How To Create a Care Plan: Five Essential Tips / Alzheimer’s and Other Dementias

This is the Whole Care Network. Music Helping you tell your story one podcast at a time. Content presented in the following podcast is for information purposes only. Views and opinions expressed in this podcast are solely those of the host and guest and may not represent the views and opinions of the Whole Care Network. Always consult with your physician for any medical advice and always consult with your attorney for any legal advice. And thank you for listening to the Whole Care Network. Music Are you prepared for others to take care of your loved one? Do you have a care plan? In this episode, Sue and I are talking with Amanda Lukoff, co-founder and CEO of Ella Plan about what is a care plan and how to create one. We're sharing five tips. Music Welcome. We are Sue Ryan and Nancy Treister. This podcast brings our years of experience in a variety of family caregiving roles to prepare you to navigate your caregiving journey. We're sharing our personal experiences, not medical advice. And because it's our passion to support you on your journey, we believe no topic is on limits. Let's get started. Music Amanda, welcome. We are so glad you're here and sharing with us what you've created as far as the care plan. And I have learned in my caregiving journeys the importance of having one. So thank you very much. And what we learned about your journey here is that it was really influenced by your brother Liam's autism. And your background is actually as an attorney. Would you share a little bit more about your story and how it brought you here to what you're doing and the importance of a care plan? Yes, absolutely. Thank you for having me, Sue and Nancy, thrilled to be here. So my brother Liam is 27. He has autism. He is my North Star. And he is the reason for just about everything I've done in my career, starting with going to law school for special education law many months ago. Ever since then, I've done all of my volunteer work has been related to autism and, you know, organizations that support people like Liam and our family. My current business, Ella plan was born out of a need I found in my own family, observing my parents caregiving journey as you know, being 11 years older than Liam, I've been really able to have a front and receive to their experiences caregivers and understand the sort of challenges and triumphs that have come and continue to come with life with them. And so how do we capture the information that lives in my parents brain so that I can take care of Liam well in the far future. And people that take care of Liam today can step in and know him. And when we think about a care plan and we go into the five tips, I want people to think about this is about the care recipient. It's about Liam, but it's for the caregiver. And so the goal of a care plan is to really unload some of the burden and overwhelm that comes with life as a caregiver and allow others to know your loved one the way you do. I like the way that you have highlighted that part of it because that's really what it is that in my experiences. The, the care plan was valuable because something could have happened to me and I would want someone else who was going to come in the home to be able to make it as easy for them. So the more information I had in all of the different ways that would help someone else and also help remind me it was very valuable. So this is such a valuable part of our journey, whether we have it on pieces of paper or whether we've got it beautifully digitally preserved the way that that you've got it. That leads us to tip one, which is let's start with the basics of a care plan. So what the basics we're talking about what let's me leave the house today, right? So if you need to step out for even just 30 minutes, right? And yes, we could be dealing with a situation where an emergency happens and you're not available to take care of your loved one. But even if you just want to run to the grocery store for 30 minutes or go to the gym for 30 minutes, what allows you to get that respite and bring somebody else in? We're talking about things like emergency contacts, medications, maybe high level meal preferences, allergies that would need to be noted for short term care and medical conditions that are relevant for that period. Right. So just kind of those quick nuggets of information that let you leave the house for 30 minutes, which is which is very, very helpful. In my first journey with a formalized care plan, I created a big notebook that I kept on the kitchen counter. And I had it all divided out by different topics and things like that. And I even had a flashlight in case because where I'm South Florida if here's a storm. But it had the different kinds of information and I also had the digital version because I had printed this out from things that I had family members have access to. So the start was there for where we had it, but there's more than just the basics. There's a lot of other things that we want to do with it. So let's talk about tip two, which is a huge part of the importance of having a care plan is so that we can outline what their daily routine is and tips to help whoever's coming into the home be able to give the best level of care for our loved one. Yes. So thinking about the daily routines and preferences. This is where I think about if someone stepped into your shoes for a day or maybe even a week so you can take a vacation. How would they know how to make your loved one feel safe, understood and comfortable and what information can you leave to make you feel safe, understood and comfortable leaving. Right. And so this is where we talk about the who right so there's the medical conditions that's important the diagnosis that's important but also you know Liam is more than his autism right he I want people to know that he loves weird Al and SNL and Stephen King and hey take ups and tattoos right what are the. What are the. What are the things that make Liam Liam and yes his OCD triggers are important right we need to understand behavioral patterns and meal preferences and daily structure. What's the bedtime routine what's the wake up routine. What happens at 1135 every day