WEBINAR + RESOURCES – Beyond Treatment: The Emotional Side of Prostate Cancer Care Partnering

00:00:00:04 – 00:00:19:08
Speaker
Hello and welcome to the first Caregiver Connection event. Beyond treatment, the emotional side of prostate cancer care partnering. I’m Karen Schaefer from fans for the cure. We’re excited to partner with the American Cancer Society to present this program in celebration of National Caregiver Day.

00:00:19:10 – 00:00:52:23
Speaker
Today, we honor the caregivers who lovingly support cancer patients, especially those experiencing the unique challenges of care partnering with men on the prostate cancer journey. Fans for the cure is a nonprofit organization dedicated to raising awareness, providing education, and supporting patients with prostate cancer and their families. Our charity was founded by sportscaster Ed Randall in 2003, after he was diagnosed with the disease and successfully treated.

00:00:53:00 – 00:01:21:22
Speaker
His mission was, and still is, promoting the importance of early detection for best outcomes through Ed. Fans for the cure has always enjoyed strong support from Major League Baseball and many other professional sports leagues and teams. Today, our partnership with professional sports organizations and teams provides opportunities to participate in prostate cancer awareness events or PSA screenings at about ten stadiums and arenas.

00:01:21:22 – 00:01:49:10
Speaker
A year. More importantly, it includes joining the teams and their official medical providers in their communities to raise awareness, provide education, and promote PSA testing. We also meet men in their families, in communities where they live, at health fairs, churches and free screening events almost weekly throughout the year.

00:01:49:12 – 00:01:56:02
Speaker
Media evaluator feed spot currently ranked. Our stay in the game podcast as a number three

00:01:56:05 – 00:02:34:00
Speaker
prostate Cancer podcast worldwide. Stay in the game features interviews and conversations with doctors, researchers, and medical professionals sharing cutting edge information. Survivors and others speak candidly about their experiences with prostate cancer. Two years ago, we launched a women’s podcast series where experts in psychology, relationships, intimacy, and caregiving address the specific issues and concerns of women living with partners or spouses on the prostate cancer journey.

00:02:34:02 – 00:03:11:02
Speaker
Covid forced our Men’s Support Group to pivot from in-person to virtual, and it quickly grew to include men from beyond the New York area. That success prompted us to establish a virtual women’s support group for partners and spouses. This year, we will host 29 virtual men’s support group meetings and 24 virtual women’s support group gatherings. The Caregiver Connection Initiative and this program were inspired by the open and honest conversations that take place during the twice monthly Women’s Support Group.

00:03:11:04 – 00:03:44:11
Speaker
We are pleased to have three distinguished caregiving experts with us today Doctor Allison Appelbaum, Doctor Andrew Roth, and Doctor Nicole Stout. They will address different aspects of caregiving and answering your questions that are posted in the Q&A chat. Without further delay, let’s get started. Our first panelist is Doctor Allison Appelbaum, a caregiver, caregiving scientist, writer, researcher, speaker, and advocate.

00:03:44:13 – 00:04:16:18
Speaker
She serves as professor of Geriatrics and Palliative medicine and the director of the Stephen Albom Family Center for caregiving at the Icahn School of Medicine at Mount Sinai Hospital. Previously, Doctor Appelbaum was the founding director of the Caregivers Clinic at Memorial Sloan Kettering Cancer Center. It was the first program of its kind in the United States to provide comprehensive psychosocial care to family members and friends of patients in caregiving role.

00:04:16:20 – 00:04:54:13
Speaker
She is the author of the recently published narrative nonfiction book Stand by Me A Guide to Navigating Modern, Meaningful Caregiving, in which she candidly chronicles her own experiences as a family care partner. Today, she’s going to offer guidance for caregiving with dignity and managing the associated stress and distress with grace. She also is going to share her perspective that she is going through her lived experience, coupled with her extensive research and clinical practice.

00:04:54:15 – 00:05:16:24
Speaker
Doctor Appelbaum, thank you so much, Karen, for having me and for all of you joining, and to wish everyone a happy National Family Caregivers Day. It’s the perfect moment for us to be coming together and honoring you. Who are caregivers? I want to take a zoom out lens and talk a little bit about who caregivers are, and talk a little bit about the experience of what it is to be a caregiver.

00:05:17:01 – 00:05:39:23
Speaker
We know there are today at least 63 million caregivers in the United States at least. So this is a significant number of caregivers and that’s a number that is increasing, especially as we are seeing a push to care at home. That depends on family caregivers. We know that nearly 6 million of these 63 million caregivers are providing care to patients with cancer.

00:05:40:00 – 00:06:03:17
Speaker
And we know that the responsibilities of cancer caregivers are profound. Caregivers assist with activities of daily living and instrumental activities, activities of daily living. All the things that you do to help your loved one, to take care of them and to ensure that they can remain at home and live independently at home. Caregivers are increasingly performing medical and nursing tasks.

00:06:03:18 – 00:06:27:22
Speaker
This is something I’m going to turn back to a few times today. We are seeing a significant increase in these responsibilities. And importantly, these are responsibilities that were once assumed only by trained health care professionals. And too often, caregivers are asked to perform them without training, education or support. And it’s invisible. But it needs to be stated that caregivers provide emotional support.

00:06:27:24 – 00:06:50:23
Speaker
And importantly, this is often at the same moment when they’re no longer receiving the same level of emotional support they once got from patients. So oftentimes there’s a mismatch in the support that is received. Now on average, US caregivers are in the role for four and a half years. But I want to acknowledge that in general, the cancer caregiving trajectory has been described as intense and episodic.

00:06:51:00 – 00:07:14:11
Speaker
On average, it’s 1.9 years long. It doesn’t mean that you might not be in the role for years and years and years, but on average, it’s actually shorter than other types of caregiving journeys, like a dementia caregiving role. And yet, we know it’s particularly intense, intense periods of leading up to a diagnosis, figuring out the right treatment, going for this first and second and fifth opinions, and navigating medical complexities of the many ups and downs.

00:07:14:12 – 00:07:40:13
Speaker
So it’s often a very intense period of time. We also know that on average, caregivers provide care for 23.7 hours a week. But I want to acknowledge that for nearly one fifth of caregivers, this is a full time job oftentimes conducted in addition to full time paid employment. And in 2023, it was estimated that the annual economic value of caregiving was $600 billion.

00:07:40:15 – 00:08:08:13
Speaker
That is, if we put a dollar sign, a financial value on all of your efforts as caregivers. It accounts for $600 billion. Despite the fact we know that at least one quarter of caregivers report high financial strain. And one study out of cancer kickers found that nearly one fifth go into poverty as a result of caregiving. And so there’s a very significant disconnect between the value of all of your efforts and the financial toxicity you experience.

00:08:08:13 – 00:08:35:04
Speaker
And I also want to say, just last year, in 2025, a study coming from the Mailman School of Public Health in collaboration with Ahsoka, said that 600 million number is actually an underestimate. It’s closer to $890 billion. So the value of caregivers efforts is very extreme. Now, not surprisingly, as a result of all of these responsibilities, the majority of caregivers experience what we call caregiver burden.

00:08:35:05 – 00:09:10:08
Speaker
This is a phrase I’m sure you have heard before. It is a catchall phrase that refers to all the ways in which the caregiving role can potentially negatively impact the caregiver. The first component is psychological. Now, I’m a clinical psychologist by training, so this is the one that’s particularly interesting to me. We know that diagnostic rates of anxiety, depression and even post-traumatic stress disorder are higher in caregivers than the patients for whom they provide care, and this is why the support you’re getting here, and a support we hope you’ll get in the future, is so very important.

00:09:10:10 – 00:09:33:02
Speaker
Caregivers are also at risk for their own physical and medical problems. Cardiovascular disease, poor immune functioning, fatigue and sleep difficulties, and even higher rates of mortality. I’m not saying this to scare you, but to acknowledge the fact that caregivers are very much at risk for their own negative physical outcomes is, of course, a financial component to burden I just mentioned, as well as a social component.

00:09:33:03 – 00:10:08:00
Speaker
Now, caregivers are historically incredibly isolated. The pandemic, of course, really exacerbated this. But I think for cancer caregivers in particular, who are caring for potentially immunocompromised loved ones, that isolation could become almost unbearable. I also want to acknowledge, perhaps this is the case for some of you, that even if you have a social support network, if you don’t have any caregivers network, you might also feel isolated, because sometimes it really takes another caregiver to understand what it’s like to be a caregiver, which is why this environment is so important.

00:10:08:02 – 00:10:35:13
Speaker
And finally, when we think about burden, there’s also a spiritual and existential component. The spiritual component is often a crisis of faith. So one has why me? Why him? Why us? Why is this happening? He’s been so healthy his whole life, is eating healthfully. Why did we get this diagnosis? And the existential component is the distress that we all experience when we realize that we are human and we are mortal, and we and those we love will all eventually die.

00:10:35:13 – 00:10:55:15
Speaker
And certainly this distress can come up for caregivers. What I want to emphasize today is distress and burden is normal. So if any of the things that I said or things that you’re experiencing, that’s not necessarily a problem. In fact, as a psychologist, I get much more concern when I need a caregiver who says to me, I’m doing just fine.

