>> being here. [applause]4:pu >> we will sign books in a few minutes. thanks for coming. [inaudible conversations]zs9 >> for more information visit the web site brooklyn book festival.org

meryl comer talks about her experience as the alzheimer's caregiver than the next the story of a tragic car wreck in 22 texting while driving for zero hour programming continues at 11:00 p.m. on vaccinations. it all happens next on c-span2. >> meryl comer president and ceo of the jeffrey bean alzheimer's initiative. reporting on the generative brain disease affecting 5.4 million americans. two-thirds of patients are women and 75% of care is provided by family members in their homes. this is about one hour. >> i am one of the managers here at politics and prose and i welcome all of you

we have many events here at the store. things go on nearly every day. sometimes multiple times a day. if you are not already plugged in, connected through the e-mail list or checking the calendar on line, or a male subscriber we carried you to do that. stay informed so you can stay involved. we consider ourselves much more than a bookstore but community space that wellcome's communication, author talks and glasses. thank you for coming. meryl comer an award winning 30 year veteran reporter and producer and a talk show host among the first tv newswomen to specialize in business news as a release to public policy with a nationallyííy> syndicated debae

show its your business broke shako anchoredéí[j nation's business today. she is now president of the jeffrey been foundation and alzheimer's initiative that she is probably providing 100 percent of the net profits of that in, dedicated to the foundation along with the work of cancer and wounded four years and protection of women and children she has provided testimony before congress served on the 2008 study group and two times on the alzheimer's association and a founding member of u.s. against alzheimer's and the co-founder of women against alzheimer's is at work. alzheimer's affects 36 million people worldwide. her husband was the chief of

hematology and oncology at the nih when he was diagnosed with early onset of alzheimer's at age 58. ms. comer chose to leave her television career to become a caregiver for her husband hospice. since the 1996 diagnosis she is an outspoken advocate for greater awareness and for the rights of caregivers and patience. her book "slow dancing with a stranger" lost and found in the age of alzheimer's", she details her life as the caretaker and advocate the emotional and financial hardship and the limitations of long-term facilities the story of courage and hard work. to enhance the public conversation she has come to share her book with us today.

meryl comer. come on this glorious day the last day of summer. i am touched the issue is important to all of us. i would like to do a survey -- survey i am much more interested in the audience than myself. how many have a family member or relative with this disease in the audience? how many have a friend or colleague whose loved one has been affected? a family member or friend in a caregiver role? are you concerned about a loved one or yourself? raise your hand for:are there any doctors, lawyers politicians in the audience?

good. [laughter] we have a good conversation. this is a very special audience because you are a gauge of around the politics and the c-span audience. this is one of the most important things i will make on a book tour. this morning i checked to see how many books are written on alzheimer's. 11,000 books. that prompted me to thank you really need another book on alzheimer's? audience i thought i'd book is in is not in case you have not read it. i ate look at those thousands of authors who have written books to loved ones to honor their memory memory, to speak spiritually how to live within the

disease. if you recall that has been around for very long time. even those growing up in that space had to help people live in the moment with thembfkñ disease with no cure you have to live in that space this band of a diseased kim last between three and 20 years and i am< hen early onset victim and we can get into that issue later. but most of the book that i have read cannot keep up with the idiosyncratic twists in terms of how each of us is. we are different personalities and it is very hard to write the book that will tell you how to manage a loved one through this

process. but i couldn't write a book that accepts the accept the status quo and i have great admiration for those who help others live in this. because this is a disease that will ravish our generation as baby boomers and create an untenable border and on our children and i find that unacceptable. when you put yourself out there as an author, you really put yourself out there as an author. i also believe, and the reason i was willing to write it, it is a shout out to all caregivers because caregivers are the keeper of the secrets and we know the details. but most people don't want our details.

