Jaime Lewis (Host): When someone you love is diagnosed with multiple sclerosis, you want to help and be supportive, but it's not always clear exactly how to do that the best way. Being a caregiver, family member or friend of someone with MS brings its own challenges and questions.

Here to offer guidance on how to provide meaningful support while taking care of yourself too is Dr. Ann Cabot, a neurologist with Elliot Health System who works not just with MS patients, but with their entire support network. This is Elliot Health Talks. I'm your host, Jamie Lewis. Dr. Cabot, thank you for joining us for this important conversation.

Dr. Ann Cabot: Thanks for having me.

Host: When somebody's loved one is diagnosed with MS, what are the most important things they should understand about the condition?

Dr. Ann Cabot: Well, it's a lot to learn. I think that's the first part. I think anytime someone gets a new lifelong diagnosis, it's a bit frightening. It's frightening until you get the information, right? So, education is probably the best first step, like just making sure to review. What is the diagnosis? What are my options, how am I doing? And then, maybe even going to the appointment. I always love when a family member, friend, sibling, sometimes it's a parent, comes to the appointment and joins in, because then we can actually even look at the pictures together and they're hearing firsthand what information is being exchanged with the patient and it's not such a mystery. Especially in newly diagnosed patients, I think it's very overwhelming. There's so much information out there. We give a lot of information. There's a lot on the internet. There's good resources, there's bad resources. And we want to make sure they get all the right tools and information.

So, the first place to start really is, you know, come to the appointments, and then start on the process of education. My favorite thing is when care partners, friends or whatever come, and they bring their list of questions with them too. Because we want to make sure, as the providers of the patient care, that we're delivering all that information, or at least giving the correct resources as well for them to look at afterwards.

Host: As somebody who has done a little bit of caregiving for family members, I'm curious, you want to be helpful as a family member, but there's often a fine line between supportive and overbearing. So, how do we find that balance?

Dr. Ann Cabot: Right. It is true. Sometimes patients are doing just fine. They don't want any help, right? Or this is where the magic of open and honest communication takes place and not forgetting patient autonomy, right? So, open and honest communication can be really easy for some families or friends and really challenging for others. And it really is okay to talk to the patient about asking permission. You can ask the patient permission, like, can I come to your appointments? Sometimes the patient doesn't want that. I think most of the time they do, but sometimes they really don't. And saying out loud, "I respect your decisions and I just wanted to ask you," that's a good way to start the conversation or "I respect what's happening and I want to make sure that I acknowledge that I don't want to be overbearing, but of course I love you and I care for you, and I see that you're suffering," or maybe not, right? So, just having that conversation and starting it that way is really important.

I think sometimes we have to be aware of our own feelings of anxiety, guilt, frustration, depression that are our feelings that we don't want to put into the patient, right? And then, we have to acknowledge that the patient is also going through that journey. And so, maybe getting even some help to talk through if the conversation gets challenging, working with a therapist or connecting with your provider to see if there's a therapist available, social worker, primary care, it doesn't really matter, in order to sort of smooth that pathway and that conversation.

Host: Yeah. Well, I mean, caregiving, like you said, it can be emotionally draining. It can be physically demanding. What are the signs of burnout that a caregiver should watch for in themselves?

Dr. Ann Cabot: Yeah. So, I think important to say that a lot of my patients are independent, right? So, care partners end up-- sometimes it's acknowledging that maybe the roles are different. So, maybe somebody used to be able to do more tasks around the house and then, because of their MS fatigue or some balance issues, or something like that, they're just not able to do some of those tasks as much as they used to be. It's not selfish for the care partner to say, "How is your MS affecting me?" And I feel like people feel bad saying that, but it's not. It's time to have a conversation if that's the case, right? And acknowledge it. It's okay when roles change to say, "Hey, our tasks have changed. Maybe you're not able to carry out the garbage like you used to, and that's now my job. But you're really able to do this. Is it okay if we talk about these tasks and what we're concerned about and things like that?"