00:10:55:15 – 00:11:13:22
Speaker
In a very difficult situation, that’s usually a sign there’s some avoidance going on. But I do want to acknowledge that there are some signs that you should look out for that would say that maybe you’re in need of professional help, or maybe the burden has gotten too overwhelming that we really need a problem solver around expanding your support.

00:11:13:24 – 00:11:33:01
Speaker
The first is if you find you just can’t get out of bed in the morning, it’s just too overwhelming to face the day. That is a great sign that it’s time for support. If you find that the distress and burden you’re experiencing is preventing you from taking care of your care partner with cancer, that, of course, too, is a sign that that you really need support.

00:11:33:01 – 00:11:56:23
Speaker
And of course, if you’re ever having thoughts that life might not be worth living now or in some point in the future, that too is a real sign that it’s important to take, look for help. And certainly we can talk about that during the Q&A. Karen mentioned that in addition to my professional work, as a caregiving scientist, I’ve also been a family caregiver for my father, Stan Appelbaum.

00:11:56:23 – 00:12:18:07
Speaker
He live with Lewy body disease. He did not have cancer then, certainly in caring for him for over a decade. I learned many lessons. And what really stands out to me that I want to share with you right now is the fact that we, as caregivers, are critical members of the health care team. We don’t wear white coats, we don’t carry pagers, but we are health care team members.

00:12:18:09 – 00:12:41:01
Speaker
And our responsibilities are profound. And I just want to quickly highlight three of those. The first I already did acknowledge, and that is the fact that we are asking all of you to be physicians and nurses and physician assistants, and to perform medical and nursing tasks. And I know this can be very overwhelming. I want to acknowledge we have in the United States today what’s called the caregiver advise, record, Enable act, the Care act.

00:12:41:03 – 00:13:06:12
Speaker
It’s currently passed in 45 states and territories. And it says three things, three things about four, three things. And it says the hospital should document the name and contact information of caregivers, of the medical record of patients when patients are admitted. That hospital should let that caregiver know when a patient’s going to be transferred or discharged. And very importantly, the hospital should provide that year giver with training and instruction so they know what to do when they get home.

00:13:06:14 – 00:13:29:19
Speaker
Now, I know that even in states where the Care Act is passed, it is not consistently implemented. So I want to encourage all of you who are caregivers to make sure to ask a nurse or other member of your care partners health team to demonstrate for you all the things you’re going to need to do at home, and then for you to actually demonstrate back those skills so that you can feel confident and confident to do so.

00:13:29:19 – 00:13:52:12
Speaker
I want you to advocate for your educational needs. You should not leave the hospital or not leave the clinic unless you feel comfortable to take on those responsibilities. I also want to acknowledge two other areas. One is case management. So case managers are by definition paid employees of health care systems who coordinate care. But we as caregivers do this free of charge, right.

00:13:52:14 – 00:14:20:14
Speaker
And these responsibilities range from coordinating care, navigating insurance and reimbursements, implementing home health care. And while some of these may not on their own be incredibly, incredibly distress inducing, although some certainly can if you’re on hold forever. When we add these case management responsibilities on top of everything else, it can get overwhelming. I have found that these case management responsibilities are some of the responsibilities that are more easily delegated.

00:14:20:16 – 00:14:50:05
Speaker
So I would encourage you to consider, are there any of these responsibilities that you can delegate to other members of the care network? And finally, it’s rarely talked about as a responsibility, but I certainly have found it is. And that is health care communication. We as caregivers are tasked with engaging in incredibly important conversations with our care partners, the members of the medical team that care now care in the future about this umbrella term, what we call advanced care planning.

00:14:50:07 – 00:15:10:07
Speaker
And these conversations can be very, very difficult and overwhelming sometimes are the most difficult conversations we as humans can have. And I just want to acknowledge this as a responsibility and to say that if you’re struggling to have discussions with your loved one about their health care, this too is an area where health, a mental health professional can be really, really helpful.

00:15:10:09 – 00:15:42:17
Speaker
I want to end by acknowledging, of course, I stated, the burden and distress that caregivers experience. And of course this is why I do the work I do. But I also want to acknowledge the fact that despite that burden and distress, caregiving absolutely provides an opportunity for you to connect to meaning and purpose. It’s not all bad. I’m not talking about the power of positive thinking or turning lemons into lemonade, but I am acknowledging that in situations in which we feel powerless, in which we might not have had a choice such as caregiving.

00:15:42:19 – 00:16:13:16
Speaker
Those are also opportunities for us to connect to meaning, to learn new things about ourselves, to have a strengthened relation with ship, with our care partner or others in our life, to refine our values and to grow. I have yet to meet a caregiver who has not derived some strength as a result of their experience of caregiving and so that is my wish for all of you that today and moving forward, despite whatever challenges you are facing, that you are also able to connect to meaning and purpose that is available to you through caregiving.

00:16:13:18 – 00:16:14:23
Speaker
Thank you so much.

00:16:15:00 – 00:16:48:04
Speaker
Thank you. It’s always lovely to hear from you. And you provide such great information. Our next panelist will focus on managing the caregiving challenges presented by a prostate cancer diagnosis and treatments. Doctor Andrew Ross is board certified in psychiatry and psychosomatic medicine. He is an emeritus member of the Psychiatry Service Department of Psychiatry and Behavioral Sciences at Memorial Sloan Kettering Cancer Center.

00:16:48:06 – 00:17:30:08
Speaker
During his tenure as program director for the Psychosomatic Medicine and Psycho Oncology Clinical Fellowship Training program at MSK, he received awards for clinical and teaching excellence. He concurrently worked as a professor of clinical psychiatry at Weill Cornell Medical College, Department of Psychiatry, and was an attending psychiatrist at New York Presbyterian Hospital. Doctor Roth’s research led to the development of the distress thermometer, one of the main tools used worldwide for distress screening and cancer settings, and the creation of the Memorial Anxiety Scale for Prostate Cancer.

00:17:30:10 – 00:18:03:24
Speaker
He is the author of the book Managing Prostate Cancer A guide for Better Living. Today he will present the emotional judo skills and strategies necessary to help patients and caregivers deal with the challenges that a prostate cancer diagnosis and treatment bring to everyday life. Welcome, Doctor Roth. Thank you Karen. Good afternoon everybody. It’s a pleasure to be part of this esteemed panel for today’s symposium on dealing with the emotional Aspects of prostate Cancer.

00:18:04:01 – 00:18:30:22
Speaker
I’ve worked with many men with prostate cancer and their families for almost 30 years to help them cope with the diagnosis and treatment. It’s difficult and challenging to go through the physical and the emotional changes related to prostate cancer, changes that are often unpredictable. When we’re looking for more certainty in our lives and in the future, many men resist the idea of psychological help.

00:18:30:24 – 00:19:00:15
Speaker
But getting help doesn’t mean that anyone is crazy. However, emotional issues can really get in the way of better cancer treatment and can therefore make coping with the cancer much more complicated. Psychological support may facilitate better accommodation to a changing life as well as better communication with doctors, with family and friends, and therefore perhaps even with, getting better medical outcomes.

00:19:00:17 – 00:19:32:08
Speaker
Men don’t want to worry their families or their doctors, so they often hold stuff inside, but it’s often very obvious and counterproductive. Prostate cancer usually doesn’t mean imminent death, though people may act as if it does so that every moment, every decision, every test result feels like it’s a potential life or death issue. This can lead to ongoing distress, heartache, and sometimes procrastination and uncertainty.

00:19:32:10 – 00:19:53:24
Speaker
That’s a tough way to live. Every moment, upset about the past, or wondering about how things will go in the future. Because no one, not even the best doctors, have a good crystal ball to know the answers to reasonable questions like the following. Will I be cured or not? How long will I live? How could this happen to me?

00:19:53:24 – 00:20:20:16
Speaker
My father lived to 95 and I took great care of myself. Men can worry and obsess about treatment decisions and caregiver. Their caregivers are hearing about these all the time. What will give me the best outcome in terms of longevity? What will have the fewest and least problematic side effects? What side effects will I get? Which side effects could I deal with and which ones can I not deal with so well?

00:20:20:18 – 00:20:44:13
Speaker
How come the experts who all have seemed to have different opinions? What kind of man will I be if I can’t get erections without sex? And possibly if I grow breast tissue, if I get hormonal treatments. Am I going to get to see my kids get married? Will I see grandchildren? How could God do this to me? This isn’t fair and I don’t deserve this.

00:20:44:13 – 00:21:25:21
Speaker
And frankly, we don’t deserve this. These questions, statements, uncertainties that surround life or death may be understandable, but they bring up emotional reactions such as frustration, irritability, anger, anxiety, irritability, sadness, depression, fear. And did I mentioned irritability? I think I see, many caregivers describing, the fact that, their, their husbands, their partners can become so frustrated by what they can’t do, what they used to do.

00:21:25:23 – 00:21:55:12
Speaker
And, the emotion comes out as irritability. Some men feel weak or embarrassed by these changes and emotions, and they won’t talk about them, but they communicate their frustrations through complaining, through nonverbal behaviors like social isolation or avoiding family and friends. Many men feel that the options and decisions that they’re facing are in an all or none type of aspect.

