Hope for living, loving and caring with no regrets!

Cooking up caregiver success

Episode 125

This week, Rayna Neises, your host, speaks with Heather Carter.  In 2015, Heather was diagnosed with Acute Myeloid Leukemia.  During her hospitalization and illness, she began updating people on her status via blogging.  Heather shared her fears, struggles, inspiration, and spiritual observations.  Eventually, she was able to find ways to be grateful for what the disease triggered in her and the blog went from updating people on the health and healing of her body to reflecting on the health and healing of her soul. Heather writes about cancer, addiction, and diseases of the soul like worry, fear, control, comparison, and resentment.  Two books have come from her blog, Soul-Selfie, and Soul Selfie: #nofilter.  She shares the following about her season of being cared for:

  • (3:45) How others react does affect the health as well as the spiritual and emotional wellbeing of the person who is sick.
  • (4:03) Remember to just be with the person you are caring for.
  • (5:25) Treat the person regularly and do regular life stuff.
  • (6:30) Ask them what they want and need.
  • (9:16) It is okay to show that you are sad and that you feel sad for the person who is ill.
  • (11:30) You have to stay in good mental, spiritual, and physical health, or you will not be able to continue to care for the person.
  • (12:04) Support from a community is critical for the caregiver and the one being cared for.
  • (21:44) Find Heather’s blog posts (sorts available by topic) and links to purchase her books on her website heathercarterwrites.com.

Transcript

*Transcript is an actual recount of the live conversation

Heather Carter: 

A big thing that was helpful, is just having people treat me regularly and do regular life stuff and not always have to talk about cancer or how I’m doing with the cancer.

Rayna Neises: 

That is my guest today, Heather Carter, who was diagnosed with Leukemia. She is sharing with us today about her season of being cared for. Welcome to A Season of Caring Podcast where there’s hope for living loving and caring with no regrets. This is Rayna Neises, your host, and let me introduce you to Heather. In 2015, Heather was diagnosed with Acute Myeloid Leukemia. She spent 70 days in the hospital over the next seven months. After the first week, she began updating people on her status via blog. Her blog shared her fears, struggles, inspiration, and spiritual observations with those who would read it. She told about the raw, messy, embarrassing, and often ugly thoughts and feelings she felt about what was happening to her and why. Eventually she was even able to find ways to be grateful for what the disease has triggered in her and the blog went from updating people on the health and healing of her body to reflections on the health and healing of her soul. She writes a lot about cancer, addiction and disease of the soul. Diseases, like worry, fear control, comparison, resentment. Just to name a few from her blogs has come to books, Soul Selfie, and Soul Selfie, No Filter, which is available at her website at heathercarterwrites.com. All of us are affected by the disease of the soul, being broken and vulnerable with others is what gives Heather hope and that she can get better. And so can you. Welcome Heather. So good to have you here today.

Heather Carter: 

for having me. I’ve been looking forward to it. We’ve been talking off and on for a while. So I’m glad it’s finally.

Rayna Neises: 

Yeah. So, my audience is people who are taking care of others. So I know that you’ve been on the other side of the journey in living with, and overcoming leukemia. So tell us a little bit about what you learned through your illness and how it impacted your life.

Heather Carter: 

um, Just to give you kind of a little, give the listeners a little more history you know, I have a, a husband and three kids, and then I have parents and in-laws that kind of live nearby. So when I was diagnosed with leukemia in 2015 I did have a lot of help. And luckily for me, it. Healthy help. I’ve talked and walked through cancer and other diseases with a lot of people and found that there is such a thing as help that’s not helpful. And I’m grateful that I had that, but I do. I, you know, even in the hospital, I was in the hospital about total of 70 days and I was on the cancer floor so I could hear families fighting. I could hear. And even my family was definitely not perfect in that. I was in ICU for a week and I know that there was a lot of discussion and heated discussion and discrepancies about what they thought should happen to me. And because everybody’s so scared, you know, they’re fearful and they don’t know what they’re doing and they don’t totally trust the doctors cuz I’m intubated. So they’re thinking, well, what are you doing wrong? Why can’t you savor? So I think it brings out, unfortunately, some of our worst character defects when we’re scared for our loved one’s health. And I think that we need to learn when we are in those situations and to protect ourselves from family members or outside people who are causing extra stress on our already volatile state of our bodies. So I think it’s important for caregivers to remember that how they react really does affect the health and wellbeing and spiritual and emotional wellbeing of the person who’s sick.

