a while. Setting your needs aside. It means, I want to be first, but in this situation, I’m not first anymore. Everybody is not going to do that.

When I sit on the side of caregivers, and I hear some people talking and I listen, you know… this is not a role you’re going to just going to jump into and say, oh, you know, well a loved one’s sick, I’m going to help.

But when you become that person, that’s a huge burden. Everybody doesn’t have the capacity. You know, I heard a lot of, as I was doing it, oh well I feel sorry for you. Oh well my heart goes out to you. Oh, well you know that that’s a lot and I don’t feel like you should have done that.

And you know, you get a lot of criticism. A problem for caregivers is that you’re overburdened, you’re already going through a lot. To hear that type of criticism just makes it worse.

And it’s kinda like, you know, some caregivers you, can’t socialize like they want to, can’t do the things they want to. If you can’t afford to bring care in or if you don’t have respite help, or if you don’t have anyone to be that person, you know, your social life takes a dive. Social skills take a dive.

So it, I mean, caregiving can be rewarding, but it’s, it’s also difficult.

Kay: It’s extremely difficult. And I want to tell you something that I’ve noticed is that all this criticism that we get as caregivers, I think that’s because that is encouraged in our culture. I think that we are all taught that it is totally okay when you find out somebody is a caregiver, to give them all the opinions and all of the advice and all of the judgment.

And I also think that we have been taught that as caregivers, we are supposed to sit there and just take it and that it’s totally okay. And that’s something that I’m really setting out to change because you know, that’s a boundary. That’s a boundary.

There are many times when I say to someone, thank you so much, I just don’t need your advice. And they get kind of mad, but whatever, you know, I don’t have to listen to it if I don’t want to. But I do think that culturally it is very one-sided where people are taught that they’re allowed to tell caregivers what to do and how to do it, and that we are supposed to take it.

And I think that’s wrong. I don’t think it’s right at all.

Kandis: And until you’re on the other side and you’re faced with the emergency or you’re faced with something like that, you just simply don’t, it’s not on your mind. It’s not something that, you know, people are busting your door down about. It’s just once you’re in that role and in that space, you then understand.

And I’m careful with people anyway, because I don’t, you know, I don’t shoot off at the mouth, Kay. I don’t, I don’t walk around telling people, you know, what they should do, like you’re dumb for doing this. It’s not an easy thing.

Kay: It is not an easy thing. One of my greatest hopes and dreams and wishes is that that kind of wisdom will rub off on other people because I have found that the kind of rudeness that we’re subjected to as caregivers, it can be extreme and it’s pretty common. And that’s something about this culture that I would really like to change. I would like to give caregivers more respect and less advice. That is what I would like.

Kandis: Less advice, more understanding, more, more, more room to just be.

Kay: Yes and, and more room to be a person, too. Even if you’re in a situation where you absolutely can’t make time for a job or for a big hobby or something like that, to still be able to have room to have your own likes and dislikes and to get and…

Kandis: …And have it be okay.

Kay: And have it be okay. And to get a full night’s sleep. You know, ask somebody to come in so that you can sleep through the night.

So, I would like to know, what are some of the ways that you were changed by having these caregiver responsibilities?

Kandis: Well, I don’t know if I was changed, but I will say that I learned what real perseverance and toughness was. I have to be transparent when I say that I had very, very angry moments at times as a caregiver.

Let’s just call it what it is. If you’re not working, you’re broke. You don’t have medical benefits, you don’t have things that other people do. You kind of watch your life get away from you a little bit. And that can cause a lot of anger. The other side of the anger is, is that sometimes the person you care for is not nice to you.

Okay. They have their tough days and then the curse comes and then they’re angry, and then it’s this and it’s that, and it’s that, you know, they take it out on the person that’s caring for them. Whether it’s intentional or unintentional, it still can be pretty rough.

And the anger came because, okay, are you serious right now? Like, why do you think that I wanted to be here at my age? Look at you in the, taking care of you. Like, why, why do you even think that I, this is something that I wanted, and then you have to go and criticize. Like there were, we just had those moments. Those are real moments that caregivers have.

I mean, I’ve heard some, some serious stories about that. And that anger was, you know, like seriously, we just had a whole argument, but I still have to go make you dinner. You know what I mean? Those are real. Sometimes caregivers don’t feel appreciated, don’t feel respected, and that, it takes a toll on you after a while.

