Anxiety Management for Patients and Caregivers

This podcast was originally published by The Cancer Cast with Weill Cornell here.

 

Kelly Trevino, Ph.D., Clinical psychologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital – Speaker Bio
  • Why anxiety management is so important for all those affected by cancer, plus actionable coping strategies.

    Guest: Kelly Trevino, Ph.D., a clinical psychologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital.

    Host: John Leonard, M.D., world-renowned hematologist and medical oncologist at Weill Cornell Medicine and NewYork-Presbyterian Hospital

Care Coordination for Your Loved One Living with Cancer and Other Health Problems

This podcast was originally published by Cancer Care.org on June 17, 2019, here.

 

 

Topics Covered

  • Overview of Cancer & Co-Morbidities
  • The Role of Caregivers in Care Coordination for People Living with Cancer & Co-Morbidities
  • Tips for Communicating with the Health Care Team about Care Coordination
  • Challenges of Coordinating Your Loved One’s Care & Follow-Up Appointments
  • Adherence – Taking Pills on Schedule
  • Lead time in Refilling Prescriptions & Planning for Visitors, Weekends, Special Occasions, Travel & Holidays
  • Resources for the Costs of Care, including Homecare
  • Finding the Practical Help You Need: Co-Pay Foundations & Federal, State & Local Programs
  • Legal Advocacy Tips for Caregivers
  • Learning How to Appeal Insurance, Medical, Medicaid & Provider Denials
  • Other Resources, VA Benefits & Family Medical Leave Act/FMLA
  • Tips on Choosing Community & Medical Resources to Improve Your Quality-of-Life
  • Time Saving Self-Care/Self-Advocacy Tips for Caregivers
  • Questions for Our Panel of Experts

Our Panel of Experts

Stewart B. Fleishman, MD

Former Founding Director, Cancer Support Services, Continuum Cancer Centers of New York, Author, Researcher in Oncology

Guadalupe R. Palos, RN, MSW, DrPH

Clinical Protocol Administrative Manager, Office of Cancer Survivorship, The University of Texas MD Anderson Cancer Center

Debra J. Wolf, Esq.

Senior Supervising Attorney, LegalHealth, New York Legal Assistance Group (NYLAG)

Carolyn Messner, DSW, OSW-C, FAPOS, FAOSW

Director of Education and Training, CancerCare

How To Be A Better Caregiver When A Loved One Gets Sick

This podcast was originally published on National Power Radio on July 12, 2019 here.

None of us are prepared to be caregivers — the role is thrust upon us.

Maskot/Getty Images/Maskot

 

None of us are prepared to be caregivers — the role is thrust upon us. More than 40 million Americans are caring for an elderly parent or loved one. Here are six tips to make the caregiving burden more sustainable:

1. Accept help, and don’t be afraid to ask for it.

People will ask you what they can do early in your parent’s illness, so strike while the iron is hot, says Katy Butler, author of The Art of Dying Well.

“Right after a crisis, friends and family rush in and say, ‘Is there anything I can do?’ ” Butler says. “And you’re often so overwhelmed you can’t even think. But strike while the iron is hot and take advantage of it.”

Ask for specific things like a meal or caregiving relief to allow you to take some time out.

2. Break down caregiving tasks into bite-sized solutions.

Figure out the tasks that sap your energy the most (is it bedtime? Dressing? Transportation?) then think about who you can get to help with those specific tasks. It’s a lower-cost solution than full-time care or institutionalization.

The National PACE Association can provide services that help support family members so the people they love can continue to live at home. PACE operates in 31 states; check to see if your state is one. Other options include Home Based Primary Care through the VA for eligible veterans, van services and Meals on Wheels.

3. Don’t tell your loved one what to do. Ask about the quality of life they want and how you can get them there.

Minimize conflict with your family members by identifying their goals rather than issuing them orders. That way, you can work together to achieve them.

Make a list of things your loved one really loves doing, whether it’s a weekly bridge game, listening to music or having tea with a friend. You can also find ways to help outsource these kinds of tasks, too.

“You’ve got to be thinking about what makes this person’s life worth living,” says Butler.