Rayna Neises: 

Definitely. And all of that was going on and you weren’t aware of it necessarily, but the repercussions.

Heather Carter: 

glad I was in a coma during that week, that week, Because there was a lot of tension, but I, you know, we learned so much about each other and I really I it’s too bad sometime you should interview my mom because she was definitely someone who was there for me. Just through all of it, just to do regular stuff with, you know, it wasn’t constantly sad or talking about how sick I was. It was just come in and paint my nails or come in and watch a movie with me. Just doing regular things I think is important during those times.

Rayna Neises: 

I think sometimes as caregivers, we forget to just be with the person. We have a tendency to be so focused on all the other things, whether it be taking care of the house or your kids, or, having to worry about what the medications and are you getting them on time and all of those things that there’s so many things on the caregiver list that we kind of forget to be. So that I think is great advice. And part of what I wanted to be able to ask you about was just, What was helpful to you and what as a caregiver do we need to keep in mind? So the first thing you just said was just relationships and that, even though you’re at an emotionally high state, to make sure that you’re mindful of those relationships and that you are caring for each other and not just go on a rampage,

Heather Carter: 

Exactly. Yeah. There’s, there’s a lot of opportunity for conflict in these kind of environments. I know for me that was a big thing that was helpful. Like I said, is just having people treat me regularly and do regular life stuff and talk to not always have to talk about cancer or how I’m doing with the cancer. The blog that I started writing that turned into these books, started because I, I did start updating people about my, the status of my cancer. But soon, you know, who really wants to talk about that over and over and over, I just started seeing some positive things in the situation I was going through. Talked about different nurses or doctors or people that were helpful to me and would write about those things. And that continued on. It was a way to be grateful and to redeem some of the, the bad stuff that you’re going through.

Rayna Neises: 

So the writing was definitely therapeutic for you as well as probably helping others to journey with you without it being the topic of every conversation you’ve ever had.

Heather Carter: 

Yeah, it gives them permission. You know, they can’t cure you and they need to know. I, I think also telling them how you want to be cared for is helpful instead of them thinking that you are incapable of any of it and just kind of bulldozing what you want, just to be mindful of the person who’s sick and what they want, ask them what they want, ask them, what they wanna do and how they wanna do it instead of just taking over. I think that that was, that was helpful that my mom did that. She didn’t try to make me do anything unless I was refusing to eat or something when I needed to eat. But.

Rayna Neises: 

Again, I think as caregivers, we have a tendency to be in control and we aren’t. And so we wanna, then we try to control all the things that we can control. And so that’s a good tip too, is just asking, what do you need? What can I do for you? What do you need help with? What can I do is so helpful. So what was some of the things that the people I always think as we are family caregivers and the, but there’s a lot of professional caregivers. You were in the hospital a really long time. So what made some of the people who were caring for you stand out?

Heather Carter: 

Well, I think just the empathy and having them come in and say that they understood, maybe not exactly how I felt cause they didn’t have that disease, but that they had been through hard things before and just coming alongside me. That was definitely helpful. I know in the hospital I had nurses come in and the day I got in there, I had blood work that morning at 11 and by four o’clock they told me on the phone. You have leukemia. We have a bed for you. You need to come to the hospital immediately. And so within an hour, I was checked in and in a hospital bed and we were in complete shock, no idea that, you know, I knew I’d been having some weird symptoms, but they had told me I had rheumatoid arthritis and I still kind of knew that wasn’t quite right, but I didn’t have a clue about leukemia or what it was. Now, if you told me the symptoms that I was having. If someone told me those symptoms, I would say, you may have leukemia. You should probably get tested. That’s how obvious they were. But I didn’t know about leukemia at the time. So when I got there and my husband and I are just stunned sitting on the edge of the bed, the nurse came in, her name was Star, and she sat down and cried with us and put her arm around me and said, It’s gonna be okay. It’s just a hiccup. It’s just a hiccup. Everything’s gonna be okay. And just, but she, she patted me on the back and hugged us and cried with us. And, you know, she sees this dozens of times every week and still managed to feel, feel bad enough for us to be crying with us, which was amazing. You know, she wasn’t hardened to it. As caregivers, I think it’s okay to show your emotions too, about it, that you’re sad and that you feel sad for the other person.

