Episode Transcript
Speaker 0 00:00:59 Tonight. We are speaking about the empowered caregiving. The empowered caregiving is a book that talks about, um, sorry, practical advice and emotional support for adult children of aging parents. And we are here with Linda Ford, Rainey Johnson and Linda. Hopefully I said that last name correctly. Okay. Thank you. I've been butchering names lately. I don't know what that is. Linda. Thank you so much for coming on with me. Linda's a licensed therapy family therapist and a professional certified care manager. Um, so Linda, thank you again. I, um, I always appreciate I'm a volunteer and I always appreciate people who, who volunteer their time and, um, give their valuable information on this book. I have to tell you when I read this book, I, I found it extremely well put together. Um, so thank you. And I will be referring this to, you know, suggesting people buy this book to a lot of people because, um, I think it's really needed. And, um, I don't think people realize all the stuff, but we're going to go into it and talk about it. So can you first give me a little bit of history about your qualifications?
Speaker 2 00:02:26 Um, I've been, um, a geriatric care manager for about 35 years, but I started my journey as an intern and, and, and, uh, the public arena with the senior information office. Then I went to work for a nonprofit, got my master's degree, got my license and counseling, and, uh, got my certification as a geriatric care manager and started my own practice, uh, more than 30 years ago, um, after working for some nonprofits and, um, I'm kind of a creative person and if you're a creative person, you kind of have to do it your way. So I did that for 30 years and, um, I started writing this book 10 years ago and I finished it after I sold my business. It takes a long time to write a book. Right.
Speaker 0 00:03:13 I don't doubt it. I wanted to ask you, um, so you, this is not really your first rodeo. I saw you wrote another book I believe on, on aging. It's
Speaker 2 00:03:23 Just a little short thing.
Speaker 0 00:03:25 So why did you feel like a book like this was needed?
Speaker 2 00:03:30 Ah, thank you for asking that the original title that I came up with, you know, you talked to an editor and they, they make you change. That was a pocket support group for family caregivers. And I've been doing support groups besides doing one-on-one counseling and, and lots of care plans and what I call roadmaps for families. But I thought not everyone has the time to take for a support group. They're too busy with their caring or dividing family care and parent care and maybe spousal care and you know, all the generations of care that they're doing, mostly women. Um, so a pocket support group was something that you could pick up as a resource and not have to read it from cover to cover, which I do recommend, but you don't have to, you could just go to the chapter, that's causing you some distress and read it and say, oh, there there's a solution.
Speaker 2 00:04:29 So the concept for the book is, uh, every chapter I write the issue and probably four to six sentences at the most didn't I get right in to strategies and, uh, examples on sometimes there's lists and checklists, but not, not too many. Um, and then there's an affirmation on every chat, uh, chapter to help people remember what they just read and, and keep them more positive focused on the needs of caregiving. And, you know, again, so many caregivers that I've worked with have had serious illnesses themselves. Um, either, you know, things like aneurysms and strokes and heart attacks before the person they were caring for passed away or were placed because they over caring. So I thought the book would empower caregivers with the information they needed to have a balance in their life between caregiving and self care. You know, it's, it's an opportunity in a service of love to care for somebody in our family.
Speaker 2 00:05:42 But if we do it and ignore ourself, we're not providing good care actually for our family member, nor are we taking care of our own health. So that's kind of, what's behind the book. Um, and I just recently did a talk with, uh, a Parkinson's group. And, um, the people on that podcast that I was talking with said in talking with me and listening to how the book is constructed, that they felt heard. So the book is not just about the person, this, the caregiver, the book is really for all of us, because on, as a journey, we all call life. We are going to house some pothole, so we're going to fall into it. And if we live a long life, for sure, and if we live a shorter life, we feel falling into those potholes prematurely. So this is a book I think helps you grasp planning for what you want that long life to look like. Um, and one of the things I suggest in the book is your advance healthcare directive.
Speaker 0 00:07:00 Yep. And we will get to that. I'm going to cover a lot of different things here, um, that you go through your chapters. So I just want to remind everyone, you're listening to disability on progress. We're speaking with Linda for dreamy Johnson, and we're talking about her book, the empowered caregiver. Um, so I, I want to start off because you start off with your first chapter. That is, I think, a valuable one, um, called basically caregiving basics. And there's a lot in there, even though I think you, you, you did do a great job of, uh, bridging kind of what you needed to do and the things that everyone should really know. And, uh, but there's a lot to talk about. And you mentioned starting the conversation and the importance of this, um, with your, the, the loved person that you're caring for. Talk a little bit about that that's fantasy.
