Jennifer: Welcome to fading memories, a supportive podcast for those of us caring for a loved one with memory loss.
Jennifer: Good afternoon, everybody with me today is Kira Reginado. She is an Elder Care manager. She's going to talk to us about what an elder care manager can do for us. She served hundreds of older adults in their families in a variety of settings, including hospitals, residential care facilities, skilled nursing places, hospice. Alzheimer's, adult care programs, and meals on wheels. It's just a couple of little things there. Using two decades of experience, Kara uses her skills at her Elder Care management firm living ideas for elders which she opened in 2007, so thanks for being with us here.
Kira: You're welcome. Thank you.
Jennifer: I don't think I was aware of what an Elder Care manager could do. So why don't we start there? What exactly is that? What exactly do you do for everybody?
Kira: It is a fancy title. Actually, the real title is geriatric care manager, and it's actually been around for - I don't know forty years, and they used to call it case management or care management. People sort of knew it in a medical setting that you had like a medical caseworker, but then that became more on the private sector and people started doing it individually for families. And then Jewish children family services does it, catholic charities does it. There are a lot of nonprofits that do case management. We now call it care management and I'm in private practice but I think the easiest way to think about me, actually. Jennifer is as an elder care consultant, so families call me every day and just tell their stories. This is my situation, my dad has dementia. My mom's really looking after him and I wanna know how I can help them, or sometimes the spouse will call themselves.
It's rare, although it happens sometimes if the client will call you directly, but a lot of the people that we get are seeking information and they don't know how a care manager works, so what I do is I take that first phone call - it's called an intake. All of us do it. It's no charge. We hear what's going on with the family, and then like I did today, I set up a meeting to meet with the daughter and her mom, and that was to discuss the care needs of the dad. So we get to see each other in person, and I get to hear what their number one priorities are, and then usually if somebody has dementia, we will then go and meet the person who has dementia in the family. And then I'll get to see them in their own home environment, and that's really what separates a care manager in private practice from an agency because we get to go into the home.
A hospital caseworker is not going to go to your home and see how things are going, but I'm able to be there in person. I get to see that they have a dog, that they have piles of unopened mail that the medications aren't organized. So when I'm in the home doing that assessment, I'm using all of my spider-senses, and all of my senses to see what's going on. And then care managers go back to their office and write up what we call it Care Plan. I just call it actually an action plan because I think that makes more sense to people. So you the daughter have told me what you want. The moms told me what she wants and then I've seen the husband and I've seen the home environment and I marry all of what that input is with my own professional take. And I create a plan of action or a guide to give that family - here's what I think the issues are, here's what you told me is important to you, and here are the resources and what it cost to do, the things that we're recommending, and then usually I put down the action plan who's responsible for it. So let's say the family wants to get an estate plan done, so I'll put legal needs, do your estate plan, create powers of attorney, create a will, and then I'll put who's responsible for it. So might be me, and I might be brokering that first appointment and bringing the husband and wife down or the client down or I might just be giving them the phone number of the estate planning attorney in their area that I work with regularly that they make the appointment, and then I track the progress.
Jennifer: It sounds very helpful.
Kira: So we're like project managers. You know, we have like all of our subcontractors, a professional fiduciary and attorney and neurologist meals on wheels. A person who can come into your house and cut your hair, cut your toenails, to care for your pet, the home care agency, the hospice agency, like I have to know all of those people in my neighborhood. And then I tell you whom to use, and I'm not remunerated from those agencies or those companies, You're paying me for my consulting help, and then I give you that information and you do with it what you want.
Jennifer: You can see that would have been very helpful. When we realized that my dad was not doing well, ended up in the hospital for thirty-two days, and while he was home on hospice. I mean, I walked in one day, and he's rifling through the mail and I'm sure I look like a cartoon character with the whole -. I realized, okay, his mind is not good. Mom's mind is no good. Holy crap the bills, so I just had all the mail forwarded to my house. I scooped up what he had there, when he wasn't looking, they had a dog that my mom overfed, their medications were not organized.
Kira: Unfortunately, what you're describing is super typical and I think what happens is when families see their parents like that, the adult children get really stressed and think they have to take it all on, be they have to fix it and see they don't know what the resources are. So it's just a very stressful high cortisol situation for those adult children, but they don't know that they can call an elder care consultant, right, if you don't know I exist. So you don't you start with maybe the Alzheimer's Association because maybe you've heard of that, although I tell you when I ask families, if they've talked to them, they don't even know it exists, not on their radar.
