Jeanne's 2003 Journal Jan

June 30, 2003

This is my last entry on this page. You can see my entries for July through November 2003 by Clicking Here.

It is just another day and I am trying to catch up the journal and pass a few anxious moments. Donâ€™t know where I left off so lets begin with 6/24

Monday I awoke at 4:20 to begin e-mails and it was to early to begin calls.4 hrs computer 3 hrs phone fell fast asleep at 6 but then got up to make scampijno receipt required and vern is home too prevent me burning the house down.

6/25Another 4am but had plenty sleep. 4-10 computer then to martins on the bus Guess I cannot bore you all till the 5 of aug. since all my days seem to be a repeat of the last. Went to a lecture on Health at queens where I am suppost to lecture also.

6/26 I am so proud of the two boos I bought that almost make me feel organzed. Well it loks that way anyhow Now it is a neat and tidy look into this struggle to keep this trip on the move and take me with it. The lectures are piling up. Now they are calling me instead of me beging. Some of the ones I can think of are Castle wellness center, Elks, Eagles, St Francis and Kukini hospitalsChinese womeans group and Teachers association. It is a horrible spelling dya and my laptop advertises t to me with squiggly lines all over the page. Vern is trying to make sense out of my train bus scheudle and when It was all put together he got it but now guess I hve to put it the way I uderstand it. Have to have my lines and everything seperated. I could not have done it without hi readin the tickets. Had to walk away from the computer today. Went for a walk to my bes t supporter at her office nand had lunch with her . Now I amback with a better attitude. Still looking for Oprahâ€™s address they sent to me when they said they could not dealwith manuscripts but send book when it is published.Alan my riend is a great help to me also.He is so patient and drives me anywhere I need to go.

6/27worked on online interview and postal workers sign for lecture. They bought a box of books for a gaurentee for me. Went to bed at 7 up at 1:45-4:30 then started calling.

6/28Was checking the archves of the persons being interviewed and I am a bit out of my relam but that is where I want to be as an outspoken advocae (I love that title)got to go talk to my angels for a little inide help.

6/29Interview went ok but I was nervous but when vern listened to the archive of it he said it was great but then he always says that.Talked on chat awhile it is not luxury I give myself thes edays and I sure miss it.my tour is going wellHawaii will be in the know or Ill die trying. I am set for 4-8 times per month till october except for the 6 wees I am gone which will be about 12 per week. Oh my god did I just say that. Now I am tired I am trying to ge replacements for martis etc. helping plan three b. parties and makng presents for them all oh and a baby shower.I am grama to more on this island than my own grandkids and would have hurt feelings if I did not show for soccer, plays etc etc.beach picnics,hospital visit to a friend, making meetings for dani preparing art boards fo lectureshelping a friend design a new food lable for his busiess and still tring to let vern know I love and appreciate him

6/29cynthia party triied ot my neww gift of using their name to spell special things about them. Made deevelid eggs and had a relaxig time took my travel book and made a to do list from it. Worked well.

6/30 lost the to do listgot AOL on laptop finally. Supppose to get bus pass today 2 years lae been usig the old one til l they took it away from me. Computer there was down so he ofice was filled with irate people. I had to pay an extra $5 but felt It was not bad cnsiderig I did nnot know I was riding for free foe two years. Guesit is good to be old and look homest.

June 21 2003

6/10 just a note to let you know I will be on internet radio on the 28 of june at 1:40 Hawaii time that is 4:40 pacific time.
http://www.wsradio.com/copingwithcaregiving

6/11 woke up at 5:45 am to begin calls to the mainland when but my mind stopped at 11 and said forget it. Still calling and emailing but have asked for help. I will save a few cells for the trip. What a day and it keeps repeating. I decided to take a day off and shut down the computer when I got a call for an appointment I has missed. made it for tomorrow so i could continue my nothing day. took some very important mail and headed for the elks to listen to my hawaiian music watch the hulas and eat hawaiian food. looking at the ocean from there is about one of the most relaxing spots I know, and I forgot i had 9 million things to do. I am here now with friends solace and music.

6/12 yesterday was tooooo short but great. 6 am back on the computer and phone. I could have gone to sleep at 3pm but it is now 7 and that is where I will be in minutes.

June 4, 2003

Dont know where I left off but had a chat with all the kids today and that makes my week just a bit better.

6/9 Many years ago when my book was a dream I planned on making a tour. of course then, it was a best seller but now that I have come down to earth, I'm still planning a tour. but the book is in a tie spot with my DASNI and Alzeheimer's Awareness lectures. The later being the title of my new business with my partner who is helping me very much. This was formed to help others including medical professionals,carepartners, and any one knowing someone with dementia's and anyone who has the slightest interest in what it is like to live with one of these diseases.

About three weeks ago I began begging greyhound, trailways and amtrak for a little assistance with the financial part of the tour. no answer yet but just as my trip to Barcelona to represent the US at the international conference for alzheimer's, My angels find the opportunity for me. At that time I had a great friend who loaned me $6000 to be repayed in small monthly payments over 8 years with no interest. This time I stayed with a friend while his daughter was away and he paid for my trip.

The planning of this trip is a bit overwelming. I call to get the right person to talk to and get the name but forget to get the e-mail. Then I call back for the e-mail then gather about 5 of these and send out the mail and three get returned as I transposed numbers and even when checking it carefully it looks right. Just like I think I am right so much of the time when I am not. Finally after tears, tantrums and ineffiency I ask for help. Now that I have the help I worry that they have not the time and are not as worried as I am over getting it definite so the dates in each city will match. Now the bus, train and plane are paid for. I need to really push myself. Yesterday I did two book signings at Borders and a very succesful lecture at the church. I sold out on books and got a standing ovation and lots of questions.