Rayna Neises: 

Really being present with you sounds like she was able to really see where you were and to just empathize with that and be present. So, but I think that’s a good tip because oftentimes as caregivers we are trying to be upbeat for the person we’re caring for. So we have a tendency to never share our own emotions.

Heather Carter: 

Yeah. And you know, I have a friend right now, who’s caring for her husband who had an accident. And he’s been in a hospital bed for three months and I took him some food a couple days ago and she just. Was a, she said, you know, a few days ago I had a mental nervous breakdown cuz I just can’t do it anymore. He’s seeing a counselor and he’s everybody’s giving him cards and reaching out to him and every time they call, they ask about him and she just hadn’t been taking care of herself. She was stressed out, her physically, she was exhausted. And I just it’s important for caregivers. Just like with anything else, like mental health, you know, they talk about putting that oxygen mask on your face first, before you can help somebody else. You have to get the counseling or, you know, get a support group of people who are also caring for loved ones. Get sleep, get exercise. Get out of the hospital. If someone’s in the hospital, you’re there all the time. It’s not gonna do them any good for you to have a nervous breakdown because you’re caring for them, but forgetting to care for yourself.

Rayna Neises: 

And even as the person being cared for you see that and you don’t want that for them. And I think, again, as a caregiver, we forget that we’re important to the person that we’re caring for and they want what’s best for us too. So very

Heather Carter: 

Yeah, I mean, you have to stay in good mental spiritual and physical fitness, you know, you have to mind your fitness in all those areas. Otherwise you’re not gonna be able to continue to care for that person, or if you’re emotionally getting worn down and you’re cranky or snapping at people like that’s not helping your loved one either.

Rayna Neises: 

Definitely. So what do you feel like your family and friends did really well in supporting you? Because out of the hospital then what did it look. How long was your recovery and that kind of thing? What did they do well during that?

Heather Carter: 

Well, I think of the best things was, you know, OB there’s the obvious things that we all need is support from a community where, you know, I had people pulling weeds in my yard and bringing food. I’m still trying to figure out how I can manage to get meals brought to me. cause that was quite lovely. But people are bringing food to my family and cleaning my house and all those things. So, you know, it’s important to be in community. And I always say, you have to cultivate that community before the catastrophe. I don’t know how people do it. If they’re not in a church group or in some sort of community, when these things happen, there’s no one to step in and help you with those things. I mean, we could not have done it by ourselves. So there was such an outpouring of people helping us that we didn’t even know. And there are people, if you’re going to church, you don’t have to, you might be brand new, but if you reach out to your church or something, those people can help. I mean, I had people I’ve never seen before who were bringing me food and pulling weeds in my yard and stuff. Then I’d go to church later and I’d see, ’em, I’d be like, oh my gosh. Hi. And they’re like, Hey, like, I’m like what? I thought we were like, best friends now. you know, they’re just there because that’s their gift is they’re not rude, but they just, they’re there to make meals for people. That’s their gift. Or clean someone’s house or acts of service. So there’s people out that that can help you. Don’t just because you’re the family member doesn’t mean you have to do all the caring. my mom was here, but to help me, but she didn’t, she count my house clean, but she, I didn’t expect her to get in and clean all my toilets and stuff. People were coming in and doing those kinds of things. So, lean on those people to help you. You don’t have to be the only caregiver just cuz you’re related. I think one of the main things that people did for me is that they were con not every single person, but a lot of ’em were very consistent. I had one friend, her name’s Mary daily, and I laughed because she daily texted me, every single morning. She would wake up and say, Hey, I’m just thinking about you today. I hope you’re feeling great today. Love you. Every single day. And that was significant to me. It didn’t really even matter what she said. It’s just that the fact that every day I knew she was gonna, she would reach out to me and that I was on someone’s mind because you feel like so isolated when you’re sick. Your friends are going out, you can’t go. And you can’t even go to the grocery store. You can’t go back to work and you feel like life’s just go and by without you. So.

Rayna Neises: 

Wow.