so we are very quiet and we believe that it is our responsibility to protect loved ones dignity. and we do that very well. we do that by hiding loved ones away so you never see what the disease really looks like. it is very painful to see a smart individual producer and totally dependent upon you were someone who can't remember who you are and i think that that is one of the most dramatic things that happen. and because this is such an important audience, i thought that i would like to share with you some of the latest statistics. you and everyone you know will eventually be touched by this disease but living with it doesn't need to be so cruel. 50% of people will develop some form of dementia by the time

they are 85 years of age and remember that 85 years old is the fastest demographic growing in the country and also, by the way, predominantly women. so this is a huge issue. and i will not go beyond 20 or 30 because politicians can't get beyond one year. we will have 76 million people suffering from this disease. and the impact is growing. 44 million victims worldwide, 10 million baby boomers and $1 trillion in annual costs to care for loved ones with this disease. and this is what we view as the crisis of our generation of children. we spend a great deal of money

annually on this disease and if you look at the bottom, the little red line, less than 1% on research. so we spent about $9 billion on hiv and aids, cancer is around 5 billion a year and less than 1% when we had 76 million baby boomers turning 65 at the rate of 10,000 per day, 4000 -- 4 million a year for the next 20 years. the youngest baby boomers turn 50. is anyone here younger than 50? because i would like to talk your generation as well. and this just came out from a merrill lynch study done in conjunction with age. more people now cited as a serious health condition of later life than cancer, stroke, heart disease, diabetes, and arthritis combined.

and the most worrisome disease, if you are 55 or over, it is definitely alzheimer's. forty-five to 64, 18 to 44 is cancer as well. this is the most worrisome disease later in life. but what is most striking is that it's not just baby boomers that are worried. it is our children. and our children are watching us take care of our parents, looking at the wear and tear and what it is causing with their dreams and dreams that might be put on hold and saying, is that our future? this is one of the first times that we are beginning to understand how infectious, although this is not a disease, how infectious it is to the

family. for those of us that have spent a lot of time in this town, if you go back 20 years, the debate with social security was going to create the intergenerational rivalry and this time it is going to be alzheimer's. and this tells you how it affects the brain. i'm sorry? >> okay. it's too good not to do. okay, we just lost the video here. sorry about that. here it goes. and we are looking for sound.

>> it comes on gradually as to abnormal protein kill brain cells. and they start here in the hippocampus, a part of the brain where memories are first formed. and over many years time, the plaques and tangles slowly destroy the hippocampus and it becomes harder and harder to warm new memories. recollections from a few hours or days ago that the rest of us might take for granted are just not there. after that, more plaques and tangles spread into different regions of the brain, killing cells and compromising functions wherever they go. this spreading around is what causes the different stages of alzheimer's. from the hippocampus, the disease spreads here to the region of the brain brain where language is processed.

when that happens, it gets tougher to find the right words. then the disease creeps towards the front of the brain where logical thought takes place and very gradually a person begins to lose the ability to solve problems and grasp concepts and make plans. next, the plaques and tangles and be the part of the brain where emotions are regulated. when this happens, the patient gradually loses control over moods and feelings. after that the disease moves to the brain where it makes sense to you that it sees and hears and smells. in this stage, alzheimer's wreaks havoc on a persons senses that can smart and transfer hallucinations. eventually the plaques and tangles erased the persons most gold and precious memories which are stored in the back of the brain. near the end, the disease compromises a persons balance and coordination and in the very

last stage, it destroys the part of the brain that regulates breathing. as well as the heart. the progression from mild forgetting to death is slow and steady and it takes place over an average. >> we may need another power source. [inaudible conversations] >> that is what being alive is all about. the bottom line is that what happens is that this is not a normal part of aging and it is a neurodegenerative disease that is always fatal. twenty years ago when my husband got the disease, there were no disease modifying drugs whatsoever except one or two to deal with symptoms.