My schedule is set but places are still coming. I leave Honolulu 8/5
Seattle 9/2
Vancouver Victoria 9/5-9/9
San Francisco 10/13
LA 9/13-9/16
Santa Barbarba 6
Bakersfield 6 no lectures
Fresno 7-10
Sacramento 10-11
K Falls 12
Medford 13
Grants Pass 14
Albany 15
Salem 16
Portland, Vancouver, Olympia 8/16-9/2

Oh boy I can even miss this thing up...JLee

June 16, 2003

6/10 Still calling and e-mailing but had to ask for help so hopefully I will save a few calls to the mainland.

6/1 woke up at 5:45 am to begin calls to mainland about 11 my mind shut down. I shut down the computer and got a call for an appointment I had missed. I moved it to tomorrow so I could continue with my nothing day from that point. Headed for the elks to watch the ocean, eat hawaiian food and listen to hawaiian music. Even say a few hulas. For a few hours I forgot I had 9m things to do.

6/12 6am back on the phone Busy as ever was so tired at 3 I could have slept but now it is 7 and I am off to bed for sure.

6/15 Gave a lecture at Hawaii Kai Retirement Community. Took my cute little hanai grandaughter to dance for them. They some how got the impression the books were free so had to stop a few at the door. Packed stuff and went to Kapiolani Park to listen to hawaii under the full moon. Sat for a couple of hours before deciding I had the wrong day. Wondered to movie on the beach found friends and out of 1200 people I put my blanket in nest to a friend of 15 years. We had both been ill and lost track of each other. So we ended up 14 people and that is hawaiian style.

5/16 Have to bring more books to church as I sold out last week after lecture. I felt so good. People were still talking about it and gave me names of three more places to call for lectures. Today confirmed the Eagles club for October. Talked to a lady with wonderful ideas for my ADCafe. She wants to be the first volunteer when it gets going. Eagles may help me get funding grant. What would I do without my angles?

6/17 Started real early today as had to go help an elderly lady clean her house. I try to do her once a month. She is frail but jolly. Got home hit the computer where I had four e-mails that had read the info I sent to them. All want me to speak. Is this a miracle? Things are flowing so fast in my quest to help people understand. next is a baby sitting for a friend in an emergency. Must be meant that I get away from the machine for awhile.

June 4, 2003

Messages to my kids

I feel so good about the book and I am so happy you all share the joy with me. You are all my reasons for living and the cause for my journey about alzheimer's awareness. With the help of a higher power someday I hope to leave you a little more money than I could have before the book and a whole lot more of a Hawaiian Heart. You have all turned out so well and I am very proud of each and every one of my five children and my two additional daughters. Sometimes I feel so far away but the phone calls and e-mails keep us close. I could not love you anymore if I lived on your front porch. You have given me some wonderful grandchildren and I thank you for these blessings.

JournalSubj: Linda Clare gave me this email Doctor I need your help
Date: 6/3/2003 10:13:52 AM Pacific Standard Time
From: jleehawaii
To: doctormoore@cox.net

Dear Doctor Moore

Linda thought you may be able to help me in the LA area. I will be in LA on AUG 5th at 5:25 am at the airport leaving August 6th at 7:45 train station. I will arrive back in LA on Sept 12th at 9:15 Pm and not leave for Honolulu till the sept 16 at 12:15 PM. I would appreciate any help you are able to give. I am attaching ( I Think) (not too good at this) a bit about myself and my book. I can handle a few bookings if available. No need lodging or car just a bit of helping me make less phone calls and contacting the right people. Our local alzheimer's board is still just taking care of carepartners and funding even though I have been on my soapbox for an early stage group for 6 years. I even started my own early stage group that grew from 3 to 9 in one month and ran it for 3 years. I wanted them to take it over but they could not. I had to give it up for I was trying to answer the very questions and needs of myself, and I thought the book I had been working on for 5 years needed to get out to help others. I will bring you a copy of my book for the work you can do for me if you can. This is a copy of one of the many letters I sent. Jan Phillips recently from there and Joe and Penny? active and from there are also great friends and supporters. I am supported by National and International but not my own AD Assoc. sorry to say. Aloha Jeanne

I will be traveling on an Alzheimer's Awareness and book signing round trip from LA to Portland to Canada and back the coast to La. Amtrak is working on my schedule. I will be needing the Phone numbers for the Boarders, Books and Music Stores and the Alzheimer's organization for LA Bakersfield, San Francisco, Fresno and Sacramento. Thank you this will be a great advertisement for these towns and Amtrak as I am a person with Alzheimer's and will be speaking and promoting my book as help for the public and Medical field to understand what it is actually like to have Alzheimer's. I want to make people aware that AD is not only and elderly disease. I have formed a partnership of Alzheimer's Awareness to promote my journey of Awareness. Our local Alzheimer's board is still just taking care of carpenters and funding even though I have been on my soapbox for an early stage group for 6 years. I even started my own early stage group that grew from 3 to 9 in one month. I wanted them to take it over but they could not. I had to give it up for I was trying to answer the very questions and needs of myself. My group DASNI Dementia Advocacy and Network International has members from 23 to 80 in the early stages of various dementias. Aloha Jeanne

