Age Old Questions: The Aging Parents Podcast

09. Tools to help you track and organize your aging parent's medical information

• Ellen Koebel • Episode 9

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Managing aging parents' medical information can be an overwhelming responsibility. That's why I invited Julie Crenshaw, a home health physical therapist, to share her expertise and insights on how to navigate this daunting task. Julie has created two helpful resources, Keep Up with Your Parent's Doctors All in One and Tracking Your Parent's Vital Signs, to help caregivers stay organized and reduce stress.

In our conversation, Julie offers practical tips on how to effectively organize information about all your parents' healthcare providers, make the most of medical appointments, manage medications, and keep track of vital signs. She also shares equipment recommendations to ensure you have the right tools without wading through a million Amazon reviews. With Julie's experience and guidance, you'll feel more confident and prepared as you support your aging parents' healthcare needs.

Visit Julie's website: https://www.helpthecaregiver.com/

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Speaker 1:

One of the main stressors that I've seen the adult children of aging parents struggle with is trying to help manage and organize all of their parents' medical information. Oftentimes these family members are thrown into the role of keeping track of all of their parents' doctors and medications and appointments and follow-up tests and special instructions. It can be overwhelming. If that sounds familiar, i recently found some great tools to help you stay organized and reduce some of that stress and I'd like to share them with you today. Welcome to Age Old Questions the Aging Parents podcast. Here we talk about navigating the role of supporting aging parents.

Speaker 1:

My name is Ellen Kobel and I've worked in the homes of older adults and their families for almost a decade as a home health physical therapist. I've had so many of the adult children I work with tell me they feel alone, uncertain and unprepared to take on the role of supporting their aging parents. I know taking on this role can make you feel frustrated, guilty, worried and alone. I created this podcast to share stories and provide guidance so you'll feel more connected, more prepared and less stressed. We have big, complicated lives to live and this is part of the whole thing. I want to empower and inspire you to enjoy to laugh, to ponder, to grieve and to really engage in this part of life. Thanks for listening.

Speaker 1:

Today I'm talking with Julie Crenshaw, who is also a home health physical therapist.

Speaker 1:

She saw how difficult it can be to help manage and organize your parents' medical information. between keeping track of all the different doctors your parent might see, all the different medications, special instructions and follow-up appointments, she decided to create some log books specifically to help children of aging parents. I recently found her on Instagram and I saw the log books she had created and I was really impressed with them. She has a log book called Keep Up with Your Parents' Doctors All in One Place, and another log book called Tracking Your Parents' Vital Signs. These are two responsibilities that are often given to the children of aging parents, but without any training or instructions. So Julie made these simple, easy to understand log books to provide some of that training and instruction, as well as being the actual tool to use to track and organize it all. In this episode, i talked with Julie about her books and her practical tips for keeping track of all this medical information. Here's our conversation. Hi, julie, thank you so much for joining me today.

Speaker 2:

I am so excited to be here. I love how much we have in common. This is going to be a great session.

Speaker 1:

Yes, yeah. So you, like me, are a home health physical therapist. Tell me a little bit about how you got into that and, yeah, how long have you been doing home health physical therapy?

Speaker 2:

I always had an idea in grad school that I wanted to do home health. I think it just kind of calls to you a little bit and they say you either love it or hate it and I just I don't know. I liked the idea of being able to help people in their home because when I worked in outpatient you would have somebody say something to you like I'm having trouble getting in and out of my bed, and then you'd go okay, well, can you kind of explain what your bedroom looks like and about how tall is your bed and and they're like trying to measure it against their hip, and you know it was also theoretical and I loved the idea of working in somebody's home and them saying I can't get in and out of my bed very easily and just being able to say, well, let's go back to your bedroom and work on it, and you know just that practical application and the problem solving. And I like to work independently. And once I got into it there were so many more things to love.

Speaker 2:

You just get to feel like your family with your patients. You really get to know them well. You get to spend more time with them than you do in other settings because you're seeing them for months and months and for some of them years and years, and you just build such a special relationship. So home health is just I don't know it's a good fit for me. I've been doing it for seven years at this point and I don't know that I could work in any other setting at this point. I'm just so used to it.