Jennifer: I did not know it existed until I googled for a caregiver support group. Okay, I'd gone to one grief session with the hospice after my dad passed away and I thought, well, this is great for dealing with that issue, but I have the whole issue with my mom and all this turmoil. And I needed something different, and that's when I learned about the Alzheimer's Association, which is frustrating, but I don't know - not sure where they're advertising or how you know. I guess doctors need to connect people with that better, and that's one of the things I work on with the Alzheimer's Association is advocacy and knowledge, and I try to spread the word as much as I can through the part -.
Kira: Well, thatís a key part. You know, I was beating with a family member and she said that the Alzheimer's association center has a lot of lists of home care agencies, list of assisted living homes, and she was already on overwhelmed. So to call through that list and figure out which might be a good home, how much it might cost, how to begin to do research on home care agencies. She just put all that in the drawer and buried her head and thought this is too much. So a care manager like me comes in and rather than giving a list of twenty-five home care agencies, says things like - let's discuss if your husband needs home care, how much you can afford and then let me call the home care agency, and you can begin to meet a caregiver or two and see if that might fit into your household and your budget. So I hold the hands of the family members, which is really what they're usually the crisis point, and they're overwhelmed, and they haven't slept, and they haven't done their regular exercise, they're not meditating, they're drinking lots of alcoholic copes, they're missing work, they're using vacation days to take care of their parents, and I just think of that as the typical hot mess we call it nowadays. And how do we get someone out of that hot mess and with a plan that they can begin to take care of it and use the right resources, so it's not all on them.
Jennifer: So that would have been built and very helpful. Yes, I would have been very helpful when we needed to find an in-home care agency when my dad was released from the hospital because I had to fight with them, right. Like, okay, we're done with him. We're gonna release him. Like, no, you're not. We haven't answered any of these questions. I have an episode coming out on how to choose in-home care because I had to do it in 24 hours, so I didn't have time for vetting. I didn't know anything about people like you, so I had to go on pure gut instinct, and thankfully it worked out fine could have been a disaster. Thankfully, I guess my gut instinct was pretty good that day but that's not the way you want to do it. It's just it was fine.
Kira: And let me tell you one of the things that I wrote, a book you mentioned or you didn't mention in the intro, but I'm gonna hold it up shameless commerce as they used to sand car talk. I took my twenty-five years of experience and my experience in caring for my dad for a few years and put it into this book tips for helping your aging parents without losing your mind, and it's just then it's 125 pages and it has lots of blank space and lots of charts and graphs and pictures. My idea was to help the older adult child like you, typically a woman who's in her fifties maybe still raising children, looking after grandkids working full time and you know, there's a lot to manage.
So I got questions over and over and over in my practice, and I wanted people to have them answered here. And one of the most important things, I think, I tell people is that when a hospital discharge is not safe, those are the magic keys to the kingdom to getting a person not discharged when the hospital wants, but when it's going to work a little better for you. A good discharge plan begins the second your dad steps foot in the hospital, that discharge planner should be there so that you have a full thirty-two days to say, gosh, if he goes and he needs home care, what are my options? Let me start doing some leg work. What medical equipment will we need? Do I need to put in, grab bars and call a licensed contractor, but if you say to the hospital discharge planner, who just wants to get your dad out, this is an unsafe discharge. You will push them back on their heels because it is illegal to discharge someone in the thin air. There must be a safe place for them to go to so if you and youíre overwhelmed. Go - okay, thanks for this list and you take that home in your car, you don't have anything set up. That's not safe. So you tell the discharge planner. Yes, I see the doctor says he's done treating that medically, but I need some time to do my piece. It's not safe for him to come home yet, and you take another day or two to get your ducks in a row and by law, they're going to have to keep him, but they're going to eat that cost to that hospital stay. And that's why they're pushing you to get him out, but this book will tell you to say Iím sorry, that's an unsafe discharge plan, and we need more time.
Jennifer: A little bit nice if we'd actually had a discharge plan from the beginning.
Kira: That's right. that's right. Here's what you need to be thinking about. Here's what we - but they have such a high volume, Jennifer, of patients that they are trying to get out of that hospital. They get them in. They get their medicare days. They treat them for whatever, and they send them home and they just want that turnover to happen like this, and those discharge planners are terribly stressed, racing around talking to five families in one day. Someone's going on hospice, someone's going to a nursing facility. Your dad's trying to go home another person's ripping out all their IVs, and they're calling a cab or uber, and this poor discharge planner is like - oh my gosh, room sixteen is driving me bananas, the family in room nineteen is just having a panic attack about end of life issues, and so here she is trying to get her arms around all these people who have to physically leave that hospital now, and you know they're not really informing the families early enough for those families to feel comfortable. So everybody's in stress and chaos, and that's when I think as soon as your dad goes on the hospital, call care manager, and just say I need some help with a discharge plan. My dad's in for a urinary tract infection or a valve replacement, and we know we're gonna need some handholding when they leave the hospital, can you help us? And I want to give out, well, I'm thinking about it. The website where people can find a care manager anywhere in the nation -.