YOU DON'T LOOK LIKE YOU HAVE ALZHEIMER'S

The hardships of having to convince
It is not what you see it is what I know is missing
I may not look different and I am still me
but some changes have taken place in my brain
I still love children as much or more than ever
I just like to love them less at a time for a shorter time
I still love people with all of my heart
but crowds are disasterous to me
I love going shopping or out to eat
but clanging silverware, loud music and people talking
at the same time set my brain whirling
My music is important but day to day it changes
on how much, how loud and what kind
Doing things is still fun for me
it is the planning that is too much
Altough I still have opinions
decisions become stressful to me
The track my brain follows can only carry one thing
if a second or a third tries to climb aboard
I loose all three
I have a hard time speaking my mind
and often it comes out rude but not meant to be
I loose track when I am talking to you or
what was said so reminders make me ok with this
My brain gives me the best service
when not tired or confused
and many more things now
make me tired or confused
I seem to get crying spells for no reasons
A klenex will do as it will pass
I love life but that does not mean
it is easy for me anymore
I just want to be understood and loved
I am still me but I do have a disease.

Jeanne L. Lee
Author: "JUST LOVE ME"
My Life Turned Upside-down by Alzheimer's

June 3, 2003

Overwelmed is the opperative word for the last month I got the best book review at www.theribbon.com . Thhings are going so well that my life is out of cotrol. My brother, sister and Allen are joinginme at different intervals of my tour so I will not be traveling alone. It is very evident that is not practical anymore DARN IT.

I have been writing the problems in my life that keep needing coping skills but lost all the notes so on the 22 of may I began to put them in my date book and they go like this...

May 22 When people leave me money to take for work rendered I cannot figure how much to take. I have to call someone to help me. When I make out a deposit slip I ccannot come up with a balance amount or total or less money total. I have to let the teller do it

May 23 I had to walk out of a play as they were singing the same song but different groups singing different words. My head just about blew off after much fidgiting I had to leave. The same thing happened at church last week. Guess different words at the same time shatter my brain and I cannot digest it.

May 24 I have been having these feelings I call head squeeze. It feels as tho someone is taking a rubberband to the top of my head and then pulling it like tightning a pony tail. This has been going on for a year or more but it is getting more often. When I mentiioned it at chat I was not the only one who was having the problem and many were feeling it in different areas of the body.

May 25 I really need a publicist to help me or let me designate some of these duties I have mostly for my book. Wow It is taking up all the brain power I have and more. I live tired these days too much to do to keep on top of this journey. Got to do my part or more (that is me) to get this word out.

May 25 Vern and I formed a partnership for Alzheimer's Awareness and he is handling the book sales as I cannot. Thank God one of us can still keep it together. I think he really likes being a part of it all and I really need him

May 27 I see vern putting dishes I wash back in the sink to be rewashed. He does not mention a thing to me. He must do that a lot on different things I know nothing about. What would I do without him.

May 28 Tried to make laptop carry aol but did not succeed. I need lots of help there but to busy to go get it. May 29 wrote , emailed and called for the tour. Think this will be a task I need to put 5 hours into per day. It is hard to know what to do first. train reservatioins or bookings. whew

May 30 Sent out 4 book releases to newspapers. a repeat of yeaterday. But today started a 4.45 am today It is now 12:45 pm and my brain has totally shut down. I cannot type, think or sleep. But I am going to lay down.

May31 We got into a hugh chit chat about handwriting or lack of it on our websit. Many of us trained in cursive have now almost illegible writing. We even have a teacher who taught cursive writing not able to do it at all. Some of the members have particular trouble with the letter s. Mine is all letters. lol I am typing at 1: 30 am today need 3 money orders pills and computer work today

June 1 went to palaminos for dinner with the girls. then on to Kaposnos. As I sat there with loud music I said time for me to go. Took a cab home 4 miles maybe and gave the man 25$ I only knew it because I knew what I had in my pocket. Mistakes are costing me too much money. Went to beach one of the weekend days.

June 3 got all the stuff ready for my lecture and booksigning at the church. that is the 8th and on the 7 I have two signings a different locations of boarders. today I have to call call call every body is so will ing to have me lecture but they all want different times and days and now San Luis opispo? wants me to teach a class at their conference in novemver.seee why my brain is in overload. aloha to you all Jeanne

June 2, 2003

Book Review @ www.theribbon.com

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.

Page 26

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.

Page 32

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

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
EMail: jleehawaii@aol.com

May 23, 2003

Wow my life is so full. For three weeks I have been at Martin Denny's home plus still doing other housekeeping.

I had a wonderful TV interview for a local station. back into the lecture scene where I belong. My head is hard to carry for all the compliments I received at this one. Sold lots of books and had a very long question and answer session.

I have two book signings on the 7th and a lecture at church on the church on the 8th*th. I am trying to plan a book and lecture tour on the bus from LA to Portland and if that works I will go from Portland to BC.

My e-mail is filled with requests for the book and also great reviews. I am now on Amazon and in many book stores from US to the UK and Canada and New Zealand for a few. I would everyone who reads this will call their bookstore maybe it will get into more bookstores.

Mari my good friend had a bout with worry and she is coming thru it with flying colors. People need to know that things get exaggerated with the dements and our bouts of depression go long and LOW.

This is a hip-hop journal but that is just what my life is for these three months. My friend Mapuana is helping me to plan things and I have given her the title of my publicist. Hope one day to have her on a payroll but for now it is for love. Aloha Jeanne

April 28, 2003

Yesterday I went to a special Boarders music signing and happened one I missed for books closer to home. Chicken Soup For the Soul of Hawaii. I had chicken skin for hours. This book is so me so Hawaii so wonderful. I am so fortunate to be a part of this island and its people.

