Volume 5, Issue 6 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease

Volume 5, Issue 6
March 18, 2001

www.TheRibbon.com

Getting the numbers right!

Years ago, when I was first learning about Alzheimer's Disease and caregiving, I remember being shocked to read that there were over 4 million people affected by this devestating illness. But as I read more and more and time went on, I still heard this same figure, 4 million, and I thought..How can it STILL be 4 million? Someone needs to examine this!

The numbers need to be right. The future of AD research depends on their being right. One of the factors in determining how much funding is available is need. And if the "count" is not right, or at least close to right, AD research will not get the funding needed.

I am a member of the National Family Caregivers Association (NFCA) and they did a survey last year that reveals the large picture, the vast number of people in this country who affected by caregiving.

NCFA Survey Results

Check it out and give us some feedback...

Issues for Children and Teenagers

Issues for Children

Young children, adolescents and grandchildren of a person with dementia are sometimes overlooked during the process of adjustment which is being made. The adult caregiver is often so involved in dealing with the changes in roles, responsibilities and the emotional burden of caring, that there is little time or energy left to help children and grandchildren deal with the issues created by the disease. Younger children and grandchildren already trying to cope with the normal pressures of growing up, also have to cope with having a family member who is ill and becoming more and more dependent on the family. This may cause specific problems, such as lack of appropriate role models, anger, grief and loss.

Just as adults' coping skills vary, so do those of children, adolescents and young adults. Two factors affect all:

How important is the person with dementia to this person?
How often does the young person come into contact with the person with dementia.

Children, no matter what their age, will have many questions. They may want to know what is happening to their relative, and why, and whether it will happen to their own parents or even themselves. They will experience the same emotions as you: fear, guilt, denial, jealousy, frustration, anger, sadness, tension, embarrassment, despair, etc. Their behaviour may change as they attempt to cope with the deterioration of their relative.

For example, the child may withdraw, refusing to visit the grandparent. He or she may have insomnia or nightmares, or rebel by staying out late. Conversely, the child may appear bright and unaffected, pretending nothing is wrong.

The way a family deals with and responds to these questions, emotions and behaviour will greatly affect how the child copes with dementia.

How can you help?

Let your children, no matter what age, know that you care, that you know the situation is hard on them, too.

Give them permission to air their feelings and take the time to listen, even when what they say may hurt you.

Help your children confront and deal with their worst fears. Always remember that these are very real to the child, though they may seem unreasonable to you.

Endeavour to maintain as much family structure and consistency as possible. Do some things together as a family.

Spend some time with your child each day, a separate time when he or she is the focus of your attention. Remember, you will benefit from this, too.

Encourage young adults to go on with their own lives. Support them in making educational plans, seeking employment and planning a future for themselves.

Deal with problems and conflicts, don't ignore them, they won't go away.

Make time to discuss, as a family, responsibilities and problems. Include young adults not living in the household in these discussions, and accept their offers of help, but don't allow this 'helping' to dominate their lives.

If the child is of school age, it is important to let the teacher know that a loved one has dementia, and ask that you be kept informed of any problems which may begin to surface at school.

Tips for Teenagers

Managing Difficult Behavior

Remember that the person with the disease does not behave in disturbing ways on purpose. Behaviour changes are the result of a disease over which he/she has no control. Help the individual overcome periods of suspicion by calmly offering support. Don't challenge or argue with the person.

The person may be angry, quarrelsome or physically violent because of insecurity or frustration. You may be able to calm the person by speaking softly, moving slowly and showing you care.

Communicating

Look into the person's eyes as you speak: smile, nod, point, touch, hug, hold hands or shrug to help get your meaning across.
Speak slowly, clearly and gently.
Communicate one message at a time rather than stringing several messages together.
Don't interrupt or contradict the person. Be encouraging, patient and understanding instead.

Enjoying Activities

Focus on what the person can do. Plan activities which will help the person stay in touch with his/her surroundings, such as walking through the neighbourhood and identifying certain landmarks.

Help the person to relax by dancing to music, singing, or playing instruments.

Help the person stay in shape by playing sports and doing household chores together.

