Transcript of Stress and Anxiety That Accompany Bladder Cancer

April 12, 2023

Doctor Shweta Kapoor:

And I’m very glad to be here, and what I will be discussing is psychosocial stress related to bladder cancer in particular. Most of my work at Mayo Clinic has been with psychosocial oncology, so I’m embedded within the Mayo Cancer Center here, the Comprehensive Cancer Center. So I do work with a lot of individuals who have been recently diagnosed with bladder cancer. I see all types of cancers, but bladder cancer is just a big proportion of my patients.

So I will be talking … I just want to give just a very brief presentation because I want to give more time for all of you to ask me questions so that if I can help in any way to clarify things or just to get some answers, I’ll be more than happy to do that. So just bear with me. I’ll just go through … This is a pretty brief slide deck that I have.

Just to start off, I do not have any relevant disclosures, no financial disclosures, pertinent disclosures in relation to pharma or anything like that, and I will not be discussing any specific brand name drugs or anything.

So I just wanted to bring all of your attention to what happens when you have … It’s a pretty significant diagnosis and, like, Stephanie, you mentioned, it can be life changing. What is the meaning that we are ascribing to it? And a lot of times how we look at it, how we process it emotionally is very dependent on the biopsychosocial factor. So, basically, they talk about … So there is a biological component of how you respond to stress and there is a psychological factor how you respond to stress and then there is a social factor, which is really important. From my understanding, we have patients and caregivers here, so the social component and is really important to have social support.

What are your beliefs and emotions related to the diagnosis? Prior to the diagnosis, how did you handle more medical things and how difficult has this been for you? It also relates to your style of coping, which is … We’ve had years and years of developing that and it really depends on how we were raised, what are our belief systems? So that all goes into the emotional distress.

And in my practice I see a lot of anxiety and depression related to the diagnosis. And, especially, I know, Stephanie, you had mentioned in the email in the discussion we had that there are some crises points that happen. I think one of them does happen to be the diagnosis, and if there’s a recurrence, which does happen sometimes with bladder cancer.

So a lot of times we don’t talk about how life changing this is, like the grief. A lot of times my patients describe it as a before and after. So there is a lot of sense of loss, how lifestyle has changed if you’re having more … A lot of my patients talk about having multiple appointments in a week, in a month. It’s like your life starts revolving around that, so there’s a lot of grief associated with that, with that feeling of loss.

And, again, as we were talking, your coping skills. So I think beliefs and emotions are a big part of it. How do we look upon this diagnosis? What do we bring with it? What does this bring internally how you’re feeling about that? Is there a lot of guilt associated with that? Do you have this feeling that, “Oh, I should have caught this symptom before all of this really advanced.” So a lot of people can have those kinds of feelings, trying to understand it, so there is a lot of distress associated with what’s the course going to look like. I think a lot of times when you start out, they might not know, they have to stage it and do things. There are numerous tests, so it leads to all like how do we handle that?

And then, again, it’s the distress and sometimes it presents in different ways. It can be feeling low and feeling really irritable. People are like, “Oh, whoa, what happened? I just asked you a question and you’re like, ‘Nope, not right now.'” So it can present in different ways. There can be anger, there can be a feeling of like, “Why me?” Which is, I think if you put it all together, the psychological factors, I think it’s all a very normal human reaction. So there is no pathology here. There is a way we are coping with it.

So I really do want all of you to think about the psychological factors associated with a diagnosis and treatment of bladder cancer as being a very normal part of the journey. There is nothing that is abnormal. You do not suddenly have major depression. You might. You may fall in the criteria of DSM, like the book that we follow to diagnose, but I think it’s all very normal human reaction.

There can be anxiety. It can be anxiety about what’s going to happen with the surveillance, the scans? I have a lot of people who actually either see me just before their scans or right after their scans to just process it because it’s very scary what they’re going to tell you. If you’re really looking for how the treatment is progressing, if the chemo is working, if the radiation is working, there can be depression. You can feel low, you don’t want to do anything, you’ve stopped doing things.