4. Be an empowered medical advocate for your loved one.

The inertia of aging and medical care will lead your loved one down a slope of more tests and procedures if you don’t keep track of the big picture. For many elderly parents, a good quality of life is much more valuable than more years spent suffering or tethered to medical appliances. A key caregiver job is asking how a proposed procedure will improve your loved one’s quality of life. If it won’t, then don’t.

5. Get your legal ducks in a row so you can focus on your relationship

As a caregiver, you’ll be called on for medical and financial decisions. The sooner you brave those difficult conversations for end-of-life care, the better you’ll be able to stick to your loved one’s game plan for the future.

Help your loved one create an advance directive (if they haven’t already), a documentation of a patient’s preferences regarding their care. According to surveys, only about a third of Americans have one. You can find inexpensive templates online at sites such as Five Wishes.

6. Make sure to take care of yourself, too — you are more than a caregiver.

Caregiver burnout is a real phenomenon. Taking on the role of caregiver often starts in crisis and becomes the new norm, which can alter your life forever. Make sure to take time out to care for yourself; getting away for a bit is good for you and your loved one.

Also, savor the little moments with your loved one. Your relationship roles may have changed, but you’re still family.

“Remember that you are more than just a caregiver,” Butler says. “You’re also that person’s son or daughter. If there are ways that they can still mother or father you, even in their decline, even with their disabilities, soak them up.”

What Every Cancer Caregiver Should Know, With Kaycee Carmichael

This podcast was originally published on WE Have Cancer Show by Lee Silverstein on May 21, 2019, here.

Kaycee and Jane Carmichael – WE Have Cancer

 

 

 

In 2016 Kaycee Carmichael’s mother was diagnosed with Colorectal Cancer. Though her mother died only four months after her diagnosis, Kaycee learned some valuable lessons about life as a cancer caregiver as well as dealing with grief.

We discussed:

  • Her Mother’s life as a teacher and the incredible impact she left on her students.
  • How her mom came to be diagnosed.
  • How she managed the challenges of a cancer caregiver and some helpful tips and advice for other caregivers.
  • How she deals with the grief from her mom’s passing.

Links Mentioned In The Show

Lotsa Helping Hands – https://lotsahelpinghands.com/

Connect with Kaycee on Facebook – https://www.facebook.com/kaycee.lang

Follow Kaycee on Instagram – https://instagram.com/kacellaneous

WE Have Cancer Links

Subscribe to the show – https://pod.link/wehavecancer

Follow WE Have Cancer on Social Media

Like our Facebook page – https://www.facebook.com/wehavecancershow/
Join our private Facebook group – https://www.facebook.com/groups/wehavecancershow/
Follow us on Twitter – https://twitter.com/wehavecancerpod
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Caring for a Spouse with Cancer

This podcast was originally published on Cancer.net by Scott Joy on September 20, 2018, here.

 

Caring for a loved one with cancer can be challenging as well as rewarding. But you are not alone. In this series of podcasts, developed in collaboration with LIVESTRONG, Aditi Narayan and Mike Threadgould interview family caregivers, who share their stories and offer advice for others facing similar situations.

In today’s podcast, Scott Joy, a testicular cancer survivor and patient advocate, discusses his experience when his wife Judy was diagnosed with multiple myeloma, including some of the bright spots and challenges, things he wishes he had known at the time, and tips for other caregivers.

Transcript:

[music]

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

Caring for a loved one with cancer can be challenging as well as rewarding. But you are not alone. In this series of podcasts, developed in collaboration with LIVESTRONG, Aditi Narayan and Mike Threadgould interview family caregivers, who share their stories and offer advice for others facing similar situations.

In today’s podcast, Scott Joy, a testicular cancer survivor and patient advocate, discusses his experience when his wife Judy was diagnosed with multiple myeloma, including some of the bright spots and challenges, things he wishes he had known at the time, and tips for other caregivers.

Aditi Narayan is a social worker and Director of Programs & Strategy at LIVESTRONG, and Mike Threadgould is Senior Manager of Marketing & Communications at LIVESTRONG. Scott Joy is a LIVESTRONG senior leader and a member of Cyclists Combating Cancer.

ASCO and LIVESTRONG would like to thank Mr. Joy for discussing this topic.

