Talk About Cancer

Rebuilding life after caregiving

• Episode 40

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Kandis shared how she picked herself back up one step at a time after a tough caregiving experience and how she eventually found positive ways to channel her grief. 

Some resources Kandis mentioned: 

Also check out Kandis' article about compound caregiving on Caregiving.com.

You can follow her on Instagram @kandi_koated.

Please follow the podcast if these stories are resonating with you. I would also be grateful if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.

Have topic suggestions or feedback about the show?  Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com. 

Thank you for listening!

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My reflections on the conversation:

Thanks to Kandis for sharing what it was like to return to work after having been a full-time caregiver for a number of years. This is another layer of complexity that caregivers have to deal with on top of the emotional turmoils that could come with grieving the loss of a loved one. And Kandis was absolutely right about feeling bad about yourself when you keep getting rejected by employers. I know that feeling and can only imagine how hard it would be to have to go to interviews when you are still trying to make sense of the traumas you experienced. Kandis’ experience reminds us how important and helpful working with a therapist can be when you are dealing with grief. 

SPEAKER_00:

Hey everybody, this is Serena, your host for the Talk About Cancer Podcast, where I talk to cancer patients, survivors, and caregivers about their experiences dealing with cancer. We're all given treatment plans when cancer shows up in our lives, but no one gives us plans for navigating the hard conversations we need to have and the relationship challenges that will inevitably come up. This podcast is meant to help fill that gap for those dealing with cancer. I think of it as an on-demand audio support group where listeners can hear about others' experiences managing similar problems, but most importantly, get insights about how our loved ones are feeling on this journey, none of us signed up for, and better understand where they may be needing support. In today's episode, Candace shared how she picked herself back up one step at a time after a tough caregiving experience, and how she eventually found positive ways to channel her grief. Let's dive into her story now, and I'm gonna check back in with you at the end. Welcome to the Talk About Cancer Podcast. Let's start with a quick intro and have you tell us a little bit about yourself, who you are, where you're from, and anything else you would like to share with our listeners.

SPEAKER_01:

Hi, Serena. It's really, really good to talk to you. So my name is Candace, and I, well, Candice Draw, let me say my whole name. I live in Chicago. During the day, I do community health for journey care. That's the largest in Illinois that does hospice and palliative care for adults and children. I also am doing a lot of advocacy work. I call it my second shift because it's literally like a second shift. I love any grassroots type work, any community-based work. That's something that I really enjoy doing. So it I'm on two boards, associate boards. I'm on the Gilders Club Chicago Associate Board and the AIDS Foundation of Chicago Associate Board.

SPEAKER_00:

That's not just the second shift, Candace.

SPEAKER_01:

No, that's fourth shift. That's third, fourth, fifth sixth. It's true. I also um I write for an online magazine called Curvicality.com is for plus size women and an advocate for the uh National Variant Cancer Coalition Illinois chapter.

SPEAKER_00:

I'd like to know how uh how you do all of that with five to nine. Um yeah, maybe we should go back to the beginning and talk about give listeners the context.

SPEAKER_01:

Okay, so my mother died of ovarian cancer in 2014, June of 2014. So she got diagnosed in 2011 of a stage four metastasized to her liver. The doctors didn't expect for her to live past a year, honestly, when upon her diagnosis. We were blessed, she lived for three and a half. So during that time, I was her caregiver, and it was a very rough experience. I don't think I've ever, to this day, have not gone through anything as intense as that. It's never easy seeing your loved one get sick like that. But my mom didn't take a traditional, I guess you could say, route of care. She ended up deciding, because she was diagnosed in the fourth stage, didn't really feel that traditional chemo and radiation would be beneficial for her because she felt like it would destroy her body more than it would help her. Um, so she decided to take a natural route for a while. When I say natural route, I mean I'm talking like literally changed her diet in a crazy way. Like, I mean, I know what vegan is, but I literally felt like I lived in Whole Foods. Like, I feel like every time this one particular one, Chicago, I feel like we should have become friends because as many times as I walked in there, they should have all known me.

SPEAKER_00:

How did you feel about that in the beginning when she decided that she wanted to go this natural route?