Speaker 1:

Yeah, i feel like you just said, like verbatim, exactly what I say. I just I really love the practical aspect of saying well, let's work on the stairs. How about these stairs right here, the ones that you need in order to get to the bathroom? Yeah, excellent. Well, so you also have a YouTube channel and some resources that you've created to help family members of aging parents, especially as they are having more health difficulties, having a lot of medical problems. So go ahead and tell me just a little bit about your YouTube channel and the other resources that you have.

Speaker 2:

Yeah, so I'm the founder of Help the Caregiver and I founded Help the Caregiver in order to provide resources and support to caregivers in a way that I didn't see, and I love that you're doing that too. It's kind of like a kindred spirit moment. You saw the same need and you're also working towards that same goal of just providing education and support and community and sense of camaraderie a little bit, that you're not alone having to do this caregiving journey. But one thing that I've been saying a lot is caregivers a lot of times will get thrown into this role where they're basically having to act like a nurse. They're having to do a lot of nursing type care, but they never got the training on how to do it. So it's a terrible position to be in.

Speaker 2:

for a lot of people It's very overwhelming, and so I want to help to reduce that anxiety and overwhelm by giving practical advice. and you know, like we were talking about before we started recording, you kind of have the same conversations over and over and you realize, gosh, there's so many people that need to hear this and that need just some of its basics, some of its more advanced, but all of it needs to be out there. So that's why I founded Help the Caregiver in the first place, and then the logbooks that I've created are some of that practical application piece of getting and staying organized and having better communication with your doctors is also a running theme of the resources that I provide is how do you have more effective conversations with the healthcare providers that are helping you to care for your loved one, and so that's what these two logbooks and some other books I have coming down the pike are all aimed at.

Speaker 1:

Excellent. So I know the first book that you have is all about keeping track of medical information. So as a home health PT, when I go out to see a new patient I bring our whole home health binder, kind of our folder, with all of our information and it's got our privacy practices and what to expect when you're receiving home health. It's lots of pages. I circle our phone number on the front and add it to the giant stack of papers that they have from hospital discharge and the information from the doctor's visit after being in the hospital and the specialist visits And it just is so much paperwork that they have that they're trying to keep organized. Tell me a little bit about kind of the challenge of trying to keep all of the medical information organized.

Speaker 2:

Yeah, it's completely overwhelming And I've seen it too. I've seen the stacks and stacks of folders and discharge papers and information packets that people are given And it's well meaning, but most people don't have the time to siphon through all of that to find what's actually useful to them And a lot of it, you know, seems useless and you're just thumbing through it and you just give up. So the resource that I have, that's keeping up with your parents, doctors all in one, is meant to be kind of the master list of all the information that you actually need And it starts with the patient information in the front that you're going to have to give to every single office you visit, with insurance information, emergency contact, all of that. But the other thing that I saw so much, that I do see so much in home health is people not being able to find the basic information about their doctors because either it's on 25 different sheets of paper or maybe they're trying to stay organized by keeping one folder here and one folder there and another folder here, and and then one time they forget and they just put stuff on their phone, and I've followed caregivers around their house for 15 minutes once trying to help them find a phone number for a doctor, or to even find the name of the doctor. Which doctor is it that did the surgery? They're like I don't know. And we spend 20 minutes going through folders trying to figure out which doctor just did the surgery on this patient, because it was, you know, emergent maybe.

Speaker 2:

And so this lets you put everything in one place All of the names, the nurses names, the directions, the address, the phone numbers, the special information. Like this office closes at noon on Fridays or they take a lunch break from 12 to 2 every day, or you have to call the nurses line before 3 to get a call back, because every doctor has special, you know, accommodations with their office And there's places in that same spot to put special instructions from the doctor related to the care that that doctor is giving. So there's a lot of patients that might have blood pressure medication but they're only supposed to take it if their blood pressure is over 140 on the top. And you can write that information right there with the same, all of that doctor's information and all of their special instructions in one place, so you're not having to search through 25 things to find it. And then I wanted to give people ample space to record the visits that they go to.