It could be positive. Well, the positive side is that, is that sometimes you and the person that you’re caring for come to an understanding and things get better. I was fortunate that happened with me and my mother, but you don’t always get that. Some, some caregivers didn’t get that experience and that, and that can take even more of a toll on you when you don’t get that.

I was glad that by the time my mother, you know, shut her eyes permanently, that we had developed a bond and a tightness. And that there were a lot of apologies all around and a lot from her and a lot of the appreciation that I was looking for. She said it. So really she died with a very lightness.

When you have that satisfaction internally, you did everything you could and then the person dies in peace and you’re at peace. It’s still hard, but it was still like, okay, you are finally giving me acknowledgement that I was looking for. You finally admit, you know, once that happened, I felt pretty great.

Kay: Kandis, what do you think gets in the way of caregivers using resources for themselves. And for ourselves? I am one too. You know, by resources I’m talking about time and money and help. What gets in the way of us using those things for ourselves?

Kandis: So caregivers struggle with not wanting to feel like they’re burdening people. And then there’s a sort of shame that, that, okay, I really have to reach out for help, but are they really going to understand? I really feel bad because I’m not working. People are going to look at me, uh, that… a lot of the judgment, self-judgment comes with it.

But I think that sometimes caregivers may not know what’s available. If I had known that there were virtual caregiving groups, there were things that I could have done, you know, I would’ve definitely taken advantage of it. And I think the caregivers should take advantage of it.

I think that you heal when you’re around, in community with people who are going through what you’re going through, you can draw strength from each other. And caregivers, you know, sometimes don’t do that out of fear. Sometimes outta shame as well. You just don’t think people are going to get it.

You just don’t think people are going to understand. That’s why I think you should be strategic about what you do. It should be a caregiver support group

Kay: So that you know, people are, are, are going through it also. Because they get it. Because they’re caregivers too, right?

Kandis: Because they get it and because, you know, okay, I’m having a bad day, can I call you sometime? And you’ll get it. That’s what you need, and you need non-judgmental support. You need non-judgmental emotional support. And caregivers should take at least a day a week to either connect with a friend or do something that you like doing. Even if it’s just a walk, take some time to carve out, you know, just for you, like get connected.

Because there’s so many different communities now that caregivers can access and utilize, you know, that will help them along. And most of those spaces are non-judgmental spaces. Sometimes with family and friends they can mean well, but they don’t always give the best. But I found that when you have a friend who’s been in the caregiver space, like you have the, they empathize with you more and they understand that’s what a caregiver needs.

Kay: I agree. That is what caregivers need. And the other thing I find caregivers need is for a friend, somebody you’ve met in a support group, to reach out and say, “Kandis, how are you?” To lead with that, instead of, oh, Kandis, how’s your mom? Doesn’t it mean the world when somebody reaches out to you and checks on you? Especially when you’re in the middle of it.

Kandis: Even a text when they say, how are you? Yeah.  

Kay: Kandis, I’m thinking about you today.

Kandis: Yeah. And what caregivers also have to do is don’t be afraid to accept help. Somebody wants to make you a meal, sit down and let them, somebody wants to buy you food. Let them. You know, accept it.  

Kay: One of the things I talk about a lot in my podcast, probably as much as I can pry it into an episode because I think it’s so important, is that I found that there’s two skills to getting help. There’s two entirely separate skill sets. The first one is asking for help. And look, that is hard enough to do, to just ask for help.

But then the second skillset, and it’s totally different skills, is receiving help. That’s rough. Somebody can say, I want to come over and make you dinner. And you say, okay, that’d be great. And then they show up at your door and they’re going to make you dinner and you have to learn how to let them in the door or whatever it is they’ve offered to, to, to help. And actually receive that. I think they’re two totally different things.

Kandis: They are. They are. And they’re equally hard

Kay: Accept the help. It’s hard to do and it’s the best thing you can do for yourself.

Kandis: And I just, and you know, and for caregivers, just understand you’re not by yourself. It feels like, it feels the weight, the weight can be serious, but you’re not by yourself.

Kay: Well, and there’s that support group. And being in a community and not being isolated. I think isolation is one of the number one problems that caregivers face. And there’s so much going on virtually now, that I don’t think we have to be isolated anymore. You know, no matter how remotely we live, I know that remote stuff does not take, the virtual stuff, does not take the place of everything in person. I get it. I believe that, but it’s pretty close. It’s 90% of being with somebody in person and you know, take the 90% Right?