00:21:55:14 – 00:22:26:01
Speaker
And it that kind of obscures the real reality. They might think I’m either going to beat this cancer or I’m dead. If my PSA goes up, that’s the end. It’s all or none. And they may spend countless hours with Doctor Google online searching for the newest treatments, rather than relying on their physicians who’ve seen many patients before with the similar issues that they have and who know them the patient well.

00:22:26:03 – 00:23:06:07
Speaker
If life becomes only about the cancer, it may cloud the potential for experiencing joy. For some men, the fear or concern that every new pain or symptom may be a harbinger, a harbinger of the cancer returning or progressing or potential death. And that’s not uncommon, frankly. And for men with metastatic disease who are on hormonal treatment, it can be difficult to accept some of the side effects that impact sexual sexuality loss of libido, difficulty with erections, fatigue, hot flashes, cheerfulness, and sometimes even cognitive slowing.

00:23:06:09 – 00:23:31:08
Speaker
They may not even realize a growing physical and emotional separation that is, becoming, between themselves and their partners sometimes. This will help the partners get used to. They think that this is going to help their partners get used to not being around. If they happen to die. But usually it has the opposite effect.

00:23:31:10 – 00:24:05:18
Speaker
Partners are just feeling more and more isolated. But men can learn the importance of focusing on intimacy rather than just sexuality as they’ve known it. And they can adjust to changes brought on by the cancer or treatment attempts to grin and bear. It may more often look like grimace and suffering. There’s no magic remedy for better coping, but recognizing and identifying if there is an emotion present before it feels like it’s out of control may help a man short circuit a worsening emotional spiral.

00:24:05:20 – 00:24:36:21
Speaker
Relaxation procedures such as mindfulness breathing may help. Men can also learn methods to avoid the salt traps that prolong the worry rather than resolve it. And frankly, if men can learn it, their partners and caregivers can learn them as well. I used a combination of supportive psychotherapy, cognitive behavioral therapy, problem solving therapy, and acceptance and commitment therapy to help, my patients with all stages of prostate cancer.

00:24:36:23 – 00:25:05:15
Speaker
Understand and practice these techniques. I call this emotional judo. It seemed like it was a great visual for the men I were taking care of who, often were not as in touch with their emotions, but very physically oriented. And if there’s a big, bad opponent out there and it’s the cancer or it’s the treatment or it’s death, if I feel like I’m going to try to beat it up, it’s gonna knock me down.

00:25:05:17 – 00:25:30:23
Speaker
And if I feel like I should run away from it, it’s still going to be there tomorrow, maybe even later today. So what I, did was to come up with a term called draft draft to help men remember the key aspects of this process, which many men know from sports where good players from colleges are selected to join different professional teams.

00:25:31:00 – 00:25:51:21
Speaker
Draft stands for the D detect. Very often we have the emotion guys, maybe all of us. At times we have the emotion, but we’re just not aware of that, that we’re having that emotion. Or we’re not aware of the thoughts that are going on in our mind that are getting us so upset, or even some of the behaviors that we’re doing.

00:25:51:23 – 00:26:15:06
Speaker
Frankly, when I’m not feeling well, I can have a tendency to be irritable and angry, and people usually say, you know, if you’re getting angry, you should count to ten. And that will help calm you down. But what often happens with me, and I think some of the patients that I would take care of is I would blow up, and then I’d start counting to ten to try to calm down.

00:26:15:07 – 00:26:44:08
Speaker
It was kind of backwards. And I am a psychiatrist. But the reality is sometimes the emotion just comes out. And so the more we’re able to help someone recognize the situations and the vulnerabilities and what those emotions feel like, maybe we can get a handle on them. The second, phase is to recognize the or recognize that there are rational and irrational aspects of our emotions and our thoughts and our behaviors.

00:26:44:10 – 00:27:14:10
Speaker
I might feel that, you know, I’m not going to live as old as my 100 year old grandfather, and that’s not right. I thought I was going to get 100 years plus because I take good care of myself. That’s a rational thought, and I might feel sad about that. And if I can recognize that, quite understandable. There are some guys who might say, you know, if I can’t play 36 holes of golf anymore, like I’ve done for the last 30 years, what’s the point of playing at all?

00:27:14:12 – 00:27:33:15
Speaker
And they give up. They give up something that might have been a lot of joy for them and might still be quite pleasurable. Just getting together with three other buddies on the golf course on a beautiful day can bring a lot of joy, but they say if it can’t do it the way I used to forget about the third phase is acknowledge.

00:27:33:15 – 00:27:57:15
Speaker
Acknowledge what’s behind the emotions or the behaviors and see how those emotions can pull you away from what you really want. The fourth phase is flipping the F flip your attention away from the distress that is, frankly, in the past, or it’s in the future. And back to the now. Back to the present. Perhaps with a however statement.

00:27:57:17 – 00:28:24:20
Speaker
Yes, my PSA went up and I’m worried about the future. However, I’m okay right now. My family is okay and I don’t want that worry to steal a better life from us today. What can I appreciate about my life right now? The last phase of, draft is transformation. The t transform through relaxation or distraction or a quick list of activities to do.

00:28:24:22 – 00:28:44:07
Speaker
That might be more pleasurable and meaningful in the moment. So, when someone is feeling calm and not emotionally, well, I would have them draw up a quick list of activities that they can do that when they start to feel the emotion and swelling, they can go into their back pocket and pull out that list of activities.

00:28:44:07 – 00:29:04:07
Speaker
And it might be put on some music, put on a ballgame, go out for a short walk, give one of my kids a call just to talk. Get a puzzle book and do a few of them. Play a computer game, chess or solitaire. Practice guitar practice piano. Go into your garden after the snow melts and start pulling weeds.

00:29:04:07 – 00:29:41:08
Speaker
Call a friend. Make a lunch date. Get a massage. Have patience. Have mild persistence and take breaks when it comes to activities. I like to stay. Say start low. Go slowly but go. You can think about rearranging social engagements to allow for decreased stamina or increased discomfort. For instance. I think it’s okay. And I’ve had patients do this where they can go to half of a concert where they can streamline church services, or just go for a walk up and down the block, even for someone who used to jog regularly.

00:29:41:08 – 00:30:07:10
Speaker
And it feels like, boy. Look, look how the mighty have fallen. But you know, taking that walk for where you’re at today is very important. It’s very important for your physique. It’s very important for your emotional health. And some engagement and enjoyment is usually much better than none. And lastly, I think men with all phases of prostate cancer can find life changing benefits by thinking of themselves as role models.

00:30:07:12 – 00:30:34:20
Speaker
And I know this sounds pie in the sky in the face of cancer. However, I’ve seen it bring families together and I’ve seen it improve men’s self-esteem. Our children, our families, our friends are going to face challenges. Maybe they’re career challenges, maybe relationships, maybe cancer, and maybe even something worse. If we can act like realistic role models now.

00:30:34:22 – 00:31:02:06
Speaker
Not Superman, not Superwoman, but in the face of our adversity, we can teach those who are watching us to deal with challenges and perhaps demoralizing life circumstances in the future that they can’t even imagine today. Psychotherapy can be helpful to figure out how to better manage the intrusive and unwanted changes that come into your lives that cancer may bring.

00:31:02:08 – 00:31:29:09
Speaker
And to find more intimacy and to deal with the looming human, issue of mortality. Get support from a social worker or a psychologist or a chaplain if needed. Psychiatric medicines may be helpful for one or both of you to figure out how to better manage the intrusive, unwanted changes in your lives. Trying to keep a realistic, positive attitude is doctor, Appelbaum mentioned.

00:31:29:12 – 00:31:56:21
Speaker
It’s not easy. In fact, people will say, be positively positive, but it’s not very realistic. Much of the time doesn’t mean you should be negative, but it may be useful to validate your partner’s frustrations and your own, while also trying to see the glass as half full. But don’t expect your attitude to be stable and consistent for you or for your partner, because they’re not going to buy it if it’s always positive.

00:31:57:01 – 00:32:10:17
Speaker
In the midst of difficult moods, take a breath. Try to take your own emotional pulse and then start again if needed. Thanks for your attention.

00:32:10:19 – 00:32:42:01
Speaker
Thank you so much, Doctor Roth. That’s great insight for the caregivers. Two men on the prostate cancer journey. Nicole Stout is our next panelist, and she is the senior director of for Survivorship and Wellness at the American Cancer Society. She leads a national portfolio of strategic initiatives in lifestyle medicine and caregiver support across pediatric, adolescent and adult oncology.

00:32:42:03 – 00:33:25:20
Speaker
She has an international reputation in cancer rehabilitation and survivorship care, with extensive experience in clinical research focusing on supportive care delivery in cancer. Her research has been foundational in developing the prospective surveillance model for morbidity, mobility management in cancer care. She lectures nationally and internationally. And in addition to authoring and coauthoring pieces for peer reviewed and invited publications, she has contributed chapters to several books and is the coauthor of the book 100 Questions and Answers About Lymphedema.