Back to the story. I spoke with a few of the persons that helped with the Hawaii version till one of the original best selling authors of the books (Chicken soup) overheard me mentioning my book. She asked if she could speak with me. She gathered another of the original authors of the New York best #1 sellers ( brag brag) and we chatted.

She is the type of a person who make one feel as though there is nothing on her mind but you and what you are saying. We spoke for a half hour and she will call me later. She and the other woman by name Robin Steven's Rohr and Sharon Linnea will be helping me set up a publicist and help me to become one with the AD Assoc. teaching them that I would be an asset to their group.

She will also help me to get book signings and who knows what else. I am so very blessed to have been in the right place at the right time which seems to be a natural part of my life since diagnosis. More to follow. I hope this is not a bragging session because I am just immensely thankful for each moment.

April 27, 2003

At last I have a few moments to fill you all in on the exciting details of being a published author. I have to pinch myself each time I say that just to make sure it is not a dream. Well, actually it is a dream come true. And I have had many of those lately. Asked the other day if I thought I was a lucky person or unlucky. I had the answer almost before the question was asked. This interviewer was surprised because most people say some of each. No way my life has been one continuous session of good luck. Even when you look at the disease it has so much good luck connected to it.

I received my copy of the book soon to be followed by 20 more and then 2 more and on and on. All sold and the book masters in charge of selling on the web is now over 100. It is only 20 days since the first book was received by a buyer I think that was my pal in Hawaii Stasia. I have been selling them faster than the book company can get them to me.

Book signings are in the plans as well as lectures for the next three months. I even am in the beginning training of taking a bus trip from LA to Portland to stop at many cities and do a lecture and signing in August. If that works I will do it from Oregon to Vancouver BC. I have many friends on both routes who I hope will be good supporters for me and maybe have a floor I can crash upon. My book publisher cannot sponsor me so this will be out of pocket but the people I hope to help will make it all worth the cost.

I have begun to search out Ad groups and find many much more progressive than Hawaii but we are waking up here too. I have so many luncheons and dinners for congratulations I have gained 15 lb. My special friends had an impromptu LOL) party for me at the elks where I was laden with leis and presents and a cake with "JUST LOVE ME" written on it. The tears of joy just keep rolling and I did not want anyone to eat the cake. Wanted to save it. LOL

April 4, 2003

Better come down to earth and tell you all my best news. The book is being sold and sold 59 copies in 2 days. Not a bad start. I have not gotten my copies hot off the press yet. Vern is at the mailbox for his tax return and I am there for my peek at my book.

Yesterday Vern took me out for breakfast another person took me out for lunch and another at the same restaurant bought me a split of champagne. Wow has it been forever since I tasted that. That evening another friend asked if I could get them into the Elks that evening. OK So there was so many friends gathered with congratulations and a cake with JUST LOVE ME written on it. My children and siblings and friends have been emailing and the great DASNI family has been on my e-mail in bundles. Wow I think it has come true and only after a 6 year wait. Still nothing to touch though. The book company was nice to give DASNI group a discount. I could babble for hours but won't.

The second point I was to make in this journal to negative to follow this. Later and Bless all of you that have stood beside me for part or all of this writing, editing, rewriting re editing, etc., etc.

March 28, 2003

I am really noticing how little I remember of persons I have met in the last few years. Names are gone where I met them and what they have to do with me are all gone. This even with our group more common than not. If I chat daily or a few times a week, I get most things OK but not all. Names unless used often are forgotten immediately after being introduced.

The nightmares come and go with no rhyme or reason. Taking a little higher dose of trazadone but it leaves me tired. Don't know which feeling is worse.

Traci is getting a divorce. She had not much to do with it but we are working on keeping the girls from unsupervised visits because their father is an alcoholic and would drive with them in the car. In no way does she want to keep them from their father she just wants them to be safe.

Sunday will be a fun day. One of the members of DASNI Stasia will meet me at the Elks. Life will be much easier with another person willing to admit dementia. This island thinks I was the only early stage person for 7 years.

My book will be in my hand by the third or fourth. I can't even believe it till I hold it. What a long time coming. I have 3 lectures planned but later in April so I will be sure to have books for sale.

I have cut down a few days of work a month and hope I can keep myself on my journey. lack of money is tough but I have to adjust.

I am so proud of my sister getting a business of her own. Hair salon in Portland. I blew a bunch of bucks to get Hawaiian flower for her opening. She lived here with me for 10 years. Not always with me but she was here and I sure miss her.

I have three of my five children with birthdays in April. Funny thing I cannot remember ages but I still know the years they were born and since my math is horrible you will have to figure it out. Traci 1964 Todd 1963 (same age for one week). and Tedd born 1969. Also some nieces. It is getting harder and harder for me to keep this straight.

Vern did not win in Las Vegas this time but had a great time and always brings myself and friends gifts. He is golfing a little more and still working 2-3 days. He really tries to be my taxi but I have to plan well no traffic, one place and fast lol Love that man. Aloha Jeanne

March 24, 2003

Sat night I went to the great Honolulu Luau and was it great. Entertainment, food and company.

The latest on the book is it is off the press March 26 and ready to order the 4th of April. I will believe it when I see it.