Speaker 2:

Sometimes there's a ton of visits to keep up with and it's hard to remember which doctor told you what. And it can be easy to, you know, get such a whirlwind getting everybody ready and out the door and into the office and into the waiting room, and then they call your name and you're hustle and bustle And then the doctor flies in the room and you ask three questions and they fly back out of the room and you get home and you're like, oh, i didn't even ask these half the things I wanted to ask. So I organized the inside for you to be able to keep up with all of the doctor's appointments, but I even went so far as to put a checklist in the upper corner of each visit for you so that before you leave that office you know for sure you've maxed out that visit. So you know on, that checklist includes things like does this office have the most up to date medication list? Have I asked all the questions that I meant to ask? Do I understand all of the instructions that I was given? Could I explain to somebody else everything that I was told in this visit today, because I just see that.

Speaker 2:

So much in home health, where I'll say, well, what did the doctor say about this? And the person's like, uh, i don't remember, or well, i was kind of confused and I didn't want to ask, or well, they told me this, but I don't really know what that means And I want people to feel empowered to ask those questions and to keep that doctor in the room until they have all their questions answered, and I want them to leave and feel like they got everything out of that visit they needed. So you know, this is it's meant to be one comprehensive resource that's portable enough. You can take it with you everywhere, but that way, every time you need to know something, you just go to one place and it's right there.

Speaker 1:

Yeah, i think it's something that I do in my own doctor's office or my own doctor's appointments, without reading it is. I kind of just get into nodding mode, yes, yes, where I'm like, oh, yep, yep, yep, and then I get home and then I start actually thinking about you know what was said, right? And then I'm like, oh, i guess now I'm curious about this. I didn't really ask this follow up or I didn't quite understand this because I was I was more like playing my role of what you do when you're in a doctor's visit. So I even I love the idea of having the logbook to keep track of that. Just like you said the question of do I understand? for me, at least, when I write something down, then that kind of forces me to know if I understand it or not. So even just having it in the book, going through the process of putting it in there, probably makes you realize when you have questions or just helps you remember what the instructions are.

Speaker 2:

Yes, And I do actually have a list of, you know, suggested questions in the book too, because in some ways it's like I don't even know what to ask. You know, i see I see that with people out there like I don't even know what to ask or I just assume the doctor's going to tell me what I need to know. But the doctor can't read your mind. And I do spend a lot of time trying to help people understand that doctors are just people, you know. They have limitations. They can't read your mind, they can't know something if you don't tell them. They don't just magically know that somebody was in the hospital If nobody informs them that that person was in the hospital. They can't know that you've had a medication changed from a different doctor If you don't tell them.

Speaker 2:

You know and really trying to understand that you need to help your doctor, help you, you know, by communicating things and not just assuming that they know everything that you need to know. And I do encourage people a lot to spend a few days before their appointments writing down questions. So if you know you've got an appointment coming up on Thursday, then from the beginning of that week kind of ask yourself what questions do I want to make sure and ask at that appointment, and I have room in the notebook for you to write them down, so throughout the week you can write those questions right there And then when you get to the appointment you know that you're, you know you're going to remember to ask everything you meant to ask, and then there's also places to write the answers so that you'll have all the questions and answers in one place Sounds good, you talked a little bit about that medication list.

Speaker 1:

You know, part of what we do in home health is we go through and we make sure that we've got up to date medication list. We make sure that the actual medications that are in the house are the same that are on the list, so that what someone is taking is actually what's on the medication list. And I find that there is often a lot of discrepancies. Yes, and there's. You know, sometimes we have really outdated information If they haven't been in the hospital recently, and then I'm working from a medication list that's maybe a couple of years old And there's been a lot of changes, maybe with a specialist that's not in the same organization where I work. And then you know, that's a little bit scary when all the different health care professionals might be working with different medications less. It's very scary, it's terrifying actually.

Speaker 2:

Yeah, you know so and I have seen some instances where you know again, health care professionals are people and they're just having to work based off the information they are given And if they're given outdated or incomplete information, they're doing the best they can but they're not going to be able to give the best or most appropriate care all the time. So you know, whether it's fair or not, it's the onus is on the patient or their caregiver to be the keeper of the master list of what are the updated medications. And I do have a free digital resource for people that's a medication list resource where they can keep this in a digital form so that they can easily update it and easily print off new copies. And I encourage people to always keep two copies on them, one for themselves and then one if there was ever an emergency, they can just hand that medication list to the EMTs and say these are their updated medications and know for sure that what you're giving is up to date.