Let’s say someone really likes to … I have a lot of patients here who play golf a lot, so when you’re not going out, you’re not eating out and you’re not going out to play golf, you’re not really connecting with friends, it can be a lot. People texting to ask you, “How are you doing now?” It’s a good intention, but it becomes so heavy sometimes to respond to that. So it can present as depression but, again, it’s a part of that emotional distress. There can be a lot of grief like I talked to before and after all the changes you go through, all the side effects of medications, chemotherapy, radiation, if you’ve gone through surgery. There can be just so much different components that it’s like a moving puzzle that you have to put the pieces together.

So there’s a sense of loss of that lifestyle. There is a lot of stress associated with it. What is the diagnosis going to be like now? What is the staging? Is there a recurrence? Every small symptom I’ve had patients … Everything … Sometimes people avoid thinking about that, so go the other way. And sometimes people just become … They really need to know from their physicians what’s happening. So there can be different ways that people present.

And then when do we seek treatment, especially psychologically when you do that? It’s just a very high level of distress that is impairing your functioning. There is increasing withdrawal, anger, isolation. You’ve stopped responding to your spouse or your kids and you just want to be alone. A lot of hopelessness that things are not going to get better, how bad this is going to be and just really feeling stuck. And also withdrawing from treatment or just really feeling that you have to see your physician or ask them about a lot of symptoms that are coming up. So just either engaging with them more or just kind of withdrawing.

So a lot of the treatments that are available that we do a lot is psychosocial support. So I hope that as part of your oncology teams you have social workers to support you. They can do a lot of supportive psychotherapy, provide resources. They’re a really good resource to have on your side. So I know Mayo Clinic does that a lot. They get assigned to a social worker as part of the Comprehensive Cancer Center and there can be psychotherapy that a lot of my colleagues in psychology do. And then we can … If it’s like we feel that it’s really impairing your functioning, you’re not able to work, you’re not able to do the things that you used to enjoy, and medication is a good option.

I always tell patients that, again, it’s like adjustment through the illness. So that’s a journey, it’s a phase. And I, generally, tell people that … Most people, it really depends how long they need to be on medication. It’s hard for us to predict, but mostly I’m very hopeful that we can take you off after a year or so or a few months, depending on how you’re responding to everything.

And then at Mayo I’ve seen a very good support from palliative medicine for cancer symptom control and we work very closely for … Most cancer centers have psychiatrists and palliative medicine working very closely to manage the symptoms. So they do a lot of pain control and things like that. They are very, very helpful. So I encourage all of you if you have that as part of where you’re getting treatment of that organization, to reach out and ask if that would be a appropriate referral for those who are not connected to palliative.

So that was just a very brief introduction, what are some of the things that I see more in my practice. And I’m very open to have questions and kind of answer as far as I know about things.

Stephanie Chisholm:

Show of hands if you don’t mind. How many of you have had a moment where you’re like, “I don’t want to talk to anybody right now.” And I see some of you are patients, some of you are family members, the loved ones that are helping on this journey, the co-travelers on a trip none of you wanted to take. But this is hard. And when you’re in a situation where maybe the family member or the friend who’s trying to cheer you up and bolster you and it’s not working or you don’t want to share your darkest thoughts, what can you do? What do you do?

Going to therapy is not a bad thing. It’s a good thing because it does help you get ready to keep doing what you have to do to do well, to thrive, to survive and go through the treatments. But there’s so many aspects of bladder cancer that are really scary, and not every hospital has a palliative medicine team that you can be referred to. And I know that not every patient here is being seen at a large hospital site like Mayo Clinic. There’s some that are being seen in their community practices.