Aditi Narayan: I’m Aditi Narayan.

Mike Threadgould: And I’m Mike Threadgould.

Aditi Narayan: And we’re with the LIVESTRONG Foundation where our mission is to improve the lives of people affected by cancer now. We are joined today by Scott. Scott, thanks so much for being here.

Scott Joy: I’m happy to be here with you.

Aditi Narayan: Thanks. Can you tell us a little bit about who you are and your connection to cancer?

Scott Joy: Yes, I can. My name is Scott Joy, and I’m from the New Hampshire seacoast. I’m a father of four adult children in their 20’s. I’m a business technology professional, a tenor, a recreational cyclist, and a 15-year testicular cancer survivor myself, and a LIVESTRONG volunteer since my diagnosis.

But I’m here to talk about my role as a caregiver for my wife of 26 years, Judy, who was a beautiful woman, intelligent, witty as a can be, a novelist of 2 young adult science fiction novels. And, unfortunately, 10 years after my diagnosis, she was herself diagnosed with multiple myeloma, which is a blood cancer, and only lived with the disease for about 3 months or so. So I’m here to talk about that.

Aditi Narayan: Thank you for sharing.

Mike Threadgould: And so, obviously, here we’re talking about roles as a caregiver. What would be something you would share with somebody else who was facing being a caregiver and the challenges or the opportunities that they would face?

Scott Joy: I think the first thing I would say is to be easy on yourself, that it’s a tough role, and you will make mistakes. And if you can talk them through, mostly with yourself, just be kind on yourself. Do your best. Accept all of the feelings as they come. You’ll have them all. Take help where you can get it. Be sure to take care of yourself, to step back and rest when you need to, and just do what you can.

Aditi Narayan: And would you say that those are things— I mean hindsight is 20-20, right? So are those things that you did yourself? Did you accept the feelings during the process, or was that something you wish you had done after?

Scott Joy: It’s always a mix, right? So there are some things that I— I felt fairly prepared just because at that point, I’d had 10 years of experience myself in the patient role. I had friends from the LIVESTRONG community. I felt I had lots of resources I could turn to, both for information and for emotional support and just for the practical, “what should I do?”

But it’s still hard. Knowing that you can do it and feeling that you can do it are awfully different things. So I did feel somewhat prepared, but I had a lot of learning to do along the way to feel like I’m not doing enough: there’s got to be something more we can do. I’m doing too much: Judy’s now feeling overwhelmed with all of the options I’m trying to provide to her, and she just wants to talk to the doctor, and get into treatment, and not worry about all of the other things I might be able to do to help her. I’m going too far now. So I had a lot to learn.

Aditi Narayan: Yeah. It sounds like it. And so would you say that communication line between you and Judy seemed to be really important in keeping that open?

Scott Joy: It absolutely is important. I’m not going to say I got it right all the time, for sure. But I do think that her diagnosis actually helped our communication in some ways. She could now sort of suddenly understand some of what I’d gone through and appreciate it more. She told me at one point, “You know? I would marry you all over again,” which is something I hadn’t heard in a while. [laughter] So there were good points.

Mike Threadgould: And I think we’ve spoken before, and we know at LIVESTRONG we talk a lot about the fact that there are a lot of resources now for cancer patients, to deal with their emotional challenges, and we provide those in different ways. But a lot of the time the caregiver is not aware of those challenges and the emotions that come with it. What were some of the challenges that you felt as a caregiver which maybe was different than being a patient?

Scott Joy: Let me think about that. One of the things that was just so different is that in the patient experience, I sort of still felt like I was in control about decisions that needed to be made, because it was all about me. And in the caregiver role, I had to realize that I’m not in control of anything. It really is about what she needs. And although I need to try to get all of the information I can and absorb all of that and help where I can, I also need to realize that what I want isn’t what matters right now. It matters some but it doesn’t matter as much as, “what does Judy need?”