00:33:25:22 – 00:33:59:10
Speaker
Doctor stout has led national and international strategic initiatives advancing survivorship research, guideline development, and polis policy solutions in cancer care. She is an adjunct research faculty member of the West Virginia University Cancer Institute, where she supports clinical implementation research. Doctor stout will discuss the impact caregivers have on survivorship and highlight the supports and initiatives American Cancer Society has in place for caregivers.

00:33:59:12 – 00:34:28:24
Speaker
Welcome, Doctor Stout. Thank you so much. It’s great to be here with you. And, really appreciate it. Doctor Appelbaum and Doctor Roth’s perspectives. I like the draft acronym, Doctor Roth, I appreciate that, and, I’m I wrote that down, and I’m going to take that to heart and use that. Thank you. Although I think some folks on the call, when you got to the F and you said flip, I meant some people might have a different way they think about flipping this, this whole cancer thing.

00:34:29:01 – 00:34:52:04
Speaker
You know, over the 30 years of my career as a clinician, I’m a physical therapist by training. And and then as a researcher, I’ve always been the person who spends a lot of time one on one with the patient and their caregiver. But I’m not the one that they’re supposed to talk to about the emotional problems that they’re experiencing or the challenges, that they might be experiencing in their relationships.

00:34:52:06 – 00:35:18:24
Speaker
But somehow, because I’m not supposed to be that person, I become that person by virtue of the time spent. And I’ve learned, tremendous amounts from my patients about managing, the ways that the way that they manage and the way that they deal with, the emotional aspects of cancer. And the caregivers in the room are always one of it’s always my favorite to have a caregiver in the room, because many times I ask the patient a question and I get this.

00:35:18:24 – 00:35:45:00
Speaker
And then I see the caregiver in the corner going like this. And so it helps me to broaden the conversation always. And I think that’s an important point for caregivers. You are a part of the conversation, you’re part of the story. And, providers need to hear that part of the story. You know, cancer, prostate cancer, specifically the trajectory, the landscape of treatment has changed so dramatically in the last 20 years.

00:35:45:02 – 00:36:16:13
Speaker
And the trajectory of cancer care for prostate is different. It isn’t always start with surgery. It isn’t always start with radiation or start with hormones. It’s different for each patient and the trajectory of that care. And there’s punctuated pivots that happen, I think can be incredibly frustrating for, for the caregiver, the caregivers along for this ride. And, when those changes occur and those pivots happen, the caregiver feels like, okay, we got this.

00:36:16:15 – 00:36:45:19
Speaker
Keep my head down. Keep doing the things that I can do to support. I think it’s important for you to, be given license to to feel your own feelings. And that may be the frustration that you’re feeling, the anger that you might feel when things, when things have to pivot and change and that that’s okay, that, sometimes we put our heads down and have to just feel like we have to barrel through because we don’t want to upset our loved one.

00:36:45:21 – 00:37:06:14
Speaker
We don’t want them to be more stressed because they’re seeing us as a caregiver, experiencing these emotional highs and lows. So we hold those things inside. We hold back on sharing our anger. We hold back on sharing our exhaustion. And I think it’s important to recognize that for you as a caregiver, you need to have the light.

00:37:06:14 – 00:37:35:08
Speaker
You have license to feel those feelings, to be angry at your at at your spouse. When you feel that, and, and identifying ways that you can find support to manage those feelings. That’s the important piece of this. I like to say, you know, many patients have said and their caregivers feel like, you know, I am a glass half full kind of person, but you keep knocking my damn glass over right at every one of these pivots and punctuated changes.

00:37:35:10 – 00:37:54:17
Speaker
And there’s only so much that I can take. And that build up is a very real, a very real, realistic reality. We have to face as providers working with the patient and recognizing that the caregiver who’s sitting next to them, they’re they’re they’re right there and they’re ready to that. Maybe they’re at their wit’s end. Maybe they’re at their edge.

00:37:54:19 – 00:38:15:23
Speaker
And they’re trying so hard to hold it together for the sake of supporting the patient. The other. And so I would encourage caregivers, to know you are part of the story, to speak up and ask the questions that go along with, your part of the story and to know that there are resources for you, dedicated to you.

00:38:16:00 – 00:38:40:05
Speaker
You’re probably given brochures and handouts and educational material about all of the treatments that your loved one will experience, about all of the side effects that you should be looking for, and what will have to happen to manage those side effects. You’re scheduling, the appointments you’re going out and picking up things from the pharmacy, right? You’re doing all of the tasks that you need to do to support your loved one.

00:38:40:07 – 00:39:12:01
Speaker
Absolutely. And you do that willingly. And, undoubtedly it fulfills you. But recognize that there are resources for you. There are resources to help you emotionally cope. There are resources to help you grieve. There are resources to help you find a pathway to light, find a pathway to, experience. Mindfulness experience meditation strategies, experience exercise strategies that can help you in your coping.

00:39:12:03 – 00:39:35:16
Speaker
Because coping is dynamic. Because the trajectory of cancer care is dynamic. You may wake up one day and feel like you can take on the world, and you’re you’re walking alongside your loved one, and then you may wake up the very next day and feel completely opposite, and the anger and the frustration that you’re feeling, perhaps with them and why and why you’re why you’re being put through this.

00:39:35:18 – 00:40:17:22
Speaker
So there are resources for you as the caregiver. And more and more, the medical establishment recognizes we need to develop stronger programs, stronger linkages, stronger materials and resources dedicated to the caregiver because the treating the patient, managing the disease is part of the story, and you are a part of that story, too. The other thing I encourage is, giving you license to to ask the second question, I think many times we go into our doctor’s appointments and we have our list of questions and we get a response, but maybe digging deeper and not feeling, hesitant to ask the second question can my loved one exercise?

00:40:17:22 – 00:40:38:09
Speaker
Oh, sure, exercise is good. We know that individuals who have cancer, it’s safe and it’s good. Next question is what does that look like? What can we do together? What are the safety parameters we should be thinking about with exercise? Are there nutrition considerations that we should be thinking about? And the response from the provider might be, oh, sure.

00:40:38:09 – 00:41:13:13
Speaker
You know, fruits and vegetables and healthy fibers. Make sure you eat those. And the next question might be, well what does that mean? Right. Help me to contextualize that. You, as the caregiver should have license, take license to ask those second questions, and to be able to best support your loved one. We know that many of the lifestyle medicine interventions, good sleep, healthy eating, managing and reducing stress and exercise, the evidence base has escalated significantly, especially in the prostate population.

00:41:13:15 – 00:41:38:00
Speaker
And many times, exercise groups can become support groups for both you and your loved one. Some of the exercise evidence suggests that the dyad, the spouse that you that the husband and the wife, the is the spouse of the individual going through cancer. When you exercise together, it is not only beneficial physically, emotionally for the patient, but also for you as the caregiver.

00:41:38:02 – 00:42:11:02
Speaker
A dyad that exercises together stays together. We tend to see better relationship strengthening and outcomes, in those individuals who exercise together. So giving you license to say we need to do this and we need to do it together. The other aspect that I know as a caregiver sometimes, and especially being a little bit of a type A personality, but even just knowing how your life is structured and set up for you as a caregiver, sometimes you feel like it’s just easier for me to do it myself.

00:42:11:04 – 00:42:26:22
Speaker
It’s hard to hand something off to someone as well-intentioned as they may be willing to step up and to help. Taking someone to an appointment, selling a medication at the pharmacy, it’s just easier for me to do it rather than having to coordinate with someone.

00:42:27:01 – 00:42:41:00
Speaker
I think and my end statement really was, for caregivers to feel empowered. And in order to do that, you need the resources to help you. So at the American Cancer Society, cancer.org is your friend.

00:42:41:02 – 00:43:04:23
Speaker
We have a plethora of resources not only dedicated to help you learn about cancer as a disease treatment side effects, but also for you. We have developed a cadre of resources dedicated to you, the caregiver. How do you cope? How do you find strategies for mindfulness, for rest, for respite when you need it? Our hotline one 802 2723 4 or 5.

00:43:04:23 – 00:43:28:21
Speaker
Easy to remember is a 24 over seven hotline staffed by knowledgeable nurses and medical professionals who can not only answer your questions about the cancer treatments that your loved one is receiving, but can help you to find resources many times in your local community or through your local health system that can help you to to to deal with that and to help you manage some of the stresses that you are experiencing.

00:43:28:23 – 00:43:55:12
Speaker
So I’ll stop there and let’s let us move into Q&A, which you’ve already done. But I did want to suggest that the American Cancer Society resources, we have dedicated prostate cancer resources, side effect resources, respite care, caregiver resources, etc. so we really are a one stop shop and it’s all free. Thank you, Doctor Stout. I’m sure, a lot of people have taken down that information.

00:43:55:14 – 00:44:24:01
Speaker
And we’ll tap into those resources. So we’re going to actually we did not, get very far in the question and answer period while you were, offline. But we are going so we’re going to get it started right now. Everybody please, any questions that you have, please post them in the I’m not sure if you have a Q&A or a chat feature, and they will come through to us and I will post them for you.

