Mental Health and Cancer Addressing Caregiver Needs

Foreign. I'd like to welcome everybody. Today's presentation on mental health and cancer, coping with a loved one's diagnosis. I AM your host, Dr. Donnelly Snipes. In this presentation, we're basically just going to explore the unique needs of loved ones and caregivers of people with cancer. So a lot of the things we talk about may be appropriate as well for people with cancer, but a lot of times we don't give enough attention to the needs of the caregivers. A lot of people with cancer are in outpatient care. They're. They go in, they get their chemo, they come home, and a lot of them still go to work. And there are things. But it's important for the people who. Who are helping the person with cancer to also have support. 650,000 plus people die of cancer each year. So let that sink in because we got really fired up over the deaths from COVID that didn't amount to the number of deaths that or only came close by the time we get to a full year of the number of people that die of cancer. I would really like to see us get that fired up about cancer and cancer prevention. But, okay, soapbox over. When someone's diagnosed, the patient and the loved ones grieve, they have an. Everybody has an adjustment process because you're bebopping along, you're healthy, you know, you get an ache of pain here. It's, you know, you figure you p pulled a muscle or you're tired because you didn't sleep, you know, and you take for granted that you're healthy. And then when somebody gets a cancer diagnosis, all of a sudden, that feeling of safety and security, that feeling that your body won't betray you, so to speak, is gone. And so there are a lot of things that change when someone gets a diagnosis. Even if the cancer is cured or goes into remission, there may be lasting disabilities, losses that we need to be aware of. Like I was saying, the loss of security. And this isn't just for the patient. This is for everybody around them. We become. When we have a loved one that has cancer, we become more aware of our aches and pains. We become a little bit more fearful sometimes. It motivates us to improve our health behaviors. But for a lot of people, when they have a loved one with cancer, it actually does increase their health anxiety, and we may need to help people cope with that. There may be in the person with cancer, they may have a loss of functioning or changes in appearance. They may lose their hair, they may have a loss of Function if they have to have, you know, a lung removed or something. My grandfather had a lung removed and obviously that impacted some of his cardiovascular abilities. So we do need to recognize that there can be loss of physical function that the person with cancer needs to adjust to. But as significant others and support people, we need to adjust along with them. You know, they may not be able to go on eight mile hikes anymore, or they may not feel comfortable during chemo when they lose their hair going out to restaurants or, you know, doing things that you used to do together, they may not feel comfortable doing that. And it's important for us as caregivers to be respectful of that and recognize that cancer often does change the dynamics of the relationship some. It doesn't mean it's got to get worse. It means it's got to adapt to the present context in the present situation. Additionally, when people have chemo, there is what they call chemo brain, but there actually is a full cognitive impairment caused by chemotherapy. Actual diagnosis, what we do know is that when people have chemotherapy, I mean, you're ingesting some pretty potent toxins to try to kill the cancer cells. It impacts people's attention, their working memory, their executive functioning like planning and, you know, all of those prefrontal cortex things and processing speed. This is not just during chemo. For some people, the cognitive impairment that results from chemo may last for an indefinite period of time. Some people, they get over it, but other people, it tends to have a more lasting impact. And we do need to again adjust to that. Because for someone who is used to being very independent, it may mean that as long as the cognitive impairment is present, they lose some of their independence. They need additional assistance. You can't take for granted that your loved one can cook for themselves and remember to take the food off the stove or, you know, there, there may be things that you've got to adjust to with that person when you are talking to them and interacting with them. You know, having to slow down what you're saying and what you're asking because their processing speed is much slower. Now, a lot of these characteristics of cognitive impairment that result from chemotherapy are similar. And, and I'm emphasizing the word similar because it's not the same as dementia. The person is not developing dementia. That's a whole different ball game. But a lot of the characteristics and the needs that you've got to consider may be very similar to someone with dementia. Remembering that the chemo brain may clear up once the chemo's over and the body's had a chance to recover. But we need to take those things into consideration. And caregivers need to be educated about this. They need to understand that this is an expected side effect of chemotherapy. 