Speaker 2 00:08:01 When most adult children or people with aging family members, uh, it could be anybody. It could be your sister, your brother, your mother, your father, your grandparent, um, one to say, you should, you need to get a caregiver. You should move to assisted living. Um, they're, they're doing a lot of that and that's not usually successful. So setting up that conversation in the beginning is using an I message, which many of us have learned at some point across our educational, uh, and uh, life spectrum. But it's saying I'm concerned about your mom and dad. Can we have a talk about your wishes, uh, as you age and, uh, what you want or don't want. And I always suggest that that not happen where we're facing the holidays right now. So listen, don't do this on Thanksgiving day.
Speaker 0 00:09:02 A very wise suggestion.
Speaker 2 00:09:05 Yeah. The day after, if everybody is gathered, that might be a good time and no alcohol, no food, just a conversation. Everybody have a cup of tea or coffee or whatever, but, you know, and sit around and talk with your older family member about what they want. If, if they had a crisis now, maybe you already have enough red flags that they need help, but don't go there right now. Just talk about the, what ifs, what if you broke your hip or mom, wasn't here to help you anymore. Dad, you know, if mom's been the helper, what would you want? Do you want to stay in your own home, uh, with, um, you know, some assistance or do you want to move to one of those really nice assisted livings that have everything from horseback riding to, you know, uh, tours and trips and travel and just all kinds of things. So,
Speaker 0 00:10:00 Um, in general, how easy does this tend to be for people to do and how receptive are there people that are caring for a usually, okay.
Speaker 2 00:10:11 I think it's about 50% receptive and 50% I've I don't need to burden you with that. We've taken care of everything. So it's a resistance and there is, oh, thank God. I I'm. I was worried about that. So I want to talk about that, but I didn't want to burn your kids, but if you want to talk about it, yeah. I I'd rather move closer to one of you. If something happened to dad and the conversation goes a lot smoother, you get more resistance. If there's a dementia element, um, that the person isn't able to see that they have needs and you're going to get resistance. So your strategy is going to be a little bit different. And sometimes you're going to have to use, which I talk about in the books, therapeutic fibula it's, if somebody is more advanced in their dementia and they're a danger to yourself or others living alone, um, then you have to take some action. We'll cut
Speaker 0 00:11:11 A little later because we just had a show on dementia. And so hopefully our listeners heard that and I want, I will want to revisit some things. So can you, you know, you give lists, like you said, they're usually, they're pretty good lists and they're not very, very much, except that you did this list of several things that you should make sure you know about the situation like insurance and medicine, et cetera. There were just several things. And I found, um, not only did that kinda make my head spin thinking of that if I were a caregiver, but, um, that I probably have that list written down myself and probably should do that just to make sure. Um, so talk about some of those things that you list in the book that the caregiver really needs to make sure they know.
Speaker 2 00:12:10 Yeah. You, you need to know where your parents' finances come from. How are they automatically deposited? Do they come in a check form? Did mom and dad deposit them every month, um, who has access to those, those checking accounts? Um, do mom and dad have, have they done some legal planning? Do they have a trust? Do they have those advanced healthcare directives? Um, a lot of people say, yes, I have some, but they haven't really signed them or completed them. They have the piece of paper, but they don't have them completed. So you, you, the legal documents, the financial documents where the money comes from, what might they be entitled to? Maybe they, they are low or middle income people and they might be entitled to, things are not taking advantage of. So you kind of want to know a lot, a lot of times, adult older adults don't want to talk finances with their parents, their children they're very closed about that.
Speaker 2 00:13:13 But, uh, sometimes when you open the door with, you know, mom or dad, there might be entitlements that you're missing out on, let's go to, um, a website and see, check it out and see if there might be some other, um, sources for your support. So again, when you say that there might be something that's like free money or something, that's gonna help them. They're more, um, co-operative so again, you want to know, are they entitled to the VA benefit is one of the things that a lot of people don't know about aid and attendance benefits. So, um, you know, if they go to benefits, benefits, checkup.org, and put in an area information, I'll find, you know, what they're entitled to or not entitled to. And that goes, go ahead. And that's a broad range of entitlements when I put my own information on and it, uh, it came out, I said, I'm not going to be entitled.
Speaker 2 00:14:15 Sandy thing is that I was entitled to a pass the national parks. So it's really broad what you're entitled to. So there's the entitlements. And then there are definitely medications, doctors, uh, hospitals that they use, uh, the name of a neighbor. Um, do they have a go bag in case of an emergency, anything from, you know, fires to earthquakes, to hurricanes, to you can, we don't know what kind of dilemma could, uh, be set a community. So do they have that? Yeah. COVID yeah. Pretty besides getting a vaccination, it's pretty hard to avoid that. Uh, and even then, then you still have to be careful. Um, so all of these things, I mean, and I have even more in the book that you need to have, and if you have that information, then when there's a crisis, there is the broken hip. If, if your parents haven't planned to, to move someplace and you live at a distance, you have that information, you could fax it or download it, get it to an emergency room, especially if you are the person that's going to help make decisions. So the more information you have, the easier it is for, um, an emergency team to assist your parent in a crisis.