SPEAKER_01:

It was hard. I want to say that it caused a lot of controversy, if I can be transparent. You know, you hear a person is sick and then you tell them what's best for them, then they don't want to do it. Like even us as kids wondering why in the world she never decided to go that route. But I felt bad, I was conflicted, I didn't understand. And I was that way for a while. I mean, um someone passed me a card because they knew what I was going through. And in the card it talked about, you know, how to stay strong and different things like that, but it also had an inscription where a person wrote that sometimes you have to accept things that you don't want to, and you have to accept the way that she chooses to deal with this, even though you don't understand. So that was a big turning point for me. Didn't negate my feelings e either way, but it still helped me.

SPEAKER_00:

Why do you think that helped you?

SPEAKER_01:

It helped me because it's more of she's got a long route ahead of her, and you have got to hang in there with her and help her get through it no matter how she chooses to deal with it, because it felt like she was just determined she was gonna do what she wanted.

SPEAKER_00:

Is that kind of consistent with who she was? Mm-hmm. Okay.

SPEAKER_01:

Yes. And I hate to say it that how I can be too sometimes.

SPEAKER_00:

Hey, self-awareness is the first step. Um, so up until that point when you saw that card and it clicked in your head, I feel like a lot of times it's funny how you know these things to be true, but it like doesn't make sense to you. It's almost like you're not ready to accept the message and what it's trying to tell you until whatever moment it is. And it just so happened that this came from this card that a friend had given you. I assume though, prior to that, it was causing you and your mom some arguments.

SPEAKER_01:

Lots of them. Lots of them.

SPEAKER_00:

And so after you had that moment, were you able to just be like, okay, I'm just gonna shut up, even though I don't agree with it, but I'm just gonna shut up. Yes. Yes.

SPEAKER_01:

Even some of our antics were just like, What are you doing? Again, I guess the things that we do to get through stuff.

SPEAKER_00:

In hindsight, do you think that was the right decision?

SPEAKER_01:

I do. Because I guess I can say that now because I'm at a place of acceptance. If you had asked me this three years ago, I'd have been like, no. So I guess as time has gone past, my perspective has changed. So I would say yes now. Back then you would have said no because I would have said no because I kept thinking, if anybody knows the history of gynecological cancers, they're very hard to diagnose. Especially if you don't know what to ask for, especially ovarian, because a regular pap smear doesn't detect it. As I grew to find out as I continue my advocacy work. So I didn't understand. Okay, wait a minute, we've already caught this in the later stages. Why are you not um hello? Like that's how I was. And it wasn't just me, it was it was my other siblings too. We were all like, okay, mom, are you serious? But I came to a acceptance.

SPEAKER_00:

Yeah. Time does give you that one little bit of advantage, I guess. I feel like it's a survival thing, to be honest. Because it's like if you don't accept some of these things that happen, it's like you can't move on with your own life. So sometimes I feel like it's something that you just have to do. What else did you find particularly challenging during that time in going through this experience with your mom?

SPEAKER_01:

Mood swings, anger from her, sometimes lack of cooperation, sometimes just arguments and hurt feelings. I'm sure I don't have to tell anyone who's ever been a character, but like you go through a lot of highs and lows with your loved ones. Emotional and, you know, the stubbornness, the, you know, that baby boomer generation, you know, when when the roles reverse and kids are in charge now, some of them just don't take too well to that. And we went through that part too. I remember saying to her, we weren't particularly the closest, I'll say that. Throughout her journey, we became close. And so we started laughing more as opposed to arguing. I think there were so many emotionally charged moments between us. I remember my mom coming to me one day and sometimes she wouldn't say sorry, but she would do certain things like grab my hand and squeeze it, or hug me out of nowhere. Or, you know, when parents can't say what they know they need to say, but they do other stuff. That's what she that's what she would do. I knew what she was saying, but that was part of it. She was saying sorry, she was saying, I'm glad you're here, I'm glad that you're helping me, I'm glad that you took on the role, I guess I should say, because I I really was, because and then with two younger kids in the house, that was even more her responsibility.

SPEAKER_00:

Wow.

SPEAKER_01:

So they're very young, my two younger siblings are really young, and you know, the sicker a parent gets, the more you have to step in.

SPEAKER_00:

Did you talk to her about the mood swings and dumping on you?

SPEAKER_01:

Yes.