1. I'll get there in a minute. Unmet needs of caregivers and patients were associated with increased physical symptoms, anxiety and reduced quality of life in both the caregivers and the patients. If we don't meet their needs, if we don't provide them this, the the information they need, the resources they need, the support they need, then both the patient is and and and caregiver are often going to experience worse outcomes. Physical symptoms and anxiety. You have stress related disorders, you have autoimmune disorders that flare up when people are stressed, their immune system goes down. So the caregiver may get sick more often, may have more difficulty focusing at work. I mean, all of the things associated with stress are intensified when they are caregiving for someone with cancer. It's also important to remember that not everyone experiences grief in the same way. And families need to be educated about what I call the grief bill of rights. And I modified this one a little bit for cancer related grief. Everybody in a family has the right to know the truth and have questions answered honestly. Now, the patient is obviously going to be the one kind of controlling the purse strings on the information. But in many cases it's important for everybody that's involved to know the truth and have their questions answered honestly. Like what stage is the cancer at, what options are available. Everybody has the right to be heard with dignity and respect and able to talk about it as much as needed, or be silent and not talk about those grief related emotions and thoughts. That doesn't mean that the caregiver or the person necessarily needs to be talking to the same person as much as needed. This is where support groups come in really handy. Because if Sally needs to talk about it a lot, she's a an extrovert. She needs to process and talk at the same time. She may need to have a couple of people she can lean on so she can talk it out. Whereas if sue over here is an introvert and she processes her stuff differently, she may not feel like she wants to talk about it a lot. And there's al lots of different reasons that people may want to talk a lot or not talk at all. Not just their temperament. But it's important as clinicians, as counselors, social workers, pastors, that we are aware of the fact that people will have different needs for processing and we need to try to link them with resources so they can process as much or as little as needed. People have a right to not agree with your perceptions and conclusions. And there are a lot, there is a lot of debate a lot of times when someone has cancer about the best way to handle it or about what quote needs to be done. Not everybody agrees and it's important to be respectful and, and help the family develop effective boundaries so they can have their own perceptions and conclusions. They can basically agree to disagree. Obviously the patient is the one who's going to make the ultimate decision about a lot of things. So you know, about what they need, about what they want, about the type of treatment they want, etc, and we don't necessarily have to agree with them. However, we do have to respect each person's individual right to their own perceptions and conclusions. I have the right to see the person with cancer. Again, the patient is going to be the final one to control this. And at certain points they may not want to be seen. I know as my mother was ill and, and was in hospice, she didn't want her grandkids to see her the way she was. She wanted them to remember her, the vibrant person that she was before she got ill. And she had that right. So some of these you've got to navigate. If the patient is willing to see people and the person wants to see the patient, then, you know, we can make that happen. So, you know, there, there, none of these is, is completely a steadfast rule because again, the patient with cancer is going to have the final say in the, what happens a lot of the time. But it's important to recognize the importance sometimes of loved ones being able to see their, their, the person, the patient, before they die and able to, you know, have that final, final goodbye and get closure. Everybody has the right to grieve in their own unique way as long as it doesn't hurt themselves or others. That's self explanatory. Everybody has the right to feel all their feelings and think all of their thoughts. And this can be really challenging for caregivers because a lot of times we don't want people to hurt. We don't want them to be sad, we don't want them to be angry. Angry. And we inadvertently try to take away their pain and deny them and invalidate their feelings. And it's so important for when we're working with caregivers to be able to validate their feelings and let them have their feelings, work through their feelings and process in their own way, in their own right, without trying to, you know, Strip them of that. Everybody has the right to follow the stage, to not have to follow the stages of grief as outlined in a book. Not everybody goes through denial, anger, bargaining, depression, and acceptance. And for most people, it's not a linear process. They bounce back and forth between the stages. Especially when you're dealing with something like cancer, when there are good days and there are bad days and there are remissions and there are recurrences, people may bounce back and forth. And it's important to help them recognize that that's okay. Their feelings are their feelings. What's more important is acknowledging those feelings, figuring out what those feelings mean. You know, if I'm angry right now, what am I angry about? And what can I do to improve the next moment? What can I do to. What is that anger telling me that there's a threat about? And what parts of that do I have control over? What can I do to help myself move forward? Everybody has the right to be angry at death, cancer, even the patient, God, themselves, and others. And there's a lot of anger to go around. When people get diagnosed, they can be angry about, you know, the patient, well, if you wouldn't have smoked your whole life. They can be angry at, you know, the companies that made the cigarettes