Kira: Right. So I'm not going to help you if you're in Topeka, Kansas, I don't know anything about that. Here in northern California, I'm in Snowman, Murray county, you can call me. But the clearing house for anyone looking for a care manager anywhere in the nation is a website called aginglifecare.org. Just those three words aginglifecare.org. When you come to the home screen, there's an orange rectangle on the right, and all it says is find an aging life care expert. You click that button and you put in your zip code or your city, and up comes a list of all the people in your area that could do care management, and you'll just call if you see what sounds like a good fit on the phone, and have them come out, and begin to do their magic.
Jennifer: That would be awesome. It would probably be smart to talk to somebody like you before a hospitalization, maybe when you notice -.
Jennifer: My mom, we knew for a long time that she had Alzheimer's. She never admitted it. My dad did not accept help, and for the last couple of years of his life, I kind of stressed about feeling the need to, and be more present regular, you know. I was there regularly, but not weekly or daily, but he didn't accept any help. So it was kind of like, how do I help them without carving a big chunk out of my life? You know it's like my life is full. I don't have time for you know, a couple hours. it was, you know, forty minutes to get to their house, you're talking, you know, over an hour just traveling right, it would have been just knowing what we should have been planning for in the big at the end would have been very helpful.
Kira: Well, here's your pop quiz, Jennifer. How long does the average caregiver journey last, that's what we call it. You, the adult daughter on average, how long are you -.
Jennifer: Five years.
Kira: Average is for. And it can be twelve or twenty if you have a relative with dementia, but on average, mom breaks a hip and that begins your 4-year journey or you come and you notice mails not being opened and finances are quite right. Think cognitive impairment. Get that person to a neurologist bringing a care manager to do an assessment right then because they're going to hold your hands. If you want them to for the next four years of your journey, so you're not trying to figure out the wheel or yourself. Are just so - you know, the fees in Northern California, and I can't speak to other areas in the nation. I mean, I know other big cities are similar money, but it's somewhere between a 125 to 200 dollars an hour to have a care manager, maybe less than more rural areas. I don't know, but you could certainly say - we'd like to hire a care manager to come in and assess our parents, and we don't want to spend more than a thousand dollars like that's what my family is gonna chip in. They come in and when that thousand dollar cap is met, you don't have to have them anymore. Or you can say we want to give our parents with three hours of your time so that you don't have to have an ongoing relationship. I don't have to visit every single week till your parents die. It's very fluid. You just tell me, come in and do the assessment. You want me to give you the action plan and writing, I never see you again, that's okay. You're not obligated. It's kind of like an attorney if you need to or as things come up over time and there's another hospitalization, a care manager already has a baseline. They've seen your family member in their home, so when I show up at the hospital room, you have the family go - oh, good, she already knows how hard my dad can be. She already knows how my mom can be. She's seen the bathroom. She knows that the walker's not gonna fit right now, and I can begin to work with the discharge planner to say professional to professional. You know, I've been to the house. I think we need to get meals on wheels that refrigerator is not going to be stocked with healthy meals. When they come home, I can just tell you right now that they don't cook saw their kitchen, itís immaculate. Nobody, you know that sort of thing? So I can - I have a family I've worked with for eight years. He was at his home when I started and now he's in a memory care unit, so we've gone all the way from at home, not wanting to let me in the door to some home care at the house to a move to memory care, but that family has had me for eight years to touch base with us. Things happened and that's worth their peace of mind to just be able to call any old time and say this is our latest episode, can you help us out.
Jennifer: So, I can totally see the benefit of that because I'm the oldest of the two daughters. It is just the two of us, and I'm the health care power of attorney for our mom. I was for dad too, but that's kind of irrelevant at this point, and it's like there are times when it's like. I don't really want to make any more decisions. Thank you very much. We've kind of done. We're dealing with a health issue and I am fed up with doctors that have zero clue how to handle somebody with Alzheimer's. You know I go in, and I tell them you know, moms got advanced Alzheimer's, and they turn and look at her and go - can you tell me your first last name, and your birthday? First, I shouldn't even understand what you said because you just blew up so quickly and no, she can't tell you her first and last name or her birthday.