So that was a big change and, obviously, the realization that this is an incurable disease that she had. I had a disease that could be treated and cured. She had one that needed to be managed and sort of coping with that from the beginning, that I am going to lose my wife. I don’t know when. Maybe it’s going to be 10 years down the road. Maybe it’s longer. Maybe it’s shorter. I had no idea it was going to be 3 months. And just understanding that someday— all of us are going to have limited time on the earth, so it’s not a surprise. But just the realization of this is going to change my life. That was a big deal. So strap in. Do what you can. Be there for her in sickness and health. That’s what I promised to do, and I did the best I could.

Mike Threadgould: We all find our way in our way I suppose.

Scott Joy: Right.

Aditi Narayan: Was there anything that was a part of your experience and your journey that you would say was unexpected or surprising?

Scott Joy: I think the unexpected part for me, other than just the diagnosis itself, the I’m no longer the cancer patient in this family here, right? was the difference in the role. I expected that all of the information and the support that I had would be enough, and it wasn’t. It just wasn’t enough to solve the problem and to get to the cure, to get past it and live a long, healthy life together. That was the surprising part. And then just the not being prepared for the what-ifs, the pushing that aside and focusing solely on the treatment and the path to cure, and not thinking about the, “what if this doesn’t work?” It was always, “what’s the next step going to be, and the step after that?” and not the preparing for the worst-case scenario.

Aditi Narayan: And what was the impact—because you mentioned at the start of this conversation that you’re the father of 4, and your kids are now all in their 20’s—but what was the impact in terms of caregiving, not only for your wife who had cancer, but also for 4 children at the time?

Scott Joy: That was the one thing that I wish I had more help with was knowing the right way to help my kids. We’re so focused on the practical things of the getting to the hospital and the meal delivery and the– they’re all still– at that point were all still in school. Three of them were still in high school, and one was off in college. And I would love to have known how to better help them with what they needed. My sons, in particular, I think were maybe more, setting that aside and thinking, “I’m going to class, and I’m going to soccer practice, and I feel for mom, but I’m also living my own life as a teenager.” And I don’t know yet, still, how that’s impacted them and will show itself in the years ahead. I think my daughters tell me more about it, and my sons just sort of shrug it off.

Mike Threadgould: So in a similar kind of realm, and you said that they were going to school every day and trying to live day-to-day, how did being a caregiver affect you day-to-day? Obviously, you had to change your routine, as you mentioned having meals delivered. What was that experience like?

Scott Joy: So part of it was trying to stay as much as possible in the routine and continuing to work, which is necessary to support the family, and not feeling like the world is as shaken as it is. So I did keep going to work. It’s hard not to feel distracted every moment—but you know that things that have to be done in the office—but to be open to leaving when you can to help, and to get to a point and to make sure that Judy had the company she needed.

I was lucky that we had a neighbor up the street, a close family friend, who could step in and help with a lot of that so I could continue to work without feeling like I was abandoning my wife.

I think I’m stepping away from the question now. Can you help me back to it?

Mike Threadgould: I think you’ve touched on that. It was more just the day-to-day. Like you say, going to work, that’s, obviously a big shift in emotional energy that you have to go through, and the day-to-day becomes a very different routine when you’re a caregiver.

Scott Joy: Right, yeah. It really does. Between the mix of trying to stay normal and the needing to take on new responsibilities, things that Judy would have done. We were both working parents and were more partners before, and to have to have that shift where now I’ve got to worry about making sure the house stays clean, and the pool gets vacuumed, and all of those things that just weren’t on my plate before.

And how much of it can I take on? And how much of it is fair to ask the kids to try to help with? And how much can we feel comfortable depending on other people and take the help? People are offering it and want to help, so don’t be embarrassed or worried that you’re becoming a burden. If people are willing and able to do that then, by all means, let them. It’s good for everybody.

Mike Threadgould: Absolutely.

Aditi Narayan: So you mentioned that you had a neighbor who came in and stepped up and was really helpful to you. Who were some other people that really helped with your day-to-day caregiving tasks?

Scott Joy: I think a lot of the day-to-day caregiving fell to me and to Marnie. And the practical side of things, I guess, would be supported, of course, by the hospital staff and not just the doctors but the nurses for certain. They have some emotional support resources. That’s less on the practical and more on the emotional, but you can’t get the practical done without the emotional help, or you fall apart. So that’s a certainly a big part of it is just having somebody to lend an ear to keep you going.

