because you have egyptian christians who were inducted into the hallowed halls of whiteness like the woman who just retired from today show holder. you have lebanese christians inducted into the hallowed halls whiteness like ralph nader that how broad minded and capacious the united states is. but what about the muslims about the lebanese? i mean, as i said, a lot of these people know they need to imitate willie brown. they need to just fall down on their knees and apologize for all of their sins right now and i think that's a great place to leave it. thank you you. allwow. what an amazing.

this is just absolute really fantastic. your on tv wanting be able to know how many people are here because it overflows in every direction and we've got writers and political folks that actively and all sorts of people here because judy karofsky is a major part of our community. yes. one of the first women mayors in wisconsin and one of the great mayors in wisconsin. someone who's been essential to so many community institutions such as madonna, torres and others. but tonight, we're here to celebrate. what? she waited a little while to do her first book, this and last. well how well it does but this is a really important and hubert

humphrey said that the way you measured a country was how you treated people at the dawn of life and in the shadows. in their later stages of life. and that was such an important concept right because nations are often measured by their economies or by, you know, their wars, whatever. and and what really is is it a good place to live? is it a humane place to live? and we are in the midst right now of political battles that will decide whether programs like medicaid continue to allow people to have the care that they need as young folks, folks with disabilities. people who are aging and need a place to. and what judy has done is to go in and an element of this that is one that most of us don't really like to talk about that much. and the reason for it is that we're even ashamed that as hard

as we work, even if we're middle class or whatever, it is hard for us to care for our elders, it's hard for us to care for our parents, the people who've done so much for us because it costs so much and because the programs are so complicated and so disappointing. and so, judy has done one of the great things in journalism, which is to go at something that we are uncomfortable with and to go something we wrestle with as a society and to dig into it in a deepest and most personal and humane way possible. she's written an amazing book this elderly conduct, which i know most people have already bought a copy of. i hope people here will buy a copy of some. more importantly, i hope people will listen tonight to what judy has to say, because her journey as a journalist in the tradition of just jennifer and others is

to dig into an industry, to dig into an aspect of our society and to try and i think succeed in telling us things that we need to about making a name for a more humane and just america. so please. well i'm judy karofsky for the first event of what i hope it's a long book tour from. thank you, john nichols. and we do go back. so many years so the picture is this is my first time writing a book talking about my book welcoming people. so i'm just going to tell you what i plan do here tonight. first of all, i'll just say thank you. all around the room, people here, people who are here the night my mom died. people are here as i move to from facility to facility.

people who with her because she was pregnant, money in the years before, people had coffee with me every wednesday along the way. and but every one of you woke up. i'm also going to talk about my inspiration, inspirations for writing the book and the process of writing it, which is unique because i haven't it already and i'm not a book writer, but i suddenly seem to be. i'm going to tell you what the book is about. john already alluded to it's a lot of facilities assisted, living facilities and then hospice. and i'm going to tell you who the book is meant for, because here we all are in this beautiful bookstore, and i hope molly is still. thank you, molly, for welcoming tonight. this is just a couple of blocks my house. and as soon as i heard saw or

read that the bookstore was opening here, i may have done the first facebook shout out about this place. i'm going to talk why the book should be read by the people for whom it was written so. my inspirations inspirations in not in the night late 1970s, a woman in oregon suffered a stroke. she was 55 years old. her daughter, whose name was karen brown wilson, was then a student during theology. as luck would have it, her mom was institutionalized after the stroke at 55. she was an award. she was told when she could eat, was told when she could get up. she was told when she could to bed. and she received medicine on schedule. and she finally turned to her and said, get me out of here.

karen was a graduate student and she happened to be married, a gerontologist. well, look, so the two of them set out to create a different model, a housing model for elderly people, aging people who needed help didn't need to be institutionalized, didn't need to be in skilled nursing facilities to monitor 24 hours a day, but did need help. some activities of daily living, walking, perhaps eating, taking meds. and they named assisted living and then in 1983, a four they opened their first facility in oregon. 112 residents, 100 employees is now worked. as time went on, they opened another one and another one and another one. and the time karen brown wilson exited the biz.