SPEAKER_00:

Was she able to take ownership? Not till the end. What do you mean by that?

SPEAKER_01:

Well, what I mean is that it was a lot of arguing, but it was a lot of her waving stuff off, like whatever I didn't do. But I don't know if anyone else has had caregiver roles where you have fought with your loved one to a point you don't even want to be bothered with them. To where you feel like a lack of support, not just from other family members, but even from other people, where you you're exhausted yourself. But before my mother died, we had a very candid conversation, and in that conversation she admitted to me, and she apologized for a lot. So from that, I was able to get closure, and that's really all I needed.

SPEAKER_00:

Yeah, that's so much with two younger kids. How did you swing it?

SPEAKER_01:

How did you do it? I know, that's the truth. I, you know, you look back on something and you're like, how in the world did I do this? How'd I even pull this off?

SPEAKER_00:

Did you have help from anyone else at the time?

SPEAKER_01:

Well, you know, my dad was working because somebody got to keep the lights on. But I would say that I really no, I did a bulk of it because I would get them up every morning, get them to school, make sure they ate all kinds of things. I kept them in their same lives. I just literally, well, mother couldn't do out I did. And I'm like, man, this stay-at-home parent stuff ain't no joke. It's hard work here. It's hard work. I mean, I'm telling you, every school person staff knew who I was. I went on field trips. Graduation shopping and getting a register here and there and this. It was rough.

SPEAKER_00:

Yeah.

SPEAKER_01:

I mean, I handled it, but it was rough. That's one of the reasons that I decided to pursue more of advocacy work once she passed. I think sometimes when you're grieving, it's hard to think straight. I can tell you for a while I didn't think straight at all. I didn't want to talk to nobody, be bothered with nobody. I wanted to learn more about what was available. Because not just for, you know, cancer, but for for black people more specifically, I didn't, I guess you could say have access to all the resources that I did see a lot of other people have. And so when I joined the cancer support community, I just wanted to know what it was. I kept seeing it. I had no idea it was a guilders club, I had no idea it was in Chicago, I didn't know what it did. So one day I just decided to make a phone call and go down and see the clubhouse myself. And then when I learned this was free, you're kidding, you know, or how, you know, and it was all for people and a family's affect affected by cancer. So I spent like a couple of hours in the library and I was reading, I was doing different things, and that's when I decided, okay, what about ovarian cancer? How come we don't hear much about it? How come every time I turn around, all I hear is breast cancer? Don't get me wrong, breast cancer is something we should fight for. But I wanted to know more about gynecological cancers and why different things were happening to black and brown communities, not just because of health disparities, but because of just the awareness that's not there. And that's when I started my advocacy work. It was about a year and a half after my mother died.

SPEAKER_00:

So you're saying while you were going through that experience with your mom, you weren't aware that a lot of these services were available and at no cost to families. Is that what you're saying?

SPEAKER_01:

I did not know.

SPEAKER_00:

How did you find out about it after the fact then? Was it just because you're like, now I finally have time and I've seen these words and these organizations. What are they about?

SPEAKER_01:

Well, I decided to do some Googling by the National Ovarian Cancer Coalition or Variant Cancer Groups in Chicago, which led me to the Illinois chapter. I had a meeting with their uh director, and then I just decided to become a volunteer and be on their run-walk committee. That's how it started. From there, I started meeting a lot of other women who were involved in ovarian cancer advocacy work that led me to Gilders Club. That's how I got introduced to guilds and just decided for myself to go down there and see what it was about. And then after that, I want to say two years later, I became a national advocate for uh the ovarian cancer research alliance.

SPEAKER_00:

If I can go back a few steps though, because you mentioned after your mom passed, there was a period of time when you were just I I can't remember exactly how you described it, but you were kind of in your own head.

SPEAKER_01:

Two in my own head.

SPEAKER_00:

Yes. I think you said you just didn't know what was going on. Can you talk a little bit about that and how you got out of that period?

