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Just Love Me: My Life Turned Upside-Down by Alzheimers (Purdue Series on Ageing & Care) Paperback – March 15, 2003
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About the Author
Jeanne L. Lee was born and raised in Portland, Oregon in 1941. She is the very proud mother of five children and four more by marriage. Her thirteen grandchildren are a large part of her life, even though they are miles apart. She has owned hair and nail salons, a printing brokerage and a bar and restaurant. She has also managed bars, graphics and printing shops and has even flown planes. After years of suicide attempts, marriages and mental institutions, her diagnosis was somewhat of a relief. She was no longer
there was a name for this thing that was turning her world upside-down. It did not take too long to embark on a new journey promising herself no one else would go through this kind of suffering. She began a support group for early stage Alzheimer's when she could find little help elsewhere. Her next goal is to acquire funding to begin the first USA Alzheimer's Cafe (begun in the Netherlands), which allows a place for lectures, camaraderie, outings, exercise, love, laughter and tears for people with Alzheimer's and their supporters.
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She says it like it is for her, and much of what she describes is true for this reader who has come to grips with his own diagnoses of Alzheimer's, unipolar depression, obesity, kidney failure, alcoholism, emphysema, and now diabetics, all within the last two years.
Page after page she describes the various conditions of depression, alcoholism, dropping, forgetting, losing words, endless tests, denial by physicians, et al,, which plague all of us.
But thanks to the diagnosis, she is able to confront the denial of early continued sexual abuse, her own and her father's alcoholism, and multiple relationships.
The book is jumpy, and disjointed, but that is the nature of this species of dementia. Many of us demented ones have a huge sigh of relief, when all the eliminations are done, and the only culprit remaining is Alzheimer's,
This is not a book for those professionals who are determined to establish that those of us with the disease have no valid information to share with them. This is not a book for those who are only interested in working with the caregivers. This is not a book for those who say why do anything meaningful, since we won't remember the patterns anyhow. This is not a book for those who flaunt memory improvement exercises which deny the loss of the ability to learn. This is not a book for those who talk, but do not listen. It is a book for the rest of us.
Her main title says it all for this ALZer: "Just Love Me." But this love comes at a high price in the face of vincible ignorance.
We will talk, even if the words are jumbled. We will read, even if the continuity disappears. We will listen, even if the sentences disappear into a black hole. But most of all, we will love, even when we are not loved by those around us.
Lee has shown us the way out of our tunnels of loneliness and despair.
Lee says: "I know there are many people out there who neeeed to hear from others, like themselves, that it's okay to goof up; it's okay to do stupid things; it's part of what's happening to this body and brain. But it doesn't have to be all bad. There is so much good, and so much you can still do. So what if you can't remember somebody's name. You can still say hello to a little old lady. You can still give flowers to soneone . You can still look at the ocean [like I did on a Senir Retreat last week] and say, 'Oh God, I'm so lucky.'" And thanks to this book, that is exactly how I will spend my time remaining. Thank you Jeanne.
Just Love Me, My Live Turned Upside-down by Alzheimer's
by Jeanne L. Lee
I think this book is a wake up to those of us who share in the care with someone with Alzheimer's. Jeanne tells it like it really is in words we can all understand. Jeanne has given me permission to use a few excerpts so that we can all begin to realize just what it feels like to those who have this horrible disease. Through reading this book, you will learn why you as a carepartner or caregiver need to have more patience and remember that it is the disease and not the person you love. Believe me, the person who has Alzheimer's or another dementia sure didn't ask for it. It is up to us, the TAB's (temporarily able brained) to learn to move into their world as best we can as they cannot, try as they may, always be able to cope in our world.
I offer my sincere thanks to Jeanne for sharing her life with us in order to help all of us have more understanding.
Did you ever take a full minute to decide which way a key goes in the hole? Maybe once, but five times a day? Or look in a phone book and not know which letter follows which letter? Try to add three numbers together and get five different answers? Walk into someone's house that you have been in many times and take ten minutes to get oriented as to whose house you are in, and what you are doing there? Watch a TV movie and forget what it's about in the middle? Read for hours and hours, having enjoyed it while you were reading it, but then it's all gone? Ride the bus and forget where you're going, and have to hunt through your weekly agenda to see where you're going and why? That is, if you remember you have somewhere to check. Lose or misplace something, not just occasionally, but four or five times in an hour? I can misplace my pen ten times in an hour. I can misplace my glasses, even though I have a pair in my purse, another pair in the bedroom and another "wandering" pair. All of a sudden they're all wandering, and then they're all in my purse. I clean up the same pile of stuff four or five times before it gets where it's going, and I used to be the best organizer in the world. Now it takes me two hours to prepare before I go anywhere.
Something that I also find disturbing, especially with groups, is that I have to frequently interrupt, because, if I don't, by the time they're finished with their story I've forgotten what I wanted to add. I have to get people to understand that they can remember their story, and after I've said what I need to say, before I forget it, I'll shut up and let them finish. So, I either interrupt or lose what I was going to say, and what I have to say may be important to the conversation. This is hard for someone like me who was taught not to interrupt when someone else is talking, but it's the only way now. It's an awful feeling, but if people were more aware that this is the case for someone with Alzheimer's that would help. For those who want to say something and can't find the right words, it makes it seem like you have no intelligence. Combine that with feeling rude for having to interrupt, well, sometimes you just feel it's easier to let the thought go. That is why so many withdraw and don,t talk. But I do not think people should have to do that.
A Note from Jeanne Lee
Jamie My purpose in writing the book was to help people. You have my permission to use what you see fit. Anything short of cover to cover is open to you. I admire you for the ribbon and if I can help please let me do so. I am on a journey for earlystage awareness and moving right along. I hope to do a greyhound bus tour from LA to Portland stopping at towns to lecture and do book signings. If that turns out OK and the funds last I will do Portland to Vancouver BC. I do not have the support of oour archaic AD association so this is a one woman challenge to open the eyes of all the islands. I even borrowed $6000 from a friend to represent the United States as a person with dementia at the International Alzheimer's Convention in Barcelona. I do not want to toot my own horn but just to show you that I really am an advocate. Aloha Jeanne
Thank you so much for The Ribbon.
Jeanne L. Lee
Author: "JUST LOVE ME"
My Life Turned Upside-down by Alzheimer's