today, there are no disease modifying drugs except the four of them that were available at that time. when my mother became ill with the disease as well, it became quite obvious to me that this was -- what was going wrong to why would people not be responsive and understand and be offended by this disease? what i realized is that people never saw the disease because we hit our loved ones away and i need to tell you that the caregivers are the keepers of the secret and the only reason i wrote this book was to unlock a conversation that has been hidden away. and so for those of you who may not been able to be in the back, how many of you are worried

about being a burden on your family? and losing dignity, being more isolated from friends and family. as well as not being able to do things that you enjoy. as well as health care costs and related expenses, being in pain or discomfort. dying and death and quite frankly, after spending 20 years, my husband and those who define yourself by your intellect and who you are, this is not a disease that you want to live with or impose upon family. the idea that you can control what happens to you with this

disease, forget it. my mother, this disease slips over you as you saw the video and it flips over you in a way so that you are in and out of reality. i have my husband's copilot and his guardian and my husband has a known who i am for the last 12 years. but he knows my touch. and i have to be persuaded that he knows my touch because i lead the team and i do a 12 hour shift not every day for my husband bought for my mother as well. and somewhere deep you have to believe that you can reach a loved one in this space. a "washington post" reporter said that i said i lost my prime. well, i said it just about that way.

and he said that there seemed to be a bitter overtones that you cannot take careful of one for 20 years and be bitter, it would eat you alive. you have to find a place where you can help a loved one in this state. research over these past several years have gotten better, but it has not filtered down to all of us. art therapy in music therapy, it's all wonderful, but it only works in a very small period of time and then you have to let it go. if you fight this disease, you will be destroyed along with the victim. what i mean by that is we all the pallets of care. we played whatever strength they have and when they can't do it anymore, you have to let it go. and i beg you to let it go because it is too frustrating on your.

if you weren't persuaded this is an important issue, 50% greater risk for this disease -- i'm sorry, we are having some problems with the slide. if you're overweight or have a metaphorical disorder, depression, diabetes, any type of addiction. you are 50% more likely to get this disease. does sex matter? this is a challenge that we ran globally and we asked that question. do you remember cardiovascular disease? everyone assumed it was a man's disease and it turned out to be the biggest killer of women. we felt that it was important to ask that same question. differences matter and that's one of the reasons that we ask that research question.

and now that is becoming a bigger and bigger issue issue. think about what they are learning in differences of how women respond to pharmacological substances versus men. we must tease these differences out. we havedi >> we must get these differences out. we have deliberately created an entire network that respects other ethnicities for african-americans against alzheimer's, latinos , clergy alzheimer's, latinos, clergy , researchers, we need to come together as networks to raise our voices that this disease is unacceptable for our future. the reason it is such a big women's issue we outnumber men. we are more prone to get it but the science does not know why. they know that women

progress faster than men. if it is on your maternal side you are at a higher riskyz5= for getting the diseae two-thirds of the care givers in this country are women. it is unpaid care.[tn 70 percent of families take care of loved ones at home but typically there is an episode that makes it impossible to keep aq:bvñ loved one at home. the caregiver gets sick young children are endangered by the behavior's and that is what prompts institutional a station in the country. but in our case my husband was a physician, a chief of hematology but physicians are the worst. [laughter] he was in denial all the way

into the disease which made it more difficult. my husband maintains his brain he was a long distance runner very tram six-foot languages, 200 published papers but it did not matter. that is the most important point as a generation it is the uses or abuse that mentality but i would love that. i tried that every day. but we are in serious denial. that is what inhibits us to have the conversation we need in this country about thiçt ñ disea-"r this is the disease of our generation. we went to the moon. 76 million of us? the python defect 76 million are transformational when we

want to do something. and why aren't we in arms about this disease that will destroy our families, our lives, and burdened the next generation? in denial made my has been very difficult to take care of. and smart people hide for a skills go last i could bathe and shaved and dressed in taken to a reception in washington and everybody is so involved in this town town, and nobody noticed. if you keep moving nobody noticed. my antenna are up every time i go to a reception. the woman who goes to the buffet and doesn't know what to pick up for the husband to says would you check on my wife? she is in the ladies' room for growth or spouses to