Mike Threadgould: And you mentioned earlier the importance of taking time for yourself. Do you feel like you managed to do that? What we hear from a lot of caregivers who they only do that when they reach the end of their rope. They don’t do it early enough that it actually helps them through the process. They kind of get to this point where oh god, I’ve got to take time for myself. Did you feel like you went through that in a positive way, or was it— how would you explain it?

Scott Joy: I think it was learning. It was a struggle to feel I was getting it right. There’s some guilt when you step back and think I’m not doing enough. I’m not filling the role I need to.

I thought we were going to be doing this for years, so I wasn’t sure how much to pace myself. I did enlist family help. Now that I had got it, Judy has had 3 older sisters and a brother. And 2 of her sisters were– 3 of her sisters, all of her sisters, were able to come and spend some time. So I took advantage of that and didn’t cancel my attendance at a business conference. So I escaped to Orlando for a few days in October which I wouldn’t have done if I had known, that was 6 weeks, I guess, from Judy’s death. I wouldn’t have gone. I absolutely would not have gone. But I got away for that.

I stayed true to my commitment to go to the LIVESTRONG Challenge here in Austin. So I was expecting that that was going to be my break. And then I would go home, and we would get ready for the bone marrow transplant that was planned in January. And we just didn’t get that far. So I think I was pacing myself more than I would have if I had known which should have been a good thing. I should have been taking the time I needed for myself.

Mike Threadgould: Exactly. It’s so hard to know when a diagnosis has no defined limits to. It could be three months. It could be 10 years. How do you pace yourself through that? There’s such uncertainty. You obviously want to make the most of life, but you’ve got to find that balance of taking time for yourself and re-energizing yourself to be there for your partner, or whoever it is, that you’re helping. So a difficult situation for sure.

Aditi Narayan: We’ve talked a little bit about your support systems. We’ve talked about Judy’s family. We’ve talked about your neighbors and, perhaps, other friends who were supportive. Were there any resources, other than family and friends, that you took advantage of or that you accessed that were really helpful for you and maybe for your children as well?

Scott Joy: The local Stratham Community Church, a lot of support from that group. Really, friends and neighbors. The meals that kept coming which they managed to pace well for us so that we weren’t feeling completely overwhelmed by that, too, which can be if everybody’s trying to help so much that you don’t know how to control the help as it comes in. We didn’t have to. We had somebody who was helping with that.

I think really just the knowing how to help my kids and more family resources than practical resources, I guess. If we’d had other people who had been let us take the kids for the day or— because with the only help there was people who were trying to talk to the kids about their experience. And the kids didn’t want to have those conversations.

Aditi Narayan: So somebody to really normalize, to some extent, their day, to sort of not focus on the cancer for a while.

Scott Joy: Right, right. I guess to do that in a way that feels respectful and if they’re open to what they want to talk about, great. And it’s a tough balancing act to know what’s right. I don’t think I got it right.

Aditi Narayan: I think that’s a really interesting feeling and thought. And I’m sure it’s something that many caregivers struggle with is did I get it right or feeling like they didn’t get it right. But really what is right? It’s such an arbitrary concept.

Scott Joy: Yeah. You don’t know. And I think it was different for each of them. I think my daughters were closer in how they reacted and what they needed. My sons were closer in what they needed and how they reacted. But all four of them have different personalities and perspectives and needs. And understanding that on top of—we’ve got to be 100% focused on Judy. But they need help too. And what is that help?

Aditi Narayan: Yeah. And I wonder for– you’ve talked a little bit about how at some points Judy felt overwhelmed with the attention that she was receiving as a result of her diagnosis and care. I wonder how that puts a strain on dynamics between you and your spouse, but also the parents and children as well, is how everybody’s trying to find that balance of wanting to normalize but also wanting to acknowledge that something’s not right.

Scott Joy: Right, yeah. And the other complicating factor was, of course, the difference that all of the pain medications had in just Judy’s behavior some of which was just alertness and ability to understand. Opioids really take a toll when you’re so dependent on the pain medications to not feel terrible all of the time. That was a struggle for her.

Mike Threadgould: Do you feel like your healthcare team prepared you for those struggles in terms of, particularly with the medication and the changes that are going to be physical and mental that that would bring to her, but also how it might impact you?

