Additional Resources Mentioned
Takeaways
Tip 1: Check your state of mind
Tip 2: Get prepared
Tip 3: Communicate at the appointment
Tip 4: Follow-up
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Full Episode Transcript
Nancy Treaster
Are you unsure how to get the most out of your care receiver’s doctor’s appointments? In this episode, Sue and I are talking with Dr. Paul Nussbaum, Chair of the MDR Champagne Center for Brain Health, about how to rethink your role in doctor’s visits. We’re sharing four tips.
Sue Ryan
Many of us leave our doctor’s appointments feeling intimidated and confused, instead of empowered and partnering in solutions for our care receiver.
Paul, we’re so glad you’re here with us today. Please share with us some more about your background and experience in this very important area.
Dr. Paul Nussbaum
Well, Susan and Nancy, first of all, thank you so much for having me on and and I celebrate your great work here with the Caregivers Journey. I’m Dr. Paul Nussbaum. I’m a neuropsychologist by training. I’m licensed in Florida and in Pennsylvania. And a million years ago I had a fascination with the human brain and was really involved in writing quite a bit on things you all know about called Alzheimer’s disease and different dementias. Paid a lot of attention to what it meant to be a caregiver for those individuals living with dementia. You know, I was publishing quite a bit, speaking in scientific presentations, giving keynotes. It was interesting. About 20, 25 years ago, it struck me I wasn’t kind of doing what I wanted to do. And so I decided I was really always interested in health. I didn’t leave the sort of the bucket of you know caring for people with Alzheimer’s and care providers, but I wanted to get out the message of how to keep our brains healthy and our bodies healthy to the general public. So taking that message I learned in the scientific world and to the dinner tables across the country so people could benefit.
I think you’re right. I think the visit to the doctor can be scary. It can be intimidating. It can be confusing. We’re kind of told we’re supposed to be in this position, a hierarchical position and the clinician’s up here and maybe I’m down here as the as a client and I want us to rethink that a little bit today in our podcast.
Nancy Treaster
Paul, I think one of the things that Sue and I have been most impressed with, which is why we ask you to be on this podcast with us, is you do have a very unique way of thinking about both the caregiver, which you’ve been, and the clinician. And it’s an amazing perspective that I think all of us can learn from.
So let’s get started.
Tell us about your first tip.
Dr. Paul Nussbaum
Yeah, so the first tip really for everyone listening today is to get in the proper state of mind. All right. So you may be the care provider, you’re caring for somebody who’s living with dementia. And what I want you to understand, I want you to understand this from Dr. Nussbaum right now, okay? You are actually the boss. Okay. If you were gonna come see me, I’m your employee. You’re paying me.
Okay, now think about that. Doesn’t the boss usually pay the employee? And so I want you, I want you to feel empowered. I want you to rethink where you are because you’re gonna be the one responsible for our next three steps, which is to convey, communicate, set-up a strategic plan with the doctor. But I want you to feel empowered that you need to get your mindset that you’re going into this meeting, you’re preparing by getting your mind straight first, that you’re in charge. Okay. And you do that in a civil way, in a friendly way. But I want you to kind of build and feel empowered to be confident. Because you’re actually the most knowledgeable person of this whole team. When we think about having a clinician in the room, it can be very helpful. But you know the most. Okay. And so you have much to offer and you got to steer. Okay.
So I want you to feel confident about that and I want you to understand that if something’s working or it’s not working, you need to be able to communicate that. All right, so it just begins step one, getting your mindset in terms of what your role is. It’s not passive. You’re steering the boat. Okay? So take some time to think through that because those are only words I’m throwing at you right now, but you need to make the shift in your head. And we’re it’s not your fault, we’re not taught that in the United States of America. We’re taught the clinicians, the doctors, the people in the white coats, Dr. Nussbaum, they’re in charge. No, okay, you’re in charge. And you need to help me kind of follow suit with what you need. That’s an important first step, guys.
Sue Ryan
That is a very important first step. And now that we’ve got that foundation, Paul, what would you say is the next thing for us to do?
Dr. Paul Nussbaum
Yeah, so we talk about tip number two, it’s getting prepared, right? How many times have you heard in your life ‘Preparation is 90% of the, you know, of the task’, all right? And so what’s the purpose of your visit? You’re getting ready to go see the doctor, all right? And you’re a care provider and you’re caring for someone who’s living with dementia. What’s the purpose of your visit? Okay, it’s not just I’ve got a Thursday meeting with Dr. Nussbaum at 2 p.m. No.