So remember back in the beginning slides I showed you that we do have the 833-ASK-4-BCA phone number for cancer care to speak to an oncology social worker that can help you find resources in your location. And what questions … Doctor Kapoor did a really nice and quick overview of some of the common issues, but I know sometimes the person with the diagnosis doesn’t want to worry the person that’s loving them and then helping them and stressing them out, but sometimes maybe they just want to be alone.

What are your questions or concerns? And for the woman or the man who is helping, you just want to do everything you can and you want to be a cheerleader. But you know what? It’s easy when you’re burning the candle at both ends and the middle to run out of wax. It just happens. How do you sustain? What kinds of things are burning concerns or questions for you? And then also you can share. For everybody, how do you find a way to recharge your batteries, both whether you’re a patient or a family member that’s on this journey?

So I’m going to open it up to questions because Dr. Kapoor hit on so many. Obviously, if you go back for scans regularly, how many of you get a little bit anxious? How many of you get a lot anxious? Okay. You’re being honest here. We’re all among friends. Everybody knows what you’re going through. So if you have a story on how you benefited or what some of the concerns you have, raise your hand and Bernadette and Ivan will come around. We need to do it on the mic so everybody can hear. But go ahead, remember to say who you are and then ask your question. So we’ve got one in the back.

You got a mic and any questions? Okay. No questions. You guys are all so chill because, again, if you’re so chilled, tell us how you’re doing it because somebody’s going to benefit. So let’s start here.

Speaker 3:

I was an EMT for 30 years. Talking about anatomy is no big deal for me. Been very open with all my friends and family and everybody’s comfortable with that. I use my overnight bag on a regular basis because I have kidney issues as well and I’m drinking constantly and I’d have to empty my pouch every 20, 30 minutes. Different people have brought it up, but a family member just this week found me repulsive because of the bag and we’re dealing with that now.

But I’ve talked to a counselor and I said, “I don’t have trouble with people seeing my pouch. Do you want to see it? I’ll show you my belly right now.” I just don’t have trouble with that. It’s very frank, it’s very open. I know that online there’s a lot of products for people to keep it concealed because that’s comforting for them. I just don’t need to, but she really made me feel bad and ashamed about my feelings about it, and I’m dealing with that right now.

Stephanie Chisholm:

Thank you for sharing that. I think that’s really important. And I think it’s disfiguring in the sense that your body’s not what it used to be. First of all, your bladder betrayed you and then the treatments might have completely reconfigured you. And it’s embarrassing. Nobody talks about urination, nobody talks about sexual function. Nobody talks about any of these things that are impacted by bladder cancer.

Doctor Kapoor what can you suggest as an opportunity for growth and certainly to keep our individuals here feeling good? We don’t want them to feel bad.

Doctor Shweta Kapoor:

I’m sorry that happened and I know that it’s … And I thank you for sharing. I know it takes a lot of courage. And, Stephanie, you mentioned, we don’t, generally, talk about a lot of these things and I think the way I look at it is, it’s very hard when these things happen. You already have your plate full. You’re trying to get through it and really do what is best for you. So I think it’s … Absolutely you are right how you are doing it. So I think also taking a more … I think a lot of factors go into it. Is it a very close family member or is it someone who is just visiting? I think that can make a huge difference.

I think a lot of times there is a time gap where the caregivers or even family members have to kind of understand what’s happening and that might be a way of expressing distress. That doesn’t make it any easier for you. But I think sometimes in a way if that can help you get perspective and what you do with that, I really like the way that you talked about it openly and it seems like you are working on it and it’s a sign of them getting them to … So I think a lot of times some education around what the needs are, if things like that come up, putting your perspective forward by that, this is really important. And if they’re still not understanding, then I think do what is best for you.

And I think the other aspect is how do you manage that distress? When someone says that, I can only imagine how hard and heartbreaking that can be. So it sucks and it does [inaudible 00:16:25]. And I wish we had something … I talk to my patients, “We can do it and it’s very hard,” but I think you have to make decisions for your … Like, what is the best for you and your immediate caregivers and make a decision. Even after talking to them, you still get that feeling. I don’t think you deserve it so do the best that you can. You need to take care of yourself.