SPEAKER_01:

So I think I was like any other person, you're grieving, and then really that first she died in June, and then her birthday was July. I felt like there was a dark cloud over my head that I just could not get out of. And I just wanted to sleep all the time. I wanted to take kids to school, come back home and sleep all day till it was time to pick them up, feed them, and go back to sleep. That's how I was feeling for a long time, just weighed down. Didn't really want to walk in a room, didn't really want to be bothered with anybody. Um, I had a good group of friends that helped me through it, and then I saw therapy on my own. I think that the anger part, and you know, grief comes in stages. I thought I was okay one day, and the next time something else happened, I wasn't okay. Like it was just a mess for a while. I remember the worst experience grieving I had was I was driving. I had just gone to drop something off, and I was on my way back home. One of her favorite songs came over the radio, and I don't know what happened to me. I just started crying. You know, stuff like that started happening to me. And then I would say, second year for life, holidays started becoming very difficult for me. Christmas, New Year's, holidays where I knew, oh, this is what we would have been doing if she was alive. And then when her birthday came and I was upset about that, and then Mother's Day would come. I was upset about that. Like it was always something making me upset. Or if I went out on Mother's Day and I saw other people with their mothers, I got angry. I wouldn't say that didn't go away till maybe uh three or four years after that, where I felt more through a lot of therapy and time, I came to a point where I was celebrating her life and doing things that I knew that she would like or enjoy. Like, oh, where would we have gone on her birthday? Or we we would have done this, or where would she have liked to go? I was doing that. So I started feeling better as the years went on. But if the beginning, no, not at all.

SPEAKER_00:

What do you think the anger was about for you in the beginning?

SPEAKER_01:

I would say the anger was, okay, everybody's rubbing their mother in my face. I don't care about mother's day. Like I I was acting like that. Sometimes I would sit down and ask myself if there was anything else that I could have done to help her be alive longer, if there was anything that I missed, something that I didn't say, you know, did we miss this? Should we have done something else? It was a lot of those scenarios that kept running through my head.

SPEAKER_00:

I know you said you had a group of friends who were very supportive and who kind of helped you through that period. Would you talk about those things with your friends, or did you work through most of that with your therapist?

SPEAKER_01:

So I talked about some of it, but a lot of deep stuff I worked through with my therapist. I did have supportive friends. I I had a friend who would just, if I needed to sit on the phone, she would literally sit there. She would talk when I talked. Like it wasn't a big deal. You value people in relationships like that. I had another friend who she kept calling me, making sure I was doing something. I had another friend that I was telling her to go away, she came over anyway. You know, things like that. Stuff that I, you know, at the time I was like, why are you in my face bothering me? Then, but now it was like I was so grateful for it.

SPEAKER_00:

Was going to see a therapist something that was new to you? Like, did you have some reticence about that in the beginning?

SPEAKER_01:

Uh I did. I had been taught over the years that seeking therapy outside help was not something that we as black people did. And I'm saying that because it was just something that was frowned upon. I think that well, no, I know that in my community it can be viewed as weakness. You just need to get over it. Life happens. You just need to stop. And I just decided that I was an adult and I needed to make a decision to benefit Candace. And I was alone by myself one day and I was listening to the radio. And it was saying how if you need to talk to someone, call his number. And that's how I started therapy. I didn't start the traditional way. I started Christian counseling first. I did that for like over a year when my therapist moved away. One of my friends referred me to Therapy for Black Girls, the website. That's when I found my therapist.

SPEAKER_00:

That's pretty cool. Because I feel like you always hear you hear those messages on the radio or like TV or whatever, and you're like, I wonder if this helps.

SPEAKER_01:

So I did, and it does help. I don't know if you have Moody Radio in California. It was a Christian radio station I was listening to. And they had licensed clinical therapists to call you back. But they have such a high turnover rate that they called me back about 48 hours later and they were asking me, talking to me. Anyway, I was able to speak to a professional, and he really walked me through some stuff and was talking to me really in depth. And then they ask you if you want to continue Christian accounseling and then they send you resources via email. And then they also send you resources dealing on whatever it is that you're facing with, if it's grief, if it's loss, if it's financial woes, if it's whatever it is, you know, so that they pushed me in the right direction.

SPEAKER_00:

So it sounded like that made it more accessible to you because it was a part of this Christian faith community, and that was familiar to you. So maybe it seemed less foreign and scary to reach out. Do you think that played a factor?