Kira: So that's why I'm here so frustrated. I'm hoping we're going to get better over time, especially as these health care providers have their own relatives that have memory loss in the impairment. I think my biggest frustration and I hear from families is, you know, please don't say memory loss or Alzheimer's around my loved one like - I'm here to attend the appointment, but I don't want to bring that up at disappointment. I'm happy to talk with you offline and sure enough, I just want to let you know your test came back in your Alzheimer's straight to the person's face, and the families feel so betrayed, because now who's got to drive home in the car and listen to don't have any, you know, really, you know and then they're mad at the daughter and the daughter's like - oh, my goodness, I already called the office to manage my expectations. If they were not going to say those words in front of her or that we're going to take away your driver's license or I have to report you to the DNB like doctors feel so like they have to do it, this thing and that there's no subtlety in nuance sometimes, and the family wants the nuance like, yes, we know mom has to not drive anymore, but you can't just confront someone who's been driving for 75 years and be so blunt about it without expecting blowback. Which by the way, the doctor doesn't have to feel because you got six minutes with him or her and now you're out the door and you're the one getting the blowback and managing well. I don't know, mom, and not sure how it works, and well, I don't know. they say they're DNB is going to send a letter and four hours and then fourteen days - fifty - I mean, you've got brain damage from that adult for years. I mean, months till the DNBís resolved all from that six-minute doctor visit.
Jennifer: In my experiences, they just assume like, you know, like we thought my mom had a bladder infection, shoot on antibiotics for five days, the caregivers called and said she still got a problem. So of course, I immediately inform the doctors office. The five days of antibiotics didn't work. They don't call me for forty eight hours. Now, it's a Friday late morning and it's like - must do this now, we've got to get an ultrasound today or tomorrow. I'm like it's Friday. Honest to God. It took me six hours twelve phone calls. Now I have learned over the years that coming unglued and screaming people is not effective.
Kira: You get more flies with honey, you've learned.
Jennifer: Yes, well, that day, I did not care because I blew up. It was a nice day. the windows were open. I'm sure the neighbors could hear because it was like - it was a Friday. I had - I went out on my bike ride. I came home. I was like, okay, shower dress, have some lunch. I've got this pile of stuff to do nothing, no episodes to record, no clients coming over, nothing like four or five hours ahead of me and just get stuff done. You know, I ended up having to drive her half an hour away in rush hour traffic to get this ultrasound, and that's what they do all the time they're like - oh, well, now they want it. We've done two ultrasounds in the CT scan. Now they want to do another ultrasound. I'm like, dude, I don't have time. I'm like - I'm looking at my calendar. I'm like I might be able to schedule something in two and a half weeks. He's like - well, I really need to get it done in a week or two. I'm like I don't have three to four hours, and he's like, why does it take so long? Like because I can't just pick her up and throw her in the car like a two-year-old. Oh okay, you know, it's just like - it's so frustrating -.
Kira: It is.
Jennifer: And I try really hard to help educate them like I've found because my mom thinks I'm her best friend, so if I say - oh, mom has Alzheimer's, she doesn't realize I'm talking about her so that's a benefit because I have for the longest time of avoided saying that in front of her, and it doesn't do any good. And when we were at one of the radiology offices, I specifically asked the young lady and said now he realized she has advanced Alzheimer's. He read her chart right, and they're like - she's like - well, I guess it was on the top. I'm like - good, that's where it should be - should be big, bold letters right on the front. So what we don't normally read that you know. Thirdly, through the chart, we just look at the other scans, and I'm like - do you know how many problems that probably causes? And she was really sweet, and I was trying not to be rude or you know, trying to tell her how she should do her job. I was trying to suggest and give her things to think about because I know that's how we all kind of appreciate being approached. So I hope I helped her understand she was probably in her late 20s. So she was seriously young, makes me sound really old, but it's just, you know, they just don't get it and so frustrating.
That's my biggest challenge, it is dealing with the medical profession, especially because my mom has always been so physically healthy. Her brain is toast. The rest of her, you know, we figured she could live 10, 15 years when my dad passed away which has been two and a half years. The neurologist said if something doesn't happen, it could easily be 10 years. That was the beginning of this year and we're going back to the neurologist next week, so it should be interesting to see what she says, and I'm getting her opinion on, you know, do this test and we do that test or I've had too many opinions.
Kira: And ultimately, we know that everybody reacts differently with every disease process, so if I get MS, it's gonna be a different rate of decline to my next-door neighbor. There's no parody and especially with brain changes. I mean, we're learning more about the role of inflammation and with sugar and diabetes, but we even know things like bad dental care can be inflammation that affects our brain now. Like more and more and more. you know. We're just getting educated, but that doesn't mean that we can say, families ask me all the time - how much longer do you think my mom has. The only thing I can tell them, just like an actuary is that the longer someone lives, the longer they are likely to live, right? So if you're 90, I'm not planning for one more year. I'm actually planning for a lot more years because you've already made it to ninety.