I want you to think through this, okay? Because you’re in charge. and you need to kind of think through what’s been working. You know, what is working? we’re real good about identifying what’s not working, but you know, you’ve done a really great job and you’ve discovered some things that are working. So we got to be able to identify that. All right. And I think the other thing is really kind of organizing this based on what’s working for the person who’s living with dementia.
What’s not working for the person living with dementia, but also for you, the care provider. And you guys all know this better than I do. We often forget to take care of ourselves when we’re in the seat, the position of being the care provider. That’s a big no-no, but it’s actually normal because that’s what we do. And then along the way, we lose our health and our ability to be the best care provider we can be. So what’s working, what’s not working, be able to articulate that, write that down.
Maybe it’s an issue of medication. Maybe it’s an issue of you identifying what’s triggering the person living with dementia to become agitated. Said another way. What are the things that trigger the person living with dementia to have a quality day, to bring some peace? It might, it doesn’t have to be anything grandiose. You may have noticed that you took a walk with your person living with dementia and my goodness, they calmed down. Or maybe there was some music playing. Or maybe you noticed that when we were in a place of worship, gosh, everything seemed to be just wonderful. Those are really important things for you to identify, to make note of, because you’ve got to communicate that information when you go into the doctor’s office. Now, how about you, the care provider? What’s working for you?
Where are you? And if you come see me, I’m not gonna let you get away with just telling me you’re fine. Because that’s not that’s not honest. Okay, that’s being a tough person, and I respect you for that. But I gotta really know I’m gonna look you right in the eyeball, and I gotta know where you are, and I gotta know what you need. Okay, what do you need to help you have a good day?
And that can be anything. I’ve heard everything, and it can be anything. It could be an ice cream cone. It could be a walk around the block. It could be, I need to do yoga. I need, I just, Dr. Nasbaum, I just need 20 minutes of quiet time. Terrific. Okay, now I know what that is. Now we can make that happen. But you’ve got to identify that. And you’ve also got to let me know, you know, hey, I’m losing sleep. I’m not eating.
I feel really guilty. I’ve been angry a lot, Dr. Nussbaum, and it’s not like me. And I feel really bad about it. And I don’t know what to do. That’s taking a deeper dive. That’s not just telling me you’re fine. Okay, now we can work with that. All right, and you’re being honest with yourself. And gosh, the first step to kind of healing is identifying that which needs healed, right?
So, you know, organizing that tip two, getting prepared around the person living with dementia, needs, triggers, what’s working, what’s not working, and then you, what’s working, what’s not working, and what’s going to work for you to feel better and to be stronger as a care provider. That’s an important tip.
That’s an important second tip, the second step in this in this journey.
Sue Ryan
Paul, one of the things you’re raising to our level of awareness that’s so important is you’re recognizing that there are two people in this. It is both the care receiver and the caregiver.
Nancy Treaster
And when Sue and I think about it, one of the things we always suggest to people is that you are a caregiver for two people. The person living with dementia, obviously. But then the second person is you. And so I love the fact that the needs of the caregiver should to be brought into the appointment as well.
Alright, so we are in the right state of mind. We got prepared. Now what?
Dr. Paul Nussbaum
Well, you know, we’re getting ready to go for that visit, aren’t we? We’re getting ready to go to the doctor. What are some things that are important for tip three, which is to communicate at the appointment? But one of the things is you might be able to communicate ahead of the appointment. You know, how do we do that? Well, today in our world, we’re able to communicate certainly by phone, by email. But there’s this thing called the portal now, right? We didn’t always have. I didn’t have it as a little boy. and we can communicate with our physician who’s gonna help us at this appointment ahead of time because there may be some things you need to communicate ahead of time because it’s so very true that some of the topics we’re gonna raise at this meeting that you’re driving, you’re in charge of, can be difficult. All right. And so trying to lay the groundwork, providing the context for the physician, the clinician ahead of time, can be helpful.
Now what are some things that may be difficult to talk about? Keeping in mind, we always want to make sure we don’t talk about the person living with dementia who’s in that meeting with you in third person language. We gotta always have respect and dignity. They’re first person, they’re right there with us. Okay. And I don’t. I don’t really care how far a doctor may say to you that the person doesn’t really process what’s going on, they do. They do.
Okay, it might be on an emotional level, but they do. but a couple of topics, at least in my experience as a doctor, that are difficult are behaviors like driving.