And I think emotions … The more we are able to … It’s not that you should not feel the emotions. I think it’s really great that you’re feeling those emotions, you’re able to talk about. Then a lot of times you are not able to do that. And I always tell my patients, “There’s nothing bad about good emotions and bad emotions. Emotions are just emotions.” So if it hurts, I think it’s good to kind of realize why, and I think coming to understanding that it’s okay, we have to feel our negative emotions too. And I think it comes up with cancer a lot with all the treatments and the diagnosis and I think it takes a lot of courage to keep being positive. I think it takes more courage to actually be more accepting of your negativity, sadness and feeling hurt and just … So do what’s best for you. If that kind of makes sense?

Stephanie Chisholm:

Ivan … Or where’s Ivan? Somebody get over there with a microphone.

Doctor Shweta Kapoor:

Oh, did you have a question?

Speaker 4:

She has a question.

Stephanie Chisholm:

Oh, you want to … Go ahead. Follow up. And then we’ll go over there next.

Speaker 5:

Sorry. It wasn’t really a question. It’s something you were asking about, “How you deal with things?” And as a caregiver, I get pain when I’m really stressed out, so he’ll ask me, “Do you want to take a bath?” So I’ll run a bath with Epsom salt and I sit in the bath for two, three hours and I read and that helps me feel better.

Doctor Shweta Kapoor:

I think that’s a great point. I mean, we do kind of … Our focus really becomes the person who has it. And I think that’s fair. It’s very reasonable, it’s an obvious thing to do. But I think for caregivers also to kind of have some mechanisms that are helpful for them for self-care, I think it is so important for the patient, for the individual who has the cancer and for the individual who’s caring for them. So I think both of their mental health is really important.

So I’m really glad that you have something that you can … And that you can remind her that you need to do this. So I think you look out for each other. So I think that’s the best way to do it.

Speaker 6:

How do you decide when patients need medication?

Doctor Shweta Kapoor:

So that’s a great question. I won’t say it’s subjective in a way. It’s kind of like the level of distress. So that’s the first thing. If it’s really impairing your functioning. If a patient tells me, “I was working and now I …” And they’re able to say that, “Okay. I’m in remission, but it just feels so heavy. I just feel so sad that I’m not able to work,” then that means that they’re not able to work, not socialize, not doing the things that they enjoy doing. So that kind of tells us that it’s at a level where medication and psychotherapy might be helpful.

The second part that I really … Because I do a lot of medication management … So I do both psychotherapy and medication management because I’m both a psychologist and a psychiatrist, so it’s a little bit different for me. I’m kind of very open.

The second part that I was talking about is very much what the patient is open to doing. So it has to be a very collaborative process. If you tell me that you just do not want to do medicines at this point, I will tell you that if I feel that it’s like there are suicidal thoughts or something like that, then I’m pretty honest with my patients and say that, “I really highly recommend that we do a medication.”

But at the end of the day, I think it really has to be collaborative. So it depends on the level of distress, the impaired functioning, and if the patient is willing to try a medication, then I give my recommendations. That’s independent. That’s kind of like what I think would be the best. But I really do want to take in consideration. A lot of my patients tell me they want to try psychotherapy first and I’m absolutely okay with that. Understand … I really feel that if there are … Mostly it’s like if there are things like suicidal ideation, a lot of hopelessness, because that’s kind of tied in with if you are not emotionally doing well, I think it becomes more difficult, the recovery process. So if I feel that it’s really interfering with treatment. So I think that that is another indication that medication would be helpful. I hope that answers the question.

Speaker 7:

Thank you for coming today.

Doctor Shweta Kapoor:

Absolutely.