There's something in your genetic makeup that's holding you strong. You've survived losses. You've survived health incidents so that you saw your hearty stock. I guess it is what they're saying, and with dimensions. The same thing I have seen people go very quickly after diagnosis, and I've seen other people that you know, this is their twentieth round of antibiotics for a urinary tract indication. Seven years later, still another urinary tract infection, still another round of antibiotics, and they don't go septic. So I shouldn't sound like that's a bad thing, but you know, a lot of my families are ready for their family members to go. It's a lot to manage, especially with a broken brain, and they don't want to say it out loud to the people at church or their gym class, but to me, they'll say - do you think they're going to last a lot longer because I'm getting exhausted, I'm worried that they're going to outlive all their money, I'm worried that I'm gonna get this all of their fears come out, and I said - well, we don't practice euthanasia yet. They're not a dog. we can take to the vet. and nobody really knows how much longer, but certainly, if you get to end of life, you can choose not to do aggressive treatment, even for another urinary tract infection. So people - I encourage them to have those conversations with their doctors. If things are that hard at home and there's no quality of life. It's worth the ask. It's worth that conversation.
Jennifer: And I talked to the facilitator of our support group last night, and she pointed out a couple things that shifted my opinion slightly because I wasn't aware of some of the potential outcomes. So it's like, okay, but you know, the surgeon that was supposed to call me last week still hasn't called me and I'm not chasing that person down until after I talk to the neurologist because I like her. She understands that we've been on this journey for about twenty years. There's no, I mean, I don't know why anybody would prolong the life of somebody living with Alzheimer's because the end is so ugly. It's just like not cool, so I was not planning on any of those decisions. I don't know why. I guess I was naive. I just assumed that you know, mom would stay physically healthy - not a good plan on my part.
Kira: Well, every as I say, every family is different, and it's important that they have a professional whom they can go to, who can provide guidance over the long term in my opinion, with this kind of dementia especially. And I don't know there are a lot of different programs in different areas that can do that. A care manager is one option, as I say, they're often nonprofits and people's neighborhoods that will also offer case management services or care management services, and I think it's money well spent, even if you just get one assessment and get pointed in the right direction.
A lot of people say - if I had known about you a year ago, we would have made such a different plan for our parents. We didn't know what you've just shared with us. We wouldn't have chosen that care home. It looked really good. It was ten thousand dollars, so we thought mom would get great care. We bought it with our eyes. We didn't ask any care questions. We didn't know how experienced the staff was or how train they were or how new the executive director was or even how bad the food was. Like, we didn't know what we didn't know. We didn't know what to ask, but you come through a care manager. We keep our eyes on all these things will be like. Yeah, we're not spending our ten-gram there. Weíre gonna try this home over here, they've got their act together.
Jennifer: I kind of picked momís place. It wasn't got instinct if some of it was, I did go there twice. When my dad passed away, she still had the dog who was extremely obese. People - regular listeners know all about Misty and when they said mom can keep her dog, I was like - here's money, but I'd already been there. And yeah, it was like the dog was so bad she could not live with my Mike. I've got three golden retrievers, the oldest one, if he sees her coming, literally goes out and hides in the garage in the yard, it's - and he doesn't usually get more than two or three feet away from me, so to look around and go, where's Jinks? Because he does not want to deal with this dog.
Kira: Wow, that's very telling.
Jennifer: And I had taken care of her, for you know, three days to a week earlier in her life. When my parents could still go out of town, she's horrible, so I know there's like no way this dog is coming to live with me. And my sister had two dogs, I think she had a cat. She ended up taking mom and dad's cat, so it's like she couldn't take any more animals, and I wanted some, but something I want - I felt like we were ripping everything away from my mom. My dad had died or taken out of their home. They lived in for just under forty-seven years. You know, it was like, how about upheaval, so we wanted the dog to stay with her, but there is a care home. You know, corporate one down the hill for my house, like literally about a mile and a smidge.
There's reason she's not there. We had been there while my dad was in the hospital and my husband came home and he was just like - that place is horrible and I kind of knew from, you know, my dealings with that. They have community meetings and stuff there, so I've been there enough to know that you didn't think it was the right place. So she's still fairly close by, but we don't have a whole lot of options close to me and my sister. So again, I got lucky. I didn't have to move her out because of something bad and it's a really good, you know, residents for her, you know, but all these decisions I had to make, you know, I had to figure out what to do with their house and clean it out and get it ready to run, and it was just like, too many choices. Fortunately, my husband and I are Rotarians, so we had a lot of people we could ask, but we didn't have anybody like you that would have helped a lot.