SPEAKER_01:

Yes. I grew up in church, so yeah, I would say yes, it did. But sometimes in churches, you think, oh, I'm just gonna be talking to a prayer partner. No, no, no. These were professionals able to guide you. This was not a call this number and someone will pray for you, and we'll get you over here. No, it wasn't that.

SPEAKER_00:

Got it. And therapy for black girls, it's the first time I'm hearing about it, but I'm gonna link that in the show notes. That sounds like an awesome it is.

SPEAKER_01:

It's a platform for women of color to find therapists. And I learned how vitally important therapy was and how it could be benefit your life.

SPEAKER_00:

And and I asked this question because it's not just in the black community. I feel like so many, you know, different communities of color, shun therapy, it's just the big taboo. It's like admitting that there's something wrong with you and it's shameful, it's embarrassing for the family. It's just old school. It is actually I feel like after COVID, it's like, who doesn't need therapy, please?

SPEAKER_01:

Oh my God. I said if if we're not zoomed and Microsoft teams out, I don't know what else to like. I'm just like no interaction. We're at home doing everything, like just our normal lives disrupted. Who don't need to go lay down on the couch after that? You're right. Absolutely. Absolutely.

SPEAKER_00:

And can you talk to us a little bit about how you found your way back to the workforce? Because I think that's also a big transition. Because it sounded like you were doing caregiving full-time between sister and mom. There's no way you also had a job in there somewhere.

SPEAKER_01:

So I had two younger siblings, and um, working my way back was so difficult. Um, so I hadn't worked in six, seven years. So I had this big gap in my resume, and having to explain that gap was so challenging. It's one thing when you tell the story of actually what happened, you were caring for a family member. And it's another when you go to an interview and they some of them were like, Oh, wow, can you tell us more about that? And then you had the other employers that were like, Yeah, so while we think that's so noble, um, we're gonna go with someone else. Like, I had both reactions, and it it was hard.

SPEAKER_00:

Yeah.

SPEAKER_01:

If anybody, even like stay-at-home mothers with a stretch of time where you just have it working, you have to explain that, that could just be a little, I don't want to say intimidating, but even rough to get employers or prospective employers to even understand. So I had to start at the bottom, I had to tempt for a while. And during COVID, the place where I was worked at, you know, when we shut down as a state, they let me go. And so then I had to scramble to try to find something else. I worked at a homeless shelter during the pandemic for about nine, 10 months. And then I saw a position one day when I was applying for work, and that's how I got into the hospice palliative care.

SPEAKER_00:

And when you had to explain the gap to the employers, did you actually tell them like I was doing caregiving for a sick family member? Or what did you actually tell?

SPEAKER_01:

Yeah, I did. I actually spoke to someone who had been through a similar situation. They told me that you have a story, it's a unique one. And it's all about how you craft it whenever you're interviewing. And if it they want to know why you weren't working, tell them why. I had I was caring for a family member, I was caring for this. Um that helped me. It helped me uh feel a little bit better about it. Nonetheless, it was still hard. I remember sitting at my computer sometimes for hours a day because looking for a job is a job. So, I mean, I literally would sit all day and do that. And then I would tell employers exactly like if they invited me for a face-to-face interview, I would tell them why. With some positions, I got down to like the last candidate and for a job I knew I could do and still didn't get it. And you know, if you ever had to job hunt for long periods of time, it can really mess you up, like make you feel really bad because it's like no one's giving me a chance. That's where therapy came in, because I really was I was like, I don't understand. I know I'm capable, like I it wasn't my fault. I was out of work, you know, I was going through all of that.

SPEAKER_00:

Yeah. And also something that somebody else had mentioned to me one time is like just even having to talk about the experience, like in an interview to a stranger, it's like you're being re-traumatized.

SPEAKER_01:

Yes, you have to go through it again with people that you don't know or trust.

SPEAKER_00:

Yeah, and you have to like hold it together and act professional, which is a whole nother set of challenge in an interview. I I know you've worked through a lot of the emotions that you had and the grief, and as you said, yes, grief comes randomly in waves in the most unexpected places. With the work that you're doing now, is that hard for you? Is it too close to home sometimes?