that the person smoked. They can be angry at themselves for not being a better, you know, loved one to the patient. There's lots of anger that comes up. Grief, guilt, you know, all of those things are. Have anger enmeshed within them. And people have the right to their anger. Remember, anger is part of fight or flee. It comes up when people perceive a threat. What's important is helping them process their anger when they're ready, you know, and some people want to sit with it for a minute and they, they aren't ready to work on it. And people have that right. Everybody has the right to grief bursts. And that is just exactly what it sounds like. You're bebopping along, you' feeling, okay, today's a good day. And then all of a sudden something triggers you and you have this grief burst or you're, you're getting through the day, and then something happens that's kind of minimal in, in normal times, but it's just, you know, all of a sudden that's the straw that broke the camel's back that day, and, and you kind of have a meltdown. Those are okay. Those are normal reactions when you're trying to hold it together under a whole lot of unknown. And people have the right to not be taken advantage of. And to feel guilt. We want to help people identify and acknowledge their feelings non judgmentally and develop a plan, tools, whatever you want to call them for how to deal with those feelings and how to cope in this ever changing process. Because cancer in most cases is not a short term thing. You know, it's generally the chemo itself may last multiple rounds, may go on for multiple months, and then you go back and you get checked. My uncle has had bladder cancer for going on 14 years right now. And he's had multiple flare ups and he's had multiple remissions. And so for his family, this caregiving for the person with cancer has been going on for over a decade. So there were changes, there are changes that they had to adjust to. So let's talk about some of these unmet needs. The most prominent unmet needs are not going to be surprising to you. Fatigue. A lot of caregivers extra experience extreme fatigue if they are doing round the clock caregiving. You know, that can get very stressful if they are, especially if they are having to do a lot for the person who has cancer because they're too exhausted from chemotherapy or their cognitive functioning is too impaired. And there are safety concerns, we can potentially help connect them with respite services. I know when my mother was ill, her people from her church would come in and help relieve my stepfather until, you know, the kids were able to get there and start pitching in so he wasn't having to do everything. My stepfather is 87, 88 now. So, you know, he was getting to the point where taking care of himself was a challenge, let alone trying to take care of her. And he doted on her like nobody's business. So caregiving around the clock can be exhausting. When you are caregiving around the clock for someone with cancer, there's also that thing in the back of your head. Unlike caregiving around the clock for an infant, you know, you know, you got to get up, you got to feed them, change their diaper, you know, all is well. When you are caregiving around the clock for someone with cancer, there are other considerations, there are other fears that come up because that is something that is so unknown. People may experience extreme fatigue due to insomnia associated with grief. They may be, you know, so overwhelmed with their grief, which is understandable, that they experience changes in their gonadal hormones, in their neurotransmitters and their cortisol levels that impact their ability to get to sleep, stay asleep and get that good quality sleep that is refreshing and rejuvenating. So they can very quickly get worn down. As that happens, their HPA axis is going to become hyperactivated, which is going to contribute to more insomnia. So we do need to work with caregivers to help them deal with this. And when I say caregivers, I really mean loved ones. And because it may be the person who's giving direct care, but it can also be loved ones of the person patient who are having difficulty sleeping because they are grieving the anticipated loss. So we don't want to restrict it just to the person who is providing direct care, but to all of those who love the person with cancer. Nutritional deficiencies are also a common unmet need in caregivers. A lot of times they forget to eat or they are trying to kind of eat on the run because they're trying to juggle six other things, especially if they're still working. And they're not, they're not 24 hour home caregiver. You know, they may be trying to juggle a bunch of different things at the same time and often tend to gravitate toward fast food, toward comfort foods, and, or maybe not even eat at all. Blood sugar is another issue that does come up that can contribute to fatigue because stress makes blood sugar a lot more difficult to regulate. So diabetes may be a lot harder to control. And blood sugar oscillations, as we well know, when our, when we become hypoglycemic or our blood sugar gets really low, you start to feel tired and weak and shaky. So any of these things can contribute to fatigue in a person who is a caregiver. Coordination of services is another prominent unmet need, especially before hospice is involved. Once hospice is involved, there are a lot of great hospices out there, and I have been blessed to work with a couple of them. I have also experienced one hospice that, you know, wasn't probably as good. But it's important to understand that even before hospice is involved, when the person gets the diagnosis, there are services that may need to be coordinated and that may include, you know, getting