fill in for each other in conversations when they just returned from a wonderful trip in one of them does not remember where they were. the creep of the dizzies is everywhere. everywhere. but we buy into the denial we do not want to see that we are about to live with. go back 20 years. 20 years ago diagnostics were not as good as they are today. today you can take a test that whether or not you have a high risk. how many of you would like to know? i need to know because i feel of what it does to the family circle it is always too soon before it is too light -- a late. but do you know, if you put

your life in an order so your family doesn't have to guess about end of life issues? the columnist from boston has the group called the conversation project. i direct you there because you can download all of the forms you will need to have that conversation. my husband left me with no road map. although i do know that he would have considered this living by any stretch of the imagination. some who are here who'd do my has been professionally and they shake their heads. this is a very cruel disease. the doctors did not want to diagnose. a doctor to a dr.? ida doctor's wife so i do respect their time.

they disappear and come back no growth abnormality is what i learned as i detailed the journey in "slow dancing with a stranger". i was ignored. totally ignored. once ignored i was his victim. i was denying my has been access to things he wanted. try to take a portion away from a 56 throat man. -- year old man we wait too long to give a loved one their independence anticipate and anticipate her cry went one night to pull the plug on his car i don't understand foreign cars but i pulled it never was there and a lot to the garage door and for five years my husband said where is my car? i said it is in the shop.

every day. he would ask where is his car? that my peace of mind is independence ended when he might endanger another human being i could not live that i was not proactive to encourage anyone with a loved one we want to give them there last hurrah for as long as we can but always remember the people around them and who they might endanger. when someone wonders away in that very widely in their space, my heart tells me that the family waited too long. and they have lived into the denial. and so a little old lady went without her keys.

i don't remember my daughter's wedding, she might say. .. no shots below the waist defy and bathing him. this is the story. >> i call myself a prisoner of alzheimer is, i am an extension of his disease. i need some help to speak out for both victims because they have no voice and for caregivers. >> this is how meryl comer begins each day.

crouching in the dim morning light to empty her husband's urine bag. that accomplished, she removed his catheter and helps him out of bed. >> i will swing your legs around. >> in a moment she will get one of in a moment she will get the occasional fleeting acknowledgments that he knows she is there but not aware she is his wife and a familiar presence. the 70 year-old husband is in his 12th year of alzheimer's disease and entering the final phases when most normal human interaction see suzanne patients complete the withdrawal. as devoted as she is to caring for him she is now in

she is like many across the country dealing with this untreatable and incurable disease+teñ pro. >> it does not keller -- care what color you are or how much education or how much money, it will destroy there may exhaust their financial resources but it is like alzheimer's disease the caregiver requires help as well. but meryl comer was a long way from that when her husband fell ill. >> hello as a tv newswoman she would interview business leaders and political figures and presidents. divorced from her first

husband with a young son she married in 1980. at the peak of her prestigious career as specializing in blood related cancers at nih in the mid-1980s he was diagnosed with early onset,[q alzheimer's and had to leave nih. >> meryl comer quit her job to become his full-time caregiver as often happens he has also become paranoid and delusional and occasionally violent. >> if it feels as if you are attacking it. >> it is not gradual

dementia it goes in another direction that is frightening. and it is terrifying. >> i wrote this book but it is really not about me is my story because there are 15 million caregivers just like me. think of the families who have come back with post-traumatic stress. long-term chronic diseases, i wrote what they are afraid to say outloud. i was willing to do with only two start the conversation because the care givers are the keepers of the secret. i believe whether optimism optimism, trust me i see pain everywhere not imperative that mine is bigger but i just see the

pain. and it breaks my heart for young families with children with disabilities and the young men and women. to start a conversation to with this dementia we're on that trajectory for alzheimer's and understand it was the most popular form of dementia. so there is vascular from stroke and many areas. it is all horrible. dialogue, the gentleman over there? if you would come to the microphone has offered to read something for your attention. >> i read your book.