Speaker 1:

Mm-hmm. What else do you recommend people keep track of as far as trying what information is important to keep together and to be able to provide to other doctors?

Speaker 2:

I have a second logbook that's called Track Your Parents Vital Signs, and the purpose of that book is to make sure that you're getting all that information in one place so that you have it with you, you know what's going on and you can show it to the doctors. And this is again kind of inspired by my work at Home Health too, because we do the same thing. We go in and we give them the big packet of information and there's always a Vital Signs sheet in there for us to take Vital Signs and record them and communicate that between each other. But one of the things that I realized in doing that is that I would have a lot of caregivers who were keeping their own Vital Signs in a different notebook on the days that we were not there. But a lot of times they didn't either know, they couldn't recognize when something was out of place or they didn't know what to do if it was out of place. So there's going to be a normal range for all of the different Vital Signs.

Speaker 2:

I would have patients sometimes that I would come in and look at their track and and go, oh my gosh, they're blood pressures through the roof. And the person's like, really, and I'm like, yeah, this is not okay. They've been in the 180s for like four days. This is bad. You know, this is emergency, we need to do something about this. And, as a health care worker, that was something I had to understand was that the caregivers did not necessarily know how to Recognize when something was An emergency versus well, it's not good, but we just need to call the doctor about it, versus no, it's fine. And so in my law book, i give a lot of educational information In that regard when is it an emergency and you need to call 911? Versus when is this something that it's not good and we need to keep an eye on it and we need to report it to the doctor, but it's not an emergency, but maybe you should call it a make an appointment for this week or next week, you know, versus Maybe we need to troubleshoot what's actually going on, because I've also seen crazy vital signs on a person Who's just sitting there, just ride his rain going. I feel fine, and you know there's some crazy number that's popping up and it's like, okay, well, hang on. Before we start getting jumpy, let's see if we can figure out how this happened or what's going on, and sometimes it was as simple as the batteries needed to be Changed in the device, or maybe it was just something where they Skipped a pill. You know we're like, oh no, your blood pressure is so high. And then you dig into it and find out Oh Well, you forgot to take your blood pressure pill this morning. That's why it's high. Take your pill, you'll be fine. We'll check it again in 30 minutes and in 30 minutes They're fine, you know. So it's.

Speaker 2:

It's also knowing how to figure out what might also be going on there, and I have a lot of that educational information in in that packet as well. So, as far as what to track, you know, in home health We're always going to be tracking blood pressure and oxygen and temperature, those sorts of basic vital signs. If the person has diabetes, they're probably going to be checking their blood sugar on a regular basis, maybe daily or maybe more than once a day. If they have heart failure or certain other diagnoses, they might be checking their weight every single day. And being able to understand why it's important to Take those you know measures frequently is something else that I work on, because if, if somebody doesn't understand why it's important to do it, they're much less likely to do it, and I'm the same way. So I try to make sure and educate people on why this is important and How to recognize when it's not right and what to do about it if it's not right, because simply just taking the vital signs and writing them down and having no idea what they mean is not helpful. And You know and the other thing too, coming back to your doctors are not just superhuman people who can just Know things a lot of times I've found that there are Issues between the vital signs that we as the home health team are getting in the patient's home and The vital signs that the doctor is getting in their office. And that's not because anybody is doing anything wrong, but there are other factors, like When the person's in their home, they're relaxed, they're not Taxed out from having spent all their energy to try to get to the office.

Speaker 2:

Some people have white coat syndrome, so their blood pressure is going to be a lot higher in the office than it is in the home.

Speaker 2:

So I have had a few patients of more than a few patients who have been prescribed blood pressure pills When they didn't really have blood pressure problems, but they would have a high reading in the office and then we get them at home And they are bottoming out because they're taking a blood pressure medication that they don't need And the doc with all the doctor has to go off of to make that decision is the reading in the office, unless you are tracking their vitals at home and you can show them no, no, no, no. Look, they've had normal blood pressure for months. There's never been a high reading. And then the doctor can go Oh, that's probably just white coat syndrome, i'm sure they're fine, you know. So the doctor can make a more informed decision about care and medication prescription and things like this if they can see, you know, this consistent set of readings instead of these one-offs that happen every three or six months when you come to visit.