Heather Carter: 

as friends and family just that consistent. You know, I also have another lady named Julie who was my mom’s friend, actually in Peoria. And she sent me a card in the mail probably once a week, at least for seven months. And I didn’t know her that well either she just sent a funny card or something just to let me know I was being thought of. So I think those are things that we can all do. We don’t always know what to say, but it doesn’t really matter what you say. You just need to say it often, whatever it is, or send a card often, cuz it’s a life goes by quickly. If you’re, you know, when they say time goes flies, when you’re having fun. But when you’re not having fun, it goes very slow. Those six days in the hospital at a time can drag on and on, but for someone else who’s running errands and going to their kids’ sports stuff, whatever it’s just flying by. But we have to remember it. Time is dragging on for people who are sick.

Rayna Neises: 

That’s such a good thing to remind us of, because even if we’re long distance caregivers, or if we can ask someone. As my parents progressed in their disease it was hard for their friends to stay connected. And when I look back and think, oh, I wish I had said, just send a card. I mean, that would’ve made such a difference because my dad kept all of the cards and frequently you walk in and find him flipping back through them later. It is such a little thing, but it has such a big impact. So I love that reminder of just doing something consistently, whatever that might be, and it could be

Heather Carter: 

Yeah. I also think like if you’re trying to help a person who is sick maybe, if you’re close family, it’s one thing to say, how can I help you? But for us, when strangers were like, what do you need? How can we help? Like, that was kind of almost like a burden to figure that out. It was better when someone just showed up and said, here’s a gift card to such and such a place. We were thinking about you or here’s we’re gonna come. And we had some people who own a car detail shop and they came and just said, we’re gonna take your cars and get ’em cleaned. That’s something we can do for you. Just do what you can do and it doesn’t have to be the exact thing they need. It just might be some way that you can serve out of the resources that you have. Because we’re making so many decisions when we’re sick and our family members, like we’re like, I don’t know. I just, whatever, just do whatever it’s too much to figure out sometimes. So. You know, it’s okay. If it’s not the perfect match for what they need, just do it anyway.

Rayna Neises: 

Well, and so many times what you just said too, is we don’t even know what we need. And so it’s that person that comes in and does something that you didn’t even know that was like, oh, wow. I haven’t even thought of that. I think of things as simple, as changing out the batteries in your smoke detectors, when something goes on a really long time, you just don’t think of those regular things that are just upkeep of life. Right. And just having somebody think about and offer to do those types of things can be so impactful. So that’s a, that’s a great tip as well. Tell us a little bit more about Heather, how your books came about and what kinds of things you share in your books. So that my audience can connect with you.

Heather Carter: 

Well, when, like I said, when I was in the hospital, we started a blog just to update people on the status of my cancer, because, we had my whole entire family on my husband’s side. Is in ministry. So there were literally like 20,000 people checking in on us every day. And there’s no way, obviously we can manually answer all those questions. So we just started this blog and then about I think I, I ended up, I was in the hospital for 30 days, 35 days actually. And part of that, I ended up in ICU and intubated and I got out of ICU, March second. And my first entry in my book is March 29th. And I only say that to say that, we don’t have to be. A hundred percent better or a hundred percent well or arrived at that benchmark that we want to be at in order to serve and help others. And so what I write about is really not about cancer. It’s more about how God is using the drama, the trauma and minutia of everyday life in how he is using that to grow me up. And I might not have arrived, but I’m, I might be a little bit further down the road than someone who’s struggling and me sharing my struggles and some things that maybe God is trying to teach me might encourage them. So I write like a daily reading type of book. We all have soul sickness. We all have this disease of the heart or common plagues of the heart as I call it that we all struggle with at any given time with worry fear, resentment control. Just to name a few of my signature sins, I guess, or character defects. And those are things that I found are universal. So when I was writing about, even though I was writing out of my cancer journey, I realized that God kind of said to me, Heather, you are a full-time job. You just need to flip that camera back around on yourself and take a picture of your own soul, stop, minding everybody else’s business or trying to, and trying to imitate it, or judge it, just focus on your own junk. And I’m gonna help you use some of that to encourage other people who are going through the same. And so I haven’t run outta material because I continually have things like that that I need to focus on. And so if you go to my website the books are a compilation of the first 120 blogs I wrote while I was struggling with the cancer journey. And then the next book, Soul Selfie, Hashtag No Filter is the second chunk. Of about 120 blogs. And they’re like two pages long because my brain can’t focus much longer than that. So I assume there’s other people who can’t either. So it’s just, read one a day. It’s not a sit down, read it all at the beach or something like that. It’s just a read one a day. Try to maybe do what it says or reflect on it. And then move on to the next one. So I didn’t ever write anything before I had cancer. I didn’t want to, I didn’t plan to, but God’s just helping me be more authentic and vulnerable like public transparency and I find that that’s how people feel like they can be encouraged, cuz they know they’re not the only one who struggles with these things. And even if it’s just me and that person, at least that’s two of us,