Speaker 0 00:15:39 This is disability and progress, and we are going to stop for a short station break and we'll be right back
Speaker 3 00:15:46 Programming on KFC supported by Metro transit. Metro transit now offers use of an app that connects blind and low-vision customers to a live agent for navigation assistance during transit trips, more information at Metro transit dot O R G slash a I R a
Speaker 0 00:16:15 And this is KVI 90.3 FM Minneapolis, and kfa.org. We are speaking with Linda for dreamy Johnson and talking about her book, the empowered caregiver. Um, Linda, I wonder if you could talk a little bit about, um, safety and I think that safety concerns, and there tend to be, you know, people get worried, you know, when somebody, especially if it's a single their mom or their dad, or you, and maybe they're divorced or separated, and they have to have two separate parents to look after. And so talk about what safety concerns that somebody might worry about.
Speaker 2 00:16:57 Well, you think falls are the number one worry that somebody would fall and not be able to get the help they need. Um, and you know, our new smartwatches will, uh, I I've had two falls in the wash has asked me if they want it. The watch wants to call the EMT for me. And I say, no, it's not necessary, but, um, there are lots of personal alerts that can help if you have to wear it. So, I mean, that's the only other issue. Um, you have to wear that. I think, especially when somebody lives at a distance, um, one of the things that my mother-in-law I'm in, you know, uh, the west coast, my mother-in-law was in Pennsylvania living alone. And, um, she had a neighbor and the neighbor and she would pull their blinds up in the, and that would be the signal that they're fine.
Speaker 2 00:17:52 And that's how they told one another. That was their technology. Cool. Isn't that cool. Then my brother, my brother-in-law was a doctor in that little town and the day the shade didn't go up, the neighbor call my brother-in-law and he found his mom had fallen. She was okay, but that was the beginning of needing more care for her. Um, so, and again, she has the emergency response bracelet, but she took it off at night instead of wearing it to the bathroom where she fell were lots of accidents to happen. So I would say fall send to have a way to, um, check in someplace and, and lots of communities have like daily reassurance calls and there are programs like that throughout the United States. And you would call your senior information office in your city and ask if there's one there. Um, so, and they're usually staffed by volunteers.
Speaker 2 00:18:54 So just make a call every day and see if, you know, Mr. Jones is doing okay. And there are sensors that you can purchase, you can purchase them and on online, um, and those sensors will let you know, if the front door was opened. If the refrigerator was opened, as the bathroom door was open and just send the adult child a signal. And, um, it's not like having an invasive camera in the house, recording everything, but it's just a way to know things are okay. And then people that are marginal, maybe that do have the beginning of a dementia, there are ways of turning off the stove or letting the stove that's only been able to be on for enough to time to scramble an egg. And then it will turn itself off. Um, there are, you know, again, you get, get warm meals delivered from the community services and stuff like that.
Speaker 2 00:19:54 So you cut down on the potential of accidents by using some technologies or, or local services. Um, I, I believe in letting people be as independent as possible for as long as possible, as long as their safety has been, um, lots of these little checks and balances put in place. And again, the, um, an occupational therapist could come in. If, if you've had a change of medical status of mom or dad, or even you, uh, have a change of medical status, Medicare will pay for an occupational therapist to come in and help you kind of evaluate your home, see where grab bars need to go. Maybe a railing needs to go down a hallway, maybe more grab bars than one in a shower, maybe a pole next to your bed to help you get out of bed. So there's all kinds of gadgets, some ways, and occupational therapist, Sarah therapists could set that home up to be more safe for that older individual.
Speaker 0 00:20:57 Do sure insurances often cover these alerts like alert.
Speaker 2 00:21:04 I've not seen that and they're not expensive. Most of them are in a fairly inexpensive, um, no, they don't, uh, some plans, some plans in, we have something in California that has some waivers and gives the social workers and people who are helping people to try to stay at home a little bit of an allowance. And sometimes they will use that allowance to buy some of those, uh, safety devices. So there are ways and an organization, sometimes it come in and support, um, seniors living alone, uh, the rotary and I, I think this is throughout the country. Many rotaries have a home team and those home teams will go in and help build a railing, um, you know, get change light bulbs. So people aren't on ladders ladders or another, especially with men older men, lots of falls off the ladders. Um, so to change light bulbs, to turn over a mattress, um, to get us stuck door, uh, on stock and stuff like that. And they're free. So there there's lots of resources out there to help people stay safe.