The care provider may not think that the person living with dementia should be driving. Fair. That needs to be talked about. And we all know that we all want independence. We don’t want to lose our independence. And so if I’m living with dementia and I’m driving and I’m being told I really shouldn’t be driving, that’s a difficult thing to hear.
And so I’m gonna have the typical reaction of resistance and maybe some anger. And so it’s a difficult conversation, but it needs to be had. And the reason it needs to be had is because as I communicate to folks who come to see me, the number one thing we have to focus in on, regardless, is safety. That’s it. It’s not love, it’s not guilt, it’s not any of those other things. It is safety. We want our person living with dementia to be safe. And in this case with driving, we want other people to be safe.
Communicating all of that at the appointment is critically important. Remember, you as the care provider are steering the ship. You need to communicate this because part of what we’re going to be creating in this meeting with a doctor is an action plan. Like you don’t want to leave the door until you have an action plan that we’re all on the same page. Here are the issues, here’s what’s worked, here what hasn’t worked. We’ve kind of gone over difficult topics.
And we’re leaving that room as a team with an action plan with steps that we’re going to follow. And we’re going to decide whether or not our action steps are helpful. We’re making progress. And you’re going to learn that once you leave the doctor’s office and go back home. Maintain your role as the care provider with the person who is living with dementia. But the important thing is we leave with a concrete action plan. Don’t leave the room until you have a concrete action plan.
Okay, you’re the boss. Demand it. Don’t leave without it. and if it’s not clear, make sure it’s clear. Don’t be afraid to say, hey, I don’t understand this. Or are you in agreement here? We’re all in agreement, right? How many times have you said next steps? What are our next steps? Okay, so you all leave the room understanding what the next steps are. That’s really the meat of it, right? That’s now we’re, you know, we’ve we’ve come through you know, having our minds straight.
I’m the boss. We’ve prepared. We’ve had our meeting now. We’ve communicated all the issues and we’re leaving with an action plan. You’re well on your way to creating a very health promoting journey for yourself as the care provider. And the person living with dementia is gonna benefit.
Sue Ryan
That’s huge. And I can share my own personal experience that having the portal, having access to get to the doctor before the appointment is so valuable because there were multiple times in my journeys where I let the doctor’s office know ahead of time an issue that would be valuable to be having a conversation about that I didn’t feel comfortable raising myself in the appointment. And in each case the doctor found a way to bring it up.
And it was handled so much more smoothly than it would have been otherwise. So thank you very, very much for that.
We’ve communicated during the appointment, and we’ve got the action plan as we leave, which is huge. So what’s important for us to do next?
Dr. Paul Nussbaum
Yeah, so we call this our fourth tip, which is follow-up. You’ve left the doctor’s office, you have your action plan, you’re now out in the real world where you live, and you’re keeping track of what’s working, what’s not working. You’re kind of keeping a scorecard, okay? And it’s okay to write things down. That’s terrific. All right, those are measures of outcome. And you know, sometimes you’re gonna need to communicate back to the clinician, the physician, prior to your next appointment.
And you should feel empowered to do that. Hey, you know, this isn’t working so well. We need to make an adjustment here. What do you think? The other thing I think we don’t think so frequently about is it’s okay to let the clinician know that things are going really well. You know, me as a doctor, I I even say to to folks who come see me, Hey, hey, if you don’t mind, would would you kind of let me know you know, how you’re doing? You know, it’s okay to let me know things are going well. I’m gonna get the calls where it’s not.
Nancy Treaster
Yeah. Well, also, if there’s new medication, like is it working or not working? I’m sure you want to know that.
Dr. Paul Nussbaum
Yeah. You all want to know good news too, right? So that’s really good because and that’s going to keep your clinician, your physician involved. Okay. So you know, kind of be intentional about keeping observations and keeping track of what’s working, what’s not working, identifying new triggers, maybe that we didn’t talk about at the meeting, the doctor’s meeting, maybe something else has come up. And really, what this does is it sets you up in preparation for your next scheduled appointment. Okay. You’re keeping a scorecard, you’re keeping data, you’re keeping a record of what’s been going on. Now remember, this is also true for you, the care provider. All right. You gotta keep a record for yourself as well. And if you need to get back in touch with a clinician about you, you know, it might be something as simple as, hey, Dr. Nussbaum, you know what? That was a really useful suggestion you made for me to kind of just find some time for myself. You know, I’m only getting 20 minutes a day. I’m kind of role-playing with you right now. but it’s been very helpful. So thank you. Or hey, Dr. Nussbaum, you know, things are going really well, but I just wanted you to know I’m not I’m not sleeping quite as much since we made these changes, you know. So you’re you’re you’re keeping in tune with yourself too.