Kandis: Yes. Take the 90%.

Kay: Mm-hmm. and, and get some in-person time with people when you can. But, you know, use the phone, talk to people online, do what you need to get help.

You just passed the 10 year anniversary of your mom getting diagnosed, didn’t you?

Kandis: I did.

Kay: Wow, okay. Things have changed a lot in those 10 years. The world has changed a lot. You know, we are doing this interview over Zoom. This did not exist 10 years ago. So knowing what you know now about caregiver responsibilities, what help would you have asked for or insisted on? And this could have been for your mom. Or for yourself. And this is, you know, so that you can live your own life.

Kandis: I would’ve insisted on respite care. I would’ve insisted on in-home housekeeping. I would’ve insisted on respite care specifically, so that I could either go to the gym, I could go do something, every now and then, that I wanted to. I would have seen what resources there were because my two younger siblings were there, you know, homework and everything. Come on y’all, let’s go. You know?

Kay: That’s right. You were helping to take care of your younger siblings as well.

Kandis: And because she kept, you know, the sicker she got the less she could do. She couldn’t drive anymore.

Kay: That’s a lot for a 30-year-old to take on Kandis.

Kandis: You have no idea, you have no idea. My dad was, he was working. Okay, somebody got to keep the lights on. But I, I would have tapped into some of the summer clubs and different things for kids with parents who have been diagnosed with cancer for them to go to, right? Am I supposed to, during the day I would’ve done that. So definitely respite care.

I would’ve stayed in a support group or gotten individual therapy during that time.

Kay: Okay. Thank you for that, that’s a, that’s a really good list. All right, so this next one is a hard one, and I know you’re going to have a lot to say.

If you could just wave a magic wand, what are some changes to the systems or the infrastructure you would make so that caregivers can get the help we need?

Kandis: Well, I, the first thing we need to do is make sure we can actually get paid for taking care of a relative. I can’t tell you how many people did not get paid to take care of a relative.

I, I would’ve made it easier, like if, especially for HR departments. Okay, can we have a clause in there for family caregivers or if you find yourself in a caregiver situation, can there be some type of conversation? Can you get some time off? You know, can it not be so tedious? Like 25 stacks of paperwork just for you to sign once and then tell me I’m denied, or whatever the issue is.

Make it easier for family caregivers to navigate the workspace. You know, I, well, ever since the Covid days, you know, we’re able to work from home, making it easier for people to still be able to work by, while still taking care of a loved one.

It would be nice if some organizations understood what family caregivers go through. That way they would be more understanding. I didn’t get a lot of understanding. You don’t get a lot of understanding in the caregiver space, especially when you’re trying to come out of it and try to go back into the workforce, because I got a lot of, oh, that’s so sweet. Yeah. We’re going to go with another candidate. I can’t tell you how many times Kay, that happened. I, I cannot tell you.

And what does that do? Messes with you mentally. So if jobs understood, that gave you allowances for it, made sure that family caregivers were looked after? That would make, that would make it so much easier and like, yeah, we’re, you know, you’re a family caregiver, but I don’t have to use all my PTO if every time I wanted to take my mom or whoever it is to the doctor. Or just having like specific time where I, that I could take specifically for that, that would help a lot of caregivers out because a lot of caregivers can’t stop working.

That’s just the fact that remains like you, if the gas man and the electric man and the cable man would stop sending me bills, you know, wouldn’t have to worry about that. But that’s not the case, is it?

Kay: What are some ways that you think the healthcare system itself could help with people who are sick to give family caregivers relief? A lot of relief.

Kandis: Have resources for caregivers. If that was part of a loved one’s care plan, especially if they had a main caregiver, if the care team or whoever it is that’s over them, gave them a list of resources. Or a list of groups or support groups or whatever it is, counselors, therapists, whatever, to assist family caregivers or caregiving resources. That would be helpful too.

Kay: So it would be great if doctor’s offices kept information for caregivers in their offices. I agree.

If you could take somebody who is struggling to live their own life, while having caregiver responsibilities, and you could take them by the shoulders, what is it that you would say to them?

Kandis: What I would say is less on the criticism, more on the self-love, more on the, I’m doing the best I can. I’m still a person too.

I said, you know more on that because family caregivers, you struggle. Don’t think you did enough, don’t think you worked hard enough. I think I missed a prescription, I didn’t pick it up today, should have picked it up yesterday. You know, things like that.