i'm a psychiatrist in washington. i and many people with alzheimer's disease and i was very touched by this book. i just want to read two pages to what meryl comer showed us of that interview the life of party on the pbs show. it goes to the question that she faces and to ask yourself as you read the book. why? there are two pages because that the end of the book people came up to her after seeing that show that would veryukxy insightful. to say the wealthiest man in walking down the street to say your story was hard to

watch. too bad your husband doesn't know how lucky is. i don't think my wife knows but i would be afraid to find out but he turned and walked across the street before i could respond. some recognize that lack of sleep increases sleep of dementia. be careful not to become the other victim. i smiled. i had been up all night. at the dinner with scientist i had asked please forgive are you doing when you do for your husband out of love for just trying to do the right thing? i must have looked perplexed because he quickly added i struggle with this question myself which is why i asked for:wife was diagnosed three years ago. the woman i love is becoming

less and less the woman i fell in love with and married. i fell in love with a person, not a body. i ask you because you had almost three times longer to think about it. i also ask you because i believe you will tell me what is real, not to what is correct. he deserved an answer now was not the time i offered him my business card in whispered to him to call me.í]) most people i met i did not know they contacted me out of the blue. they both admired me and admonish me to sacrifice my career. but the toll in had taken, women would e-mail me saying i was brave but.fa1ñ she would draw up -- draw the line to kill for her husband for chromo said they did not

plan to care of their spouses at home. i was going over the reactions when one day a woman called me to say to physically needed to meet. over breakfast she confessed she was struggling to get both the husband and herself through the early stages of this diagnosis. in early stages of the voice catching i saw you on the news hour program and want to do here when she would say next few minutes after silence i cannot do when she confessed provide do not want to be like you. before she gets a new war i stopped her. amid all my uncertainty how

to move forward i finally space wanted to say. and i told her i don't want anyone to have to be like me. >> that op ha wide range of conversation. but would you do for your spouse or would they do it for you? what was most interesting to me is i was so intent on then being offended on what happened to harvey but what i realized is they were watching me. faber runnings the numbers 24/7 and the toll on me. what disturbs me is i was one of the first generation of women in the workforce. i had no options.

i was told he was too dangerous to bring home. no facility would take my has spent not even $100,000 understands the cost of care around this disease. but when i wrote the book realized they were watching me. 20 years later the average caregiver today is 48 years old in the military is 28. women today are being forced to do exactly what i do leaving their careers careers, having to take care of their parents or loved ones because they cannot afford it, and they have to do it at home this is a huge problem.

caregivers are getting sick because of the intensity of care and now they're six times more likely to get dementia because of the care we are suffering our own form of posttraumatic stress. how many are willing to raise their hands to say that is unacceptable? the very first personal conversation of what you are willing to do or what limits is a very personal conversation. my husband was restrained in the hospital i space any facility he was over medicated i could not live with myself as a human being knowing someone i loved was restrained the only way i could do it was to do it myself and through managed care. the doctors don't like to

diagnose because they can treat and i feel they do a great disservice. but aside what we can manage j. cardiologists who don't like to tell their patients because they don't want to depress them. give them the opportunity to put their lives in order to drop out of work live their life and quit their jobs because therenimj is no way back. the idea with a little more exercise and i know we tried to date there is no empirical evidence that this will save us from the disease or the mediterranean diet or even more sex. but it will not save you from this disease. i showed you the numbers less than 1% spent on research 500 million of the epidemic headed our way

globally. we are one of the last countries really paying attention to what is going on. a huge issue in china, japan , western europe , people try to create dementia friendly societies. who was on the front lines as the first responder? the caregiver for the we make the assumption there well.fcqá"tiup)e getting sick tg care of our loved ones. they pay lip service to us and that should make some of you upset. i wrote this because i don't want anyone to live the life i have lived. i made my choices then and believe them or not i have had reporters second-guess why i would do this. but if you see this tizziesqe6ñ

up close there was nothing left for me to do.:11xz because of early onset they hide out big apple, it -- the hippocampus goes into overdrive they fight to keep control as they lose control. the struggle that you have the drop-off is very precipitous because they fight so hard so long so it is not the soul progression but something more precipitous. doctors say those as early onset do not last long but i in"r my 20th year but the doctors don't know. they all went to west to telesco when they said to me harvey cannot last a long time a couple more years maybe. what was my reaction?

