Caregiving: Tips for the Sandwich Generation

Episode Transcript

Faith: Welcome to Health Matters, your weekly dose of health and wellness from NewYork-Presbyterian. I’m Faith Salie.

More than half of Americans in their 40s are juggling two big responsibilities: caring for an aging parent while raising their own kids. They are members of the sandwich generation, and if they are primary caregivers to both, it can feel overwhelming.

To talk about those challenges and the resources that are available to caregivers, I spoke with Dr. Cynthia Pan, a specialist in geriatrics and palliative medicine at New York Presbyterian and Weill Cornell Medicine.

She offered tips for caregivers, including the importance of prioritizing their own well-being during stressful times and how to have hard conversations with the people we love.

Faith: Dr. Cynthia Pan, thank you so much for joining us today on Health Matters.

Dr. Cynthia Pan: Thank you. I’m excited to be here.

Faith: Let’s get started with this fact: According to research, about a quarter of adults in the U.S. have a parent age 65 or older and they are supporting or raising at least one child. That’s a lot to take on, isn’t it?

Dr. Cynthia Pan: Yeah, exactly. So this is the sandwich generation. You’re sandwiched between caring for your parents and your children. So from my perspective, being a geriatrician and palliative care physician, I really want to provide as much support for that caregiver as possible because if the caregiver falls apart, then a lot of other pieces will have the domino effect. So there are a lot of places to ask for help. And I think number one for the caregiver is to acknowledge that they are in that caregiving position.

Faith: For people caring for older loved ones, what does that entail?

Dr. Cynthia Pan: Caregivers, they are not only providing care physically — it’s hands on care can be really tough. And, but it’s not only physical, it’s also emotional. You have to be there for that emotional support; financially, socially, spiritually, it’s a lot of dimensions that you’re providing care to someone that you love. So because the caregiver is putting all of these dimensions of care to the patient, let’s say, to their loved one, they also need to be replenished in all of those dimensions. So we call it kind of a total well-being approach.

Even if somebody has been not so well for some time, it’s always a shock that all of a sudden you know, it becomes like a crisis and then somebody really has to pick up and become a family caregiver not having had any training, not really knowing what to do.

I think one of the things is, um, self doubt, oh my God, I’m going to have to do all this. How am I going to do it? Where am I going to get some help? Who’s going to help me? I feel all alone. It takes a lot of courage.

Faith: it really does. And so where do you even begin to answer those questions for folks?

Dr. Cynthia Pan: Yeah, so I think the first thing is that you’re not alone. We are here to support you. In palliative care, we’re definitely providing an extra layer of help for patients who have serious conditions, but for the family members too, because, you know, the patient and the family at that point really become a unit of care. We’re not just taking care of the patient, because whatever plan we make with the patient, if there’s no family support is not gonna go anywhere.

Faith: One thing I was hoping that you could clarify is exactly what palliative care is. How would you define it?

Dr. Cynthia Pan: Very simple. Palliative care is basically a specialized medical field for patients who have any kind of serious illness and for their family members to kind of get them through whatever stressors they’re dealing with. A very good example of that is someone who has advanced liver disease from maybe, you know, liver failure and is awaiting a transplant. So in the meantime, you’re palliative care, because you have a serious illness, you could die from the liver failure. You can’t take a lot of medications because your liver doesn’t work. So it’s a very tricky situation.

Faith: Is the main idea of palliative care to manage pain, to diminish pain?

Dr. Cynthia Pan: Pain and suffering. Pain may not be just physical. It may be spiritual, emotional, social, financial, all of those things. There was actually a study that was done, distinguishing are you having physical pain or spiritual pain? And a good number of them had spiritual pain. So when patients say, I’m in pain, we can’t really just treat it with pain medications because it may be another dimension. Can you tell me where it is? And does it radiate anywhere? And some patients are very willing to say, yeah, it’s, you know, you got it. It’s not physical. And some people say, what kind of question is that? Of course it’s physical. Uh, but you have to ask.

Faith: People talk about caregiver burnout. What does that look like? How do you know if you’re experiencing it?

Dr. Cynthia Pan: Yeah. Burnout is so prevalent now. and I think it’s the stress of feeling overwhelmed, the feeling like no matter what I do is just not good enough. You know, some people become such devoted caregivers for a long time that their whole life is enmeshed in it. They take on that role. That is their role and then when their loved one passes away, they feel like they’ve lost their sense of purpose.

Faith: How do you help people navigate this feeling of burnout?

Dr. Cynthia Pan: I definitely recommend people to think about taking care of themselves and managing the burnout and the stress by focusing on the ABCs. So what’s that? Right? A is really acknowledge the stress. Acknowledge. Some people don’t acknowledge that they’re stressed, right? So just take a deep breath and acknowledge, yes, I’m stressed out. I’m burned out. I need to ask for help. I need to accept help. I need to also let go of control. Learning to accept the things that you can control and letting go of the things that you can’t. That’s the serenity prayer. So definitely believe in that. So those are just the A’s.