Speaker 7:

I don’t really have a question. Maybe just an observation that I’d like to get your perspective on and see if anyone else in the room had a similar experience. When I was first diagnosed about three years ago, my response to it was … Instead of feeling a lot of emotions and anxiety and grief, because there is a lot of loss with this kind of diagnosis, I just buried myself. I went on the internet and I read every medical journal there is. I wanted to learn everything imaginable about bladder cancer and I felt that that would assure me of getting the best possible care.

But now with the benefit of time, in retrospect I realize that I think all I was doing was kind of delaying and burying my own emotional response. And it came out later in terms of some very big anxiety, which I’ve got over now.

But I just wonder if you find that there are people that do that? And what I’ve found was I had to just pull away from all that now. I realize I could never know as much as my surgeon about it and I just put my faith in her and live my life and enjoy every day.

So I don’t know if anyone else had a similar experience.

Stephanie Chisholm:

Any other comments? Obviously, this is not just about the individual with the actual bladder cancer diagnosis, but that peripheral partner on that journey. This is an opportunity to share what is working for you because an Epsom salt soak in a nice warm tub for an hour with a book could be the perfect solution for somebody sitting over on that table over there.

So if you have a thing that has worked for you, share it. This is a chance to do that. But this idea about coming back for scans, are there things people could do in advance? Because we know with clockwork when the next scan is going to be, and maybe it’s a month ahead of time, maybe it’s a week, maybe it’s the day before and maybe it just slowly builds to that point where you get to that day and it’s like, “Oh, my God. Oh, my God. What are they going to find?

Is there something you can suggest for self-soothing?

Doctor Shweta Kapoor:

Absolutely.

Stephanie Chisholm:

Or just some way to keep calm and not let this take over?

Doctor Shweta Kapoor:

And I know it is very difficult to stay calm. I’ll tell you I’m the most avoidant person. As a patient, I’m like the worst. I never adhere to anything. And it’s because over the years I’ve realized that I’m very avoidant so I don’t want to look at any of my labs or anything like that. And I just don’t know. I have this fear. So I see that in my patients that there can be that really … Because I think if you think about, especially the scans and if people have had recurrent cancer, if you think about it, there’s a lot of trauma involved here and it’s kind of bringing back those memories or flashbacks. And if the first scan was not what we wanted it to be and then every scan becomes like excruciating because, remember, you have those memories. There is a lot of medical traumatization as we go along in our cancer treatments.

So I think the way that I, generally, do when I do come in contact, when my patients are referred to me by our social workers, I absolutely encourage them to seek therapy. And I think that is where you really start that journey, kind of understanding what your reaction is. What is it focused on? What are you most scared of when the scan results will come back? So everyone has their different pain points and what triggers them. So I think knowing that.

And also finding techniques. Thinking about a little bit what’s bothering you the most and what is some of the ways that you used to self-soothe? So you gave a very good example. Ultimately, you had to step away. So Dr. Google is killing all of us. I look at it. I can tell you I have a lot of health anxiety. I go on there, and my dad is a physician so I call him all the time, and then he was like, “Okay. You’re a physician. You need to stop doing Dr. Google for every symptom.” It’s so hard not to do that. You won’t get … Not … “Okay. Is this bad?”

Stephanie Chisholm:

Please go to bca.org because that is vetted information.

Doctor Shweta Kapoor:

Yes,-

Stephanie Chisholm:

Okay.

Doctor Shweta Kapoor:

… exactly. So having sources that are valid information, your surgeon being the best person, discuss with your oncologist and your surgeons what’s really on the top of your mind. I tell my patients when the scan results are about to come to talk … Have a plan, talk to their doctors, what they are looking for this time. How much should you worry? And sometimes they don’t have answers. I think that’s okay. At least they can give you some perspective.