she owned 184 facilities. she's an states and she managing 3000 employees. so by that, of course, assisted living had become a business it had become a big interstate. and of course, they grew because the population was the demand was there. there was some of like a couple of my real estate colleagues here. and we know they didn't even have to do market studies because the but the demand was the people kept getting older and fortunately they were getting and remaining healthy because. that's what we did. we were caring for them. in time, in order to grow this business. they included. i picture board meetings, decisions about efficiency, decisions about, cost containment and karen brian wilson came understand that the

task task became more important even than the. they were. there was no federal regulation. so this interstate business they were they very few safety and there were no safety regulations if there were any. they state the states did adopt the definition of assisted living. wisconsin did it in in the nineties, fred. perhaps were there. i remember this and you were there, but perhaps you it's and the and each state had pretty minimal regulations and in fact state of wisconsin has a maximum a maximum of 3 hours a week of health care a resident in assisted living. these are not medical facilities facilities. i do atul gawande in his book being mortal, which i'm sure is

somewhere on the shelves here talks about karen brown wilson. he quotes her as saying i love assisted living i love assisted living. he says a twice. but then she says, assisted living doesn't work. and that was kind of the end of the and it was the end of the story for me. it's the end of what i include in the book. you all know about this book just because i do, i do at least include that history. but yesterday morning. not because of this, but maybe because of this gathering. i thought whatever happened to her, why do we not hear about karen wilson any longer? and so i found this a company brown wilson started assisted living concepts, was sued by shareholders and investigated following several resident deaths nationwide. that's a i not my job and somebody else will do it to

investigate. i mean, that's the story. that's why i went probably not hearing about her any longer. although she, the executive director of a nonprofit that focuses on communities of frail elderly low income frail elderly. so she's still doing good but something has happened and what probably happened was that she started a business brilliant concept as a unique concept. and doing no regulations oversight. i have said that so many times said to me last week they thought when i said there was no federal oversight over assisted living, that that it was talking about cameras in the room. and i was sort of but that's not it. we really had nothing. it was so it was noticeable during covid because there were no there was no data, no statistics. deaths in assisted living. a nursing home was yes. and they were abysmal, awful as we all have. and i can remember what those

were but no statistics on assisted living deaths because they had no to report to event really by may of 2020 they did volunteering information but i want to say that we probably will never know what happened in assisted living during the pandemic. so karen brown wilson remains an to me because she invented something unique and something that was needed and something that my mom and i needed eventually. and my other inspiration was of course mom and a lot of people in this room knew lillian because she spent many years after she moved from florida. she spent many years circle aiding in the community in the living and independent status. she taught joke. she appeared at the ivory thursday nights. she would say, quiet down, everyone. and she had her own unique way of telling a joke. long jokes. and then she would get to the

punchline. then, like a true comic, she'd have another punch line. so i was looking for pictures of her to pose for mother's day. i think the one i came up with was pretty my mother and my dog. but i came upon this one, and it was from her years in assistant and excuse me, independent living a halloween celebration. and in the picture are, six figures, five of them were dressed as witches. there was two black, two witches dressed in black. there was witch dressed in blue. there was a brown clothes wizard. i. second person from the left. go, go, girl. and lillian was dressed in high white boots. long, blond hair and a short dress. that was. that's who she was until the time came that she was suffered a stroke. we were at a lot that was in the hospital with her. and i hadn't even about our next

steps, but our next steps were outlined for us. my mom went to us, went to an assisted living facility, and. between september 2013 and april 2018, four and a half years. my mother, through six different assisted living facilities and i do not recommend to anyone but but in each facility to the either safety was questionable the food and nutrition was questionable. medical attention was questionable there was abuse. we talk about i talk about abuse in in the book those abandonment days that she spent a sitting by herself in the hot sun of a window looking at a garden that really was no longer garden. and she loved gardens, but the weeds grew up. who cared? because these were just people who put aside by the window of

what used to be the garden. she was cared for and there were times that she was well cared for. but there were times when i'm almost embarrassed say, but i'm happy to say that i had the ability move her to another place. and it was really difficult to find alternate spaces. i mean, i kept limiting the population spaces. assisted living is a business assisted in this county. used to be the it used to be that there were far fewer assisted living facilities, nursing homes and david walberg, who's now left the state journal, wrote several articles about the shift from a preponderance of nursing homes to nursing homes closing. maybe some of you of us are aware of this going out of business, but assisted living facilities keep growing. they keep growing because they