00:44:24:03 – 00:44:47:13
Speaker
So I have, one question that has come through is how can caregivers manage their own negative doomsday thinking like anxiety about the future, worry about what? What might happen? This is a question that comes up all the time in the women’s support group. I hope I get it. I’m happy to have you. Yeah, I’m happy to start.

00:44:47:13 – 00:45:10:22
Speaker
And I know that at least Doctor Roth certainly will probably have something to chime in about. Emotions are messengers, right? They have something to tell us when we feel that anxiety, when we have those thoughts. That’s because it’s it’s valid to have those feelings and because we’re scared or we’re sad. And so the first thing I want to acknowledge is that it’s very important to express your emotions.

00:45:10:24 – 00:45:29:22
Speaker
When I it’s a silly example. But if I say to you for the next five seconds, do you not think about a bright pink elephant? It’s very hard to think, to not think about a bright pink elephant, right? I always see bright pink elephants, even so many years later, giving this example. So if we try not to think about the thing that’s scary, results.

00:45:29:22 – 00:45:49:15
Speaker
Waiting in the portal, for example, we’re going to actually focus on that more and more and more. And so my first piece of advice is actually to share the worries and the thoughts and the fears you’re having that can be sharing it with a therapist. It can be sharing it with a friend. It can be journaling, writing it out, speaking it into a voice memo.

00:45:49:15 – 00:46:06:07
Speaker
I actually don’t care how it is. You get it out. That’s less important than the fact that you do get it out. And once you get those worries out, what can be really helpful is to take a step back, take a deep breath, and to look at that, especially if you’ve written them down. This is why writing sometimes can be really helpful.

00:46:06:09 – 00:46:34:11
Speaker
Examine the thoughts and say, well, is there anything here? I have control over? Is there anything that I’m worried about that I can actually problem solve about? And if there is, then you can go into problem solving mode, and certainly if and if there isn’t, then this is where practicing a lot of what Doctor Roth shared emotional, you know, practicing we call emotion focus, coping doing the things to navigate difficult emotions can be really helpful.

00:46:34:13 – 00:47:09:10
Speaker
This could include things we can do to calm our body, like deep diaphragmatic breathing, taking deep breaths in through the nose and out through the mouth, practicing mindfulness, doing some exercise. All of these things can help. Expressing emotion and sharing our fears can be really helpful. And what can be really powerful, I think, for so many caregivers, is realizing that sometimes just opening a dialog about what is causing your anxiety, what is causing the fears and the worries can lead to really productive conversations.

00:47:09:12 – 00:47:26:13
Speaker
Doctor Ralph and I often had joked about when we shared cases back at Sloan-Kettering about networks of silence, where I would say treat a caregiver and he would treat a patient, and the caregiver wouldn’t want to open up a conversation about her fears about X, Y, and Z because she didn’t want to upset her husband and doctor.

00:47:26:13 – 00:47:47:10
Speaker
Roth is treating the husband and the husband wants to talk about X, Y, and Z, but doesn’t want to share them with his wife because he doesn’t want to upset her. So both patient and caregiver are both avoiding talking about an elephant in the room. What we find is, though, it can be difficult to open a conversation to say, you know, I’m really concerned about what if those test results don’t look good?

00:47:47:10 – 00:48:11:11
Speaker
I’m really concerned about how we’re going to move forward. Well, that can be scary to open that, that, that discussion doing so it’s going to lead to an incredible amount of vulnerability and connectedness and likely problem solving. So the more you keep it to yourself, the more difficult it is to sit with. I also just want to acknowledge, I know I said this earlier, that emotions are important.

00:48:11:11 – 00:48:32:07
Speaker
They’re messengers, they’re valid, you know, feeling fear, feeling sadness. These are all appropriate. And so I just want to acknowledge again that sometimes simply just expressing them out loud can be really, really helpful. And again, whether that is appropriately with your care partner or if it’s with a friend or someone else, it can be really helpful just to get it out.

00:48:32:09 – 00:48:56:14
Speaker
I don’t know, Doctor Ross, if you want to add to anything I just shared. No, I think it’s important. You know, when I would, have patients make appointments with me very rarely was a couple. The, the the person, the people who were, made the appointment for it was one person. It was the guy who has the prostate cancer.

00:48:56:16 – 00:49:22:18
Speaker
And I would go into the waiting room for a new visit, and I would say, Mr. Smith and I’d look around and, two people would stand up and I go, and I get introduced to the partner and I start walking back, who is Mr. Smith? And two people were following me. And I say to Mr. Smith, do you want your partner to come in with you?

00:49:22:20 – 00:49:46:08
Speaker
And he might say, well, they’re the reason I’m here. So, yes. And we have no secrets, of course. So, yes, I’d like them to come in. And so I would have some of the session with the couple and some of the session with just the patient, and it was very important to understand some of the, the secrets, the things that people were afraid to share.

00:49:46:08 – 00:50:11:05
Speaker
But when you ask the question and you, get into that situation where, you know, one is saying this and the other is saying this, you can you can open that up and, and try to get each to see the others. Not maybe not agree with the other’s way of thinking, but yes, there’s some common ground there.

00:50:11:07 – 00:50:34:13
Speaker
And I think that those kinds of discussions can be very helpful. I also think that sometimes you know, couples don’t have great communication skills or great communication history. And I think that’s where the idea of journaling, where you can get some of those thoughts and emotions down on paper, where they’re not just rolling around in your head all day long, can be very helpful.

00:50:34:15 – 00:51:03:22
Speaker
You know, it’s unusual for anyone, to find that, very helpful family or friends who say, don’t worry is going to actually lead to don’t worry. Someone says, don’t worry. That’s when my antenna go up, like, oh, what are they trying to hide from me? And so I think being able to discuss some of those issues and unravel them can be very helpful.

00:51:03:24 – 00:51:45:19
Speaker
Thank you, Doctor Roth. Couple of questions have come in. So one says I’m looking for more guidance about relationship care. Many of the caretaking issues have been listed. Please address the intimacy aspect of relationships after prostate treatment. Libido, changes of emotions for both partners. The effect of prostatectomy and or androgen deprivation therapy on sexuality. Changes to the female partner’s response when we’re there, when there has been physical distancing.

00:51:45:21 – 00:52:09:12
Speaker
Yeah, I think but yeah, this is very common. It’s one of those things that, even before, cancer happens to a couple. It may not be sexuality may not be the easiest, conversation topic for them to have. They may engage in sex, they may enjoy sex, but it’s not always the easiest thing to talk about.

00:52:09:14 – 00:52:35:22
Speaker
And so when a man is going through these changes and no one can predict before the treatment which side effects they’re going to get, will they get erection issues? Will they have if they have radiation, will they have erection issues down the road months or years later? It’s like, playing a game of roulette where you’re not sure what’s going to happen once it happens.

00:52:35:24 – 00:53:11:01
Speaker
I think men do go through a period, you know, Doctor Stout mentioned grieving. And for something that they have lost. But it doesn’t mean that. Well, that’s done with no more intimacy. There have been a number of studies of, couples, who didn’t have cancer, but also who do have cancer in, in their, lives where, they’re able to take some of the burden and pressure off of the sexual performance.

00:53:11:01 – 00:53:39:23
Speaker
And that’s where, you know, guys, are often at, you know, I, I, I get, interested, I get an erection, we have sex, I have, men ejaculation. Everything is great. Bam. And that for them, maybe intimacy. But what they’re not seeing is that even without the sexual act, there can be a great amount of intimacy, a great amount of love, and a great amount of of warmth and compassion.

00:53:40:00 – 00:54:10:03
Speaker
So that, being able to help a couple pull the pressure away from the performance and start to just touch each other, touch each other in the non-original erogenous zones, they touch each other a little, little by little. And to enjoy the hugs, and taking the idea that, yeah, if I’m not having an erection and if I’m not having, an ejaculation, you know, what’s the point?

00:54:10:05 – 00:54:50:08
Speaker
Well, there is a very strong point because it’s such an important part of, of couples health to be able to, share that intimacy. It may take a while for a guy to, to, you know, buy into it. But, there are not, you know, I haven’t had that many arguments with me, from patients, and that, you know, it may not be their druthers and they may always be comparing themselves to the past, but they might actually find that there is a lot of warmth and joy in the hugging, in the snuggling, that they saw.

00:54:50:09 – 00:55:16:02
Speaker
What’s the point? They actually find there’s a very important point to that. This is a big topic of conversation within the women’s group. The, the women’s support group. And I’ve had one woman who, on a consistent basis has said all I want him to do is hold my hand. That’s all I want. I just want him to hold my hand.

00:55:16:07 – 00:55:44:03
Speaker
And it is, you know, it’s it’s physical. Touch is tied to so much intimacy that I once gave a couple a homework assignment that when they were going back home on the bus, I wanted them to hold hands on the bus because they had been, like, physically distant, and they actually did it, and they came back, said, boy, that was that was kind of nice to step a.

00:55:44:05 – 00:56:11:10
Speaker
Yeah, exactly, exactly. Here’s an interesting question. Any tips to help support my husband and myself as the caregiver with the significant cognitive issues posed by ad post ad, I don’t want to cause him to feel even worse, but it’s so hard all at the same time.