I have a couple of lists of recent problems but as usual they are lost (misplaced). I want the world to know my room has been picked up for two days now. Some kind of a miracle. I am doing lots of computer work today and it is about to get me down. am to 3pm time for a break aloha Jeanne

March 12, 2003

When I have my nightmares I try so hard to call Vern but no sound comes out and I keep trying till it blares out and he comes running.

Today Martin was not doing so well. I sure can see him falling off the last month or two. I think it is AD or some type of dementia setting in. After all he is 92. He seems so depressed with life. His life these days is not to quality and I do not blame him. I can't convince his daughter she is doing him harm by trying to make him do everything right and making him try to think deeply. I know how he feels.

Guess the conference is over now. Can't wait to hear from our members that went to it. Aloha Jeanne

March 11, 2003

I may not have the time or space to tell you all about my weekend. guess my balance is back and is it helpful to a great day.

This weekend I spent with Sharon one of my longest friends from Hawaii. She is a Captain for aloha airlines. we went out for lunch with another friend pilot for Hawaiian and an office manager for many attorneys. I am surprised we did not get kicked out of chili's. We laughed till sick and ate and tipped a few.

Right before we had gone to the movie with Steve oops Martin Allen and latifa. I have not laughed in a movie that hard for a long time. think it was called bring the house down or bring down the house. I ate a hot dog coke and popcorn. really splurged.

The day before we had gone to a tax party. Another professional is an accountant CPA and 1 time a year they all get together and do taxes. One would thing it to be a down time but we had so much fun.

It was a fattening weekend we ate and ate. We laughed and laughed. I worked on Sharon's kitchen and even scrubbed walls. I stayed in her new addition had my own bath and all pushbuttons for lights fan TV etc. I had to mop and spray before I moved in because she has three dogs. I love dogs outside but she has 15 orphan cats out there. I locked the dogs out of my room and they were sad but I was happy.

We went shopping at costco and bought stuff for a great new salad from SAM CHOY. We went shopping at wall mart which is a treat for me cuz the only one on the island is miles from me.

Now I have get back to the routine of cleaning houses. Got my radio though so it is better. I am weeding out a few slobs so I can have a little time for me. Maybe this is helping my balance also. aloha

March 2, 2003

Today I had 4 guestbook signatures from 4 members of DASN with such encouraging words. There Is such a special place for messages because I know how very hard it is to get to others websites much less my own. It is that bit of extra that you know these people are having the same problems and REALLY understand. When I went to chat to pick out my icon which is usually a turtle I must have hit a wrong button for after I typed for a while I noticed the yin yang symbol. I am a believer and took that to mean my balance I have been searching for was back. Today I feel so good. However I did hit my knee on a bench and am a bit cripple and it really hurts. Now the reading becomes more clear and I plan to go to some American Indian books for more spiritual guidance. Depot Copra has already put me in the mood.

Feb 28, 2003

I am still on my finding my whys"sss. I know my kids all have their own lives but I am missing calls from them. If I do not call them seems like it can go forever for them to call me. I let it bother me too much I know but it keep a very open space in my heart easily filled with stress and rejections.

One of my clients was on the phone making me break from my schedule of going routinely through the house. As I went back and forth I left things laying and undone and was so exhausted by the end of that day I felt horrible. I cannot make changes. Use to be I cannot make changes easily now it is Please don't make me make changes. This day I took one full hour more to do a lousy job.

Guess my organazational skills are really shot to H . The more I try the worse I get. I write down passwords save them on the computer and still they are not right or under the wrong headings.

Feb 24, 2003

I have two answering systems. Each time and it is at least 5x per day I check the messages I have to listen to all of the replies from my carrier to know which button deletes and saves. If I do it without listening it is wrong.

I have gotten real down two times in the last 4 months. At that time it seems as though my failure in things I do is exaggerated many times. I feel as though my power has been lost to do anything about it. I feel helpless snd hopeless. Thank God for my chat group DASNI sticking with me and helping me to crawl out. Then I can get into some reading or tape books that will bring my journey back into my reach. At these times I screw up my computer so badly it takes months to get it working well or not. I call for help and cannot follow directions. I stayed off the computer for three days this last time. Considering it is my best lease on life that is a long time.

Feb 23, 2003

I have been keeping track of the things that make me develop more coping skills. This is really how my book started. At that time I did not know I was developing coping skills I was just trying to cover for a lack of everything I use to posess. I want to use them on my new website maybe where I can establish some cash. I have as of late tried to take no new clients and downsize the work load. I felt as though it was taking the place of my real journey. It will cut my money but I have to deal with that if I want to continue this journey of helping dementia persons and anyone who loves or has the slightest interest in them.

Here are a few of the problems I have noticed over the last few months back to two years ago. There will be pieces of them in my journals from now on as who knows maybe there is another book in me or they can be used for awareness for other people.

I have been pretty much in charge of my meds. I have certain ones from my wonderful doctor but up and down them as I feel the need. Over three or four years I have gotten my trazodone from 250 to 50 sometimes taking two 50' sometimes one. In my lack of medical medications knowledge I once in a while go off. That never turns out good. Two weeks now I have been having very weird dreams and night mares which have been gone for quite sometime. The ages and times of my children and friends are all mixed up each time. Last night after seeing how many trazadone I fell asleep without taking I got back on schedule and Had a good nights sleep.

The ole sundowning has hit me hard. I am usually in bed by 7:30 or 8:00. It also causes me to have an alarm at the 3:00 am hour wake me. Wide awake at which time I play computer or TV or meditate.