And then the Bs are the basics, like they talk about in that Maslow’s Hierarchy of Needs. You have to have your basic needs met, otherwise you can’t even handle or think about anything higher level. Sleep, don’t over drink alcohol or substances, making sure you get fluids, making sure you go out for a walk, get some sunshine, fresh air, the basics. You need that. If you don’t have that, you can’t deal with anything else. And try to do some of the things that you do enjoy. Don’t give up those hobbies.

Faith: So basics sound like a foundation of self care.

Dr. Cynthia Pan: Yeah. C is stay calm. Really having compassion for yourself. I just say, you know, today I’ve accomplished two big things or two little things. That’s good enough. I don’t have to finish all my list. Tomorrow’s fine.

Right. And then having compassion for others. Let’s say if you asked your brother to do something and he didn’t do it. Right? Um, first reaction might be, well, you know, I do everything and he does nothing. But maybe he had something going on. Assume the best of intentions. So, compassion. And then build a community and stay connected because having a social support is very important. They have to refill their cup. I don’t know if you know that mantra: May I be well, may I be happy, may I be at peace, may I be loved.

Faith: That’s all we can all ask for, right? For ourselves and for the people we love.

Dr. Cynthia Pan: Yeah.

Faith: What if people are afraid that they cannot afford help?

Dr. Cynthia Pan: Yeah. So it depends on what kind of help and, uh, depending on the condition of the patient. Alzheimer’s Association, you know, for patients who have, uh, dementia has caregiver support. Um, there’s a whole website on national caregiver, uh, programs where you can actually sign up to get a little bit of training and case management and things like that.

Geriatrics and palliative care is a very team-based specialty. So on our team, we have nurse practitioners, we have a social worker, we have a pharmacist, we have chaplains, and we work with all the services in the hospital, including patient services, spiritual care, case managers, speech and swallow therapists and physical therapists. The hospital has a lot of resources. You just have to be able to ask for help and know where to ask for help.

Faith: Are there some common misperceptions about palliative and hospice care that you often address with patients or caregivers?

Dr. Cynthia Pan: Yeah, a lot of times people get the terms, um, they just intermingle and use them interchangeably. Hospice care is a Medicare benefit and it’s for people who have about six months or less in life expectancy. So it’s end of life. And if you’re talking about death and dying, that’s very scary for people, right? So a lot of people don’t want to talk to palliative care physicians. They don’t want to hear the word hospice.

Faith: Why is it so important to talk about end of life decisions and how do you recommend people start these conversations?

Dr. Cynthia Pan: Yeah, I think it’s so important to have that conversation, even though it’s hard and it could be emotional. I think the other thing is people are afraid of getting emotional, right? Meanwhile, that’s a hallmark of us being human beings. We have the privilege of having emotions and we don’t want to show it. People don’t want to show joy because they say, Oh, you know, then the other shoe will drop. So what? Let it drop. I mean, you know, enjoy the moment.

Um, so I definitely recommend people to start having discussions about advanced directives, about what’s really important to them, about what brings meaning to life. So I would say use the podcast, you know, as an excuse, uh, blame it on the podcast, blame it on New York state because New York state says everybody who’s age 18 or older needs to have a health care proxy. You know, if we’re lucky, we have a lot of people around us who potentially could be our healthcare proxies. So we want to think about, uh, who that person might be carefully. And should something happen, who is strong enough and knows you enough to make your health care decisions?

Faith: What are some things that everyone should consider about their own care directives?

Dr. Cynthia Pan: Yeah. So I think that anyone who’s listening to this podcast, to really think about what’s meaningful and important to them? What makes, um, what makes them tick? What’s really important? Because as doctors in palliative care, we always wanted to talk with family members and patients about what’s important to you in your life, what matters most.

Faith: This is a kind of put it on your to do list today kind of thing.

Dr. Cynthia Pan: Yes It’s important to start that conversation.

Faith: Dr. Pan, I have been flooded during this conversation with, uh, memories of taking care of my mother when she was in hospice, when she was younger than I am now.

Dr. Cynthia Pan: Wow.

Faith: And feeding her tapioca pudding at the very end of her life, cause that’s all she wanted and all she could swallow. And having her ask me what I wanted to do in her funeral mass. And it was the hardest and most wonderful thing I ever got to do. It is… As hard as it is to take care of those we love and say goodbye to them, it is also a tremendous gift.

Dr. Cynthia Pan: Yeah, you should be very proud to have been a caregiver for her.

Faith: I am very grateful. And I am very grateful for this conversation and for the work you do. Thank you so much.

Dr. Cynthia Pan: Thank you.

Faith: Our many thanks to Dr. Pan.

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