Knowing that, you know, the pharmacy will be there when you, you know, when you wake up from your nap, it’s okay to put some things off until you’re able to rest and recharge. And knowing that it’s okay. That’s what I would say. It’s okay.

And are you getting support?

Heavy on self-love and acceptance and less on the criticism and the bad.

Kay: So it sounds to me, Kandis, like you’re talking to your past self there. Is that right?

Kandis: Yep. That’s one of the reasons why I started mentoring girls with Imerman Angels, and I was actually paired with a young lady that lives on the West coast.

Kay: What’s the program again?

Kandis: It’s called Imerman Angels. It’s where if you, she was young like me. Her mother was diagnosed with ovarian cancer and she was in a caregiver situation. So they pair you based off of experiences and so we talk and text all the time. And I remember the first call we had, she was just literally in tears about everything because she was young too, still had to work, still had things to do.

And then she got, her job ended up being two states over when her mother is sick somewhere else. She talked about how that weighed on her and the things. And we still keep, we, we keep in touch now. We still talk, we still text.

What I needed was a mentor. What I needed was someone to say, hey, it’s going to be okay. What I needed was that type of affirmation. I got it, but I felt like I didn’t get it enough.

So that’s why, you know, once I was far in the years after, of course, you know, my mother passed or whatever, I felt myself healthy enough to say, I am going to now mentor people in the same situation I was in.

Kay: Has that been healing for you to do, to help other people?

Kandis: That was part of my grief. Me grieving, that whole grief journey for me was rough. It’s rough, but I just wanted to make sure that, you know, when you mentor someone, you come from a, a healthy space. And that’s where I am now. And it’s, it’s been really, really beneficial. And it’s always good to give back to, you know, give to what you needed when it happened to you, when you found yourself in that situation.

Kay: I’m glad that the world has you in it now, Kandis, to bring this message, to be a mentor, to help other people. I, I think one thing that our generation can, can do, I’m hopeful, is pass down this message of getting help when you need it. And of not being isolated.

And, you know, I don’t know how much of an impact we can make on some of the other problems that I’ve seen in caregiving. I mean, I’m sure trying, I know you’re trying too.

But those two things, get help and don’t be isolated. Imagine the difference that would make if every caregiver could hear that and, and internalize that and, and act on it. It would be a very different world for caregivers, wouldn’t it?

Any last thoughts? Is there maybe one thing that you want all family caregivers to remember.

Kandis: Okay, so this may be a little, we, we hear this a lot, but laugh often. You go through a lot of stressful moments as a caregiver. Take some time to laugh, whether you’re watching a silly movie, something real dumb, like a comedy show something. Take some time to laugh.

Kay: Beautiful. Thank you so much, Kandis. I will put your contact information in the show notes so that people can look you up. I know you’re on caregiving.com. You are all over LinkedIn. We’ll put that email in the show notes so that people can find you and connect with you if they want to.

Thank you for being here with me, for raising your voice up with mine in service to the caregivers, and to help all of us remember that we are not alone. You are amazing, Kandis. Thank you.

Thanks for being with me here today. You can find out more about all of this work at Facilitator On Fire dot net. That’s Facilitator On Fire dot net.

If you haven’t already joined my free Boundaries community, what’s stopping you? It is the place to explore setting boundaries without judgment or guilt. There, you’re going to find just real talk about how humans really work. And you can find that community at Facilitator On Fire dot net slash Boundaries. I can’t wait to be with you again in the next episode, From One Caregiver to Another.

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your guide

Kay Coughlin, CEO of Facilitator On Fire, is a business coach for the non-profit sector and social justice businesses. She is also well-known for being an advocate for family caregivers.

In every forum she can find, she shouts that it's OK for every human to earn a living, set and enforce boundaries around their bodies, thoughts, feelings and actions. You can join Kay's free, private online community to talk about boundaries here.

Kay also teaches about emotional labor, how to rest, and Human Giver Syndrome, and is the host of the "From One Caregiver to Another" podcast and author of "From One Caregiver to Another - Overcoming Your Emotional Grind."

Kay is well-known for her public speaking on boundaries and self-care. 

Facilitator on Fire is a subsidiary of Donor Relations Mindset LLC, which Kay founded in 2015. She lives with her husband and children in central Ohio, and is the primary caregiver for her own mother, who lives right next door. Kay can be found on LinkedIn and Instagram.

Copyright 2022. All rights reserved, Julia Kay Coughlin and Facilitator On Fire.

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