Scott Joy: I think that was another big surprise for us and certainly for me. I don’t know, honestly, how Judy– how much she knew about what the impact, whether it was just happening. I’m sure she recognized that in the changes and the phone calls she would make and just bewildered, “I’m not sure. I think I just took a pill, but I don’t know. What should I do?”

And I don’t know how to help with that from my desk at work. I can’t tell whether you just took a pill. How do I help you? So some of that was a big challenge. And I don’t think we were well-prepared for it to know these are the things that may happen, and what you should do when they happen, and when you should call us for help. I think we could have used some more guidance.

And there was so much more concern, I think, about the practical parts of it about making sure we got the dosages right, and the pain was under control, and less about the here’s how this may affect your relationship and your cognitive function. And those things just– I don’t recall them coming up. You had to discover them.

Aditi Narayan: So you just mentioned something interesting that the healthcare didn’t quite address how Judy’s care was going to impact your relationship. So how did it impact your relationship?

Scott Joy: Well, I mentioned that in some ways it brought us a lot closer together. That suddenly I felt, we felt, that we had something we needed to solve, to go through together, that she felt, “oh, all of that experience you have from Livestrong and the cancer community suddenly is relevant to me. It’s not something you’re off doing. It’s now part of our life,” and I thought that was positive and healthy. Aside from the effect of the pain meds and how much she really sometimes was in a daze, when she was more alert and willing to talk, it was more open and more candid. And that was all good. I think the hardest part was, you know, we both were focused on, as I said, on the treatment, on the search for the cure, on the let’s get through it.

And we should have talked more about, “when one of us is gone, what does the other want?” I’m now navigating through the how can I continue to have Judy be part of the kids’ life affect what we do as a family. Carrying on the traditions and all of the decisions that had to be made after her death about care for the kids and her own services and all of that. I would have loved to have known because she told me not because I can figure it out. And I can figure a lot of it out, because we spent 26 years in marriage and years before that. We met in high school, and we were high school sweethearts so all of that. I can figure a lot of it out.

But I wish we had talked through more of it which is so hard to do because we don’t want to concede. We’re fighting to the end. And I didn’t talk about the intervention, I guess, where the healthcare team and our minister brought me in and were trying to have some of that conversation about end-of-life care and all of the things that we should have in place. And I think that was frightening for Judy at a point where she wasn’t ready to be scared that way. She needed to focus on I’m trying to get through the day here. But it left us with things that weren’t said and done that should have been. It’s so hard.

Aditi Narayan: Yeah. It really is. Are there those things that you found yourself thinking about but you didn’t feel like it was the right time to bring it up with Judy?

Scott Joy: I had some of those times like out on my bike, right? So part of my keeping it normal was finding time— I wouldn’t do the long rides. Normally, I would do a long weekend training ride, and I would maybe do an hour instead of half a day. But certainly, while I’m out, that’s what my mind is going through is some of the what-if scenarios, and trying to push them out and saying I can’t think about that but I have to. Yeah. So I did have some of that. And then it’s, can I talk to you about it? Should I talk to you about it? And it never felt right. It was always, you’re not ready for that, and I don’t think it’s the time.

Mike Threadgould: We’ve set this series up about caregivers and the phrase caregiver. Do you identify with that phrase? A lot of people use kind of different terms to talk about this role that you take on in supporting somebody that’s going through a disease. Does that identify with you?

Scott Joy: It’s an interesting question because I hadn’t really thought about it until you posed it because caregiver is one that you can grab onto, like survivor, that initially this thing is that’s a word that I can use to describe this. It’s a shorthand and everyone will know what I mean. And then you start to think about it intellectually. And so what else does it mean, and how do I react to it if I think about it instead of just accept it? And it starts to sound a little bit more clinical. And I think how is that different from the healthcare professional role and what the nurses and doctors do? Aren’t they caregivers? And does it feel more like “housekeeper?” So it doesn’t have the same love to it that maybe I would want.

And so I just think of— thought of myself— think of myself as Judy’s husband. And that says so much more to me where it doesn’t necessarily mean what caregiver does, but it’s the word I would choose for myself still. And caregiver was just one that I accepted because it was handy.