SPEAKER_01:

Okay, so with where I am now, I can talk about it and not have an emotional episode. That's only because it's six years later. So I've come to an acceptance. Now, if you're asking me, what this has been mean for three, four years, no, I wouldn't be able to, and I in certain situations you're not able to speak about it because you're just not ready, not mentally or emotionally prepared for what that's gonna look like. Now I'm a lot better. I'm able to talk about the experience and not so much relive it, but talk to it in a way that's more inspirational. But that took me time, it took a lot of time, not something that you could just start doing.

SPEAKER_00:

Yeah, a lot of time and work with your therapist, right?

SPEAKER_01:

A whole lot.

SPEAKER_00:

Do you find it, on the other hand, maybe healing in some ways?

SPEAKER_01:

Yes. I guess I found a positive way to channel grief. I just wanted to be around more like-minded people. And I think that's what has that in a whole lot of therapy has gotten me to this point.

SPEAKER_00:

When you say like-minded people, do you mean the people that you work with now?

SPEAKER_01:

In the advocacy world, yes. People who were fighting for the same common cause, who were understanding who had been through similar situations, women who have had ovarian cancer, beat ovarian cancer, some people who have had major recurrences of cancer. Um, learning about just every resource that I knew to become like a strong advocate has helped me because I've met so many different people and it's opened up lots of uh different opportunities for me, stuff I just didn't expect.

SPEAKER_00:

Is there anything else that you want to mention to the listeners that we haven't touched on in our conversation so far? So, for caregivers, whether it's during the caregiving process or afterwards as a part of their grief journey?

SPEAKER_01:

So I'm a contributor for caregiving.com, it's a website. And I wrote about National Black Family Cancer Awareness Week back in June and why I promoted it and why I decided to do it. And I also have a post coming out soon on compound caregiving when you take care of more than one person at a time. And like different tips for people who are going through something similar. And I think that anyone who is going through grief or you're experiencing something, figure out a positive way to, I don't think give back is the word I want to say, but figure out, I guess, an outlet, a positive one. An outlet that will help you be creative at the same time, help you along your pain because it can dwindle. And knowing that it's okay to ask for help, don't be afraid to. Caregivers are afraid to ask for help, don't want to feel like a burden to anyone. Being sure to, if there are support groups and you want to join one, that is a non-judgmental space for you. Please do that to say how you're feeling and to just connect with other like people in your area or wherever you may live that are going through the same thing that you're going through can also help.

SPEAKER_00:

And where can listeners connect with you online?

SPEAKER_01:

So I'm on every cancer platform you can think of. If you go to okrahope.org, you will find the Ovarian Cancer Research Alliance. If you go in the search bar, you type in my name, you can read about my advocacy story.

SPEAKER_00:

And you're on Instagram.

SPEAKER_01:

It's Candy underscore coded. K-A-N-D-I underscore K-O-A-T-E-D.

SPEAKER_00:

Thank you so much, Candace, for taking the time to chat with me today. I appreciate you, I think, being really candid about some of the challenges that you had with your mom because it's one of those things that's so common for people going through this experience because you know, when family is put under stress, it tends to amplify whatever existing dynamic there already is. And I think it's just out of an abundance of love that oftentimes we don't necessarily want to call out our family members in the public way, but I feel like that at the same time sort of brushes away the challenges that caregivers are really going through. And it it's real.

SPEAKER_01:

Yes, it is.

SPEAKER_00:

It's a cluster that both are in, but I just feel like sometimes it gets lost because caregivers want to protect the ones that they love, but it's a real challenge.

SPEAKER_01:

Yes, it is, absolutely. Thank you for talking to me today. I really enjoy it.

SPEAKER_00:

Thanks to Candace for sharing what it was like to return to work after having been a full time caregiver for a number of years. This is another layer of a complexity that caregivers have to deal with, on top of the emotional turmoils that could come with grieving the loss of. Loved one. And Candace was absolutely right about feeling bad about yourself when you keep getting rejected by employers. I know that feeling, and can only imagine how hard it would be to have to go to interviews when you're still trying to make sense of the traumas you experienced. Candace's experience reminds us how important and helpful working with a therapist can be when you're dealing with grief. And that's a wrap for today. Please consider following the podcast if these stories are resonating with you. Also, I'm in the process of planning for the 2022 season, so if there's a topic you would like me to explore, please contact me by emailing info at talkabout cancerpodcast.com. Thank you for listening.