Feb 22, 2003

I have been trying to put my last two weeks into words. I was clear that not even I knew what was happening to me. I went slowly down from being on my soapbox about Early Stage dementia and the elation of the book going to press to complete depression. As hard as I thought I was helping myself I was at a standstill. Finally after letting it get the best of me with things such as making such horrible mistakes with the VCR, hundreds with the computer, stove, telephone, calling card, grocery shopping,organasation anywhere, speaking gently with people I love, oh well I could go on forever but you see what I mean. Also you can see I need to get a real hold on life itself to come back to being me. Tomorrow I will (or soon) add to this story. Aloha Jeanne

Feb 10, 2003

Been trying to keep track of a few hard things that get to me. Last night and daily I am watching TV when the commercial comes on I have no idea whatsoever I was watching till it comes back. As I flick though the stations I can never put it in my mind to go back to that cuz I do not remember which one it is. When it is very important to me I write it down.

My math is getting so bad I cannot subtract anything with 0's or 0 left from a small #. my checkbook is impossible. I just keep calling for a balance and let the tellers fill out my deposit slip.

I have a computer man coming today to try to rectify all the errors I have including 10 viruses in my files I don't use. I had McAfee installed and it took 4 hours to go through all my files 47,000 plus. I began deleting and they deleted the others. I am downsizing this computer. And oh boy when I am tired I may as well call it quits. aloha Jeanne

Feb 9, 2003

It has been awhile since I have gotten to this. I have had no less than 7 irons in the fire.

1. keeping up with all the happenings with family (new baby Annabelle 8 1/2 lb. to Tedd and Melinda after two boys they got their girl and are no (unlike their Mom, quitting) well I quit after the 4th but had plastic surgery to re tie to have my little Hawaiian)

2. working back on starting the AD Cafe trying to establish a new website to sell items such as book etc.

3. trying to keep up with the changes from publisher book now due in March but went into print so looks good

4. trying to get to book stores and libraries to sell book

5. keeping up with all 7 housecleaning's

6. keeping up with all the frustrations of computer and answering all e-mail

7. enjoying Hawaii and all its beauty and friends and most of all keeping my sweetheart happy

8. Keeping up this journal (hard)

9. oops trying to get to Tulsa for a conference I was invited to go and Mann a booth and bring books. been on the computer trying to get a good fare. Wow expensive and they said they would help with ore to Tulsa part but cannot tell me how much till after the conference. That darn money should be available when you are truly going to help others.

Sometimes I hate that I put this spell check on all my outgoing mail it takes to long and does not really tell my downhill problems with that. Oh well it looks better in stuff I send out.

I have been having some real bouts with running thoughts and after typing this I can see why. Where did that simplifying my life go? Got to get it back. I want to put my kids journal back after it got lost but that is a full time job. I worked many days and many hours and none of them ever got to read it. Maybe I said something I should not have. LOL Aloha for now

Jan 22, 2003

As close as I can remember I was on aricept max dosage for about three years. Seems as though I was going down faster than my doctor, Vern and I recognized. She put me on the lowest dose of Exelon and at one month intervals she upped the dose till I reached the top. Let me make it very clear while the dose of aricept was discontinued and the lowest of Exelon was my memory help for the month I felt I was stepping down I mean really down for that month. I was depressed, crying and generally accepting with horrors that I was on the way down as fast as a roller coaster. I even began some end of life plans.. I begged the doctor to put me back on aricept. She each month told me to hold on and was sure that I would feel the improvement. The second to the last increase I felt the benefit. I thought I had gotten a handle and was finding words I had lost long ago. My conversations with what I call my smart friends (all highly professional) seemed to get easier. I had chosen to offer no comments on any subject. One of my early coping skills. I would just smile and repeat what someone had said in different words or just agree. At this time I began to add to the conversation, even bringing up a topic. It was then that I began going over my book and found it to be below my talent I felt at this time. I made a few changes but left most because that is where I was at the time I wrote it. Then people in DASNI began to notice a change in my writings. Now I feel that the change was almost a miracle. My doctor tells me I am a living miracle. Even though I definitely feel the daily struggles and have to develop many coping skills I feel more a part of life. My depression times have pretty much gone.( not entirely) I am an advocate for Exelon. I really wish I could get them to let me speak for them.

Jan 21, 2003

Today I got a call not to clean house. I was so happy since my week has been pretty full. Now the big decision was to clean my house or play with my free day. Thank goodness I went to chat and asked what everyone thought. Well, I am going to lunch with a friend. Now that was not hard eh.

We also chatted about a meeting of the DASNI people. Hope we can get it together. I can coordinate it with visiting my kids and maybe even get driven there with one or more of them. That would be so fun.

The thing that prompted me to add to my journal today was a strange downfall I guess. I was trying to put up three shower curtains after washing them and it took me about 45 minutes. Much to my surprise I think I had to relearn how to hook each loop. It was a very frustrating job and something new I have realized. Things now come and I do not recognize them as much as I use to when I wrote the book but this one was so frustrating it really upset me.

Talked to Traci and the girls this week as well Keola.

Went to visit my x- husband in the nursing home. I must have mentioned he is 52 and on his fourth stroke. I really thought the last visit in intensive care was one of the last. Thank goodness he has 9 lives. He is doing pretty well considering. He cannot talk and is paralyzed on one side so must eat thru a tube. He has begun physical therapy and hates where he is so maybe he will work hard and be back home soon.

Keola is think electrical school (again) Sure hope the thinking turns to action this time. He needs algebra to begin the course and his father has connections to get him into apprentice school.