stools to put in the shower so they can sit down. That may include getting to chemo appointments and home shopping. If the person can't drive, can't, you know, ambulate on their own, or can't drive anymore while they're undergoing chemo, they may need assistance getting food to the house. You know, we need to ask about these things. We need to remember if they have pets, they may need additional assistance. You know, I live on a farm, and if I were down and out My kids are there right now. But if I were, you know, not able to get up and do the things that needed to be done on the farm because I was too weak to do it. You know, there are donkeys that need to be fed, chickens that got to be put up, dogs that need to go out. There's lots of stuff that has to happen at our house every day, which is why, again, I. It's important to figure out what the person's social resources are. Who do they have that can help them? CNAs are great. There are a lot of services that are out there now where you can. And Medicaid pays, Medicare, I'm sorry, pays for a lot of them. Where you can have a caregiver like a CNA come out like once a week and check on medications, make sure everything's set out correctly, and then up the level of care as the person needs it. But it is important to work with the oncology nurse. A lot of times it's the nurse at the, on, at the oncologist's office that is your point person for providing the case management and coordination of services prior to the person being in hospice care. Emotional support is important. And again, emotional support is needed long before hospice even gets involved. There is. It's a shock. It feels like you've gotten punched in the gut when somebody gets a cancer diagnosis. I don't think I've ever met anybody who would disagree with that. And there is an intense need for emotional support throughout the process, through every change. You know, the first chemo session when the person comes home and is puking their guts out and, you know, you feel terrible for them, and you know, the empathy that goes along with that can also be exhausting. There can be anxiety about what's going to happen, what's it going to look like? With mother, I was a lot more involved with her chemo treatments and wondering, you know, I hated waiting because we had to go through a six week course and then she would have another mri. And there was always this anxiety because I wanted to know, is it working? And helping people focus on, you know, what, where their anxieties are and what can I do at this point in, in this situation to best address the situation. I mean, I knew I couldn't get her an MRI any faster, so I had to take that and redirect it towards something that was helpful for her to, you know, do whatever I could to try to make sure that I was, you know, supporting her recovery in whatever way was helpful for her. Anger is very common in, you know, going through that grief process, being angry at the doctors, angry, you know, maybe you had to wait for, for chemo and feels frustrating that, you know, someone who's sick has to sit there and wait. There's a lot of things that can be irritating when you're, when you're dealing with stress because you're already in that fight or flight stage. So it doesn't take much to amp it up in from, you know, fight to anger. You know, from that baseline level of unhappiness to full blown anger, there's a lot of anticipatory grief that will often flare up. People try to push it down. They're like, I don't want to think about that right now, but then it'll pop up sometimes. And that's where those grief bursts may come from. We want to help them process through this and figure out distress tolerance skills that may be helpful for them. When these sorts of things happen, there may be guilt that people need to process because they had past issues with their loved one. Maybe their, their loved one, they, they haven't had a great relationship with that person for a while and they need, they feel guilty about that now. They're like, I should have been a better, you know, brother, or I should have been a better son or whatever it is. They may need to process that guilt. Not necessarily with the patient. You know, obviously if they can do it with the patient, that's usually pretty helpful to do some family therapy. But we do need to recognize that everyone who the patients, the patient has touched, everyone's life, who the patient has touched, they are probably going to have some sort of reaction about the diagnosis. And we need to help them identify what those feelings are. People also may feel guilty if they're happy. And we need to help them understand that it's okay to be happy. The person with cancer often wants them to be happy, but a lot of times people feel guilty for being happy at such a devastating time. Well, this could go on for, you know, in my uncle's case, you know, we're working on a decade and a half now. You know, that would really suck to not allow yourself to be happy for 15, 14, 15 years. So it's important to help people recognize the benefits of allowing themselves to be happy and acknowledging their feelings non judgmentally. You know, happiness is okay. They need to. And there's also guilt that comes up at the end of life when, for some people, when they have guilt because they are relieved when the person with cancer passes and because they're relieved that the person is not suffering anymore. And there, there's often a lot of guilt in some families. There's a lot of suspicion at the end of life because it's like, oh, you're happy because you're going to get the inheritance now. And there can be a lot of infighting and anger that can be misdirected at one another or maybe it's always been a dysfunctional family. But we do want to