Nobody else is gonna do that. You’ve got to do that for yourself and you’ve got to communicate it. Okay. So all of that, keeping tabs, keeping a record, keeping a journal, a diary, if you will, that’s all wonderful. And it really benefits clinicians, the doctors will love that. Okay. But I think it also benefits you too, because you can see kind of what’s working and what’s not. So that’s our that’s our follow-up. Okay. That’s you out there after the action plan’s been created and implemented, and you’re kind of keeping track of how it’s going because you’re gonna have to adjust based on this new information coming in.
Sue Ryan
Tthank you Paul. These tips have been incredibly valuable. And Nancy and I can see us both here nodding our heads continuously. So many of these tips you’re sharing are things I wish I had known in my journey.
What other comments would you have in closing?
Dr. Paul Nussbaum
Well, first of all, just a lot of admiration and respect for all the care providers out there. You know, there’s three times the number of care providers as there are pre people Living with dementia. That number’s gonna get bigger and bigger. A lot of the care providers are suffering depression and anxiety, sleep disorder, relationship issues, financial strain.
And, you know, my message would be that in this kind of podcast and Susan and Nancy and the work you’re doing at the Caregivers Journey. It’s so beneficial. And I want the caregivers to hear that you’re not alone. You know, you’re not alone. and you’re doing a great job. And I don’t want you to ever have a day where you feel like you’re not doing the best that you can. and so try to remember that message from me and from us today when it feels like, gosh, I’m just I’m not a very good caregiver because you are, and you’re leading with love. And I always say, lead with love and follow with kindness.
And that’s who you are. so that would be my message to say that you’re not alone and God bless you for what you’re doing. Someone is really counting on you and you’re there for them.
Nancy Treaster
Tell us how people can find you.
Dr. Paul Nussbaum
Yeah, so the best way is at our website which is www.mdr your brain health matters dot org. Www.mdryourbrainhealthmatters.org. You can go there and hit a subscription button and you’ll get a free newsletter. Nothing is being sought after in terms of money. You’ll get a free newsletter with a lot of information I provide on brain health, which can be really, really powerful for the care provider and for individuals trying to stay brain healthy.
Nancy Treaster
Well, I’m with Sue. I think the whole concept here is amazing because it’s not something that I ever even considered. That is how to actually get the most out of my doctor’s visits by being in charge of the doctor’s visits. What a novel idea and a mind shift, I think, that we can all take note of. Fantastic.
Also I think just letting people know that it’s okay to not just go to the doctor’s appointment and focus on what the person living with dementia needs, but also to bring what the person caring for the person needs and that combination of things is also a mindset change for most of us. I I don’t think I would have approach things that way. So you’re giving us permission to really make this a much better experience for both of us and get the most out of it
Sue Ryan
It’s truly a partnership. It becomes more of a partnership with the doctor, the caregiver, and the care receiver in the overall care. It takes all three to make the best partnership.
Nancy Treaster
And thank you for sharing four tips with us. Let’s review those.
Tip one.
Sue Ryan
Tip one is to check your state of mind.
Nancy Treaster
Tip two, get prepared. Not just about what your person is going on with your person living with dementia, but what’s going on with you as well. Get prepared before the visit.
Sue Ryan
Tip three is to communicate at the appointment.
Nancy Treaster
And don’t be scared of the hard things.
Nancy Treaster
And tip four is to follow up. Make sure you’re telling your doctor not just what’s in between visits, not just what might be going wrong, but also if something’s going right. That new medication’s actually working. Let them know that. Help them feel like they’re part of the team and stay engaged.
Now, if you have tips about how to make doctors’ visits as positive of an experience as possible, please share those on our Facebook page, our Instagram page. The links are in the podcast description. Every podcast has a matching blog, so just look at the number of this podcast, find the blog with the matching number on the CaregiversJourney.org webpage, and you’ll effectively see a written version of this podcast or what Sue and I like to say is we took the notes for you. So you didn’t have to take the notes.
If you like this podcast, please subscribe to it or follow it. And please share it with others.
Sue Ryan
We’re all on this journey together.