right what are these routines that help your loved one stay. Balanced right and stable or you know you deal with Alzheimer's and dementia that that's so important right these routines are critical for care. So how can we convey that include that and then triggers both positive and negative what what what songs might bring them back right things like that. Yes, I can certainly relate to the songs in one of our other podcast episodes I shared a little bit about this but when my husband 100% Irish and before he was diagnosed there wasn't an Irish song that he did anything other than just just sing with great joy. After he was diagnosed if they played O'Danny boy he would immediately break out in uncontrollable sobs he was just hysterical we had no way of figuring out what that was however. If you played when Irish eyes are smiling or take me out to the ball game he was fine he was happy it was it was great so trigger don't play that song do play these and those are the kinds of things that are just it may seem small to someone but it's huge when we're a caregiver. Yeah, I think it's those things that we might take for granted as caregivers right like what are what are those details and those nuances of our people that are so obvious and intrinsic to us because we live with them and love them, but that we can easily share what the right kind of care plan thinking about those nuances. One of the really really really valuable parts about a care plan especially when someone else is coming into our home is what do you do in the case of an emergency which is tip three documenting for caregivers what do you do in case of an emergency. This is where thinking about how can we calmly and clearly handle a crisis. We can all agree that more than any other scenario we talk about today the vacations the gym, the grocery shopping right these crisis situations are paramount and and are the moments that require the greatest clarity and so having the information teed up in your care plan for what happens in these moments is is so important. Your care plan should be clear on what you consider an emergency right your emergency is different from from mine right Liam could be somebody who has an episode that to an outsider could look like an emergency every day, but we know that that just Liam being Liam on a Tuesday right so there are these nuances of what you consider an emergency. And then within that when do you call 911 when do you call hospice is there another person that should be called instead before an ambulance comes. What's that process what's the what's the phone tree of people that were calling and contacting. Are there any special instructions for EMR's excuse me for EMTs or ER staff and where are the key documents kept where the medical documents will get to that a little bit next but we're talking about a crisis situation. What documents are important to you to have handy so others can easily access them and that information. And you know I learned this one the hard way, because we had to have an emergency that you know we thought we were completely prepared for emergencies let's put it that way. My in-laws both 90 living three miles away they don't have a car. I take them to their doctors took them to their doctor's appointments to the grocery store, you know did their grocery shopping for him and everything. But my mother in law was the person who stayed with my father in law who had Alzheimer's. She was the at home person all the time, even though we had part time caregivers who came in she was she was the person who stayed at home, and she was mentally still is in very good shape has some mobility challenges, but mentally in very good shape and still can get around. And so, all of our trips to the emergency room for the past couple of years had been because of him. So we're in pretty good shape going to the emergency room when something happens to my father in law because if he has to be admitted to the hospital, we can stay with him and deal with his situation because she's perfectly fine at home by herself. Until she wasn't. So one day she falls and it's two o'clock in the morning. She tells the mts when they get there to call me. They call me and the first thing I say is you can't leave you can't take her to the hospital in the ambulance and leave him at home alone because he's got dementia. So, all of a sudden we have an incompletely new situation like what are we going to do. I said you either need to stay there until I get there and can take him or you have to take him in the ambulance with you because he's mid-stage dementia can't stay home by himself. So, a whole new situation two o'clock in the morning trying to get my brother in law my sister in law who's going to take care of Pat because Pat doesn't need to stay in the hospital they want to admit her, but there's no one to take care of him and somebody needs to be with her as well so just a complete debacle. So, lesson learned the hard way when lesson learned. Exactly. So, we got it all sorted out and you know three o'clock in the morning and enough sorted out let's put it that way. And I came home and said, oh my goodness, I thought we were in good shape. But we're not. So, I created a care plan for my mother in law. I care prim for my father in law. I care plan for my husband. I care plan for my mother who is in perfectly good shape lives in an independent living community but she you get a care plan to everybody gets a care plan you get a care plan you get a pair of airplane everybody gets a care plan because we just really were, you know, in bad shape. So, I did put all those care plans out on a Google drive gave access to all the people you know a handful of people that would be the ones most likely to need them. And then printed a copy put them in the purple folders at everyone's house there's in the purple folder, you know a care plan, in case of emergency as well. But, you know, lesson learned when you're putting together when you're when you're thinking through what are we going to do in an emergency, you've got to write all this down including who to contact what their telephone numbers are where the documents are everything that really leads us into tip four, which is collect key contacts and