Speaker 0 00:22:20 I want to ask, um, if you have a concept of something, I, uh, we had a family issue where, uh, somebody had a stroke and she was 64, which does not feel incredibly old. Um, and nobody found her for awhile and that still haunts me. And she didn't, obviously she didn't have one of these things that alerts riots. Um, when should you think about getting one? How do you know that you need one?
Speaker 2 00:22:53 Well, I didn't know. I needed one until I had a smartwatch, right. And I fell in my garden and then my dog knocked me over. But what was both of those times? I had the fall, if there had not been anybody around, especially when I fell on my guard and I was on a side of a hill and I fell on a dry Creek, um, and hit my head and rolled over. So it wasn't so good. It was not a good fall. Um, my doctor made me go to the ER, I didn't want to go to the ER, but you know, they checked me out and make sure now I know I have a, uh, my brain's fine. So that was good news. Um, but I think that anybody who lives alone and anybody who's a caregiver of somebody with dementia should where an emergency response, either a necklace or on the wrist, because a fall or an accident could happen to anybody.
Speaker 2 00:23:51 It's not just people that are frail and have some sort of a diagnosis. It just is very common as we get older. So as in the situation where your spouse has a dementia, I had a situation many years ago where the well spouse fell. She broke her hip. The gentlemen, her husband, um, brought her a pillow and a blanket and he brought her water and he bought her food, but he never called for help. Oh, we think, we think by the time the social worker, this was in a senior community. By the time the social worker was alerted by somebody that didn't see them come out of their home for a few weeks. We think she was on the floor for at least 10 days. Oh, that's
Speaker 0 00:24:40 So sad.
Speaker 2 00:24:42 It's a very sad time. Had she had that bracelet she could have called for help, um, and got the help she needed. And she did not survive. She did not live past a few more days after being hospitalized. And her husband ended up with a 24 hour caregiver in the home. So that's a really sad story, but I think it's a story I tell to caregivers because they always think, well, I would get to the phone. Well, sometimes you're not near as a phone. And even when she was telling her husband to bring her the phone, we understand he was bringing her the channel changer of the television. Oh my. So I, again, um, if you're a caregiver of somebody who has impaired judgment, you need to wear emergency response bracelet or the necklace and, uh, all people that live alone when you're in your house and you're alone, you wear it. You don't need to wear it when you're out with your friends and stuff like that. But, um, when you're alone, I think that, you know, um, it's a good safety precaution. You do not want to be on the floor for three days. No,
Speaker 0 00:25:56 I want to cover something that you have a chapter on. And I think it's really important to, um, well, all of these things are, but it's something I've wondered about. You know, friends of mine who I think are being cared for by other people. And it it's elder abuse. Talk about what that is. How do you, how one feels like maybe they could tell it's happening and what do they do if they suspect,
Speaker 2 00:26:25 You know, there's all kinds of elder abuse. And every state has different laws on elder abuse, but every state has an adult protective services and they might call it something different. But it's, if you said that to the police department or senior information, they, they would know what you're talking. And, uh, there, there are laws to protect seniors from elder abuse and, um, people are punished severely. Yeah. The number one abuse is financial abuse and scams are increasing. Um, I have a participant in one of my support groups center. Dad lives on a big ranch and he's got lots of properties and people take advantage of him. And he goes around town telling everybody I have dementia. So you tell everybody you have dementia and the scammers going at old, here's an opportunity. Right. Um, but that doesn't happen a lot that people go around telling people, but, um, you know, they, they meet somebody in the parking lot.
Speaker 2 00:27:29 They help them with their groceries. They find a way into their lives as a helper, and then they take advantage of them. Um, oh, at one point I did a talk at a rotary club in San Francisco and a police detective said to me, you know, Linda, at one time, I didn't see much scamming of seniors, but now at least once a month, somebody gets a hold of a power of attorney and transfers the title of a property over to the scammer. And the seniors left with nothing because they sell the property and the seniors homeless. So that is really big. And so we have to, as family members kind of pay attention to who our family, older family members be friends, when you get that new friend it's stars isolating the parent from family and friends, you need does a red flag to bring in adult protective services and do a safety evaluation and make sure that they're safe.