be aware that happiness can bring a lot of consternation from others. And, and we want to make sure that people recognize that it is okay to be happy. Another unmet need is information. Basic information, benefits and side effects of all treatment options, not just the one. The doctor thinks, okay, this is, this is the one. But what are, what are the options? You know, that basic informed consent. And also to have information about the illness. Some people want to know what caused it. You know, they want to have some understanding of why this is happening. They want to understand the course of the illness. Is this something that is going to drag on? I mean, some cancers they've figured out how to manage so people can live, you know, 5, 10, 15 years after a diagnosis. So it's important that we provide information about the causes, the course and care. And there's a lot of stuff in there. I mean, it's very intense information as things change. You know, I remember with daddy trying to keep him comfortable as the, when the cancer metastasized to his brain, he was very, he was very agitated. So how do you handle that and not knowing how to handle that and feeling very ill equipped at that point to even deal with what was going on, because I had no idea. And versus, you know, somebody who is bedridden, how do you prevent them from getting bed sores if their skin starts tearing as their body breaks down? You know, caregivers need to know this information. Some of this, some of the more intense. This stuff doesn't come until hospice is involved. And a lot of times hospice is very good about explaining what's going on and, but prior to that involvement, it's helpful to have a social worker or you know, a point person, a caseworker who can educate people about very specific care related issues that the person may have because a lot of them are common, but you don't think to ask about them. When people are on opioids for the cancer related pain, they often get constipated and you know, how do you handle that? Just basic things that we may not know. And I don't mean to point out men specifically. I'm not doing that to be mean, but the research has shown that men who are not traditional caregivers, men who have typically worked outside of the home, they haven't been the primary caregiver, often have a lot more questions and concerns about care because, you know, the extent of making dinner is like at ma. At my house, the extent of making dinner is either fried eggs or macaroni and chees if, if mama's not home. So men may have different needs than women, but we don't want to just assume because of their biological gender that that is the case. We need to ask people, how much information do you want? Men tend to. In interested in information. They want more information. Now that wouldn't apply to me, you know, because I'm not a guy. But I am going to delve into PubMed and the clinical trials and everything else. So we want to ask people, how much information do you want? Tell me what you want to know and let me be a resource for you as you have questions and don't. If we can provide a way for them to basically have an open channel to ask questions, that can be really helpful. The hospice nurse that took care of my mother was one of them, was very awesome because we had a really hard time getting straight answers from the oncologist and the nurse, you know, looked at the records and basically told us what was up. And it was a rude awakening, but it was. We felt better having the truth, having all of the information that we were dealing with because the oncologist was still trying to tell us there was hope and reality. There wasn't. There was, there was no turning back. So it is important to have someone that you can trust. It's important for families to have the information that, that, that they need in the amount that they need. Now remember that families dealing with this, caregivers, loved ones, whatever we're calling them this, this hour, are in a state of crisis there. And it can be sort of a perpetual state of crisis while you're dealing with this whole diagnosis. So write things down, talk with them face to face, present it as as plainly as possible, write it down and expect to repeat yourself. Because when we are in crisis, when we are stressed, we don't have really good memory and retention that is expected when you're in that fight or flight stage, glutamates high. You know, we can talk about all the reasons why, but the fact of the matter is when people are in crisis, memory is not their friend. Current caregivers have specific unmet Needs such as managing daily activities, you know, if they are, you know, mom moves, moves in with them or lives down the street or whatever and gets diagnosed with cancer and they're trying to manage their daily activities and take care of her. Or if a mom, a person that has young children at home has cancer and their significant other is trying to learn how to manage the household as well as balance their job and everything else on top of it, it can get very precarious. Now remember, we're talking about caregivers here. People with cancer also have a lot of these same needs. But you know, I really want to focus on the caregivers and how a diagnosis of cancer may alter their lives. Even being, you know, mother was in North Carolina and we're in Tennessee. So I wasn't able to help on a day to day basis. But making time to call her, you know, every day that she had chemo and you know, which is not. We didn't used to communicate that frequently. But managing, adding that in on my plate, getting time to go down there to visit her even when she was sick was really important to make sure that I added those things into my schedule and I figured out how to, you know, toss things