Dealing with Feelings

As a carer for a person with Alzheimer's disease:

Remember that your feelings of anger, confusion, sadness, fright or guilt are normal for anyone in your situation.
Speak with your parents, grandparents and other family members about your feelings.
Talk to other teenagers in similar situations who can share their ways of coping.
Turn to a professional (doctor, school counsellor, clergyman, Alzheimer's Association Counsellor) for support.

As a friend of a carer for a person with Alzheimer's disease:

Be patient with your friend. If they have less time to spend with you than before because of caring, let them know that you value the time you do have together.
Tell them you're proud of them for devoting time to the person's needs.
Remember that your friend may be hurting inside. Let them know that you are willing to listen and help sort out their feelings.
Encourage your friend to talk with their parents, older brothers and sisters, or teacher about their situation and feelings.
Offer to help your friend in ways that may save them time. For example, assist with chores, etc.
Help your friend gather information about Alzheimer's disease from the local library or Alzheimer's Association.

Grandmother

She stands in the middle of her bedroom, a small woman, almost fragile, not quite reaching five feet tall or 100 pounds. The conversation she is having is a spirited one full of talk of home and parents and times spent growing up. Her eyes are bright and the smile is genuine, but it is heart-wrenching to realize that my grandmother is having a conversation with her own reflection in the full-length mirror that hangs in her room.

Memories of years past flood my heart - sitting in my grandmother's lap as she reads my favorite story for me over and over again, helping her bake those delicious cookies that only she knows the recipe for, building sand castles at the beach on our Florida vacations, walks in the park, talks about God. I wonder. Does she remember those times? Is there a memory somewhere of that little girl who loved her so much? Who still loves her?

So often it seems that her memories today are of a time long ago, years before I ever became a part of her life. My mom understands that feeling. Some days my mom is still my grandmother's first-born, with both of them laughing about a time from my mom's childhood, but more often now than before, Grandmother thinks of Mom as a good friend, a nice girl she enjoys spending time with.

Alzheimer's is a word that has crept into our lives. Unwelcome and unwanted it has become a part of our daily life now. It has slowly stolen the dreams from my grandmother's future and so jumbled the past that at times it seems my grandmother must be on some kind of wild roller coaster ride that never ends. The memories of days gone by leap at her so fast and furious that at every turn of the mad roller coaster track a new memory surfaces only to quickly disappear with the next jerk of the roller coaster.

But in my heart the hardest moments are when my grandmother has very brief, but also very painful moments of realization that something is terribly wrong with her. The tone of utter despair in my grandmother's voice when she says to my mom, "I'm going crazy," breaks all of our hearts in a way that mere words could never describe.

My life with her will be so different than I had hoped it would be - so sad in so many ways because of all the times I won't be able to share with this woman who has meant so much to me since the moment of my birth, but also so wonderful in some ways. Wonderful because at 15, I have learned a bittersweet lesson in life some grown-ups still don't understand. Seize the moment, take the time, speak what's on your mind, share your feelings. All these things are a part of who I am now because of the experiences I now share with my grandmother. Life gives no guarantee, no promise of tomorrow. That is why each day with my family and friends is so important to me. How I choose to spend that day is a gift I give to myself.

As I walk into her bedroom and put my arms around her, my grandmother takes a break from her lively, solitary conversation with the world she now sees through that mirror to say, "Hi, sweetie. I love you."

I guess that's what really matters - somewhere in my grandmother's heart the love will always remain.

I love you, Grandmother.

Written by Kim Moses
Ninth Grade
Martin Luther King, Jr. Magnet School
Printed in The Service Merchandise Student Writers Showcase as an Informal Essay

In Passing: Those We Must Remember

From PHOTOLJT
dated 2/13/01

Just want to let you know about what I got in the mail this afternoon from Mary, or was we know her in GP, Mattie. I know your thoughts and prayers will go out to Mary and her family in this trying time.

