Caring for a loved one who is sick can be both physically and mentally challenging. Elizabeth Schandelmeier LCSW, from UPMC Family Hospice, discusses ways caretakers can take care of themselves while helping others.
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– This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgements when advising their patients. Patients in need of medical care should consult their personal care provider. If you are caring for a loved one with a chronic illness or disease, you know that there are both physical and emotional challenges. So is there anything that can be done to make the process easier? Hi, I’m Tonia Caruso. Welcome to this UPMC HealthBeat podcast. And joining us right now is Elizabeth Schandelmeier. She’s a bereavement coordinator and counselor with Family Hospice, part of UPMC. Thanks so much for joining us.
– Thank you so much for having me.
– So I guess the good news is, thanks to medical advances, many diagnoses that were once considered terminal are now treated as a chronic illness. So that’s great for the family, but there are also some stressors that come along with this.
– I think that’s entirely true, that as much as medical technology has grown and developed, it’s really amazing, I’m not sure that the emotional support that we provide families during that time has advanced in the same, at the same rate and the same pace.
– Right, so we talk about surely there are lots of physical challenges, especially if, you know, you’re the sole caretaker there or the main caretaker. What are some of the emotional challenges that often come along with that?
– When we’re talking about disease processes that require significant medical treatment over years, there are of course time constraints, there’s financial constraints, there are emotional situations that can occur as a person is changing through their identity, their own self-identity, but also the relationships that they have around them. So their caretaker, if that person is their spouse or their parent. Those relationships shift and change as you’re going through significant medical treatment. And sometimes people aren’t quite prepared for some of the feelings that come up during that.
– So you might think stress, anxiety, depression, is it correct in saying it can also be considered almost a form of grieving?
– Without question, there’s definitely grief. It’s an area that I think is a bit gray because in the bereavement world, we talk about death losses and non-death losses. But this is somewhere in the middle. It’s not a secondary loss because you’re not experiencing, you know, a first loss that has after-effects. For example, you have to move out of your house but then you miss your neighbors. That’s what we would call a secondary loss. With this, you haven’t experienced that primary loss, and so where are you in that space of grief? So often when we talk about grief, we really are hesitant in this space to talk about grief because we don’t wanna talk about death and dying because really what we’re talking about is surviving and the miracles of modern medicine. But as you’re shifting and changing through time in your relationships, those shifts are actually permanent. And so there is a certain amount of grief that can accompany all the changes in your life. It doesn’t mean that you can’t have a wonderful and happy life ever again. We can grieve and move through that experience to a more positive place and find joy and hope again. But I think developing some awareness about and using some words helps people understand some of the things that they may face, some of the challenges, the emotional challenges they may face.
– And is it safe to say for the caregiver, there is the possibility that they can really feel a loss of independence themselves?
– Without question. And often what people report to me is that they’re so hesitant to talk about that loss of independence because they’re so devoted to the person that they’re caring for and they don’t want it to seem like they’re complaining or that they’re not doing what they’re doing because they love the person that they’re caring for. But there are significant things that they have to give up in order to devote their time to caregiving. And those challenges may be financial, as we mentioned before, but also emotional. Maybe their support network isn’t as available to them, maybe even their career, for example, if your career is something that’s important to you and you have to put that on hold, it can have an impact on that. So there’s a lot that caregivers can go through. It’s also, caregiving tends to be a very invisible job. Most people have no idea the toll it takes on folks, especially because caretakers don’t wanna complain about what they’re doing because they’re so devoted. But usually people have no idea how much caretakers have to give.
– And so, what do you say? Someone is going through this situation, they are feeling all of the emotions that you and I just discussed. What steps can someone take to cope with this situation?
– Sure. First and foremost, let’s talk about perhaps the person who has the disease. Definitely, the first thing I would recommend is talk to your medical practitioners because sometimes clinical depression or feelings of anxiety, they can be related to actually the treatment that you’re going through depending on the disease process, depending on the medications that you’re taking. And so there are certain types of medical procedures in which we expect people to become depressed because it is a function of what’s going on in your body and the medications that you have to take. And so I think starting with your practitioners to make sure that there’s not a physical cause for some of the emotional experience that you’re having. And of course, if there is a physical cause, there may be things that your doctor could do to help on that level. If you determine that your mood, your emotions are not necessarily related to the treatment that you’re undergoing, then I would say, you know, first and foremost, talk to your partner about it. See how they’re feeling, see how you’re feeling. But you can also check in to see if your medical providers can recommend a mental health counselor of one sort or another. I’m finding more and more and more these days that our doctors are also recommending emotional support through providers for these families. I would encourage that, especially if you can find an emotional support provider who has some experience with chronic illness.
– And so what if you are, in fact, the caregiver? And that might be a harder, a more difficult conversation to start because you don’t wanna seem like you don’t wanna care for this person.