Speaker 2 00:28:30 Um, physical abuse does happen too. Um, and you know, there is emotional abuse and, um, you know, the abuse of isolating and, um, you know, it's really quite sad, but it's escalating, especially with the scams, there's the grandparents scam. My mother was taken advantage of, hi grandma. This is Frank. No, hi grandma. And my mother says, is that you Frank, that's what the older person says. Right? And yes. And then, uh, oh, I need $3,000. No, I, I, it's more than that, I got an accident. I don't want to report it to the insurance. I'll lose my insurance. Can you, my mother never went to Western union and wired money in her life until she was 85. And, uh, it, wasn't Frank, you know, she asked Frank, are you going to pay me back? And he says, for what, you know, and that is a very, very common scam. I've done lots of public speaking. And I can't, I, I would say that 50% of the time I tell that story, somebody in the audience will say it, that happened to my mom or dad to, wow. That's just
Speaker 0 00:29:41 So wrong. It just makes you feel angry. Just listening to that, that person never had that. And I, I know better. I get scam calls all the time and I just laugh at them, but we can think things through. And we, we are of a different time, I think, and have the experience of knowing that, you know, idiots do this together.
Speaker 2 00:30:06 You know, if you're lonely, I was called into a situation and my client, she became my client after this, but she had no children. She had never married. She had a sister that died few years back that kept in touch with her. Uh, she definitely had a dementia and she was giving, uh, writing a check almost every single day and putting it under her doormat and a runner would come and pick it up. And the scammer I was there and listened to one of these phone calls. This scammer actually tells her to get the checkbook and who to write it out to, you know, save the butterflies or something like that. And he knew everything about her. How's your sister doing? How, you know, and, uh, how are your gardenias or are they afraid when you're fragrant or are you getting, you know, and they knew the same person was calling her every day. Uh, we found out that she lost over $300,000 that way. And when I reported it to the FBI, they said, told me his, they get a story like that every day. Ah, um, it's really quite sad. And I think as next door neighbors as adult children or nieces or nephews, we just need to be more present in those people's lives that don't have family and, and pick up on those red flags. Um, if we can,
Speaker 0 00:31:35 Can you talk about the difference? Um, I want to know the definition of a power of attorney and also talk about, you know, the difference between a witness and notarized. Okay.
Speaker 2 00:31:50 And this is going to change from state to state and, uh, you all in Minnesota, probably similar to California's laws, but the advanced healthcare directive is, has a power of attorney kind of formulated into it. And it's called different things in different states, but usually it's an advanced healthcare directive, um, and or a power of attorney for health. And then there's a power of attorney for finances. That's the one that's going to get you in trouble with property. So you want to be really cautious if you give that to anybody that is somebody that you really trust, but the power of attorney for healthcare and the one I liked the most, and there's a, um, different, um, document for each state is called prepare for your care.org, okay. Prepare for your care.org. And when you go into that website, it'll ask you your state and you just put your state in there and then you're going to get the document, this legal in your state.
Speaker 2 00:32:57 And the reason why I liked this document is it's in large font, it's in color and it has clip art. And that sounds like a silly reason, but it definitely entices you to read the whole thing. And I think it's a wonderful template to have that discussion that we talked about earlier with your parents about what they want and don't want not when they just have end of life, is that any time when they have a medical issue and all of us need to look at that, no matter what our age basically, um, because it really forces us to look at the adult dilemmas. That's somebody we name to be, our agent would have to make for us. So we need to make those decisions now and say, no, I don't want that. Yes, I do want that. No, I'd like to stay in my own home.
Speaker 2 00:33:55 No, I want to move to senior housing. You couldn't put all of that in this document and, and lots of other things as well. And then it takes, most of the states require two witnesses on the healthcare one, and it does not need to be notarized in most states. It just needs to be witnessed by two people who aren't heirs to the estate. Um, and I recommend that you have at least three people, if you can, you know, if Linda can't do it, I want mark to do it. If mark can't do it, I want John to do it. And you don't want to name all three to make the decision you want to one or one of them can make the decision based on your, um, your choices that you've made in this document. It does need to be, um, witnessed and in, in California.
Speaker 2 00:34:54 And I'm not quite sure in Minnesota, um, by the ombudsman and they have ombudsman's in every state that because it's federal monies that, um, fund ombudsman who are advocates for people in care settings. So if your parent is in a nursing home, not assisted living, but in a nursing home or an a hospital, you will need to have somebody witnessed that that is an ombudsman, or it could be an attorney to, you could bring an attorney and, and have it notarized that way. Um, lots of attorneys will notarize that document, but it's not necessary, especially in California. I'm, I'm pretty sure it's not necessary in Minnesota is well. Um, but when you download that document, prepare for your care.org and it was written by the, uh, regions of the university of California, uh, for almost every state. Um, it's a great document. Um, so that's that one and the durable power of attorney for finances definitely needs to be notarized by a notary. And again, that's, that's a scary document to give powers to somebody that could change the title in your home to them or the title of your car to them, or whatever, you know, get access into your financial institutions. So that's one you want to be very cautious about.
Speaker 0 00:36:28 So Notre, you do need, there are ones that you need notarize then, and if you don't have it notarized, what happens
Speaker 2 00:36:40 The power of attorney for finances, right?