make money. make money on the growing elder population. and if i haven't said it before, let me, say it again. no federal regulations. so in time, my mom care was was we added it by hospice care. it was supplemented by hospice care. and i discuss that in the and i learned this i learned that hospice is also a business. hospice is not the charity that we want to believe in. it is raised to me last week. hospice is a promise, but the promise is fulfilled by the connection to medicare every thing that is supplied in a hospice. well hospice service from the wheelchair to the medic medicines to the bandages to the

incontinence supplies. all of those are supported by medicare. medicare reimburse? mrs. hospice facilities, please be aware of that. and i'm here to say and to understand and there are people in this room who i shared stories with as. people were accompanied in their last days by hospice attention. and i'm as happy, as glad and as relieved to hear those stories as a person could be. but that's not what happened. us. not does medicare reimburse hospice for all the and the employees. the nurses. the doctors, the social workers. the grief counselors. hospice is audited and are audited. and they're concerned about being audited. and because are they maintain a six month rule that's the

medicare regulation. so unless a person is certified determine to be going to die within six months. how can we do this? how can they do that? hospice will discontinue and that's if that happens to my mom two times the first time and bonnie was with me on the days that i was told two times the first time we were able. but my mother became sicker actually what happened and so hospice did not leave. the second time, when my mother was 99 and a half, 99 and a half, they said she was not going to die within six months. so the last few months of, her life, i was the if i wasn't already, i was the caregiver. yes. and so the inspiration when we

we met my mom, the go girl in the lineup, wizards and goblins and, witches and and as i said before, the person who invented the concept that we we need to improve on. we need to determine how that can be. some rules, some regulation some federal oversight over. this creation intended to do what john said, allow us to be the kind of civilization that takes care of the aging. so i'll tell you a little bit about how i wrote the book, because i somehow it got written. i used to keep track of my mother's jokes. i used to keep track of the funny things that happened to us. and they were and you know, i started to take to take note of interesting that happened along the way for calls to in the

middle of the night about false. as i said i'd come in some days and find her abandoned and find seven or eight of her co residents lined up in front of a tv program she'd seen so many times before and really did not want to see again. but i did writing and somebody around the time that my mom was probably worthy of hospice again and not going to be living much longer. said to me, make sure you a copy of her records if you take anything from this, remember that i did have a copy of her medical records and i could go back through them and keep the chronology of events in place. then i had to market the book. i wanted it to end up like this in here. and i had to start writing proposals. i wrote one to john nichols when the book was really not even a book. it was just it was just a

proposal. and said to me what he said to you do you intend to be the jessica medford of assisted living? that's. and i said, no, that was never it was never my intention. my intention was to start discussions, to have people share because the people who have stories i don't like to tell you really don't want to share and we needed to share, didn't we? during the time that i was looking for the market, the agent or publisher was going to bring this to reality. this is what i did every night. i put title page and the table of contents under my pillow and i did that for months until one day last summer when i received the magic email that we would like a manuscript and. then they didn't talk to anybody for a full day because i just

couldn't believe it that i. i wanted to believe that i had trouble believing that was happening. and then we started editing and editing people and to prove it. the original title, the book, the working title was a $10,000 grilled cheese sandwich. maybe some of you might know that i was working on that for a very long time. i thought that was pretty funny but wasn't funny, was that? that's what my mom was eating day after day after day. and was paying more than enough for her to have a better diet. but she her table mates wanted to have at ease a palliative to them and an easy to handle sandwich. i did understand, but i never thought it was nutritious. although she gave me a lot of tuna fish sandwiches. i was growing up, but she never varied that diet. but that made sense to me to see a little light in the title.

the day that i finally to the publisher, my wonderful publisher, lynne elizabeth, who i hope will get see a copy of this discussion, said to me as we're finishing the conversation, we almost didn't even open your email because i had titled it. the $10,000 grilled cheese sandwich. and she said, you know, it sort of sounded like publisher's clearinghouse. so i called someone who hasn't shown up and if you ask me later, i'll tell you who it was. someone in community and told him i had a book. the concept and a publisher. we needed a new and he came up with 20 brilliant names and the one that the publisher targeted was this elderly contact and it has a ring to it we think doesn't like it all. the autocorrect keeps on but just everyone in this room should put it in once or twice day. i do it a lot until the google people understand that we're

pointing that phrase. so i did write a book. john, did you move my marker? you didn't. oh, good. okay. so my plan was to at this point read a couple of chapters but i'm not going to do that. i'm just going to read basically six lines from page 132. and the chapter is care crisis. so for us, my mom and me, the dangerous fly in hospital slash assisted living slash hospice trifecta because that's what it had come to those who were taking care of her three entities hospital assisted living, hospice, the dangerous floor was the medicine order and distribution web. on the night my mom died, i realized i should have been more wary of the intricate community trap that could collapse us, leaving her morphine.