– Absolutely. There are certainly caregiver support groups, and those can be a wonderful benefit, but they can be difficult for caretakers because they don’t have a lot of time to be able to devote to going out and taking care of themselves. But I always encourage caretakers, first and foremost, to stay in touch with their own medical practitioners and to make sure that they are eating healthy foods and taking care of their bodies. Because this is, of course, something that also impacts your mood and your energy, and you don’t wanna forget about taking care of yourself while you’re taking care of others. So through that process, you can also ask your medical providers if they can recommend somebody to talk to, support groups or a therapist, whatever seems more appealing for you. In terms of talking to the person who has the illness, there’s been some recent research that has shown that the stress levels that are experienced by the person who’s ill usually are about equivalent to the stress levels of the caregiver. And this is, I think, a really interesting development in our understanding of what families go through. So if you’re both stressed out sort of to the same level, you know, what can you do about that? And oftentimes part of the answer to that is to communicate with each other. I’ve had experience with working with folks who do have chronic illness, who have told me, you know, I’m so concerned that my partner is carrying the brunt of the burden. They have to deal with me when my behaviors are erratic as a function of this disease that I’m experiencing. They’re so worried about me. And so the person who’s sick is so concerned about the person who is providing for them. On the other hand, I work with other clients who have told me that their greatest regret is that the person that they were caring for didn’t tell them what they were going through. And they really missed having had that ability and that chance to connect with them. So sometimes it’s just a matter of sort of addressing the elephant that’s in the room and, you know, taking the first step towards opening up that conversation and getting used to talking about things that seem difficult. More often than not, the truth of the matter is it’s more difficult to not talk about these things. Taking that first step can be hard, but it really does open up a lot of doors.
– And every time you’re here throughout the series that we’ve been doing, you always say to normalize grief. And I would ask, is that an important step in this process as well to recognize that these feelings are normal? Are there any lines that can be useful or helpful in opening up the conversation?
– I would say always developing awareness of some of the potential things that you might be going through when caring for somebody or when going through treatment, that can be so helpful for folks. This is a part of what we need to talk about more openly. And part of the reason I’m so glad to be a part of this series, when it comes to opening up the doors to conversation with somebody that you love, you each know each other. Build on that. Remember that you are connected, you are bonded, and there are reasons why you’re going through this together. So draw on that strength. And if you find that you open up a conversation and the other person really is not interested, or not capable, or in an emotional space where they can actually have the conversation, at least it’s begun. And that’s okay too. It might be that you can circle back to it in another way, on another day, but then you also have the information that you need to know, well, maybe I do need to find somebody else to talk to, and so that I don’t burden another person with the things that I’m going through. But chances are, once you open that door and give it some time, give it some space, develop some awareness, give the other person permission to have the feelings that they have too, let them know that you don’t have expectations about where they are or what they should or shouldn’t feel, then I think that can be a very free-flowing conversation.
– Is it okay to cry or should you cry in this situation in a room where no one sees you? Or is it okay to cry in front of the person you’re caring for?
– Well, I’m a big fan of crying .
– Somehow I knew you were going to say that.
– I don’t measure anything in tears. You know, I always like to start by just saying, it’s a physical response to an intense emotional experience. So sometimes we cry when we’re even laughing. Some people cry a lot, some people never cry. So I always think it’s okay to cry. But in terms of if we wanna use sort of crying as a metaphor for, is it okay to be sad in front of somebody who is sort of the root of your sadness? The answer is yes, because wouldn’t you imagine that they expect you to be, nobody wants you to be sad, but nobody wants the person that you love to have a disease that they’re having to cope with either, right? The entire situation is unfortunate. And so to be able to be honest about that, I don’t think anybody would be surprised to hear that a person that loves them feels sad that they’re going through something that’s a real challenge.
– We’ve already talked about how time is so precious for a caregiver. Are there things that you encourage caregivers to do for themselves in the midst of caring for their loved one?
– I’ll be perfectly honest. Mostly I encourage them to be, to find ways to support themselves in ways that are not too taxing on the time that they have to give. So often we’re a little hard on people who are in these situations. We say, “Oh, you need to do self-care, “you need to go out, you need to do these things.” And if they’re not able to do that because they are constrained by the caregiving they are providing, it’s another way that they feel that they’ve failed, they’ve failed themselves. And so I think the trick is to find moments, moments in the day where you can look out the window, take a deep breath, watch the birds in the trees. You know, most of us can find 30 seconds or a minute during the day to do something that will help lower our own stress levels. You know, maybe take a walk around the block if you can leave the house. But people can’t always even leave the house. And so, you know, if you have somebody that you can invite over to sit while you can take a walk, that’s always a good idea. If you have to drive in the car, you know, taking some deep breaths at every red light, whatever moments you can take to focus a little bit on your own level of anxiety and stress I think would be, it is helpful. It’s cumulative, you know, it’ll help over time, even if it doesn’t solve the problem.