00:56:11:12 – 00:56:43:05
Speaker
That’s that’s a rehabilitation issue. Cognitive behavioral therapy is have been shown to significantly improve, memory loss, short term memory loss, brain fog, many of those hormone related cognitive changes. You can certainly find cognitive behavioral therapies that are delivered through evidence based apps. But I would suggest starting with a rehabilitation professional, an occupational therapist.

00:56:43:07 – 00:57:13:07
Speaker
There are cognitive and behavioral health certified specialists in rehabilitation medicine. You can certainly connect with them. Referrals, many of them you can with direct access without having to have a referral. But this they’re important strategies in a very, evidence based and succinct approach, to helping with, regaining memory and regaining cognition, through, behavioral therapy techniques.

00:57:13:09 – 00:57:39:15
Speaker
Sometimes the, the cognitive slowing may be a function of the hormones directly. Maybe the fatigue that, the hormones can cause. And so I think it’s it’s not a bad idea to have that rehabilitation for someone to understand, and maybe even to chart out when they’re having their some of those cognitive issues and what’s going on at those times.

00:57:39:21 – 00:58:16:07
Speaker
We did a study, a number of years ago using stimulant, psycho stimulant medications for men with prostate cancer who were having fatigue and some with cognitive slowing. And we found that the medications were safe. You know, if we’re using them safely, in the right population. And so sometimes that will help, if the rehabilitation that I’m stat was talking about isn’t working sufficiently, if a patient can tolerate a medication, it might be, a good alternative for them.

00:58:16:09 – 00:58:41:19
Speaker
It’s interesting that you bring in the fatigue aspect. And when you look at the immense body of evidence around fatigue management across all cancers, exercise really rises to the top as far as helping to mitigate fatigue, but very closely linked to cognitive behavioral therapy. And in fact, when you use the two of those together in a structured rehabilitation plan of care, that’s when we really see optimal outcomes.

00:58:41:21 – 00:59:12:07
Speaker
So I do think and I see several questions in here about, you know, sleeping a lot, being very fatigued. Sometimes we know that the fatigue causes the brain fog. The fatigue perpetuates more fatigue, actually. And so rest is not best frequently. The activity, you know, does the exercise help to feel more mentally stimulated? You know, are there, neurotransmitter uptake changes that occur that make them feel better, that makes them think more clearly from the exercise?

00:59:12:09 – 00:59:31:04
Speaker
Is it the cognitive behavioral therapy that makes them feel more energized? So therefore they exercise more? You know, at the end of the day, a large body of randomized controlled evidence suggests exercise combined with CBT, the cognitive and behavioral therapy is not only for the brain fog, but also for that fatigue management. They really do go hand in hand.

00:59:31:04 – 00:59:58:14
Speaker
Fatigue is not just about being tired and needing to rest more. There are central and then there are peripheral mechanisms that drive fatigue, according to, you know, our current evidence. And so the combination of the movement and exercise with the cognitive strategies really seems to be an optimal approach. So those are great points. And I think, you know, some of my patients used to wonder, you know, I thought you were the psychiatrist.

00:59:58:14 – 01:00:20:20
Speaker
Why am I walking out of here with some exercise? I would make sure that the physical therapist came up with the routine, but they always heard from me that you have to be walking. You have to get up. You have to be hydrating. You have to be doing because sitting around, is not going to and resting is not going to replenish this kind of energy loss.

01:00:20:22 – 01:00:41:02
Speaker
Thank you. I would also sorry, just to chime in, I saw the comments about, the question specifically for somebody who’s who’s struggling to get their, their partner to get up and to do things, and she’s working. And I just want to acknowledge that. Yes, all of what Doctor Ross and Doctor Staff said is important and absolutely, we want behavioral activation and cognitive therapy and exercise.

01:00:41:04 – 01:00:59:23
Speaker
More energy begets more energy. And also it can be really overwhelming and distressing and frustrating to have to be the nag, to be the person to continually to tell someone to go do the thing you know is going to be helpful. One thing caregivers with whom I’ve worked to unhelpful is really hooking in members of the medical team to be the messenger.

01:01:00:00 – 01:01:18:15
Speaker
So if you’re a partner, your husband’s not listening to you. One thing that I would suggest is reaching out to his team and letting them know about his sluggishness. Let it let them know that he’s sleeping as much, and ask them to actually relay the message of how important it is that he gets up and about. And oftentimes that can move the needle a little bit more.

01:01:18:19 – 01:01:40:10
Speaker
I was actually going to ask the same question right. So another question that came in is are there any techniques for a new caregiver to help stay positive and establish a welcoming bedside manner? I’m going to go back to, you know, screen. I already gave you my elephant in the room example.

01:01:40:10 – 01:02:03:02
Speaker
So it is really hard to just stay positive and be positive and rah rah rah rah and keep your pom poms going when the reality is you’re really freaking out inside, right? And so and yet I recognize fully, of course, from my own personal experience of how important it was for my dad, for me to have that positivity when I was with him, especially at the bedside in the hospital.

01:02:03:04 – 01:02:25:17
Speaker
The only way that you can do that healthfully is if you are truly getting out all of those fears and concerns and worries, which may be valid in advance of slapping on that happy face, that if you’re you’re putting on that happy face at the expense of neglecting and ignoring your true emotional experience, then your distress is just going to increase and it’s going to be really, really hard to do.

01:02:25:17 – 01:02:45:15
Speaker
So, and so I think that you can do that. I certainly would encourage you to do that forever and ever, all the time, especially if there are things that are happening that are causing realistic worries and concerns. But again, I think it’s really just important that you find the safe space where you can be authentically you and express what’s really coming up.

01:02:45:17 – 01:03:16:17
Speaker
Doctor Roth, Doctor Stout, do you have anything to add to that? I think just going back to what I said, you know, just understanding. I think sometimes to stay positive, you’ve got to let the negative wash in and then wash out. Right. In order to to find that positive space. Because trying to force yourself into staying positive all the time becomes a burden, becomes, an energy sack of your own, and truly is not reflective of how you’re feeling, letting those true, authentic feelings happen.

01:03:16:19 – 01:03:46:01
Speaker
And finding those strategies and ways to that in support of ways to help you, let that let that anguish, let that frustration wash in, wash over and wash back out. I think that probably helps substantiate and maintain that that positive over the long term, which is what you need. You know, I think, it’s me being a caregiver, like so many other things that we do, is on a learning curve.

01:03:46:03 – 01:04:11:00
Speaker
But the learning curve, as I understand it, is not always very linear. And so, you know, we think that it’s not okay to make mistakes. We’re so worried that we’re going to do some harm to the person we love. And I think, you know, being able to, ask questions of the medical team is very useful if I’m really not sure.

01:04:11:00 – 01:04:32:13
Speaker
Doctor Appelbaum mentioned before, you know, the training that caregivers could certainly use before they go home and have to change appliances and do all kinds of things that nurses may have done in the past, I think, it’s okay to call. It’s important to call and say, I’m really not sure about this or I need some help with this.

01:04:32:15 – 01:05:00:17
Speaker
And then, you know, there is that learning curve. And, and caregivers do get much better at doing what they’re doing because none of us are born as caregivers. We I didn’t go to school for that. None of us did. And we don’t have a diploma. And yet, I think there are a lot of caregivers who could teach a lot of health care professionals about caregiving because they’ve learned some of the intricacies of what works and what doesn’t work.

01:05:00:19 – 01:05:28:23
Speaker
And so I think it’s a matter of, not giving up, not throwing in the towel, keep trying and asking for help if needed. Excellent advice. And I have a follow up question to that. I don’t agree with my husband’s choice of medical provider and have difficulty communicating with the doctor because he shuts me down during appointments when I try to ask questions, but my husband doesn’t want to ask the questions either.

01:05:29:00 – 01:05:33:15
Speaker
What can I do?

01:05:33:17 – 01:06:04:01
Speaker
Well, there’s a conspiracy of let’s not talk about this. And that may be where, a session or a few sessions with a therapist. A mental health therapist would be useful. You know, a lot of the men don’t want to look like they’re complaining. They want to feel like they’re in the best shape as possible, and they don’t want to admit to their doctor that their energy isn’t so good or something.

01:06:04:01 – 01:06:27:18
Speaker
And so that’s where we have the head shaking this way and the head shaking the other way. But I think it may be very, useful for a therapist to be able to hear these and maybe to discuss how, some more common ground can lead to some improvements or things that are frustrating for both in the couple.

01:06:27:20 – 01:06:58:09
Speaker
I don’t know that there is a magic remedy for that, but I think, to not just throwing up one’s hands, but trying to work at those issues, can give some good results. Thank you, thank you. There’s a follow up question from the, you know, positive attitude, and glossing things over. And the question was, my husband is the one with the positive attitude.

01:06:58:11 – 01:07:13:14
Speaker
I’m the one who’s often upset and he supports me. Then I feel guilty, then I downward spiral because he’s supporting me. But he has the prostate cancer. How can I change this pattern?