around so I could make it happen. If you are caregiving, you can be exhausted and just not even have it to have a libido to worry about intimacy. If you're caregiving and the person with cancer has moved into the house, then you may be on 24 hour care duty and intimacy may become more difficult. If the person with cancer is your partner, maintaining intimacy may also be another issue. And all three of those are going to be a addressed a little bit differently. But we do need to recognize that it's important for the caregiver to have support, to have a level of intimacy and understanding with the people in their life. Current caregivers may struggle with managing their emotions about the prognosis. And that's we talked about those grief bursts. They may have difficulty balancing their own needs and the patient's needs. They may feel guilty if they leave and go to the gym or if they, you know, take time out for themselves instead of being at that person's bedside or at their house constantly. And it's important to remind people a lot of times that especially in the early stages of the diagnosis, this is a marathon, not a sprint. And if you are not healthy, if you aren't worn down and burned out, you are going to be no good to the person with cancer because you're going to be out of gas. And worse yet, you're going to be a lot more susceptible to getting sick and then you can't be around them at all. So balancing your own needs is really important. Now that being said, you've got to work with the resources that you have at your disposal. Even if the person isn't ready for hospice care yet in the early stages of diagnosis and treatment. It's also possible to reach out to your local hospice and get referrals for places and services and resources that may be in your community that can help with basic things that. Well, that can, that can provide assistance before hospice is involved. Caregiving may also impact the caregiver's work. They are exhausted from caregiving or even if they're not providing direct care, if they are emotionally distraught because their loved ones cancer diagnosis, it may negatively impact their work and their health. So we do want to help them recognize this and figure out ways to adapt and adjust as needed. Whether they need to take some time off or talk about job sharing or, you know, what kinds of accommodations might their employer be willing to make. With COVID I have to say the. One of the few, you know, bright spots we can find from this is employers have become more open to work from home, so caregivers may have an easier time convincing their bosses to let them telecommute in. Obviously, job permitting making decisions in the context of uncertainty can also be very challenging. One of the most helpful things that I was told in going through this process was most of the decisions that you make are not permanent. They can change as the situation changes. And as long as you're consult, I mean, obviously you're consulting with, with the patient about what to do and trying to make the best decisions to conform to their wishes and to empower the patient as much as possible. And Pat points out another great tip is to remember to hydrate. Not only make sure to eat, but make sure to hydrate because it can, you can go, you know, hours running around doing things and just forget to ingest anything. And financial concerns also can be a issue for current caregivers if they are having to take time off from work, or if they're less productive at work, or if the care of the person with cancer is not completely covered by insurance. Go figure. There can be a lot of financial concerns and making sure to help that person link with resources that can educate them about what they can do. For example, calling the hospital and negotiating for a payment plan. You know, hospitals want to get paid and they can write off a certain amount of their debt at the End of every year. So negotiating a payment plan can help ease the financial burden. On the front end. You may have payments for, you know, the next 30 years, but it can ease that financial burden some. So the person's not stressed about, oh my gosh, you know, I've got a seven thousand dollar hospital bill to pay and I won't be able to pay my mortgage. Former caregivers, now this is one I hadn't thought about but is so important for up to five years post remission. So that means, you know, five years without the cancer coming back at all. The person, the patient has been healthy for five years or more, but for that first five years, the caregivers or former caregivers may need help managing emotional distress. There is still trauma and in many ways you can see a lot of the symptoms that are ptsd, like in people who have cancer and in their loved ones because it is a life threatening assault on your body. So they may have intrusive memories, they may have difficulty managing emotional distress. They may get triggered easily by, you know, things that remind them of cancer. They may have intrusive thoughts about the cancer coming back for their loved one. They may be, you know, worried about that all the time or have intrusive thoughts about themselves getting cancer. They may have difficulty managing interpersonal relationships, especially if they, they were caregiving for an extended period of time. They're, they changed. They changed because that experience changes them and their friends and significant others, you know, in the outside world also changed because we change on a daily basis and it may be difficult getting back in the swing and reconnecting with those social supports and getting re involved with the things that were important prior to the loved one's cancer diagnosis. Former caregivers may also struggle reducing patient