Mike Threadgould: That makes sense. And I think how you’re saying if you think of yourself as husband and wife, just because one of you has something in their life that needs support doesn’t change the fact that you’re still husband and wife. And those relationships are built on love and support and doing whatever is necessary. So giving that change a label isn’t necessarily of value to a caring relationship. It’s interesting to think about it that way.

Aditi Narayan:  You mentioned accepting the role, the title, and I was wondering did it feel like you had to feel certain things because someone was putting that role on you, that you are now a caregiver and you should be feeling these things, or you should be doing these things? A lot of “shoulds” involved there.

Scott Joy: That’s a really interesting question and wonder if I had more of those checklists and resources if I would’ve resented them. [laughter] I don’t think I felt that way. I felt that it was a role that I needed and wanted to step into. I didn’t resent it. I can see how one might, especially depending on where you are in your relationship with the person you’re providing care for. I felt it was something that I owed her and wanted to give. But that’s a really interesting question. [laughter]

Aditi Narayan: Scott, we’ve talked a lot about your experience, a little bit about as a survivor, and then extensively about your role as Judy’s husband. What is 1 word you would use to sort of try to capture that experience or describe it?

Scott Joy: I would pick the word “whirlwind.” It’s just the sudden storm of unexpected magnitude, and everything’s circling around you and sometimes feeling like you’re in the eye of the storm. And there are calm moments, but you know it’s all still swirling around you. And it’s a whirlwind, and it just tears everything apart but still moments of calm inside it.

Mike Threadgould: And if you look at where you are now, are you still in a whirlwind? Do you feel like you’ve moved into some other one-word description of your emotional state?

Scott Joy: I’d still pick the 1 word “healing” for where I am now. It’s a long process of coming to terms. It’s one of those things where it hurts to talk about it still, but it hurts a lot more not to talk about it. My kids and I have had some wonderful experiences since. I loved her, remember all of the things that we did together as a family.

I think there’s some mixed opinion on how much we should talk about and remember that, and I love it. And I think how much does it hurt them, and how much does it help them? I think they’re starting to come around now where now my son, Eric, will talk more about it and put on the “We Remember Judy” t-shirt, just spontaneously. So I think it’s a long healing process.

Aditi Narayan: Well, Scott, thank you so much for being here. And thank you so much for sharing so openly and always being willing to share. I think your voice and your experience has healing to it, and I think that can never be emphasized enough in this journey. So thank you so much.

Scott Joy: Well, thank you.

Mike Threadgould: Thank you, Scott.

ASCO: Thank you, Mr. Joy. Learn more about caregiving at www.cancer.net/caregiving, and find support and resources for caregivers at LIVESTRONG.org. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer Caregivers Need Support, Too

This podcast was originally published on Cure Today by Kristie L. Kahl, on August 1, 2019, here.

In this week’s episode of the “CURE Talks Cancer” podcast, we spoke with a caregiver about the support needed for others taking care of a loved one with cancer: They need it, too, she says.

In a letter to her younger self – through Merck’s Your Cancer Game Plan “With Love, Me” campaign – Kristi, a caregiver to who her husband who was diagnosed with stage 3 HPV-related tonsil cancer in 2013, addressed the labels associated with a cancer diagnosis and the support she hopes others receive when caring for a loved one with the disease.

“Nothing about cancer is going to be by the book – there is no book,” she says. “You can talk to other people who have experienced similar cancers, but just as every person is unique, so is their cancer. Inconsistency is going to become the only consistency.”

Tips on Caregiving

This podcast was originally published on Cancer.net on November 14, 2011, here.

 

What to expect as a caregiver to a person with cancer and tips on effectively giving care.

Transcript:

[music]

ASCO: You’re listening to a podcast from Cancer.Net. This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors that care for people with cancer.

Our topic today is how to care for a loved one when he or she has been diagnosed with cancer.

A caregiver is someone who provides physical, emotional, and practical care to a person with cancer. As a caregiver, you play a very important role in this person’s treatment plan. In this podcast, we’ll talk about ways to become an effective caregiver.