Rayna Neises: 

And I’ve enjoyed reading through. I have the Hashtag No filter and just reading. You have lots of different topics every day. You never know what’s coming. So that’s kind of fun to just stop and think about something new and I’ve enjoyed reading through. So I appreciate you sharing that with us. Again, your books can be purchased at Amazon as well as on your website.

Heather Carter: 

Yeah, Heather Carter writes.com. It’s also at Barnes and noble site and probably a few others, but those are kind of the main ones. And I will say the thing I love about my website. If you go there, you know, if you wanna try before you buy or whatever you can read, there’s probably 400 blog posts on theirs. There’s maybe 70 that are not in a book yet. The more recent ones, cuz I try to write once a week and if you scroll down in ways, it will say browse the archives by category. And that’s what I love. There’s probably 40 different topics and it will have topics like control, worry, fear, resentment, forgiveness, surrender trust. And so whatever you’re questioning or struggling with that day. If you wanna just go and click on one of those, you can read everything I’ve ever written about forgiveness and resentment or control. And I do that pretty regularly too, cuz sometimes I forget. Oh yeah. I forgot. I believe that I forgot. I know the answer to that. I just wasn. Utilizing that answer. So I think that’s helpful too, is like you, you don’t have to go just looking through my book to find the topic you can just go there and everything I have written on that is slowly being added to that for a while. I must have just like spaced out and forgot to categorize like a big chunk. So that’s my mom’s job. I’m making her go back and read through ’em and put ’em in some categories, but there’s a good chunk of ’em in there for people.

Rayna Neises: 

Great. Well, listeners, I hope you’ve enjoyed my conversation with Heather today and definitely take the time to look up her resources at www.Heathercarterwrites.com. And don’t forget A Seasonal Caring Podcast has been created for the encouragement of family caregivers. If you have legal, financial, or medical questions, be sure to consult your local professionals and take heart in your season of caring. This episode has been sponsored by The Gratitude Challenge, a 21 day really simple, challenge to help you learn to flex your gratitude muscles. Join me by signing up at aseasonofcaring.com/ slash gratitude/

This Episode was Sponsored by:

Heather Carter

Heather Carter

Author & Cancer Survivor

Heather Carter is a wife, mother, author, and cancer survivor. In 2015 Heather was diagnosed with Acute Myeloid Leukemia (read: “abrupt and devastating interruption to life as you know it”). She spent 70 days in the hospital over the next 7 months. After the first week, she began updating people on her status via a blog. Her blog shared her fears, struggles, inspirations, and spiritual observations with those who would read it. She told about the raw, messy, embarrassing and often ugly thoughts and feelings she felt about what was happening to her and why.

Eventually she was even able to find ways to be grateful for what her disease had triggered her and the blog went from updating people on the health and healing of her body to reflections on the health and healing of her soul.

She writes a lot about cancer, addiction, and diseases of the soul. Diseases like worry, fear, control, comparison, resentment, just to name a few. From her blogs has come 2 books:  Soul-Selfie and Soul-Selfie #nofilter which are available at her website www.heathercarterwrites.com

All of us are affected by the disease of the soul.  Being broken and vulnerable with others is what gives Heather hope that she can get better and so can you. We can remind ourselves that there is always hope and we are all in this together.

Your turn, share your thoughts . . .

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Meet Your Host

Rayna Neises

Rayna Neises, ACC

Author of No Regrets: Hope for Your Caregiving Season, ICF Certified Coach, Speaker, Podcast Host, & Positive Approach to Care® Independent Trainer offering encouragement, support, and resources to those who are in a Season of Caring for Aging Parents.

Her passion is for those caring and their parents, that they might be seen, not forgotten & cared for, not neglected

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