Speaker 0 00:36:44 Ah, so if you just have it witnessed, it's not valid.
Speaker 2 00:36:48 Yeah, no. Yeah. There is no witnessing of the durable power of attorney for financing. There's only, uh, Notre is, it has to be notarized. The one for healthcare, you have two options, um, and you don't have to have it notarized, but these attorneys that do these documents notarize everything. So, but he, when you, when you print out that document, it tells you on the document, what you need to do to make it valid. And most of the documents also suggest, or I suggest you send it to your medical providers, a copy, you take a copy and you keep it on your phone. You take a copy and a lot of people put it in their glove compartment. Um, so you have it with you just about every place you need to go. Gotcha.
Speaker 0 00:37:43 I wonder if you would talk about, um, medical sharing of information, because I found that interesting that that can be really touchy. If, if somebody has something happened to them, you know, everyone kind of runs to that to see what's going on and to, to try to help, but they may not tell you anything or they may not let you in, um, there's a number of things that could happen. So what does one need to know about that?
Speaker 2 00:38:17 Well, that's a great question. After we just talked about the advanced healthcare directive, that's the importance of having that directive because that directive says how much information you want shared with the person who's the agent. You, you actually write that there, it's telling the medical providers that you want this person to make decisions for you. Um, no matter what, or you want this person to make decisions only if you can't make them yourself, uh, you want this person to start making decisions for you right away. So you, you put that in that document. And if it's in the document and you're in the emergency room, the hospital has to follow that. That is now a legal document. You've had it witnessed or signed or notarized. You've made it a legal document. Um, but as you were saying, it gets sticky right now. And because of COVID, a lot of people aren't allowed in the emergency room with their family member. Um, they're not allowed to visit in some hospitals. Um, I recently lost a brother of mine and my sister-in-law couldn't be with him the last day of his life, which is terrible. Um, she's, you know, he was sick and we knew he was sick. And, um, but to not be with that person, you love, um, at the end of their life, that was really, really hard. Hopefully those kinds of things are, will be lessened as more people get vaccinated. We're hopeful for, um, and hospitals have different policies. Um,
Speaker 0 00:40:00 So I want to stop you there just a minute, because I had a small disagreement with somebody and I, I kind of said, after reading this, he really needed to have this notarized or have it, you know, make sure it's, it's valid to w so you know what to do. We know what to do when something, if something medically bad happens and they said, no, no, it was witnessed it's okay. So let's be clear what happens if it's just witnessed what can go wrong?
Speaker 2 00:40:28 That's it, nothing should go wrong. It's still a valid document, um, in your state, look at the document. And if it says it's valid was two witnesses, you're fine. If the document says it has to be witnessed and notify notarized, then you need to do it. And because people are listening to this radio show of yours, probably the don't have family members that live in Minnesota, maybe they're in Texas or Oregon or New York state. We, we want to get the document from that state and find out what the laws are on that document. And again, you can go to the prepare for your care.org, um, and, and download the ones for the other states where your parent is. Um, and, and again, if your parent is competent and in, in the emergency room, and they could say, no, only I want to make decisions on, then you're left out.
Speaker 2 00:41:32 They have the right to do that. If they're confident, um, that's, that gets a little sticky too, because a lot of people with dementia, you already had a show on dementia or socially, very appropriate they're well-educated people, and they can fool somebody. Maybe they're not paying their bills, their taxes, uh, they're losing weight and they're not keeping their house up or their personal care up. And they have all the red flags of a dementia, but that the EMT and the emergency room staff, they don't see any of that. They just see this sweet, older person it's so kind and nice. This seems to understand everything they're saying. Um, and then, you know, if you believe strongly that your parent has a dementia and they're taking that, the parent is competent. You need to ask them to bring in a psychologist or a psychiatrist to do an evaluation on that person, because you believe that they have impaired judgment.
Speaker 2 00:42:36 So, okay. You, you always have to be an advocate. And if you don't have an advocate, find an aging life care, um, professional to help you, can you please explain the term palliative care, what palliative care palliative care is kind of a step before hospice, but it doesn't mean end of life, that the focus is on, uh, taking care of pain and increasing comfort and not about, uh, more invasive testing and treatments. It's more about, you know, I think in of my own mom who was in and out of the hospital, I think in six months, 10 times, and one of the doctors said, have you ever thought of palliative care? I said, yes, I have thought about it. Bring, bring them in. You know, let's go that route. We don't want to go to the hospital all the time. Right. And, um, and from there, it was quickly that my mother went onto hospice.