documents and have them someplace so so people can find them. And this is we're talking about, you know, if there's an unexpected situation like you just outlined Nancy, or you just have to run the door quickly and you know, you want everything in one place or for your own sanity you just know that it's there for whatever reason that comes up right. How would people know how to find the important documents and we're talking about things like insurance cars healthcare directives PoA is guardianship forms. And not just for somebody else like I said but can you easily find these things right. You know, like, I'd like to consider myself pretty organized but I went to the doctor the other day for my, my son and I had the other sons insurance guard but not this one. And fortunately there were one number off and I knew that so it was fine but like, you know, when you're dealing with caregiving, it's overwhelming and you need to keep yourself organized so that you don't feel more overwhelmed than you need to. I can share one story here from my own family. Years ago, I was visiting my parents and my brother was still living at home at the time. I was home with my then newborn son so not normal for me to be at home I was no longer living at home then. And my brother had an incident that required the police and ambulance to come to the house. Liam had to go to the hospital for psychiatric evaluation and my mom went with him in the ambulance my dad followed by car. And from the ambulance my mom is calling and texting me with things like on the second shelf by the phone as a pink folder with a guardianship document. Take a picture and send it to me. Okay, now go to my desk, sit in the desk and the third drawer down as a yellow folder with his medication list. Take a picture text it to me. Okay, there's a new medication this week that we got four days ago I haven't updated the list yet. Can you go to the pantry is a big bit on the floor. Find the one that looks most recent. Get a picture and text it to me. Right. I was home and I could send her these but the obvious question is what if I wasn't home. And sure, could my dad have turned the car around and gone back to the house and done this for my mom. Yes, but he's not thinking about that he wants to be with his wife and son in a moment of crisis when you know this was not a regular occurrence for us this was really traumatic for our family and for most of all for Liam. And so getting this information at your fingertips so that in a moment of crisis or in a caregiving moment where you're running to the hospital or doctors appointment it's just it's on your phone it's it's handy right. And I think that even if my dad could have gone home I don't think he would have been able to find the papers either right. And after that I said to my mom you know it's great that you know where all these things are, but now we're talking about three different locations in the house for three forms all of which relate to his care. How can we streamline this and make it easier for you to find it for me to find it for dad to find it and everything else. So I think it's really important and like how also how do we make it easier to keep things up to date like the medication list right. When would you have added that new medication to the list. How often are you doing that. Those are such valuable tips and I know in our journey part of the reason that I created the first care plan is that if something happened to me. Right. I wanted to make sure whoever came into the home was in the best position to be able to provide the best levels of care. I mean I had done the obvious things I had my husband registered with the police and EMT so they knew he had a dementia and they knew tips and things about it. I had a file of life on the front door I had a key on the outside of the house that only the EMTs had the code to so they could get in so they didn't have to break into the home. But the documents that I had were for them to then be able to get all the different kinds of information they would need and then if someone else was going to to come in to help care for him if it's something that happened to me. I had a list for example we had a code word and I had one word that I would text to one member of the family and they would know to call all these other family members and let them know that something was going on. I had a list of different people who could come somebody could do an hour somebody could do a half a day but they all knew who each other was. So what we were doing is making it as easy as possible for people to have that. But again, while I had a Google Drive folder and all those things, and when we can start anywhere I mean those were were great at the time, the fewer touches we have and and the easier it is to keep it updated, the easier it's going to be and it's always going to be a work in progress. And I think that that's just such a valuable thing to start thinking about it and being intentional about it and the things that you're doing to bring the care plan together are so that we're able to provide the best level of care for our loved one, and also for those other people who may be caring for them, if we can't care for them and so that takes us to tip five, which is keeping everything accessible and current. So here we're asking a question. Do I have a system that is as dynamic as the needs of my loved one and the ever changing piles of documents and information. Amanda, that was so powerful. Would you be so kind as to just say that one more time. Absolutely. Do I have a system that is as dynamic as the needs of my loved one and the ever changing piles of documents and information. And I think the dynamic piece is really important to you and you touched on this in what you just said earlier. We as caregivers don't want to think very much about other people having to cover for us. Right. It's a lot easier. I think easier is a relative word. It's a lot easier to do it ourselves, right, because we know how to do it. The fact is you need time away. Crisis can happen. And you may be pulled away even when you don't want to be. If you ask my mom, her solution to this is she's going to live one day longer than my brother. Right. Because no one can