And then having self-soothing techniques like a bath with Epsom salt. I, generally, tell people … I don’t have it right now. It’s called a three-minute breathing exercise. You, basically, just put your hands on your abdomen. You don’t have to do anything. It’s, basically, training your mind to be in the present moment because we, generally, live either in the past or the future. So these are all grounding techniques. So this is the best one that I tell my patients, “You can just put your hand on your abdomen and go with the flow of your breaths in and out.” You don’t have to change anything. It might be fast, it might be slow, but it kind of brings you in the present. And it’s a marathon, it’s not a sprint. You have to train and train. You will wander. That is what human mind does.

So it’s finding techniques that are helpful to keep you grounded, look for what you’re looking, ask your doctor what to expect. I think just having some clarity is helpful.

Stephanie Chisholm:

Do we have a question here?

Mike:

Yeah. My name is Mike. There’s an app for that.

Doctor Shweta Kapoor:

Oh, yes. Absolutely. You’ve done?

Mike:

UCLA Mindful.

Doctor Shweta Kapoor:

Oh, okay. I didn’t know about that one.

Mike:

And to the other question about medication, part of my … My medical oncologist referred me to a psychiatrist after my diagnosis. The biggest problem I had was sleeping. When I’d lay down, my mind would start racing and thinking about the future and everything. Could not sleep at all. And she referred me to a psychiatrist and they put me on Mirtazapine, which has been very helpful. And then she introduced me to that Mindful app and it’s a great app. And I don’t use it a lot, but when I first was introduced to it and tried it, you just sit down, five minutes, and it’s great. But excellent app.

Doctor Shweta Kapoor:

It’s been helpful for you it seems like. That’s a new one. So that’s very helpful. So UCLA Mindful, and there are others like Calm, Mindspace, but I guess the UCLA would be more medical and that can be very helpful. So having those resources, looking for things that are working for you.

And, again, I should have put it on the slide actually. If you think about it, sleep is a big problem. Well, the first things you notice is insomnia. It’s exactly what you’re saying. You put your head on the pillow and everything is just like … It’s the traffic jam in your mind. Everything is colliding with … The thoughts are colliding with each other and that makes it so hard to sleep. And I think all of us experience it at some points in our life for different things. But insomnia is a real issue and Mirtazapine is a really great medicine. I use it a lot in my practice. It’s very good for sleep, it’s very good for appetite and it’s such an excellent antidepressant. So I’m glad that you benefited from that.

Stephanie Chisholm:

I’m so glad you brought up the issue of sleep because sometimes this diagnosis is the last thing you think about at the end of the day and you can’t let it go. And then if you happen to fall asleep, it’s the first thing you think of when you wake up. And that’s a sign of being under stress, right?

Doctor Shweta Kapoor:

Absolutely.

Stephanie Chisholm:

So, again, getting some help I think is really important and very impactful if it’s the right help. So when you can use some of these tools, whether it’s medicine or mindfulness or just going for a walk.

I saw a wonderful slide at one point where it was a cartoon of a person taking a dog for a walk and they had their little thought bubbles, and the dog’s thought bubble was of the tree and the grass and the bunny. And then the human’s mind bubble was everything at work was all over there. And I’m like, Oh, my God, that’s me.” I have two dogs. I take them for a walk, they’re sniffing everything. I’m thinking, “I got to get back. They’re not done yet. We have to go.” And it’s really a moment of saying, “Be in the present moment. Let’s stop and be grateful and then go from there.”

So we had a question in the back.

Angie:

Hi, my name is Colette.

Stephanie Chisholm:

Speak up a little.

Angie:

And I wanted to address the first man that had a question. Sometimes I use humor and I have a lot of grandkids too. So I have an ostomy bag and her name is Annie. And so that’s how we talk about her and we refer to her and make it a normal part of everything. So that’s what I did with the kids. You might try that with your family members. It kind of just makes it funny, brings humor into it.