01:07:13:16 – 01:07:36:00
Speaker
Again, my advice is going to be the same. This is definitely a situation where maybe seeking professional support could be helpful. So you have a really sturdy forum to get your worries out. And then, you know, it sounds like there’s some added guilt coming up for you in terms of him sort of having to support you in your emotional experience.

01:07:36:00 – 01:07:58:20
Speaker
So I would actually just suggest making sure if you don’t have professional support, seeking professional support, finding a space a week weekly to to be able to get those concerns out. Many caregivers with whom I work also find it can be helpful, especially if they want to protect their care partners in some way from what they’re feeling and their negative emotions to deal what we call worry time.

01:07:58:22 – 01:08:24:10
Speaker
This is scheduling a period of your day, maybe ten minutes, 15 minutes, 20, where you purposely sit in your worries and think about your worries and get them out to what I what I’ve been saying again and again today. I’m a broken record. But to purposely do this at least once a day, to give it a little bit of an outlet, and sometimes caregivers will find that when they schedules, let’s say, okay, I’m going to spend from 9 to 930 every morning and worry time.

01:08:24:12 – 01:08:48:17
Speaker
They may find that they’re better able to be less distressed in the presence of their care partners during the day. So I would encourage you to, number one, seek professional support. This is a great sign that it can be helpful. And number two, see if engaging in specifically scheduled worry time could be helpful as well. You know, I I’d also point out that, not all couples are the same.

01:08:48:19 – 01:09:27:23
Speaker
And and that’s for, that’s for good. But there are some times where even though the guy has the cancer, it can be very useful for him to feel like he can still take care of his partner, and provide that emotional support. And, you know, Doctor Appelbaum mentioned the guilt, and maybe that’s something that they can work on in terms of, you know, yeah, we’re coming at this from different points of view, but we’re figuring out how to take care of each other, and maybe that’s the most important thing that they can get out of some, some therapy is to recognize it doesn’t have to.

01:09:27:24 – 01:09:35:10
Speaker
She doesn’t have to always be on one foot or the other, but there may be a balance that they can find.

01:09:35:12 – 01:10:03:15
Speaker
Thank you. Thank you. Doctor Stout, there was a question that came in. Family caregiving is essential, but you are spot on about the emotional stakes in play that can sometimes lead to anger and other difficulties in coping. Do you have any recommendations for dealing with the patient’s volatility? Well, I would say, that is probably more of a Doctor Appelbaum.

01:10:03:15 – 01:10:35:02
Speaker
Doctor Frost question. I personally and having, been, on the receiving end of a little bit of a hostile the type father and giving a caregiver for him, sometimes they want to feel heard. My experience is sometimes he needed to vent. Sometimes I just I used to describe it as just, you know, I just let him let him vent, let him feel heard, and, and empathize with that.

01:10:35:05 – 01:11:08:08
Speaker
I don’t have to fix the problem. I don’t have to solve the problem. I don’t have an answer. But I want him to feel heard, for sharing the things that he’s sharing, because that’s his way of emoting. I do think sometimes. And I will hand off to the experts. But in those types of situations, sometimes it is helpful for them for, for him to have, a professional come alongside, and talk through some of those, some of those, the issues that they’re facing, especially if it is a hostile type of a situation.

01:11:08:10 – 01:11:53:03
Speaker
That was great advice, doctor. So thank you for that, therapist for that, you know, one technique I would recommend is a communication technique called the x, y or z technique. Imagine a mad libs. I feel x when you do or say y because z. And to use that to frame opening a dialog with a care partner who might be, expressing an intense amount of anger in a way that’s very hostile and potentially inappropriate and, it could even move into the realm of abusive to say, I feel really scared when you or it upsets me when you yell because, you know, and go through that x, y, and Z.

01:11:53:03 – 01:12:25:14
Speaker
It makes me feel, and being really clear about why. And I think particularly when a caregiver is doing so much to take care of a care partner, often putting their own needs on hold, facing all of the losses in the relationship that have been articulated today, it is extra painful to be the recipient of the anger. I also want to acknowledge that in most cases, beneath anger, there is a very deep well of sadness.

01:12:25:16 – 01:12:50:11
Speaker
Anger is rarely unidimensional, and so oftentimes in situations where there is a lot of anger a little, there is a lot of hostility, it can be really helpful to see. I know you’re sad. I know this is hard. And to label that and to bring that into the room and to give your loved one permission to grieve again.

01:12:50:11 – 01:13:16:21
Speaker
Grieving can happen far too long in advance of a death that may never occur. Grieving the losses in the relationship, the changes in one’s physical functioning, the day to day losses that happen. And so I think, number one, it’s really important to express how you feel and to share why it’s not okay to be the recipient and number two, to acknowledge that often that anger is, is, is on top of something much deeper and much more powerful to be expressed.

01:13:16:23 – 01:13:49:22
Speaker
One thing I’d like to add is that, and this isn’t just with prostate cancer, maybe with, with all cancers and maybe with many illnesses is not everything that looks psychiatric. Someone getting irritable. Anger is psychological. Very often there can be aspects of someone’s treatment. With chemotherapy, a lot of guys are getting steroid medications with they if they have pain, they may be getting pain medications.

01:13:49:22 – 01:14:15:12
Speaker
The pain itself or the pain medications can make someone more irritable or more angry. Quicker to to blow of fuze. And so, rather than just assume this is, someone, someone’s psychological coping with their illness, it is something to be able to bring up with the medical team to find out is something else going on.

01:14:15:14 – 01:14:47:16
Speaker
And medically, these men could be on many different medications, etc., and all of those can tip, some of the emotions that are coming out. The other aspect of cancer broadly, Allison, that I think underlies a lot of this also is fear. There is and I did see a couple of questions that came through about the fear that just lingers over you, that constant fear of recurrence, the constant fear that this comes back, that it comes back worse.

01:14:47:18 – 01:15:09:21
Speaker
And you know, that that underlying that it’s very different than other chronic conditions and chronic disease, the fear that cancer that is the cruel mistress who lording over you, for really for the rest of your life and that unknown of when and if it comes back, is a very real emotion that I think can elicit that anger as well.

01:15:09:21 – 01:15:21:17
Speaker
Right? The sadness that accompanies the loss that someone has experienced, but also the fear that is just innate in the trajectory of what is cancer.

01:15:21:19 – 01:16:02:15
Speaker
Absolutely, absolutely. Thank you. One question that came through, we’ve talked a lot about, mental health professionals and finding mental health professionals. Are there any resources out there for finding mental health professionals, especially those who are knowledgeable about the specific challenges of, you know, caregiving to cancer patients and especially prostate cancer patients? We do have we do have our national cancer information system, NCIS, who, who those are the folks that answer the phone.

01:16:02:20 – 01:16:32:21
Speaker
When you call the 800 number for the American Cancer Society. (235) 452-4523 4 or 5. I’ll put it in the chat for everyone. But they can connect you to resources and local resources, right? We work with many organizations like Find help.com, but we also work with a curated list of professional organizations that provide information on licensed social workers in a specific geographic region.

01:16:32:23 – 01:17:13:17
Speaker
So we have we have resources that we can help to guide you to and connect you to in your local communities. Excellent. Thank you so much. Along that line, it was mentioned that we should, as caregivers, monitor, thoughts, our own thoughts. Depression, suicidal ideation. How do we detect those thought patterns in patients, in our spouses and in our, you know, loved one that we’re caregiving for?

01:17:13:19 – 01:17:39:18
Speaker
It’s a great question. And part of the answer may be a little bit unsatisfying, which is that every relationship and every individual is different. And so, number one, you likely do you have a sense of what different emotions look like in your partner. There’s no one uniform way that anxiety or depression present themselves. I think that Doctor Roth can speak a little bit about patterns that he’s he’s seen in his practice.

01:17:39:18 – 01:17:57:09
Speaker
So I’ll have him do that in a moment. But just to say, number one, that you probably have a sense from prior experience about what those those look like. You know, when I read the comment in the chat about the husband who was sleeping all the time, the other thing that came up for me was wondering about whether he might be depressed.

01:17:57:11 – 01:18:24:04
Speaker
And so for many individuals who are experiencing low mood and depression, oftentimes that that can manifest as, sleeping, a lot of really lethargy, difficulty getting out of bed, difficulty getting motivated. And so again, this is where really trying to understand your own partner’s history of these things. Now, the other piece is that mental health is not often talked about openly.

01:18:24:06 – 01:18:48:09
Speaker
And if you and your partner have not necessarily had a relationship for years and years and years where you have a dialog event about mental health, it might feel uncomfortable to open that now. And yet at the same time, this is the perfect time to do so. And one thing that caregivers with whom I’ve worked has have found helpful is to start that conversation by saying, you know, I’ve been having my own worries and my own fears.

01:18:48:11 – 01:19:14:15
Speaker
I can only imagine what this has been like for you. Would you be open to talking about it and try it in your own way, to open a dialog about what it has been emotionally, to go through this prostate cancer journey? I don’t know, Doctor Roth, if you could add just a little bit, in terms of what you’ve seen in your practice, it, it’s it’s not very standard.