Maybe it's a change in the relationship romantically. Maybe someone gets really tired and wants to go to bed instead of going out, how can we keep the relationship compatible in those things. And these are often really manageable, but they become problematic if people don't open up and discuss them. So, a lot of the symptoms of MS are invisible, right? So if somebody's having fatigue or spasticity or sexual dysfunction or things like that, it's important to give them permission to talk to you as the care partner. And then, be realistic about how much you can do as a care partner. And then, if you go to appointments, perhaps there are ways that you might be able to partner up together to work on some of the self-care.

So, I think this is where the fun part comes in. So, being a care partner doesn't always have to feel like a burden. It is actually really kind of-- it could be a joy. So, what a lot of my partners do is, if they come to the appointment and we talk about, "Hey, you know, my patient has fatigue," and now they're like, you know, "We used to love to go play cards every Friday night, but now I'm really tired. I want to get to bed on a reasonable time." But we think about like other ways to keep that relationship fun and going like, "Okay, let's find another thing to do that's maybe during the day." Then, other things that are enormously fun are things like, "Okay, maybe we need to work on some lifestyle habits." So, things like eating nutrition, stress management, sleep hygiene.

So like for instance, we have a mindfulness class that we've been doing for a long time. And it's open to patients, but it's also available for care partners. So if patients do have a lot of stress, they can take this eight-week stress reduction mindfulness class. And it's wonderful because it really brings people together at a different level. So, sometimes patients find a deeper connection with their partner through this process, you know?

Host: Creativity and problem-solving and all of that, that can draw people together. But I'm thinking also about the extended circle, so friends and extended family members. How can they be more inclusive and helpful to somebody with MS?

Dr. Ann Cabot: Great question. So, we always talk about building your support network. So, it really depends on who you put in your network. So, I think this comes down to the patient saying, "Okay, who do I want in my network?" Some patients are very private and don't want anyone to know they have MS, right? And then, other people are really confident and comfortable sharing that kind of information.

So, if you have one primary partner that is helping you, they can help you build your care network and who you're comfortable with. Some people really tap into the whole thing. They might have a community, They might use the MS support groups. They might use respite care. They might use all kinds of things to just help build the network, family and friends and all that. But I think the important thing is sharing the load if it becomes burdensome and giving people permission to talk about the MS, "Let me learn more about it. Tell me what that's like." You know, as a care partner, if a patient says, "I'm exhausted," and you say, "Oh yeah, I'm tired too," that's not helpful actually. You may want to dig in deeper and say, "Tell me what that feels like for you" instead. You know, those kind of words acknowledge that this is different type of fatigue than just "I didn't sleep well." So yeah, asking the patient more probing questions and then saying, "What are we going to do about it?" Not just stopping there, make sure you take it to the next step.

Host: Right. When it comes to going to medical appointments and especially making any kind of healthcare decision, how can a caregiver best advocate for their loved one?

Dr. Ann Cabot: Yeah, I agree. Like, like what you said, coming to appointments is step number one. If you're not able to come to the appointment, it's okay to write like a list of concerns and have them bring it with them. There are some exceptional resources out there for care partners.

the MS Foundation has a whole booklet called Care for the Caregiver, and then Caring for Someone with MS, the MS Society. I know the MS International Foundation also focuses on these topics. And I think that goes to show you how important it is for the caregiver to stay involved, to stay positive, but also to take care of themselves, and be realistic about what they can do. It also is important how do we talk to the kids about this diagnosis? How do I tell my parents about this diagnosis? You know, there's a lot of information and resources in there. When in doubt, reach out to your neurologist and your primary care provider. It's a great place to start. And then, they can help you get on your way with resources, because there are a lot of resources out there, but sometimes it's just a matter of trying to find them.

Host: Yeah. And I would imagine that they can lead you to support groups, communities that are specifically for caregivers and family members, right?

Dr. Ann Cabot: Yup.

Host: Great. Well, Dr. Cabot, this is once again an incredibly valuable conversation for anybody who's supporting somebody with MS. So, thank you.

Dr. Ann Cabot: You're welcome.

Host: That was Dr. Ann Cabot, a neurologist at Elliot Health System. To learn more about MS Care and family support resources at Elliot Health System, visit elliothospital.org and search neurological specialties. If you are supporting someone with MS, please share this episode with others who might benefit from these insights. And thank you for listening.