And, for me, I lost all my focus for months going through all this. And when it started coming back is when I noticed I had lost it. And one of the things I tried to do every day was … I couldn’t read a book. I would read a page and I would put it down. I would start a movie and I wouldn’t be able to finish watching it. So I tried with little things like solitaire on my phone because I could just do the solitaire, complete it, go to do another game or whatever, but it was easy and senseless and I accomplished something that made me feel better.

Doctor Shweta Kapoor:

That’s a great example. And if I get started on solitaire on my phone, I just go on and on. So I try to … It’s also like an … But I think that’s a great example and I love how you have described it with the grandkids when they’re younger. So finding ways … And it also depends if they’re responsive, the family members, they really want to understand. But I think those are some ways that people find to make it also … It’s also, in a way, normalizing things. You’re still there and you’re enjoying … You can still … We just get caught up and we get … So, in our minds, it’s very hard to step out.

And another thing, Stephanie, when you said the walk and, of course, the dogs are very focused on the present and we are all over the place, that’s how our brains are wired. I think now there’s so much evidence scientifically that nature is such a healer. So they are actually prescribing nature walks and things like that. Just being amongst trees and nature can be very healing and you don’t have to travel for that. We all have certain spots we can go to, walks, and I think that is all part of life. But I love your … Those things really help. They really help me. The video games and things like that.

Angie:

Hi, I’m Angie [inaudible 00:32:43], and I’m going back to when the gentleman’s on the Mirtazapine. I’m not just a caregiver. I’m a cancer survivor as well. And then you end up being stressed and you don’t know it. You end up getting that downward spiral. And I am taking medication. I don’t think it’s working.

So my point is if things don’t work then I need to look somewhere else and tell my doctor, “This isn’t working. We need to try other things.” And that came to my mind as we’re talking, because I’m like, “Well, dang, I’m not sleeping. I have that stress and I’m taking something,” but it’s definitely not working. But it truly overcomes you.

And like that one woman said just recently, you don’t realize how far you’ve gone downhill until you start to come out and you’re like, “Well, dang, I haven’t seen people for a year.” And you’re not you. But I do think a second opinion, or at least talk to my doctor and get on something else so I can be like this guy, positive all the time.

Stephanie Chisholm:

True. This is true.

Doctor Shweta Kapoor:

I think it is very important to talk to yours. So when I start a medication, I try to-

Stephanie Chisholm:

[inaudible 00:34:10].

Doctor Shweta Kapoor:

… follow them within three to four weeks. Giving enough time-

Stephanie Chisholm:

There is one person.

Doctor Shweta Kapoor:

… and knowing if it’s working, and then my patients tell me … Sometimes when they say, “It’s working. Sometimes it’s not.” If it’s working, what is it helping you with? What is still that you want more help with? And then if it’s not working, is it flat out not working? But kind of having options, alternatives. I always tell my patients, “Don’t lose hope if you don’t respond to one antidepressant. We have others that we can switch to.” And you don’t have … If you started on one, you’re not condemned to be on that the whole time. We can absolutely make changes to bring it up. I think that’s a great point, though.

Stephanie Chisholm:

That’s the most important thing, is people don’t always even bring it up that, “I don’t think this is working. What can we do that’s different?” So make sure that you’re giving good feedback as to what is happening. If you’re in any kind of treatment, if you’re even taking medications-

Doctor Shweta Kapoor:

Absolutely.

Stephanie Chisholm:

… or working in therapy, keep going and keep giving so that you’re getting what you need out of it.

Time for probably one more question because I know you need to scoot in a minute.

Kim:

My name is Kim. I’m from Colorado. Here supporting my cousin who is going through this process. But also just want to say thank you to everybody who’s here today. Also, that I think all of you are brave. I’m also a caretaker for my husband who has a different type of disease and process that he’s going through, but I have also learned so much today.

But two things that I have learned here today also is I think we all need to show each other grace, regardless of who we’re caregiving for or who’s going through it because we both go through different circumstances, but at the same time we’re all going through the same thing and just need to recognize that and that we’re all in it together.