Kira: I would have put all those Rotarians to use one-two-three great, you do this. If you do that, I mean, that's as I say. If you want someone as an overarching helper and I wanna mention the app that I helped to develop.
A man approached me a few years ago. He was - he developed a lot of apps and wanted one for Elder Care. Basically, it's just called Caring, and the idea is that you put this app, you download it the free trial onto your phone, android or apple phone or your tablet, and you enter your mom's profile. All of that demographic information that you're using over and over and over that you're gonna get asked over and over every facility in every hospital, and every doctor. You've got all of that there and then you've got. Let's say, you put the location. We have a legal drawer and it's the location of all the legal documents, so it opens up a conversation of mom. Do you have a trust? And if so, where is it? In case we need it. Where's your powers of attorney? Where's your pulse form? Whatever you may have done, you can actually take a picture of it and put it in the app to hold it, or you can put where it is in case you need it. We have a whole-time tracking section, so for adult children like you that are losing hours and hours at work not being reimbursed, it's a way to track your time, track your expenses. You can also put in paid caregivers and other expenses, but mainly it's keeping sort of that, and the app is free once it's populated with your information. Once you buy it for $4.99 for the whole year, you share it with your family members at no cost. So you and your sister can look at your phone at any point in real-time and see what mother's appeal, doctor's appointments are, how much her assisted living rent is, where her will is or her driver's license, whatever you need. You've put in the app in real time, any time, either of you make changes to it. You've got it to look down at, so it's a way of sort of sharing the load and providing a lot of transparency.
You can put all the medications for your parents into the app so that you can email that to the doctor in advance, printed out while you're at the emergency department. And there's a thing-to-do list and I really like that because when you have two parents to look after, you can have when you purchase a subscription for the app. You can put in five people's info. You can think of it like five file drawers, so mom is there, and dad is there, and they're separate. So I can put all of mom's documents and health history and meds, and one and dadís and another, and then any time I need to open a profile, I just click on mom's picture, and underneath there in the app is all of the information that I've ever entered for her or my sister.
Jennifer: That sounds very useful.
Kira: So yeah, we're really encouraging people to download the free trial of Caring, and there I think, you'll probably put a link on the - this podcast on the show. Now go to the app store or google play and get Caring. Download the free trial and then the subscription for the whole year for five people is for putting in five people's profiles, is just four dollars and ninety-nine cents for the year.
Jennifer: Cheaper than a cup of coffee.
Kira: Cheaper than a cup of coffee, yeah, and that way, and you can add to it over a year - over the years, so like I know that if I had a stroke right this minute.
I've already shared the app with my daughter. She would just bring her phone to the emergency department. Open it up, and that would show you the medications. I'm on my allergies, my med history. I've got copies of test results in there. Anything she needs would be on her phone. Jennifer: What should people always have with them.
Kira: Which people, that's exactly why we didn't make it a computer-based program.
Jennifer: Because I know when my dad, we insisted my dad go to the hospital because we had no idea what was going on with him. You know, my husband's like I know, first off, we had a copy of the trust, so that was okay, but we needed like - he had a spreadsheet for all of his medications, which there's actually a really cool product called Pill Map. It's a way to visualize what you're taking and exactly what you're taking, so it's like you have to take half of a pill. You put half of the pill in the little window right next to it. You write out what the medication is and what it's for and what the dosages. So between your app and that thing. You could take all that to the doctor's office of the emergency room and say this is what they're taking. Here's all the other information, so they're more and more -.
Kira: Yeah, that would actually all go on the app that you could put take and you could take a picture of the pill. That's the half and what we suggest people do is take a picture of the medicine bottle. So it has the reorder number and the number of the pharmacy because my dad. I don't know about you would call me when he only had one pill left. Never when they were seven left and he'd be like - you know, I only have one listed April left. I'm like - oh, my gosh, didn't you know when you had only seven left now? It's a crisis right now. I've got to drop everything at work. Well, I look at the app, I call the drug store, the phone numbers there on the app at my phone at my office. The RX number is there and I just tried by and pick it up after working itís a done deal, so I don't have to have him read me that number because I've already taken a picture of the bottle when I first picked it up. So 30 days or 60 days or 90 days later, I have everything I need on the app because I snapped a picture of it.
Jennifer: That wouldn't be very useful to know my dad was good at that, because he needed anti-rejection meds and insulin, so he was good about that.
Kira: Well, good.
Jennifer: So your book. What was the title again?
