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The Ribbon - Care for Caregivers
Volume 7, Issue 10
June 1, 2003

www.TheRibbon.com

1104A Murfreesboro Pike
PMB 114
Nashville, TN 37217-1918

Things are pretty quiet around here....is this the quiet before a storm? Nowadays, I tend to get a bit nervous when everything is going as it should. It always seemed that when things were going great, a crisis with someone I was caring for would happen. Will I ever get over that feeling? I'm trying very hard to enjoy these good times but there's always the thought in the back of my mind that something will be happening with Nick soon. We've already gone through a little scare about his heart recently. Hopefully discontinuing one of his meds will help...at least that's what his cardiologist says.

I got some bad news last weekend...my mother's cousin, Carol, who seemed to follow neck and neck with the same problems that my mom has had for the last 10 or 15 years passed away. She was 68, one year older than my mom. It just hurts my heart that her children are going through the same things we did not so long ago. I'm telling you, I'm getting so upset with so many deaths....we've had such a long living family up until now. It is all just too many too fast.

I do have some good news that Linda (PHOTOLJT) has been hinting about. I can't leak it just yet but I'm thrilled to say that my husband, children, and siblings will be there to celebrate with me. This makes my heart sing that everyone is taking time off from work to honor me. I will be telling you just what it means to me in the June 28th issue. I can hardly wait as I am bursting and need to let it out!
I guess that's all from the home front this time.

Hugs to all,

Jamie


Dementia Affects Family Members as Well as Sufferer

Dear Abby:

My mother is in her early 70s and recently was diagnosed with dementia. My family and I are in the process of looking at assisted-living facilities.

The problem is well-meaning neighbors and old family friends who say that Mom is "too young" to consider assisted living. This is causing us much undue stress. She has been alone since Dad passed away 10 years ago.

None of these people understand that my mother forgets to take her medication, loses her checkbook, has gotten lost driving--or forgets why she's in her car in the first place. They don't realize that performing simple household tasks such as laundry and cooking has become a burden for her.

It has been a difficult decision for my mother to agree to leave her home and accept the assistance she needs--and some people are making it harder. what can I say to these folks to change their attitude and encourage them to support my mother as we move forward? She needs that now more than ever.

Want What's Best for Mom in New York


Dear Want What's Best:

Sit down with these well-meaning people and explain exactly what you have told me. It is important that they understand your mother is no longer the person she once was, as much as you all might wish it. Dementia is a disease that affects not only the sufferers, but everyone who loves them. I'm sure these people will be less resistant once they fully understand what is going on. Be sure to encourage them to visit her and remain a part of her life.

The Tennessean May 18, 2003


Book Review

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


Gathering Of Friends 2003

Okay, here we go!! We are ready to rev up and get this show on the road. If you even THINK that you might want to come to Nashville, TN to meet, make new friends, actually SEE old friends, and participate in the Alzheimer's Association Memory Walk on the team of Jane's Angels now is the time to let us know. Send an email by July 15 to GOF Info@aol.com and let us know that you are interested in attending. Those of you who receive The Ribbon by USPS can send a letter to the address at the top of each issue. This is just to get a preliminary head count so we can start contacting the hotels to see where we get our best price.

You may want to start searching the airline websites to get the best price on tickets. What most people do is come in on Friday Oct. 10 and leave on Monday Oct. 13. The Memory Walk will be held on Saturday Oct 11.

We will be sending you more deadline dates as time scoots on. Remember, time flies by and it will be here before you know it!!


News that will be breaking soon

Hello Friends!

You know this huge secret is killing me! I mean this is one of the most difficult things I have had to keep my trap shut over in a very long time.

As a general rule, when the gang knows I have a secret; they ask for a hint...so...as you know in the last issue, you discovered it was about our very own Jamie. Oh man this is so huge...I almost can't contain me! So...this time's hint...it involves something that each of you do each and everyday. Boy howdy could that be any more vague than that? LOL!

So Stay Tuned To Your Caregiving Newsletter For The Big News...June 28th!

Big Hugs Everyone!