01:19:14:18 – 01:19:44:16
Speaker
There are some guys who, will be in touch with their anxiety and their sadness and and their frustrations and some who won’t be, when a couple is coming in together. I do hear that. He said she said, and that is helpful for me to put some things together, where when someone’s depression may be related to, other aspects of their illness, like fatigue or pain.

01:19:44:18 – 01:20:13:01
Speaker
I might, ask the patient, you know, if I had a magic pill to give you that would improve your pain, take away your pain, or improve your energy, what would you like to be doing? The person who’s really, really depressed lifts their hands. I don’t really know the person who is less depressed. And we’re really frustrated about the symptoms.

01:20:13:01 – 01:20:36:12
Speaker
Might say, boy, if I can get some more energy, I’d love to go see my grandkids. I’d love to go out and take a walk. They have a sense of future orientation of what they’d like to be doing. That’s not a hard and fast rule, but it has been helpful, asking people what they’re looking forward to and looking forward to doesn’t have to be 50 years in the future.

01:20:36:12 – 01:20:58:05
Speaker
Could be. You know, you’re such a great cook. My wife, I’m looking forward to what we’re going to have tomorrow night. I’m looking into the future, those kinds of. And I’m looking forward to sharing a meal together, those kinds of things that they may not sound like the most important boy. They could be the most intimate, kinds of connections, with people.

01:20:58:05 – 01:21:26:15
Speaker
So, and with anxiety, I think, you know, we may know our partners as well, and their histories of anxiety or not having anxiety. Sometimes, people can be worriers. Sometimes people can feel physical symptoms of anxiety. You can see if this is something that is a change for your, partner in how they’re expressing, that anxiety or angst.

01:21:26:17 – 01:21:53:07
Speaker
I’ve often, asked patients to fill out charts, mood charts and, you can put down, you know, three times a day, morning, afternoon and evening. Not just the mood, but how is my energy from 0 to 5, 0 to 10? How is my mood? How is my anxiety? Was I irritable? A few different things where they may be able to see that some things are going together.

01:21:53:09 – 01:22:29:04
Speaker
At different parts of the day, when I am, more fatigue, I’m more likely to be irritable. I don’t know that that you’re going to find, magic there, but often there are some nice nuggets of what’s going on. Even if someone keeps a chart for a few days or a week at a time. And frankly, I think the caregivers can keep their own charts because they’re going to see some of their emotional connections with some of their physical, and other variables going on in their lives.

01:22:29:06 – 01:22:59:21
Speaker
Thank you. We’re coming up on the end of our time, but there are two really important questions that have come through. And if everybody wouldn’t mind staying a minute or two extra, I’d like to pose these two questions. A couple of people have posed the question, that their husband is on androgen, androgen deprivation therapy, and it has rendered them impotent.

01:22:59:23 – 01:23:34:11
Speaker
And the husband is very comfortable with this, and they’ll hold hands, and you know, be mildly intimate. However, their spouse is having trouble handling this. And they were looking for some ideas or some guidance how to not sound like they’re nagging. Had it not sound like they’re complaining? But to to get the point across that they they’re upset about this.

01:23:34:13 – 01:23:38:01
Speaker
Any ideas?

01:23:38:03 – 01:23:43:24
Speaker
Well, it’s just just, go ahead.

01:23:44:01 – 01:24:05:23
Speaker
I just want to say, number one, it’s I just want to validate how painful that is. I just want to acknowledge how difficult this situation is and and just to hold space for that because it is so very painful. And it is such a profound loss in the relationship with what it means to be a woman and a sexual woman and have intimacy.

01:24:05:24 – 01:24:33:12
Speaker
So I just want to acknowledge that, one can express sadness without nagging. And I think simply getting in touch with with that grief that you’re feeling, I’m hearing in the message that there’s grief there and just sharing that. And it doesn’t have to be shared again and again and again. But I think there is value in expressing that sadness delicately at least once.

01:24:33:14 – 01:25:04:15
Speaker
Yeah. It’s not it’s not that uncommon with, antigen deprivation therapy when someone loses their libido, they’re not even thinking about going and holding hands necessarily, or giving a hug. That is where I think therapy can be helpful to discuss that. And it may feel like, you know, a bit robotic. Oh, I should be giving my my partner a hug, you know, every afternoon.

01:25:04:17 – 01:25:30:20
Speaker
But frankly, if the thought isn’t occurring, we it’s okay to plant the thought because, I don’t think it means that, you know, he is not loving his partner anymore. I think it means these medicines are having some effect on his ability to think about them. So discussing it, discussing how they can, move around the issues can be very helpful.

01:25:30:20 – 01:26:08:13
Speaker
And, does not need to be embarrassing. To to anyone, to be very helpful. Thank you. Final thought from all three of you. How can people avoid making caregiving their entire identity? I love this question. It’s actually something that I address with with most caregivers in my practice, and I often will ask caregivers to imagine before they were a caregiver and to answer the question, who am I?

01:26:08:15 – 01:26:29:07
Speaker
And this can be any aspect of your life. It can be what you do for work, what you do for fun, who you are, what you do physically and exercise, etc.. Who are you? Who am I? What makes us Alison, Nicole and Andy? Who are we? And then answer the question from the present time. And of course, I would imagine because of caregiving, some things have shifted.

01:26:29:09 – 01:26:50:06
Speaker
And then I would encourage you to think about how can you reconnect even in small ways, to parts of yourself from which you have inevitably become disconnected? So maybe you cannot spend a lot of time in big crowds right now. You can’t socialize the way you once did. Can you go for a walk outside with a close friend?

01:26:50:08 – 01:27:14:21
Speaker
Maybe you can’t take that week long vacation that you so very much deserve. And I hope every caregiver joining us today gets a week long vacation. You all deserve it. Can you take 2440 eight hours away? Can you take one full day just to yourself? Maybe you are somebody who used to go to the gym seven days a week, and that’s just not feasible right now because of all of the medical appointments that are happening.

01:27:14:23 – 01:27:36:20
Speaker
Well, can you still go to the gym? Can you still get that exercise in some way? I had a patient. I always think about who, she and her partner live far from New York City. They came to New York for medical care at Sloan-Kettering. She was a gardener, and she found joy in her authentic sense of self by gardening and having her hands in the earth and working on the ground.

01:27:36:20 – 01:27:54:23
Speaker
And when they were living in an apartment in New York City for her partner’s care, there was no garden for her to garden. But one thing we talked about was, well, what if you were to create window boxes and small plants for your apartment? That’s not the same. It allows you to get your hands to the earth and to reconnect you to that part of yourself.

01:27:54:23 – 01:28:13:02
Speaker
Who enjoys that? It’s just one example of many, but I would encourage you to consider the question, who am I? And ask, how can I start to get back to that person? I don’t want to put all of that on hold indefinitely, and I imagine there’s something you could do right now to reconnect to that part of yourself.

01:28:13:04 – 01:28:37:14
Speaker
Yeah, I think it requires purposeful intention. And that was going to be my response that Allison articulated that much more beautifully and specifically than I could. But it is that feeling of, I used to do these things. I can’t do them anymore. I’m not doing them anymore. Maybe you don’t do them in their totality, but you can find some way to pick up a book and read for 20 minutes in a quiet room by yourself.

01:28:37:14 – 01:29:04:23
Speaker
That’s your time, even if it’s a reflection, journaling and reflecting on these are the things that I’m going to try to do in the next week and the next month, and set that intention and make it purposeful that you work towards that, I think, is an opportunity that you could take to to make those things happen. Yeah, I think, so any we’ve known that for any kind of a behavioral change, it takes like five phases.

01:29:05:00 – 01:29:27:24
Speaker
I’m not even thinking about it. I start thinking about it. I make a plan. I take some action, and then I start tweaking when it doesn’t work. And I think it’s very important to get out of the contemplation, the thinking about it and make a plan, and make the plan and then fix it if you need to improve on it.

01:29:28:01 – 01:29:50:08
Speaker
Sometimes there are people in your orbit who care if you’re concerned about your husband and being alone, for some amount of time, a friend might be able to come over. Or a family member may be able to come over so you can get that hour in the gym, or you can get some time at a museum or doing something on your own.

01:29:50:10 – 01:30:16:10
Speaker
I think it’s important to be thinking and figuring out how to make that happen. And I imagine that’s where, organizations like the ACS can, can help people think through those, those kinds of situations where they’re feeling maybe isolated or alone. The ACS has dealt with so many people who’ve had so many caregivers who have had these issues.

01:30:16:12 – 01:30:46:19
Speaker
They know so many, options for, for, for, caregivers on how to find, that space for themselves. Thank you so much. Doctors Appelbaum, Ross, and stout, on behalf of fans for the cure and the American Cancer Society. We are deeply grateful for the time you took to share your expertise and insight. This has been wonderful.

01:30:46:21 – 01:31:14:03
Speaker
Thank you to everyone who attended and participated in this first Caregiver Connection program. We will send out an email next week with a link to the full recording of this program, and links to any resources that were mentioned today. Look for information on in the coming months, about other caregiver connection events that we’re planning for the future.

01:31:14:05 – 01:31:22:18
Speaker
Like National Family Caregivers Month in November and next year’s National Caregiver Day. Have a good weekend, everybody. Thank you again.