the common end of life prescription that would have assisted us through merciful passage. so there were a lot of people involved in her care. didn't always out. i told you. i tell you who this book was written for. as timekeeper how am i doing little on. okay, sorry. it's still hard for people to move the glue together by now. it's as simple as this. one of the agents said to me, well, as i was submitting proposal to her, do not tell me that this book is for everyone.

she said, every proposal that we we asked author who's the book for you all shaking your heads, they say it's for everyone. so i came up with a primary market and a secondary market. and who would be likely to read the book, but the truth, every one of us, every one of us who was here today and, those that we know, every one is going to be the recipient of care for the aging, the of an aging facility. and if that hasn't yet, every one of us is or will be responsible decision for people who will be receiving care for the aging or living in an aging facility. so do the math since the book is everyone i already had publisher. i can say that.

and why should people read it? there's no solutions. this book, a very kind person in this town. bill leaders wrote a that alerted me to yesterday because it has appeared in the progressive icon dot org. i think it found a flaw in the book the flaws it was that there's no solutions. we're here to talk about this. my intention in the beginning was to as i said, had discussions along the way and me, nancy, i'm not calling you right now, so i don't it's got to be someone else. in the after after a while, i realize that we were i wanted to be talking to policymakers in those who have. and this is my friend is phrase turn of words.

those have the ability and the responsive ability to make change to help us create safe, affordable assisted living facilities, homes, the homes that karen brown wilson was trying to create. but we have to take it to the next level. and after her, the book was in this in the late fall. a lot of things happened in our world. a lot things happened in our economy. and as john alluded to, a lot of things continue to happen that we don't like and. we're really scared because i can sit here and say, we need more federal oversight, but who will do it? it will happen. it will happen if we keep saying this to happen. this is our call to action. so i was going to tell you about a senate committee that met last

june a year ago january, which included a young senator named vance and another democratic senator was the chair. casey from pennsylvania. and thank you. and someone we all know quite well in this town, thanks to chicago senator alice and both casey and spoke after the meeting a year ago january and said and said we need to do this. we need to oversight rules have no rules. and of course, in that hearing had been representatives from the industry. and you know what they were saying will cost us. but they're going to cost us more. we all know this if we don't have them. so. everything happens day after day. yesterday i learned about karen brown wilson. today at 5:00 in the morning. how what time do you get up, melanie melanie sent an email.

you know, how how what? she gets on it because of course your hospice and palliative care today newsletter reprinted the review that bill leaders did yesterday and for those you who want to link to the review i know interest me i'll be glad we've put her on facebook already, but i'll be very glad to send it to you. so i need to end with this. here's the industry, the palliative care industry. that means the hospice people and this is what the editor wrote this morning, hot off the press after printing the review the editor wrote though printed news typically lifts up the good, compassionate moments of hospice care. most all of us have experienced negative accounts professionally and personally. well, this book is sure to give significant insight.

perhaps the most important lessons are waiting to validated. you own family caregivers employ an excuse me your own family caregivers employees and volunteers. what stories are behind your lower than you want? hospice course caps must be the organization hospice scores. the editor continued. dig deeper. may we all listen, learn and improve care that's in the industry so this is not an exposé this is a cry for help so i'm really hopeful that all that was heard and i hope was heard both inside will be heard inside and outside. we're going to take this as far as we can it. this is a humanitarian issue. it's a nonpartisan issue. it's our issue.

so thank you, everybody, for being being. i love you.

tonight. i'm very excited to welcome corrina barrett lane celebrating the release of secrets of the killing state the untold story of lethal injection secrets of the killing state pulls back the curtain on this clandestine punishment practice, presenting a view of lethal injection that states have worked har h