Kira: It's called. for Helping your Aging Parents without Losing your Mind. That's available at amazon for $12.95 or people can order it through my website, which is just callkira.com, and that's just c-a-l-l, and then my first name Kira, k-i-r-a.com. Just order it. Callkira.com, and I will inscribe it for you and pop it in the mail.
Jennifer: That sounds terrific, so I honestly think a book like that when I think once you get to a certain age or your parents get to a certain age, everybody should just get a copy of it because you never know what you're gonna need to know until you're in a crisis. and then if you don't, if you don't know about somebody like you or the app or I mean, there's just like I said too many decisions sometimes.
Kira: The sooner you do it, the better they call it at home. Instead, home care agency, they call it the 40 70 talk. and they have a pamphlet you can get, and the idea is that when your parents are seventy and you're forty, that's the key time to sit down and talk about affairs, because usually the health crises and the mental health or the dementia hasn't occurred yet, so that's when you can have a really good conversation and start to put things into an app or put things in place. If they're not already done so that - it's actually called the forty seventy talk, and then there's another dimension book I wanna mention maybe you already mentioned it on the show before. It's a new one. This is a colleague of mine. It's called Coping with Behavior Change in Dementia - a Family Caregiverís Guide. It's a Beth Spencer and Laurie White. Laurie white lives in my neighborhood in San Rosa, and she's an elder care consultant. She specializes in dementia, does a lot of training, and this is basically different behaviors people exhibit when they have dementia, are covered in the book, and then strategies for coping with it. So what you can do medically, what you can do behaviorally, things you need to think about might be causing that behavior because we want to use the least amount of drugs as possible when you're managing someone with memory loss. So this coping with behavior change in dementia, I highly recommend and then, of course, you probably know, tip a snow's work.
Jennifer: Yes, she was in Brentwood in July. I was like - are you kidding? She's catchy technically was in Byron, which is like what is a very small city. Byron is like non-existence, size-wise that's like she really is coming here, and I took the whole day. I went and saw her. I was - she was fantastic because for about the first three minutes on, she had everybody seriously laughing out loud and that's a serious topic, and -.
Kira: Yes, it is,
Jennifer: I think you kind of retain things better, funny and interactive, and I think there was about six of us from my support group that went. And the one gal that I sat with, she kept saying - my dad does that. Oh, I do that. Oh, if I had only known. She was so funny because she's like, you know. The team would be pointing out the things that we do that are technically wrong right, right?
Jennifer: She was like I do that. I do that. I'm like, well, you're getting your forty bucks worth or she - it was awesome.
Kira: Yeah, she's an incredible speaker, and that's what we took. I'm glad you're doing the education is encouraging people to take the time off because that four hours you give to yourself serves you for a lifetime in dealing with that person and their symptoms. Because you don't know what you don't know, have to get that education and not people are like -well, I don't have time to go. It's like you don't have time not to go. You have got to do some reading. You have got to go to some support groups. You've got to go to educational presentations because this isn't going away and you have no tools in your toolbox. You're not going to figure it out. You are going to do the wrong thing unless you get coached on how to go about this because with a broken brain all bets are off of treating the person logically. You know, I call it going to planet dementia. They still think that their dog is alive, you know, fine, what do you care. You don't have to keep reminding them that the dog is not there or that they don't drive anymore or that they have dementia. Like you have to go to planet dementia and whatever they say, just go along with the program, you know, just make your life easy.
Jennifer: My mom does not remember that dad is gone which blows my mind. Something doesnít know - a year ago, the residents, they removed remodeled the entire complex, and because the dog did not have structure, she was getting nutty, and she literally was double her body weight because all the nice, sweet little old ladies would feed her because they felt bad for this dog. And I make the joke that I expected to show up and just find popped cooler everywhere because I mean, literally, she weighed twenty-seven pounds, she should weigh about fifteen, and she just she wasn't pleasant to be around, but the executive director did not tell me I had to rehome her. He just hinted around it because he did not want to say that he - I think - he felt like my sister and I did.
It's like, well, if mom is getting the emotional benefit from the dog. We don't really want to get rid of the dog but the dog is almost being abused and my poor sister and I were going around and around, and when they basically hinted said that she needed to be rehomed. It was kind of nice because the decision was made for us. Mom doesn't remember the dog is gone and whenever I have to take her to the doctor, I get well - where is my husband and why is he not thinking around and it's always bitchy. It's just terrible. and I've learned to say - well I don't know, you tell me. I don't know why he's not taking you, you tell me. Because I'm not going to remind you that he's dead and then go to the doctor, that sounds like a complete way to just make my life miserable and I found the more people that I talk to like you, and the more I read, and you know I'm about fifty miles northeast of San Francisco, so I don't get a lot of opportunities for educational programs there are but I find talking to people and listening to the podcast is easier.