"Hello! I just wanted you all to know that Ed passed away this morning at 2 AM at home. He had a heart attack. I am going to miss him but I know where he is. We are having the visitation at Corman memorial home in Avon on Thursday night and the services will be at the Open Bible Church at 10AM on Friday morning.
Mary"

From DKThomp
dated 2/22/01

Good Afternoon All,

The LORD gave, and the LORD hath taketh away; blessed be the name of the LORD. Ann Janette (Gibson) Thompson went home to be with the Lord this afternoon about 2:30. She died peacefully with the family around her in her own bed and in her own home as she wished. Praise the Lord she is out of her pain and suffering! We will miss her, but we know she is with the Lord and is starting her eternal day singing in the great choir of the saints before the throne of grace.

There will be a memorial service at the Berea Baptist Church in Berea on March 10, 2001, at 2 PM. All that can and wish to come are invited to help us give tribute of thanks to Christ for Ann's life and service to her Lord and Saviour.

In His Great Love,

Doug and Family

From ecmick@msn.com
dated 3/3/01

My Mother, Faye Steinmetz, who suffered from Alzheimer's, also passed away Jan 16. Sorry for the delay in notiffying you.

Maureen

From PHOTOLJT
dated 3/13/01

Folks, I have had to write to you in the past regarding our members' family passing away. Tonight, I have the very difficult task of letting you know of another member's loss. However, this is much closer to home as this is one of our Gathering Place hosts and, my dear friend and sister, who has suffered a loss. Mary, known to us at Tracy1952, lost her Mother this morning. She passed away peacefully in her sleep. Although Mary has worked very hard in preparing for today, nonetheless, it is still difficult. However, Mary is doing pretty well; her husband, Leo, has been at her side throughout the day.

Many of the folks in The Gathering Place this evening, asked about us, as a group, sending flowers. In our conversation this afternoon, Mary asked me to suggest that a donation be made in her Mother's name, Mary Peavy, to the Alzheimer's Association. Here is the address: Alzheimer's Association, Inland Northwest Chapter, 601 W. Maxwell, Suite #2, Spokane, WA 99201.

Please extend your thoughts and sympathies to Mary and her family in this very difficult time.

Love Always,
Linda

TheRibbon.com

TheRibbon.com finally has a new message board! This one is completely owned and operated by us, it's easy to register, no advertising, and best of all, it works!! Please check it out. We would like our board to become an integral part of The Ribbon as is The Gathering Place.

Way To Go Kevin!! You've done it again!

LINKS

Drugs and treatment for Alzheimer's disease
http://www.lille.inserm.fr/u422/Alzheimer_treatment.html#treatment

Current Trials
http://neuro-oas.mgh.harvard.edu/alzheimers/research/current_trials2.html

Welcome to NeoTherapeutics
www.neotherapeutics.com

AOL News: Mental Gymnastics May Help Delay Alzheimer's (Only on AOL)
There's that "4 million" number again!

Alzheimer's weapon?
www.suntimes.com/output/business/neuro12.html

She's Gonna Fly
http://members.tripod.com/candlegirl29/fly.html
This site has a wonderful song about AD, a beautiful picture and the words to the song. It will definitely bring a tear to your eye.

http://www.simplecare.com/
This site is for those who have no insurance or would like to see doctors not enrolled in your insurance plan. Very reasonable and it has already saved me $50 in one visit.

Hard Choices For Loving People - A & A Publishing
Just wanted to share this site with you, this is an excellent book on decisions that need to be made as the disease progresses that the publisher is offering as a free download, perhaps you can share this information with the CG boards that you are a part of. - Jan/Mina

Email Bag

From ecmick@msn.com

Hi, just a note to let you know how much I appreciate "The Ribbon". Although I don't ever get into your chat room, I do read the "Ribbon" from start to finish each and every time you send it.

I am truly grateful for this reading material.

My husband is not doing so well. After becoming violent at the Alzheimer's unit of the assisted living facility where he lives, he was shipped out to a behavioral unit at a local hospital. There, they adjusted his meds, and watched over him with great care. They hated to see him leave, as they said he was their "Mascot". He smiles a lot, and is generally very good natured.