– How important is it and/or is it a double-edged sword to know as much about your loved one’s condition as possible? I would think on one hand, knowledge is power, but then could it also make you hypersensitive and worried about everything?
– Well, I think most of us would agree that it’s typically a bad idea to ask Dr. Google , to go online.
– Exactly.
– The idea of going online and finding out every little bit of information, first of all, it’s overwhelming. Second, you don’t know if it’s accurate. Third, you don’t know if it applies to your own situation. And fourth, it’s only likely to bring you anxiety. If you have questions, if there’s things that you wanna know, ask your doctors, ask them for the help. And if they don’t have the answers that you’re hoping for, ask them where you can look for them. Ask for safe, you know, safe places with good information. I personally do think that knowledge is power and it helps to inform us about the decisions that we make. You know, is it wise to go on a trip? You know, is this the time for us to travel around the world or is this a better time for us to pick out our, you know, top 50 favorite movies and plan to hibernate at home and find ways to have fun without going out into the world, for example, for a person who has a compromised immune system, just as an example. You know, how can we bring joy, life, hope into the world that we have in front of us right here and now, even if it’s a different world than we wanna be in?
– Is there a way that people can make good memories in the middle of all of this and not always be so focused on the disease or the illness and the caretaking, but pulling some goodness out of this?
– Absolutely. I think that as long as a person is alive, any moment that we have to walk this earth is one in which we can find joy. So of course, we have to acknowledge the sadness in order to be able to move through it, and ultimately get to another place in which we can also find happiness and joy. The opportunity for hope, these are the things that we all require in our lives to make them fulfilling. So making memories, having as much fun as you possibly can, feeling as alive as is available to you, you know, through those moments is extremely important. You don’t wanna feel that you’ve given up, you don’t wanna feel that you have created a space where there is no love, or there is no good, or there is no life. So whatever you can do to bring some fun into your experiences is gonna be good for you.
– And would you say it’s important to create a new sense of normalcy, or just to normalize what is now the way things are?
– Sure. I think creating normalcy is a challenge because as you’re going through treatment, whether you’re the person going through it or the person companioning, nothing is normal. And so recognizing that I think can be helpful. What I might suggest instead of thinking about normal is thinking about stability. What can I do to create some stability in my life since the world around me is changing so quickly and I don’t know up from down, I don’t know what’s gonna happen tomorrow. What can I create in the here and now that feels, that is something, a touchpoint, something that I can go to, something that doesn’t change. So for example, you might think about creating a space in your house that is really beautiful that doesn’t have any medical equipment in it. You know, a place that you can go perhaps and read a book and not look up and see your pill cabinet or whatever it might be that you have. Or a place that, you know, a tree that you enjoy going to that you can sit by and just relax and breathe. You know, some space that doesn’t change that provides, again, some stability and a reminder that there is a world that doesn’t change outside of your experience.
– And what do you want to say to caregivers about asking for help?
– Ask for help. Please ask for help. Nobody knows what you’re going through. Nobody understands the depth of the commitment that you’ve made. Nobody understands the lack of sleep. Nobody understands that you’re listening for your person all night long, or that you’re having to cook all the meals and do all of the cleaning. People just don’t know that you’re doing all of those things and how exhausting it can be. So if you have friends or if you have family or kids or parents or anybody who is willing to help in any kind of way, please ask for help. Also, you could certainly turn to outside groups. Again, support groups, therapists, your medical professionals, any folks that you can think of. And if you don’t know who to think of or how to even start going about this, talk to, again, the medical professionals, whether it’s your doctor or the social worker in their office or the nurse practitioner. All these folks are used to seeing the kinds of issues that you’re going through. You’re not alone in this. And there are resources, and sometimes we have to ask to be introduced to those resources. So don’t feel embarrassed or shy to do that. One other thing I like to, I did wanna mention for caretakers is the idea of the impact that finances can have on both your mood but also your household. You know, these bills have to be paid whether you’re caretaking or not. And so I do like to remind caretakers that there are many, many programs that can help support and you shouldn’t feel embarrassed to ask. Paid caretaking is something that our government is increasingly aware of to allow people to stay home so that we don’t have to place the people that we love in nursing homes or in hospitals. You know, the more we can do to support caregivers in the home, the more likely folks are able to stay home. And home is always a better place.
– Right. Well, as always, some great information. We thank you so much for coming in and spending time with us today. We really appreciate it.
– Thank you so much for having me.
– You’re welcome. I’m Tonia Caruso. Thank you for joining us. This is UPMC HealthBeat.