stress associated with the cancer, keeping the loved one calm so they don't fret every time that they have an acre of pain. Medically, former former caregivers have a much higher rate of stress related illnesses and that can include everything from autoimmune flare ups to higher A1C levels to, you know, just cardio increase in blood pressure and cardiovascular disease. So we do want to look out for that. And they may also have more medical problems as consequences of neglected health. During that six months, year, 14 years that they were caring for their loved one. They may not have paid attention to their own health and gotten their mammograms or their colonoscopies or whatever tests that they needed. So they may have some conditions that actually occurred and got a lot worse during this process. And so now they're having to kind of play catch up in order to try to reverse the course of those illnesses. Financial issues still come up and just daily activities kind of getting their groove back when they are caregiving, especially people who are like the primary caregivers, and their world revolves around this in, in large part for a significant period of time. Then when that's gone, they have all this time that's freed up and liberated and they may not remember what to do with it. They're like, I don't remember what I did. I have no idea what to do with all this time now. So we need to help them kind of reflect back before the cancer. What did you do? You know, now that this has happened, are other things more important to you? What would you like to spend your time doing? And then help them start trying to create a routine. Bereaved caregivers may have guilt over perceived failings with the patient or the family, and that's important to recognize. And they may need help working through the grief process and reintegrating into life themselves. When we talk about helping people cope, encourage them to use contextual facts about the illness in this patient at this time. You know, I told you my, my uncle has been battling bladder cancer for 14 years. Well, my mother had bladder cancer and it took her in less than a year. So their illnesses were very, very different. So we want to look at what is going on with this patient at this time. You know, is it operable? Is it, you know, stage one, stage four, what are we talking about? And different types of cancers have real. Some types of cancers have really good treatments available, and other types of cancers like pancreatic cancer, they're still just not much movement on. So we need to help people get the facts about this illness in this patient at this time. They also may struggle with this meta concept of the loss of this patient at this time, such as, you know, if this person dies, I won't be able to go on. I can't see my life without this person. So we do want to help them examine those thoughts and try to process through those thoughts as much as possible. Help them learn how to address cognitive distortions, the all or nothing thinking, you know, the cancer is either here or it's gone. Well, not necessarily. There are some cancers that, as I said earlier, people are able to espec. Like breast cancer is one of them. People are able to manage and live with and have their life extent life extended even though they have cancer. So it's not necessarily an all or nothing thing anymore, or I'm always there to help this person, or I'm never able to help this person. We want to help them figure out, okay, maybe you live 800 miles away, so you can't do exactly what you want to do. What can you do? Instead of saying, there's nothing I can do for this person, what can you do? Catastrophizing. Obviously, we want to help them address that and really look at the facts of the situation. Personalization can come up. And we talked about this a little bit earlier. Caregivers may feel like I should be able to make her feel comfortable, and if I don't, it's my first, my fault that she's suffering. So we really want to help people get an understanding of what is and what is not within their control. It's my fault that again, you know, maybe it is, you know, what parts of this are within and not within your control. Another one that comes up is, I made her angry. I feel bad because I made her angry. And there may be displaced anger. The patient may be very angry about their situation and may lash out sometimes because you're there. You know, they are already in that fight or flight mode and they just, they, they may misplace, misdirect their anger. So we do want to examine that. Sometimes you did something to make the person angry and you got to own it. It. Sometimes the anger is being displaced. They are just angry about the situation and you're in the way. Other times, and I experienced this with, with both of my parents, cognitive issues can make them not understand what's going on. And in that not understanding, they get very afraid and they can get very, very angry and indignant sometimes. My, my mother especially, bless her heart, the last time she was in the hospital was just giving orderlies all kinds of what for, and they were just doing their job. And my, my stepfather had to go and intervene a lot. And that was not like her. That was not like her at all. She was very meek most of the time, but she didn't understand what was going on. And that was her way of trying to prot. So helping the caregivers understand, you know, what might be going on, help them hypothesize where this anger might be coming from and what it might be directed at. And finally, mind reading, assuming, you know, what the patient wants or what the patient needs, we do need to help caregivers address that because a lot of times that creates frustration between the patient and caregiver and