take care of. Yeah. Right. Wouldn't that be lovely. Right. This is, I think, sort of this cross that caregivers there. And so the dynamic piece of it for me comes into how can I allow caregivers to have more freedom. And the answer is a dynamic care plan. Right. And so your care plan should be a living breathing thing. It should evolve. It should be, you know, updated accessible by everyone that needs that information whenever they need it, whether it's a binder on your kitchen counter or on your nightstand next to a flashlight like Sue or a Google Doc shared with family or a platform like I will plan a digital. The most important thing is to keep it updated as things change. The care plan is only as valuable as the information you put into it. I'll say that one more time because I think it's so important. The care plan is only as valuable as the information you put into it. And you know, that's the hard part. In addition to creating a care plan. And by the way, we talked about creating a care plan. Amanda and Sue have both said this. If it's, you know, if it's just the basics, get the basics written down. Start somewhere. Right. Yes. So, you know, you can't just count the basics and at least start with that. But you do want to make sure that you have some sort of regular pattern to keep it updated if you're keeping it manually or even on a Google Drive like I was. So, you know, you're not going to be able to go out and keep it updated when medications change preferences change. There is a lot to do to keep it updated. And I think like I want to hear a little bit more about L a plan, which is using a system to help you keep it updated so that you're keeping it in a more dynamic format. So, can you tell us a little bit about that? Sure. So our goal in building L a plan was to create a dynamic care plan. That was the number one goal. How do we create a dynamic care plan that is accessible and easy to update and more importantly, easy to call upon the information in that care plan. So step one is to put the information somewhere. But step two is how do I get it out? Right. How do I easily get that information back to me or another caregiver. And so with L a plan, our goal is to enable caregivers to get that information in as few touches as possible and put it in as few places as possible. So we're, you know, kind of a one stop shop for all the information, all the documents, all the contacts, all the routines, you know, all the members you can permission people into the plan that need to have access to it. You can share with contacts, you can share the full care plan if needed. Or my favorite part is we use AI in a super safe way to basically call upon smaller nuggets of information. So maybe if I'm, you know, a respite caregiver for 30 minutes, I just need to know what mom might like for a snack. So I can say, Hey, Ellie, what kind of snack should I give mom, you know, or I'm scrambling to fill out insurance forms and I forgot mom's blood type. Hey, Ellie, what's mom's blood type. Right. You know, big, there are bigger things too, like you're preparing for a benefits audit or something like that. We can actually call upon the documents that are in your L a plan. And so it's, it's really about encouraging caregivers to put the information in one place, but then support them further by allowing them to utilize that information in the ways that matter most and caring for and knowing our loved ones as best as possible we can. You can learn more at www.ella plan.com that's E L E P L A N dot com and Sue and Nancy know this but I'm an open door and welcome any emails from your community. My email address is Amanda at L a plan.com a M a N D a act E L E P L a N dot com. And I'm happy to chat about anything. I know we've covered a lot today and I just if I can leave you with one thing. If all you do today is write down three things if you write down an emergency contact or don't play Danny boy for dad or or no tattoos for Liam right. Whatever it is you've you've done a great job and you have to start somewhere like Nancy said I have a note on my post it just start just start whether you know whatever system works for you and makes you feel empowered and supported as a caregiver start just start. Amanda thank you so very much. One of the things that Nancy and I say so often and it really fits here is we're all on this journey together. What we're doing with the care plan is looking at what's the most valuable support for our care receiver. What's the most valuable support for us and what's the most valuable support for the care team supporting all of us. And again to your point whether we start off on a piece of paper or we've got this wonderful beautiful digital plan. However we choose to do it doing it helps everyone and it's just really really helpful. So thank you very much for your investment of time and for all the work that you're doing to support us in the community. Thank you so. So let's summarize. Thank you. Thank you Amanda for spending time today with us and helping us understand what's in a care plan why we need a care plan and how to create a care plan. All of that is critical to just getting one started you know understanding what we're even talking about here when you hear the word care plan sometimes you're like I don't even I don't even know where to start. So today we talked about five tips. We talked about tip number one which will start with the basics and what those were tip number two outline preferences and daily routines particularly when you have someone with dementia that's really critical tip three document what to do in emergency. Don't get caught flat footed like Nancy tip four collect key contacts and documents and tip five keep everything accessible and current and easy ways to do that. Now if you have tips about what to put in a care plan or how to create a care plan please share those on our Facebook page or Instagram page the links are in the show notes. If you like this podcast please share it please follow it subscribe to it. We really really appreciate it. We'll make sure that all the information on how to get to Ellie plan and how to get to Amanda are in the show notes as well. We're all on this journey together. Yes we are. Thank you guys.