"JUST LOVE ME"
My Life Turned Upsidedown
by Jeanne L. Lee
About The Book
Jeanne was born and raised in Portland, Oregon. While raising her family, she resided in Texas,
Washington and Hawaii. She has three sisters and two brothers. She is mother to five children and grandmother to eleven grandchildren. Jeanneís father died of cancer and her mother recently passed away from Alzheimerís.
Jeanne has been employed as a hairdresser, bartender, graphic artist, printing broker and
pilot. She has been the owner of a beauty salon, restaurant and bar, and a printing
Her diagnosis of Alzheimerís came in 1995. Jeanne was actually happy with receiving her diagnosis, because in the five years previous to being diagnosed, she thought she was going crazy. She even attempted suicide at one point.
The writing of her book took preference over everything except her children. Jeanne
pushed forward with a positive attitude to complete her book. Standing tall on her soapbox, Jeanne has trudged forward rendering help to anyone with problems with Alzheimerís and/or Dementia.
With the completion of her book, Jeanne began her association with DASN (Dementia Advocacy and Support Network). Jeanne is now in the process of helping her state of Hawaii to promote and provide treatment for personís with Alzheimerís and all other types of Dementia. Jeanne believes the diseases should be treated from a-z and not just s-z.
Jeanne has traveled in support of her cause. She recently attended a DASN conference in Montana and hopes to be able to travel to New Zealand for the ADI Conference (ALZHEIMER'S DISEASE INTERNATIONAL CONFERENCE).
Much to her dismay, all but one of Jeanneís children and all of her grandchildren live on the mainland.
To Jeanne's Home Page
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Exerpt from the Book
"JUST LOVE ME"
My Life Turned Upsidedown
by Jeanne L. Lee
Assisted by Cliff Reid
Dr.Valerie Brandon M.D.
David B.Dameron Ph.D.
This book is about the thoughts and emotions that go on in the mind of a person written by caregivers or medical professionals, who think they know what it is like for someone with Alzheimerís. Admittedly, a few non-sufferers do have a pretty good understanding, but most donít, and because of that I felt that there was a need for another book from the viewpoint of someone who actually has Alzheimerís. There are only a few books, that I am aware of, written by Alzheimerís patients and, as no two Alzheimerís experiences are exactly alike, there is definite need for more.
This book is intended not only for those who have, or think they have, Alzheimerís, it is equally for those who may be interacting with such a person. They say that just making a conscious effort to really understand a fellow human being, to truly empathize with them, no matter what their challenge, is probably the most loving thing you can do for another. I agree. Alzheimerís requires a lot of understanding, from both sides of the disease.
I admit that at my current stage of Alzheimerís I could not have written this book without considerable help. On a good day I am still capable of writing a reasonably coherent letter, and yet other days I have a hard time constructing a single sentence. Even when being interviewed I frequently have a difficult time coming out with the words Iím looking for. My brain just canít get it out. But just because Iím having trouble expressing myself does not mean I donít still have exactly the same feelings and emotions that Iíve always had, some maybe stronger now than ever.
Although I am now incapable of typing the words that appear in this book, I have personally reviewed every word that appears on these pages, to ensure that this book accurately portrays my own personal thoughts and feelings. It was a painstaking effort for someone in the throes of Alzheimerís, but I believe that effort was necessary to ensure that this book represents a credible journey through the emotional world of someone actually afflicted with the disease.
It is apparent to me that I am now exhibiting r
come of the signs associated with the moderate stage of Alzheimerís. However, I plan to do as much as I can, for as long as I can, to help improve the understanding between people with Alzheimerís and those who interact with them. This includes almost everyone: bus drivers, telephone operators, family and friends. Letís face it, an increased level of understanding can only serve to make life a little more enjoyable for everyone involved. What a tremendous gift of love it is to anyoneóparticularly someone with Alzheimerísówhen you make the effort to understand them.
The Golden Rule states, "Do unto others as you would have them do unto you"....yet, this doesnít always work the way it was intended. The person who uses this rule without first taking the time to really understand the other person might unintentionally be hurting rather than helping. The other personís feelings and needs may be quite different from your own. More appropriate is a variation on the Golden Rule that some refer to as the Platinum Rule, which goes something like thisó"If possible, do onto others only after you have first taken the time to understand what it is that they would like done onto them." Isnít that how we would all like to be treated? Isnít that really what love is?
This book deals with some serious and possibly depressing issues and experiences, but itís also about learning to enjoy life to the fullest extent possible. For me that has always included laughter. I do hope that, during the course of reading my story, you will not only, at times, understand and perhaps even feel my intense despair and frustration, but at other times be able to laugh along with me. And then have a better understanding of Alzheimer'sí and those that have it.
My hope is that this book will serve to bring a little more light a little more love, to the life of each and every person who reads it.
Review of the Book
Reflections from Cliff Reid of "Your Story"...
I first talked to Jeanne when she phoned "out of the blue" in March of 1997. I am used to helping eighty-somethingís to write their stories to leave to their family, but here was someone who was only fifty-five, who wanted to get her story down, while she still could, not just for family, but she had an idea that it might help others, like herself, who had early onset Alzheimer's.