Speaker 1:

Yeah, i had a patient recently. She had had a stroke and so she was on blood pressure medication, but she noticed that she was just feeling really tired and she took her vitals really regularly every morning and It was starting to get really low. She'd also lost quite a bit of weight since she had been in the hospital And so she was starting to have blood pressure readings with the top number in the 90s, and she noticed that she felt okay when she first woke up, but then, after she took her medication, she just started to feel tired and just really not good. Right, looks like maybe you're over medicated at this point. Why don't we give your doctor a call? and she called her doctor, and of course, the doctors are hearing about this for the first time.

Speaker 1:

Yes so they're. They're saying okay, well, maybe let's start monitoring this and we'll get you know, we'll see how it is in a couple of weeks. Well, she was able to say Actually, i have two weeks worth of numbers right here, i can send them over to you, and I think you know that really helped out her, but also the doctor, and being able to make a decision much more quickly with some real numbers that she knew were consistent And just was able to really advocate for herself.

Speaker 2:

I'm getting chills. I love that. I love that She was able to do that And that she knew to do that. That's fantastic Gold store.

Speaker 1:

Yeah, but and I think it goes back to what you were saying in the beginning also that caregivers are kind of thrown into this, into a role of being a nurse without any training And so having all of that information in one place where they don't need to remember what is too high, what is you know when? when do I call 911? When do I just call the doctor? having that written down someplace, mostly just for the stress of it, really relieving the stress, and I do have a place in there.

Speaker 2:

So I have a normative reference range chart of here's what's typically considered normal. But just off to the side of that is space that if your doctor is giving specific Different ranges that they want you kept in for their own reasons, you can write that there so that it's again, it's all in one place. So if I'm saying you know that it's normal to have a blood pressure that's 140, but maybe you have a certain heart issue and your doctor's like no, 115 the max, or you know I'm making these things up But I can put it there, and then you know for sure That this is what you're supposed to be doing, but then the other Educational information about you know when do you call the doctor is still going to apply, because it's when you're out of the range that they gave you. And I love that story that you just told because I explain that to patients all the time that Doctors treat numbers, they don't treat feelings.

Speaker 2:

Doctors do not like to prescribe or change medications based on the fact that you feel funny or you feel like you're not feeling That you feel funny or you feel tired or you feel weird. If you can, but if you can show them numbers, that's like Here's three weeks of my recent blood pressure and they're all high or they're all low, that doctor is gonna make a decision So fast it can make your head spin. So they they just need the data to support what's going on so they can feel confident in making those medication changes. But if it's just I don't know, i just feel weird, the doctors can be like, okay, well, if you feel weirder, i guess call me back. You know they're just not going to make moves based on that. So I love that you told that story excellent.

Speaker 1:

So then, what equipment do you recommend? That's, this is a question that I get a lot with my patients. They're wondering you should they buy a blood pressure cuff? What kind of blood pressure cuff Should they get? a pulse oximeter, or is that not important? I get that question a lot. So what? what equipment recommendations do you have?

Speaker 2:

I get the same questions a lot and I do have certain items that I've specifically recommended that are on my website if people want to go and look, and it's not because those items are the best one of their kind ever made and that nothing else will do. But sometimes the decision fatigue of spending three hours on Amazon trying to find the perfect blood pressure cup is just not how somebody is trying to spend their afternoon. So I've put things on there that I have vetted, that. I've read all the specs, i've read all the reviews. I know these products and they tick all the boxes for me.

Speaker 2:

There's some things that you would do well to spend a few extra dollars on and some things that the extra dollars are a total waste. So you know, a pole socks is a pole socks is a pole socks, i mean. You know they pretty. I mean there are some that are maybe a little bit more specific, but that's not something I would spend a lot of money on, because the way that is, i mean I could get into the details, but the way that it's reading is really just an estimation anyway.