Todd must be pretty busy as I have not heard from him for weeks. This usually means he has a new girlfriend or is working double shifts.

Tim and Denise are seeing the money to keep going on their new home they are building.

Tedd and Melinda are due in a couple of weeks. This will be the first baby I do not get to hold at birth. Something tell me if I could get a good deal I would go to help for at least a week. My fingers and my heart tingle when I think about it. Aloha to my readers I love you Jeanne

Jan 15, 2003

The Capricorn party for 9 of us went well but I did have to pay for the three that did not show up. We sang, played darts, danced and ate and ate and ate.

Mary my sister started the day off the night before my birthday with a call. The morning had an e-mail from Denise, a call and song from Allen, Rita and Mapuana.

I worked in the morning but got a bonus and a box of candy. Allen took me to lunch at Tony Roams and Vern is taking me to Ruth Chris tonight. I got cards and e-mails also today.

Getting a year older is not so bad. My strange neighbor must have not known it was my birthday as she leveled about 200 feet of flowers and plants with the weed wacker. Ti plants in all colors, orchids, aloe, plumber starter and who knows what else. Thank god the planting season is all year long. She missed two orchids I had in the trees but Vern said watch out the lawn chairs may be next. lol

Jan 12, 2003

Today is the day of the Capricorn Party. I guess I am more excited thatn I thiought. I was up all night and am still running circles till it is time to go decorate, This is really the first get together I have been in charge of since I really began to go downhill. I can sure see where the anxiious feeling is running amouk. I planned on 25 then the RSVP's were only two.

In hawaii that does not mean they are not comming. but there was another party last night and two in two days are a bit too much for most people. Cept those under 25 and I do remember those. Well this morning I had a RSVPs for 31 and 4 of them are bringing 4-6 guests. Thats the Hawaiian way. And of course my heart is Hawaiian so for today the more the merrier. (also i live walking distance from the spot so i can disapear.

I love it so much when I get on this computer and find my kids or grandkids. Seems like it brings them so much closer to me.

My poor webmistress. I really do not understand one iota about these awards and I must be driving her nuts. I do feel quite accomplished that I (with the wizard) got my voice working after trying for a year.) When I get behind this computer and see all those wires it only takes moments to get stressed. So it took a year of short moments and help from Tom, Peter, Mari,Ben,Alan and many others to succeed.

Now I may get more journaling done as I try to use it when I am so anxious I pace the house. I let the anxious come out of my fingers and it is better on Vern and myself. So if it sounds more rattled sometimes it is because the thoughts are comming way faster than the fingers can move.

Wish you all were comming to my party. Aloha Me

Jan 11, 2003

Today is the best day I have felt since novem,ber ^th when my eardrum went on me. That has been a long hall. Guess I should not complain about our cold weather but it is really chilly. The north wing brrings in down into the 60 and we have no heaters so we pile on the blankets.

Speaking of blankets I have a new bedspread shams sheets and it is better than anywardrobe I have had in years. Think it will help me to lkeep it looking good. Maybe even picked up. It has bee 6 days and still no piles on the bed.

I took on a couple of more housecleaning jobs and hope I can talk them into everyother week. I was just feeling very happy since i cut off two after my trip. Seemed as tho I had a pretty good balance of work and play. but the money to travel gets in my way. I just am a softy when ole folks call and need help.

Today I am going to spend in my storage. Maybe I can clear one of them off our bills for the month. That will feel good too.

Vern is in Las vegas and I am alone. Do not like the nights at all. I also need him to keep me current on my pills. No matter where i put them they are not in front of muy nose at the right time.

I was in the state of shock and quite hurt when notn of the three children I sent breakfast and music boxes to called or emailed to thank me. That is no tat all like my children. I finall had to askbecause I did not want to be paying for something they did not get. Two have andwered with apolpogies. aloha Jeanne

Jan 4, 2003

Marilyn nice to hear from you and Maka Hiki Hoi to you and everyone else also.

I kept forgetting to send you my travel tip. I was traveling alone so I had my Itinerary printed on my travel shirt and put "please don't loose me." It got a lot of people smiling and it was very much available so that for every question I had I did not have to dig thru tickets to be clear for my answer. ( also had DASSY on there for good luck) think it is on our website if you need a smile.

Also I try very hard to hang on to my artsy fartsy (excuse, my five year old daughter came up with that when she did not know what it meant and it stuck with the family and next generation)) talents but find the retrying to get it back very frustrating. So for my drawing I use graphics, for my painting I use sponges and imagine what appears, for my writing I just reread over and over and accept the loss of meaningful words but still come up with OK stuff.

My cooking has come to one meal dishes mostly because if I do two I burn #1. I also call for lots of help from Vern as peel the potatoes or wash the rice. I love to have him in the kitchen with me.

As for my sewing I have a good friend who sews well. I still love walking, star gazing, get togethers at the beach, football, swimming and reading (which has become much harder) so I keep at those.Oh and I must not leave out my occasional Budwiser.

Another activity I have been at for 7 years and still do pretty well (Dogone good) is harassing my AD Assoc. The last two times I have not gotten any answers so I now address my e-mail to them and the National Association. Naturally so they can see it. Do wonder if this will help.

Still love to lecture and now I get to go back to all the lecture spots for book signing parties.

Life is just not that bad. Seems like when I loose one thing three pop up in its place and for that I am very thankful (and tired). Aloha Jeanne

Jan 2, 2003

Well, it is tomorrow and reading my webmitress' Christmas brought tears to my eyes and joy in my heart. It brings back the words of my doctor in my depressed years over being away from the kids. " You do not have to be close in miles to be close in heart."