The more I've learned, the easier it is to deal with her. Early on, and I think I've told this story before. We moved her in March of 2017. So about this time two years ago, I realized you know the holidays are coming birthday for my daughter. My daughter, my niece and I are all in November since gift-giving is coming, and I knew my mom would be upset if she didn't have something to give the kids, and there was no way I was taking her shopping because that's a nightmare. So I thought you know she was always creative. She always did. You know she was working and sewing and painting, just you know, she did a lot, so I came up with a very super simple little project. You couldn't screw it up super easy and it was like banging my head on the wall because I had to keep telling her why we were doing this, what we were doing, no, you can't screw it up. This is how you did this over and over and over, and I thought this is horrible.
Well, in the interim, after torturing the two of us with - I've learned that her visual processing is so shot that it wasn't that she was forgetting it, just what she was seeing. Her brain was not processing properly, and we have, and now it's even worse than it was two years ago. So I like to take her out to the park regular listeners. now we like to go watch children which makes us sound a little creepy, but we're not. And she's having a hard time walking on the grass, not if I don't know. She gets weird signals. If there, we've gone to the pool and where the water makes the cement darker, she perceives it as something hazardous. I mean, it's just like awful -.
Kira: But that's all things they would teach you and teach us those class. Yeah, that's all textbook.
Jennifer: Yeah, and I learned that before I went to her class and I did have a specific question that I asked her, not privately, but it - you know it was during a break because my mom will not hold my hand. She will not take my elbow and she is going to fall on her face because she's just a hazard walking, because she's always watching her feet. So she's bent over watching her feet. You know, it's today is supposed to be 102 here. If I had taken her out, she has a tendency lean on hot cars to step down into a parking lot, and I was like, I asked HEPA how to like how to get her over that, and her suggestion was great, but it didn't work. It would be super typical of my mom, and then she had another tip for basically putting your hand down the back of their shoulder, so your fingertips were on the top of their shoulder and that way you can kind of guide them, but they don't feel like that's what you're doing.
Kira: Right, right.
Jennifer: Well, my mom's got a really curved humped back so when you do that, you can't even feel her shoulder blades, and she says - you're gonna push me over, you're pushing me, stop pushing. I'm not pushing trust me, so I have no idea what we're gonna do about the lack of allowing somebody to help and assist. When I - the last time we were out, when it was really hot and she was about to put her hand on a hot car, I just grabbed her hand. They said, don't touch that. It's hot. Probably not the best way to do it, but I was just like I'm not dealing with this. We've been at the doctor, so I was pretty done.
Kira: Yeah, it's very hard to take care for someone with memory loss because there's no rationalizing with them, and sometimes the auditory processing is poor. So if you said it's hot. They can't process that to them to do what you're asking them to do anyway, so you think that because you've said it and they can hear you, but they understood you and they don't.
Jennifer: That was very possible.
Kira: All that education comes in. Well, this has been great, and if I really appreciate your hands.
Jennifer: All right, I think I will order the book so that I can share it. absolutely, because I am starting my own little caregiver library because guests send their books. some of them I buy, so it's just been it's been super useful.
Kira: Well, I would be happy to send you a copy of my book and incredible to get you know. Tip us work Laurie White's work. Those are sort of the basic books to have on your bookshelf the coping with behavior change in dementia. I like - there's actually one called it. This is from amazon, the Caregiver's Guide to Lewy Body Dementia. and that's from $19.95, and I recommended that to families to used to be called Lewy Body. The roller coaster, because the person is so good and then so bad and so good, and so bad. So this is their newest version of it. The caregivers guide to Lewy body Dementia, so some of your listeners have a relative with Lewy Body. They can get this book coping with behavior change in dementia is excellent, and then mine doesn't talk about dementia, but it talks about taking care of yourself.
Kira: And then the carrying app is available for families, no matter whom they're caring for and what their circumstances are.
Jennifer: Well, that's I like the suggestion on the Lewy Body book because the friend that was with me at tip is conference. Her dad has Lewy Body even after talking to her, I did not realize that they had all those up and downs, and I'm wondering if she does because she's got guilt feelings over decisions that were made erroneously because information was correct, miss diagnosis, miss medicated. I mean, she didn't screw up, it's just the process of the disease, and that episode is on the 17th - of September 17, 2019. There we go to get my brain in order here so I'm going to suggest that to her, and I'll go add that book to the showdowns because that sounds like a really good one.
Jennifer: I really appreciate you talking to everybody today. I hope other people will be able to take advantage of people like you, Elder Care Consultants. I wish we had done that years ago.