Speaker 2:

But a blood pressure cuff can have a lot of features in it that can be helpful for somebody. It's not necessarily that one's a whole lot more accurate than the other, but having it more readable because it's using bigger numbers, having a memory on it so that you can go back and see what your previous readings were if you can't remember. And but not having so many options that you can't operate the thing You know. There's just a blood pressure cuffs.

Speaker 2:

I have a lot of specifics of what I do and don't like, but overall I always do tell people that I prefer an arm cuff over a wrist cuff. Wrist cuffs are better than not taking your blood pressure at all, but they're not as accurate as an arm cuff. Arm cuffs are typically a few dollars more expensive. Really it's not that much maybe five, maybe ten dollars more expensive, but it's very worth it in my opinion because it is going to be much more accurate. You don't necessarily to answer the question about blood, the pulse ox. You don't necessarily need that if you're not a person who has trouble with your oxygen levels, but if you do have trouble with breathing, if you are on oxygen, you absolutely need it and I would recommend that you keep it on your person at all times if you have breathing trouble or you're on oxygen. So some of that just depends on which diagnoses you have. And then, as far as a thermometer you know, the traditional advice, i guess, is that there's nothing that will beat an oral thermometer.

Speaker 2:

But working in home health, where I have a lot of patients that maybe have dental issues where they don't have enough teeth to be able to fully close their mouth around a thermometer, or they maybe they have advanced dementia and they're not able to follow the instructions to stick this under your tongue and fully close your mouth That in my experience, an oral thermometer is not always the most accurate reading if the person is not able to use it the way it was meant to be used.

Speaker 2:

So you know, it is the cheapest option and it is a fantastic option if the person can use it correctly, but if they can't, you know, a temporal thermometer is a great idea, but there's a lot of them out there that are not good. So you know, the one that I've recommended is one that I you wouldn't believe how long I spent looking through the thermometer. You know I'm really picky about what I think is or isn't going to do what needs to be done for somebody. But yeah, i have a lot of recommendations on my website. If you're just like, just add to cart and get it over with.

Speaker 2:

I don't want to think about this anymore. I just want to get what I need. Move on.

Speaker 1:

Yes, thank you so much for doing that All right. Well, i have taken a look at your the logbooks, and what I appreciate about them so much is how concise they are. They're just very straightforward. They have the information that you need, but not a lot of extra information that you have to sort through And when you've got the stacks and stacks of papers starting to pile up, that is so essential. So I think you just made something really, really useful for people.

Speaker 2:

Thank you, that's exactly what I was trying to do with this. I appreciate that.

Speaker 1:

Yeah, yeah. So tell people where they can find the find the logbooks and where they can find you.

Speaker 2:

Everything you can start with. My website is a great place to start, so it's helpthecaregivercom, and if you're looking for the recommended products, that's in the store page, and then I have. Well, the books are there too. So you kind of go to helpthecaregivercom forward slash store and you'll be able to see links to get the books and the other items that I've recommended. You can also find me on YouTube. At helpthecaregivercom. I give educational videos every week for help for caregivers, and then you can find me on all the socials at helpthecaregiver too.

Speaker 1:

Okay, that sounds excellent, julie. Well, thank you so much And it's been really great talking to you in person, sort of You know. I think we have so much in common and I'm sure that we will continue working together and coordinating in the future.

Speaker 2:

Yeah, absolutely. I love what you're doing. I love the resources that you're providing, and so I think we've got a lot of collab opportunity there to share resources and help each other's audiences. I love that. I'm so glad we connected. It's just kind of a happenstance, i think, that we found each other, but I'm so glad we did.

Speaker 1:

Yes, yeah, we'll have a wonderful rest of your evening and I hope people will take a look at the books that you have. Thank you, thank you, all right, okay, bye. Thanks for listening. If you're interested in getting Julie's logbooks, you can check out her website at helpthecaregivercom. I'll have a link to that in the show notes. If you find this podcast useful, there's now an option to support the show with a small donation. This helps me cover the cost of hosting and creating a podcast and helps me continue to make these episodes. You can find information about that in the show notes also. Thanks again for listening and I'll talk to you again soon.