Love Always,

Linda
www.TheRibbon.com/GatherPlace/


Links

Las Vegas Sun: Lithium May Work Against Alzheimer's

Lithium, used for decades to treat manic depression, has been shown in mice to block the production of proteins that form deposits in the brains of Alzheimer's patients, suggesting a potential role for the drug in treating the disease.


Snail Mail Bag

Dear Jamie and Karen,

Please say hello to all for me and give hugs. Let me give you a religious chill. You will take me serious as you read my true story.

Due to a series of strokes (4 to be exact) I sold my home and moved in with a friend who lived in Donelson. Six months after I moved in with her the Lord took her home to be with Him. She was only 54 years old. Not hardly sick a day except for her usual allergies and arthritis.

That isn't my story, this is: The last Saturday night in April I went home from visiting Trevecca and had a long talk with God. I poured my heart out to Him. I expressed how He knew that every avenue I had been down had turned up a dud. Now I had to leave it completely in His hands. I pleaded with Him to please open up me a door at church the next morning if it were His will.

When I went back to Trevecca the next morning to pick up my friend for church, she asked me if I had decided on what I was going to do. I know I will let you know by sundown tomorrow. On the way to church I told her about my prayer.

When we arrived at church and went inside, Bill C. was sitting there and a woman that neither one of us had seen before. Between Sunday School and preaching, Bill came over and asked me if I had found anywhere to go yet. I told him "no". He said the woman sitting beside of him was wanting a roommate.

To make the rest of my story short--she wanted me to follow her home and talk to her. When she found out I had 2 dogs she was happy. I got to keep both of them and they are happy and well taken care of by both of us.

Only God could have opened that door that fast. He can work as fast or as slow as we let Him work in our lives. Elizabeth Ann accepted the Lord as her personal saviour just hours before He took her home to be with Him. Please continue to pray for me and my new roommate.

Thank you for keeping me on the mailing list. I still enjoy getting The Ribbon very much. I have a notebook with every issue I have ever gotten from you in it.

In Christ's love,
Judith C. B.


EMail Bag

From Punyun@aol.com

Dearest Karen,

I must say after the almost 3 years that my Mother has been gone I still look forward to reading your letters. I still find a comfort there and appreciate all the hard work and dedication you all put in for us. Thank you so much for your work and devotion for with out ones like you it would be so hard. I remember how much I watched my Mother suffer. There is not a time goes by when I go out to shop I see a daughter or son such as myself pushing an elderly parent in a wheelchair and think what a loving person they must be. I then fight back the tears remembering how hard those times were for me but how my loving heart for my Mother carried me thru those hard times.

Thanks so much....Ginny from North Carolina


From Merilop@aol.com

Hi Karen,

I have just recently dicovered the Ribbon and it is great. My mother has dementia or alzeheimers I am not sure but she has most of the symptoms. I also have an aunt back east with the same symptoms.

Thank you for your time and help

God Bless You
Merium


From murphdownunder@bigpond.com

Hi Karen,

My name is Joan Murphy. I am activities Coordinator in a 30 bed high care nursing home. I find your site fantastic. It's real and heartwrenching sometimes. I just want to say thank you ! for your effort in sending the Ribbon. It's wonderful to get it in my email. So keep up the good work. I find you invaluable, you make my daily work much easier with your ideas and information, and therefore you must make my clients days easier too. Thanks heaps/

Joan


From Jminerva123@aol.com

Just wanted to tell you that this weeks Ribbon was very helpful and that I am very grateful for this site. I too am dealing with a lot of the same things that Jamie wrote about. My husband of 32 years, Dennis is declining due to Alzheimer's' and it is very difficult. He had to retire 16 Mo. ago at age 61, doesn't drive anymore, and is decline so fast. I'm grateful to have a place where someone understands and expresses what this is like. I have one E-mail friend in Al. sent me your site. THANK YOU AND GOD BLESS ALL OF YOU! Sincerely, Joan


This issue has gone out a few days late because our Karen has been in PA visiting with her new granddaughter along with her daughter, son-in-law, and grandson. I think all of us say this is ok with us. Congratulations to the whole family!

Hugs and Peace,
Karen and Jamie

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