creates friction. So helping them, you know, develop effective assertiveness skills can be really helpful. Distress tolerance activities. I've kind of distilled down Linehan's accepts and improves to tags thoughts and it can be thought stopping and adding in positive thoughts activities, finding activities that make you feel happy or help you distract yourself, guided imagery, self explanatory and sensations. And that can be, you know, like holding ice cubes or doing push ups or something that can refocus your mind on an intense physiological sensation so you are not feeling the emotional pain for the moment. So you can down, down regulate that HPA axis and get into your wise mind. So again, tags is the mnemonic I came up with for that to simplify it for people. And some of the adolescents I've worked with have put that on a, a bracelet and they've had the little letters on a bracelet so they can remember like when they're at school they look down and they're like thoughts, activities, guided imagery, sensations. And they can mull over in their mind what they might want to do but it helps refocus them. Other issues include paternalization of the patient, thinking you know, what's best for the patient and they don't know if even in their most cognitively impaired state, the patient has the right to their feelings, their thoughts, etc. And we need to empower the patient as much as possible. Some people, caregivers need assistance explaining things to children because explaining death and cancer is really difficult, especially to young children who think very dichotomously and they still have a lot of magical thinking in terms of children. Coping with child behavior issues can be something that caregivers need. They're caring for a loved one with cancer, but the children, you know, that may be grandma, they love grandma and they don't understand what's going on. They may develop their own somatic symptoms and health anxieties. They may start developing extreme separation anxiety because they're worried that their caregiver, their caregiver, mom, dad is going to get cancer and die. They may have increased behavioral problems because they're not sleeping as well or because they are stressed out. They have anger, anxiety over what's going on or because the caregiver is spending so much attention and time on the patient. With cancer, the child acts out in order to get attention. It's like, hey, did you remember me? I'm over here. So we want to look at what is the meaning of the behavior. Behavior is communication. What is the meaning of the behavior and how can we help the child more effectively process it some children may refuse to go to bed, especially after the if the person dies because they're afraid that they won't wake up. But even during the course of the diagnosis, knowing that death may be a possibility, once we start talking about that, some children may may fear going to sleep, we want to make sure we don't use the term that, you know, mama or papa is going to sleep, because that's very confusing to children. Children have magical thinking. They may think that if they get all A's in school that grandma will get better. Or, you know, they may think that they can change the course of this illness. And it's important that we help them understand that that's not the case. As a result of any or all of these things, their grades may drop. So we may need to help families identify ways they can support their children and identify ways they can work with the school counselor to support the child in school. In terms of what we can do as clinicians, we can provide information to individuals as much as they want about what they want, when they want, using verbal and written means. But that means, you know, really amping up our active listening game so we can try to be attentive in the moment, provide support to them, and link them with others who can provide support, including support groups and spiritual guides in order to help them acknowledge the experience, connect with others who've been through the same thing or who are going through the same thing and who can facilitate expression of feelings and emotions. Encourage people to acquire new coping skills and promote emotion regulation and distress tolerance. Help them figure out how they can be as healthy as they can be so they can be there, you know, make it meaningful to them. Why do they care about taking them care care of themselves? Because that'll help them take care of their loved one. And finally, spiritual or existential therapy may be helpful to help the caregivers and the loved ones find meaning in this seemingly un, meaningless, unfair, awful situation. So those are, you know, I told you I knew I wasn't going to hit everything that a caregiver would need. But I really wanted to put the focus on the needs of caregivers so we could start recognizing the importance of maintaining their health and mental health so they can be there for their loved one who has cancer. I do have multiple videos on grief, complicated grief and grief in children on the YouTube channel. So, you know, if you want to look into further tips for actually coping with grief itself, those things are available. So everybody, have a fabulous day. Have an amazing weekend. I hope wherever you are it is going to be as glorious as it's supposed to be here in Nashville and I will see you on Tuesday. If this podcast helps you help your clients or yourself, please support us by purchasing your ceus@allce.com or getting your agency to sponsor an episode. A direct link to the on demand ceus for this podcast is@allce.com podcastceus that's allceus.com podcastceus to sponsor an episode of Counselor Toolbox and reach over 50,000 clinicians per week, go to allce.com sponsor thank you.