Speaker 2 00:43:40 So we weren't with palliative care, being very supportive for very long. But if your community offers it and sometimes they do. And sometimes they don't, it's, it's a nice place for people who are really old and you're not gonna choose a extensive surgery for them. Um, you know, or they don't want, if they've been clear about my grandmother said my bags are packed. When the train comes, let me get on. Oh, there was no advanced healthcare directive when she was at that point, but that was a clear message to us as her family, that she was ready to go whenever it was her time and that she wouldn't want extensive medical procedures, um, done, you know, you talk about, oh, go ahead. Yeah, no, you asked me a question. Go ahead. You
Speaker 0 00:44:32 Talk about in the book, caregiving burnout, Jess. Talk about what that is and how one knows when they've hit it.
Speaker 2 00:44:42 You know, when you hit it, when you hear yourself snap, but that other person and you go, oh my God, is that me? Um, when you are feeling sad, when you are crying, when you're not able to sleep, when you're losing your weight, weight, when you're not going for doctor's appointments, when you're turning down every invitation you're given, um, you're burning out and you need time off. Um, I did a support group just a few days ago, and there was a gentleman that said, do you know what, at the end of the day, when I want to watch a TV program, I'm so tired. And soon as I sit down and relax, my wife wants something and I just snapped at her. And he said, I didn't like what I sounded like. And I said, you know what? Don't, don't beat yourself up for that. It's just a red flag that you need to take care of yourself. And your four hour caregiver probably isn't enough. And when that four hour caregiver comes in, you're doing errands. You're going shopping. You're paying the bills, you're doing the gardening. You're not taking care of yourself. Add another hour a day onto that caregiver's schedule and watch a movie in the middle of the day for the chapter in a book.
Speaker 0 00:46:05 No, I do want to touch on this, the caregiver, you know, the, the, the additional hours or hour or whatever that you bring, someone in this always costs, unless you can get a family member who's good and gracious and will say, you know, I will, I will give you three hours a week that I come, or maybe three times a week, an hour, and, and kind of re give you a reprieve. But most likely you'll have to hire someone or bring someone in. And that always comes along with financial stuff. So how does one, what if they can't afford it? That's the been the problem? I think sometimes is the caregiver is so rung out because they don't know where the money's going to come from the pay for someone to help them. What can they do?
Speaker 2 00:46:58 Yeah. Well, if they're very low income or even middle income, you need to, you need number one, I talked about benefits, you know, checkup.org. You might look in there and put in your financial situation and see, maybe you're entitled to what we call in-home supportive services as a share of costs to have caregivers come in. Um, maybe you're entitled to some other kind of caregivers support in the community. Um, you know, reaching out to a social worker or a geriatric care manager, maybe spending an hour, uh, the da, you know, $150 an hour. I'm not sure what a care manager would cost, but, um, and, and just talk about this is the situation. What can I do? Well, maybe there's a group that does, you know, um, we have the village movement throughout us. Maybe somebody would come from the village and just sit with your wife and read to her why you take a walk or you go to a meditation class, they're volunteers, um, maybe there's a church or a synagogue that provides volunteers to do that as well.
Speaker 2 00:48:11 Um, when I'm working with a family and they're low to middle income and don't have a lot of resources, we usually, as you suggested, we put a plan together with, okay, they can afford 10 hours a week of paid care. They've got two family members willing to give three hours each. Um, they got the church to come in on Tuesdays and Thursdays to sit for a couple of hours. So we, and then they, uh, daycare program, uh, adult day health program, uh, where mom could go two days a week. So we, we is kind of like a puzzle. We put a lot of things in place, so that one person doesn't have to do it all. And, and sometimes it comes to it's time for placement. And that means new. She is skilled nursing facility where Medicaid pays for it, um, that the spouse doesn't have to pay for it. Um, there's lots of spousal impoverishment, um, plans there. So
Speaker 0 00:49:15 This topic is so broad. It's I feel like I could spend another hour with you on it's like, there's so much to know. So I want to jump to, um, what you need to know about choosing an assistive living or a place for your person. Um, I think there's a lot to choose from and can you give us some options and how one knows what's good for them and how it knows that it's a good place? Um, I will just let you have at it.
Speaker 2 00:49:45 Okay. Um, number one is reputation. So you want to start asking people in your community of what they think of, and hopefully some, somebody knows somebody that lives in one, and you could go visit that resident, you know, and, and talk to them firsthand before you talk to the marketing people. Um, I personally don't like placement companies, um, just because they're really working for the facilities. I, I am biased that I think that working with a professional, geriatric care manager, or even the ombudsman's office to get some suggestions of good places that they know of and have had clients in is a better way to go. Um, so, so you want to narrow it down to, okay, do I want a place that has more than one level of care? Maybe it's a couple and one has some memory issues and the other doesn't do they have a memory unit that mom or dad could go there?