As a caregiver and a family member of somebody who’s going through something as well, I, myself, finally started to see and get help because I am a big advocate of trying to find answers and when I feel like I can’t find those answers, then I started spinning. So if I’m not strong in myself and I’m not okay myself, then I can’t help somebody else either. So, for me, I finally made that determination that in order for me to continue to be able to be supportive of my family, I had to be okay, and in order to do that, then I had to find a resource for myself.

The one thing that she taught me is the back of our brain, every 17 seconds has negativity. Every 17 seconds. Our frontal lobe is not fed on its own. We have to feed it. So every 17 seconds, when you have that negativity, go into your frontal lobe somehow, somewhere, whatever it is that makes that happiness for you in your frontal lobe, then you continue to practice that. And that has helped me so much.

So, for me, it’s my grandkids and that’s one thing that she noticed. So every time I feel that fear or some negativity or something come forward, then I think about my grandkids and then that all goes away. And it is amazing how that works. But it’s all about practicing mindfulness. So I just wanted to share that.

Doctor Shweta Kapoor:

Thank you.

Stephanie Chisholm:

That is a great example.

So I know Dr. Kapoor does have to leave because she has a little one that has to get picked up. Thank you.

Doctor Shweta Kapoor:

Yes. I apologize for my-

Stephanie Chisholm:

Thank you so-

Doctor Shweta Kapoor:

But I have to pick up my daughter.

Stephanie Chisholm:

… much. I know. And we don’t want you to be late because we know what a daycare center’s like.

Doctor Shweta Kapoor:

Yeah. So she’s not going to handle that well. So-

Stephanie Chisholm:

So this has been wonderful. I’m going to talk to you all. I’m going to let Dr. Kapoor leave so she can get to childcare on time because they don’t like it when you’re late.

But I think one of the things that is really impactful and helpful, often family members outside of the immediate loved one that’s on this journey with you, say, “Hey, what can I do to help?” Now the reality is … Thank you. Thank you so much. If somebody asks you that question, “What can I do to help?” you have to stop for a minute and give them a task. You have to think about it.

So the challenge is how do you channel that in a way … People do want to help. Maybe you have a list of things that are going to be beneficial, “Well, I would love if somebody could come over and help me do my laundry. I just can’t get to it. There’s just so much going on.” And there’s probably a good friend or neighbor that would come and help do the laundry, “Hey, you want to do something? Could you guys make a meal and freeze it so on treatment day we can have something when we get home and I don’t have to cook?” That’s quick and simple. If you’ve got a quick list, then you don’t even have to stop and think about it.

But asking people, “How can I help?” is just putting more stress because then the caregiver has to stop and think about what they can give you to do to make you feel useful. And yours is not the joy they’re trying to maintain. It’s their own joy and the joy of the person with disease. So don’t make them do that. So come up with some quick things. So say, “Well, I can use some help grocery shopping. Cutting the lawn, I can’t do it anymore.” All these things. Have a quick list, but then throw it back on them, say, “Well, what can you do?” Because they often have some good ideas, but maybe they don’t know how to ask. Say, “Can I bring you dinner? Can I do your laundry?”

I hope that this has been helpful. Obviously, there is help out there, whether it’s calling the 833 number, ASK-4-BCA, or talking to your providers and getting a referral in your own local community. This is something that’s really important. It’s important for the individual going through disease, it’s important for everybody who is coming along on this journey.

We are going to take a break, give you a chance to go back to your room if you want to, if you’re staying here. Or just sit down. You can step out by the pool if you want to. Take a moment. We’ll be meeting back in the lobby here for happy hour and then a lovely dinner with all those great foods from Ann and Gretchen tonight on the other side of the hall at six o’clock.

So you can also sit here and continue to fill out that sign-in sheet and get names of people you can connect with.

So this is good. We’re going to take a break. Thank you all.