It’s best to think of caregiving as teamwork. Remember that health care professionals, other family members, and friends are there to help. Each member brings different skills and strengths to the group, with the common goal being effective care. Whenever possible, make sure that the person with cancer has a central role in discussions and decisions about his or her care.

Caregiving is often both fulfilling and challenging. From the beginning, do your best to stay positive about the challenges of caregiving. Your attitude will help set the stage for the care you provide. In order to do this, recognize your own strengths and limitations as a caregiver. Compassionate caregivers must recognize when they need a break so they don’t become overwhelmed or burned out.

Planning ahead and taking charge, also called being proactive, can help prevent time crunches or conflicts. Develop a list of tasks that must get done. Rank the importance of each task on the list, and then divide the tasks between friends, family, health care professionals, and other volunteers. Also, make a schedule that maps out blocks of time during which certain relatives or friends are available to make phone calls, run errands, or provide transportation. This schedule can help you find assistance when the patient needs it, while also giving everyone on the team time away from caregiving duties.

Every caregiver acts as a problem-solver. To be a good problem-solver, there are three main steps: identify the problem itself, find out what needs to be done to solve it, and then take action to fix it, which can include enlisting others to help. Don’t forget that volunteer and professional services can help with home care, meals, housekeeping, and everyday activities. Some community agencies and cancer centers have volunteers who provide transportation or help resolve insurance issues. Ask a hospital social worker or the doctor’s office about these options.

Now, let’s talk about caring for the emotional well-being of the person with cancer. Many caregivers find that their hardest task is maintaining good communication with the patient. This is also the caregiver’s most important job. While you will likely become a liaison between the patient and the health care team, it is also important to assure your loved one that he or she will retain decision-making power over his or her own cancer care and treatment.

Accept the limitations of the person with cancer. Someone who is seriously ill may not be able to recognize all of the things you do. Your role as a caregiver will shift and change with the person’s health issues.

It’s valuable to help the person with cancer stay connected to others, even if he or she can’t actively be a part of things in the same way. Look for other opportunities to encourage involvement and to maintain a sense of normalcy for the patient. It’s also important to remember to allow yourself some time to reconnect with supportive friends and family outside of your caregiving duties. Keeping yourself well — both emotionally and physically — allows you to be a more effective caregiver.

Next, let’s discuss how you may need to help with medical and physical care. A good first step is to learn as much as possible about the person’s specific type of cancer. Ask the doctor and visit www.cancer.net for information about how this disease is diagnosed and treated.

This information will help you be an advocate for your loved one. If possible, go to all medical appointments. During these

appointments, you may have to be the one telling the doctor about changes in the patient’s condition. Be as specific as you can, and don’t be afraid to ask the doctor to repeat or explain something you do not understand. It’s helpful to bring a list of questions for the doctor, and then write down or record the answers and other important information from the appointment. Also, help the person keep a record of medical appointments, test results, medications and dosages, symptoms and side effects, new questions between appointments, and names and numbers for resources.

It may also be necessary for you to learn to provide proper physical care. Talk with the health care team about what the patient may or may not be able to do during and after treatment. This may involve bathing, dressing, eating, and using the toilet. If so, look for guidance from the health care team, as well as manuals, books, or videos to learn the right way to provide this assistance, or hire professional help.

To help address financial issues, find out if the insurance company can provide a case manager. This representative can advise you about benefits and covered services, such as professional in-home care. They can also troubleshoot insurance problems.  Medical care can be costly. Talk with a social worker at the cancer center or doctor’s office to learn about the financial resources that are available to help.

Also, explore any legal aspects regarding your loved one’s medical care, and talk with a social worker or lawyer to help you. For instance, a document called an advance directive provides legal evidence of a person’s wishes about their own medical care. A living will and a durable power of attorney may also be needed. And, anyone with cancer should appoint a health care proxy to speak for him or her if the person is ever unable to do so. This decision should be made at the start of treatment and needs to be communicated clearly to others on the health care team.

As you know, there are challenges ahead in your role as caregiver to a person with cancer. However, communication and organization can help you avoid or overcome them and enable you to be an effective caregiver.

For more information on this topic, visit www.cancer.net. Thank you for listening to this Cancer.Net podcast.