Speaker 2 00:50:46 And the well spouse could stay in their own little apartment or, you know, so what are the needs, what kinds of needs do you have if you have a progressive illness, can they accommodate you as your illness progresses like Parkinson's or Ms. Um, can they provide your care for you, uh, for is hopefully all your life. So you wouldn't have to move another time, but again, there's change of ownerships. There's change of leaderships, there's change of executive directors that all affect the quality of care and every one of these facilities, but all in all, they all try to give a good quality of life. I have been working with them and in them for more than 35 years, and I would say overall, most individuals that choose that really do enjoy their life there, especially those that don't have a lot of cognitive impairment. Um, they get involved in the activities and the tours and the entertainment, and they make new friends.
Speaker 2 00:51:54 And, you know, they, you know, uh, one, uh, one lady that I helped move to assist. One of these assisted living, she says, I feel like I'm living on a cruise ship. So, you know, it was really fun for her. She, she was having a new life, you know, she had boyfriends and she had boyfriends when she lived in her own home. Um, so I mean, it became a new chapter, a positive chapter in that person's life. But I think most people are moving to assisted living when they have a need, they've had a hospitalization, they found a loss of a spouse. Maybe they're lonely. It's a good choice when somebody's lonely. Um, you know, so they, they choose, uh, to move to assisted living. And I think it should be a place. I always say that the executive director's been there for at least five years, you know, that tells you something, you know, that management is stable when management stable.
Speaker 2 00:52:56 That means all the care staff is pretty stable, too. You want to watch how they interact with the care staff? Are they kind to the people that work there or they ignore them? Like they were, you know, pictures on the wall or something you want a humanistic, you want a feeling of caring and love and in the community that you choose, you want to see people engage. When you visit, you want to see them active. You don't want to see everybody in their own rooms with the doors shut. You want to see people living their lives in this community. It's a community. Um, and, uh, the ombudsman again, can tell you about citations and problems and assistive living. Cause they try to visit them and stay on top of, uh, any issues that there are in these facilities. I always want to know about their emergency plan.
Speaker 2 00:53:49 Um, if there's a fire or something, what is their plan? How do they evacuate? Um, now with COVID, I have some new things I tell my families to ask about what will there be, uh, their visitation, uh, which was totally wrong. In the beginning of this illness, I saw so many people go downhill that were isolated in assisted livings. Um, it was talking about a prison. It was like they were in prison. Um, it was terrible. Um, so they've learnt, uh, and a lot of them now have either a small pods of people that they keep together like a family. So there's still some interaction. Um, and they've changed their way of operating during these quarantine times. Hopefully we're beyond that. Um, but we're not totally out of the woodshed.
Speaker 0 00:54:42 We're not Linda. How can people get your book?
Speaker 2 00:54:46 They could go to Amazon. That's really the only place right now. Um, bookstores can order them, but you know, right now it's Amazon and, um, they're print on demand actually. So, uh, you've probably heard there's a lot of back order when you order books that need to be printed before they're ordered. Um, but with my book, you can get it in a couple of days.
Speaker 0 00:55:11 I want to just give you a minute to answer a question. I know there's a lot of guilt. Sometimes that comes with caregiving. I didn't do enough. I didn't do this. I didn't do that. I snapped at her. I, um, I should have been more attentive. I should've, there's so many things. How, what do you have advice for the caregiver that, you know, they can help deal with that?
Speaker 2 00:55:36 Should I like to get rid of, should get rid of that word right now? Uh, join a support group. Um, and there are lots of online support groups that, uh, because of COVID, that's a really kind of good thing that happened. So get on a support group and know that you've always done your best. You always done your best with the tools at your hand. You know, if you didn't have the tool, you couldn't have used it, right. If you didn't get support from the medical arena or your extended family, um, you did the best she could. And I think, um, I, I wrote about guilt. I wrote about grief actually, um, in my newsletter this last month and about good grief and bad grief and bad grief is when somebody passes or has an illness. And you think that it only, if I did this, he'd still be alive or she'd still be alive, or they would be better or well, and it's not that you didn't cause it, you didn't cause that Parkinson's, you didn't cause that Alzheimer's disease or that stroke or that heart attack, you were just there because he loves that person.
Speaker 2 00:56:51 So you always have done your best. You always have to think that I've done my best. And I, I think that if you take care of yourself, you feel less guilt too. I need permission to take care of yourselves. You can feel less guilty,
Speaker 0 00:57:07 Gone so fast. I hope you will come back. I think we can use to touch on this topic, you know, more than once. And, um, I would love to have you back again in another year or whatever, and who knows what you'll be writing then. So, um, please feel free to come back and thank you so much for being on. I appreciate it.
Speaker 2 00:57:26 Well, thank you for having me and, um, be well listeners,
Speaker 0 00:57:31 You stay well, too. Goodnight.