I am always willing listen to and assist virtually anyone who has a story they want to get down on paper, but after the first couple of meetings with Jeanne, and after reviewing her tapes and written material, I seriously wondered how we were going to be able to convert what she had given me into a publishable book. The notes she had gathered together for me to review were quite honestly, scary. The tapes were a little better, but somewhat disorganized and repetitive, and it was often difficult to hear what being said.
Despite these challenges, I soon sensed Jeanneís sheer will to complete her story, and we quickly built up a marvelous rapport and synergy. Even so, for a long time it was hard to imagine how it was all going to fit together, and she didnít appear to possess the financial resources necessary to complete such a project. However, as they say, Ďwhere there is a will, there is a way,í and I know Jeanne often sacrificed other things in order to muster enough funds, at just the right times, to keep her dream moving forward, and during all of this time she kept adding good new material. Then, when the time was right, everything just seemed to fall into place.
The result is a book that I believe will make a difference for many, and the journey, the process of completing this book, was one of the great learning experiences of my life. I feel privileged to have been part of it. Jeanne is one of the most loving, caring and supportive people I have ever had the honor of knowing. Sure, she has her struggles and down times, although I rarely witnessed these, because when it came to meeting about her book she was always up. I only knew about the other times through listening to her tapes and reading her notes, but I noticed that even in when she was down, she always managed to maintain her kind and loving heart.
Jeanne walks her talk. From the outset she made a sincere effort to understand me, to trust me, and was forever encouraging, and for those reasons I knew early on that I was in 'til the end, whenever, or whatever, that was going to be. Personally, I donít put much weight in what a person has done, or what they were, and while those past experiences might make a good story, I really only care what a person is, and Jeanne is a special human being.
"JUST LOVE ME" should be "required reading" for anyone who has even the smallest periodic contact with an Alzheimerís patient and to all who are related by birth , marriage, friendship or other close relationship to an AD sufferer.
The authorís very personal, candid description of her life experiences before approaching, and during the Early onset of AD enables and requires readers to understand, at whatever level appropriate to an AD sufferer. Most of us realize that they indeed suffer, but find it extremely difficult to know how we can help.
By getting inside Jeanne Leeís mind and by experiencing with her the worries and frustrations that torment her, the symptoms of AD become less confusing or enigmatic to us.
What can we in the "real world" say to be more helpful to the patient? Those who have tried...and too often failed to decide whether the victims of AD are able to understand themselves, much less others, will be closer to knowing the answer after reading this book.
And certainly such knowledge acted upon would make life more comfortable for all involved.
Private School English Teacher 35 years
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
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 don't think
people should have to do that.
If people will
call our warehouse to order the book ---- 1-800-247-6553 ---- and
they mention the discount code of PUP26 they will get a 20%
discount on the book. This offer will be available starting on
Friday, April 4th and will expire on July 31st.
A Note from Jeanne Lee
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
Thank you so much for The Ribbon.
Jeanne L. Lee
Author: "JUST LOVE ME"
My Life Turned Upside-down by Alzheimer's
What Readers had to say about the Book...
Jeannie Andresen wrote...
Because you and I share our early grade school years, we share a bond- a very special bond. Just the thought of you brings a smile to my face and love to my heart. I hate what you are going through but love that you share your trials and successes with me. I am proud of your book and proud of all that you are going through to finish it so that it might help others. You are a dear special friend.
Your classmate of 12 years
and friend for many more.
Pat Bemis, RN MN wrote...
I thoroughly enjoyed reading your manuscript "Just Love Me." It read well and had some very important issues and points to make with regards to patients and families dealing with Alzheimers's Disease.
I had a vision while reading it that was "Hallmark Hall of Fame" movie material that would help other patients and families as well as professionals in the manifestations of the disease and the implications for future considerations of care-giving. I remember long ago Joanne Woodward starred in a movie that portrayed her as a professor who was not approaching retirement age as yet and she developed Alzheimer's Disease. It was such a moving performance that demonstrated her courage as a woman dealing with the disease and the trials and tribulations of her family attempting to cope with her impending loss. I see your book being transformed into a modern version of her movie.
I wish you much success in your pursuit of a publisher and hope that this is in the hands of those who need it in 1999. Continue to have faith in research and advancements in the treatment of the disease and I will keep you in my prayers.
Pat Bemis, RN MN
To listen to interviews on health, aging and caregiving issues please visit http://www.wsradio.com/copingwithcaregiving/
and be looking for an upcoming interview given by me, Jeanne L. Lee in Hawaii
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Artwork by Rapozo
The music you hear playing is "I'll Remember You"
I obtained this midi at Polynesian Shores
Sitting wondering in her mind
"Where is my life going?"
Wondering if her time for tears,
has truly disappeared
Sitting asking herself a question
"is it all up from here?"
Asking her heart to let go to
the things she fears the most
Sitting smiling at herself
because she has done really well.
in control of her life now!
Dedicated to Antie Jeanne
"We love you"
Thanks for the use of the graphics Niele
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