what do we do? we are brought up to be stoic and tough it out. we got through the hard part we were trained to internalize the pain and swallow and lived in it. how you manage pain is important the thing that saved me is i became an advocate. it is so boring. [laughter] it to be getting older but now ionosphere less. i do notk, want my son and his family who are my antidepressant of choice to do for me what i have done for my husband and.'mó my mother with love's. it is unacceptable i do not want to be remembered that way. i have detailed this in the book i have a little bit of

audience i will answer anything it is all in the read the book. [laughter] that will be an interesting conversation]- right tippers' get it out there then let them know. any questions for me? go to the microphone. >> we worked out to gather. -- together because the physicality of lifting someone has frozen in my shoulders.jfx i know meryl

comer by the content and innovation in the of books we know what it is about. but what i struggle with is how can we change what is being done in research? but the amount of research? you must have thought of that often. thinking of that age model probe but to affect the young people they could get upset about that they were very clever to get theire;#nn issues out to change the course of research but now the secretivenessa]6 it is the number of people 76 million is daunting..ñ and searching to find a country that has 76 million. maybe germany.

this is like germany. i am guessing. what is your suggestion to how we can change that 1%12añ to what we need? >> we need about $2 billion annually the nih budget is 20% across-the-board which is unacceptable. the researchers said a tipping point. there are many exciting things happening in this space. but we have to stand up together to really say this is unacceptable. we have to fight more funding and get in the face of congress people. we would be better off if this was a brand new disease all of a sudden attacking baby boomers and had not been around 100 years to have that stigma. a lot of things going on the stigma is very deep. right beneath the surface

because of the behavior's. that is why it is so important to step out. you must demand more money for research and we need toaát÷ wage the of war oníh alzheimer's the way we wage the war on cancer. we learn to live with cancer with hiv/aids. there are no cures we have learned topyadk&ive with disease and managed to seize. the breast cancer movement a woman who worked for me had breast cancer per christ saved her job and protected airspace. she came back and got sick again. when i went to visit her she looked beautiful. her head was shaved but she had me put post-it notes on every piece of furniture in the house and where they would go. she was part of the decision of what happened to her all

the way through. you love to be a part of what they do and when it is time to say enough is enough. if you were not offended by that it is time we all got offended together but i stood by her. we need people if people sitting next to you, a neighbor or someone that you feel so badly for, be there advocate. the advocate on the "frontline" at the doctor's office with health insurers we are wearing out. we need our kids to be angry for us. future we are robbing them of their future and that is a huge issue. join with us and i have to

teldynu you if i had not become an advocate i would be deeper into said aziz. this has saved my life and has given me a purpose no matter what they do for my husband or my mother alzheimer's will win. i take it outside the house to fight it in a different level program was recruited$s to run the foundation and this to be is where we all need to be. we need to step out. who was willing to step out with me?÷@÷ try it. see what it feels like. stepped out for someone else but we have time for one more question. >> you talked about dictums to have no voice. but another category of victims is ah!ú! patient's or

clients to have symptoms of a disease that the client does not understand how does that population at large to be educated with different kinds of providers how to recognize and deal with it? in terms of a professional is a different category. how do people learn to identify? >> if you are an accountant or a doctor or8,e psychiatrist psychiatrist, you have seen it.$%suç we're really ignored and nobody asked us. we are the closest to the patient for kuwaitis suspect something is wrong you're probably right. but it is a very tricky co

you don't want to take the independence away. we value our health and being independent. what else is there? but this is a bankrupting dizzies. 213 billion on care and medicaid spends 24 billion annually on families that go bankrupt to take care of loved ones. only in the book "slow dancing with a stranger" if you are on the frontlines i can talk to you personally for:i do hope you continue joining with us against alzheimer's. if it is time. the other opportunity is the clinical trials. we have learned we must get ahead in the prevention and