I had the whole day to remissness and talk on the phone to the kids. As I was talking I had many good memories. I could see Tim and Denise trying to catch a few extra winks I caught them in bed. They are at the point where the kids are not up at 4 am banging on the door about Santa's arrival. Denise had been ill and Tim has been hard at work building a new home for his family. Hopefully he will take it a little slower this year. He gets so tired and angry it is affecting the family. Jennifer left early to house sit. She has grown so much in mind and love. Her spirit is evident to make something special of herself. She is driving this year but lives with car problems. Ashley is turning into a very nice young lady. her move to the country and change of schools has been hard on her. She is handling it very well. She is growing up so fast and so pretty. I am so proud of her keeping up her grades. She will get her license this month and will be looking for a job. The time goes so fast and Adam is in a new school also. His grades have improved and he really likes shop. I think they still call it that. He made me a nice clover turret when I was there in November. He wants to be a chef and practices often. he is great at steaks on the BBQ. Dalton is no longer the little one. He has grown up and skateboards with his friends and Adam. They have a skateboard in the town just blocks away from their home. The kids would be there 24 hr. a day if could be. Dalton still loves baseball and is pretty good also. He is still adjusting to the change of schools, but he make friends easily so things will go OK. He was really into his games on Christmas morning. He like to do a little cooking to. All the kids are pretty helpful as Mom and dad both work very hard.

Todd is working so hard we do a lot of e-mailing to keep up. He gave me money for my trip to Barcelona. He gets in lots of skiing and works many hours. We all hope one day his son Stevie will find us and know how much he is loved by his father and family. We have not seen him since he was taken away by his mother at the age of 3. He is now 10. My storage is filled with letters and presents to him since his 3 year old trike was sent back. It is a heartache but I know he will grow up to want to meet his dad again.

Traci had a bit of a hard Christmas as their season was filled with tradition. This is the first Christmas with just the girls. She has been fortunate to have a couple of extra moms who live close to keep her spirits up. I got to talk to the girls on the day after Christmas since they were spending the day before with dad. Ally is growing so tall she towers over me. I think she will grow taller than Mom soon. She told me about her new clothes. She loves her new school and is really into volleyball. Wish I could have seen a game while I was there. Now she has something besides reading to take up her time she sure looks like Mom and is turning out to be a pretty teen. She is so cute and really has a mind of her own. She also loves books. They both must have got that from their Mom in her very early years. She loved her books and days at the library. Traci is very fortunate to have two children the get straight A's. Rian will jabber her way through the holidays just like the rest of the year. We went ice-skating while I was there and both girls did wonderful. I love being with the kids and grandkids.

Tedd and Melinda are almost catching up with Mom in having three kids so fast. They have their hands full and one more due in Feb. This one will be a girl just like me. two boys and then a girl. It was so nice to be with the kids and Angelo and Anthony. The boys have grown so fast in one year. They are quite the couple of opposites. Angelo is a darling holy terror. and maybe a bit spoiled but very much loved. He is the king and Anthony just loves his big brother. But as lively as Angelo is Anthony just takes life in stride. If he gets pushed over he just gets up and tries again, if he looses a toy to Angelo he just gets another. Their personalities are so different. Angelo is great at the computer and makes a great breakfast juice. Anthony loves everybody and is very touchable. Angelo is in school a couple of days a week so Anthony get special love and Mom and dad get to get something done. They are so special in gramas eyes. Just wish I would get more pictures so I don't forget how fast they grow.

Keola was with me the day after Christmas. The latest news is job hunting. I only hope the hunting turns into a job. He has a new girlfriend and she is very sweet. I feel lucky to have him here to give me that hug once in a while. It is a shame his father has had yet another stroke. He picked me up and we went to see Vernon. It is sad to see him failing. At the age of 52 he has had 4 strokes. We are visiting and praying.

Talked to all the siblings also. Think I was a little lonely since Vern was at work. Our Christmas was nice and I went to three parties on the eve and one on Christmas Day before Vern came home and we had ours.

Christmas is so different without children, but I really felt I was close this year as it was only November since we all were together.

Jan 1, 2003

ALOHA from Jeanne in Hawaii...

Please Click on the Links above to visit more journal pages. Happy New Year!!!

I tried to get into chat tonight but only got to saay Aloha before I was booted out. Guess that is whay I don't go on much.

Today has been pretty hectic trying to get the final changes on the manuscript before it goes to print. I surely hope everyone had a good Christmas and is looking forward to a great new Year. I am starting it with a cold but lots of new ideas. With the book to be out in a month or so I am filled with happiness It has been awhile since I have thought journal but I saw my webmistress in chat and thought I'd better get to it.

Talked to all the family and siblings this year for christmas.

Vernon, my x had another stroke. He just turned 52 and this is the fourth. He is not dooing well this time. He is in intensive care at the moment so I could use some prayers to pass on to him. Now with this cold I can't go see him. He needs me to fight. He cannot talk and is eating thru tubes.

Thought I was filled with good stuff to talk about. Maybe tomorrow will be better. aloha me

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TABLE of CONTENTS

Jeanne's 2003 Journal Jan - June

Just Love Me: My Life Turned Upside-Down by Alzheimer’s

Book Review @ www.theribbon.com

Just Love Me, My Live Turned Upside-down by Alzheimer's

by Jeanne L. Lee