Well, being back at the ALF, he was doing fine for about three weeks, and then he got violent again. I ran right down their after receiving their frantic call, and he truly was full of anger. He seemed to single out one particular resident this time. In the past he was mad at everyone he came into contact with. My heart was broken to see him this way. I managed to calm him down, and then I had him go for a run. I figured maybe if he ran, he could get some of his frustrations out. Well, I think it worked, because he calmed down completely after that. Then we took a walk, and I spent time giving him a pedicure. He has been fine since, although that was only days ago. Today he was exceptionally well. He even said a few short sentences which actually made sense. There also was a lot of incoherent sentences too, but I am grateful for the few sentences he did speak that made sense.

I hope to join in at the "Gathering Place" soon.

Sincerely, Selina

From panamajava
from The Ribbon Guestbook

hello,

i'm 42 yrs. old. my 75 yr. old mother has alzheimers, phase 3 now, i cared for her since i was 15 years old. i lived with her for the last 8 years, until she had to go to a nursing home. i have 4 siblings that were never around(only when they wanted something). i got a durable poa months before due to signing her in the hospital and programs. my mother was in a nursing home until my older sister kidnaps her out before thanksgiving, we were all thinking she wanted to take her home for the holidays. not the case, she intended to care for her herself. she took her to another state.

now she has filed for guardianship in her state. my state don't know how to get her here. my sister want let me see or talk to her. can you help me, i have one atty in fl. and one in ga. can you help me.

concerned daughter

From Cmendoza57

My name is Chris and my mother, Ernestine, was diagnosed with Alz last year. She's in the early stages, so the doctor's say, but already she's fighting us. She has consciously decided not to take the Exelon because she claims, "I will not live confused and with a stomach ache everyday of the rest of my life." Of course, we want what is best for her but because we can not monitor medicine intake 24-7 we are wondering if perhaps we should consider this for her sake. At least for the moment. We have heard stories where caregivers a have discontinued medications and have reported that the parent did do well. Do you have any stories or information you can share with me. I would greatly appreciate it. If not, is there another lead/source that you could refer me to.

Sincerely,
Chris M.

From MDyrek

Does anyone know where I can find a clock that has the day of the week spelled out on it in large letters?... I'm looking for something that sits on a table and would give the time and say "Monday" for example. I thought that this would be easy to find but I was mistaken...any ideas?... Thanks, MaryJane

From Ridley6
In response to the letter from Charbeaner

In response to this letter, she can try the place I use for my mothers clothing. They are wonderful! She can call Buck and Buck at 1-800-458-0600 to get a catalog and/or go to their website www.BuckandBuck.com to see. Not sure if the entire catalog is online or not, but you can get a good feel for their things from the website till you get a catalog. They even heatseal in the persons name into the clothing at no extra cost.

Ridley6

From PHOTOLJT

Again, you two continue to blow me away. I want to thank you both from the bottom of my heart for your most recent issue of The Ribbon, Volume 5, Issue 4, Strategies for Managing Stress.

I had been having extensive talks with one of my dear online friends as to how things with her husband's condition were not so much worsening, but that she was feeling stressed, depressed, and to be quite honest, at the end of her rope. My suggestions to her were exactly as listed in this issue. When we talked after she got the Ribbon on Tuesday, she couldn't say enough good about the issue, the information you all put forth, and the strength she has "gathered" from The Ribbon and The Gathering Place. (Couldn't resist the play on words, sorry!)

Thanks you two for being "on the money" and doing such a great job!

Love Always,
Linda

From PoeticMawmaw

Hello again, this is Sylvia Allison, I was a caregiver from my mom for three years. We lost Mom on Valentines Day 2000. Well, it`s been a year now and I am still working on book and also writing poetry.
I'm sending a poem I wrote to mark the first year:

Although She's Not Here...

Although she's not here, her memory lingers
Still see her face, feel the touch of her fingers
Rubbing my face or stroking my chin
Her memories are hers now, they abide within
She knows me now I am sure of this
No need to question where she is
She dwells with my Savior in Heaven above
While everyday, I still feel her love
Although she's not here, I know in my heart
These feelings for her will never depart
She watches me now as I think of her here
Beside me, to guide me and fill me with cheer
Although she's not here, I can still wear a smile
Because of this woman I had for a while
Throughout my whole life she stood by me
To protect me and love me so abidingly...

I love you, Mama
Sylvia
2/16/01

I miss my Mom so very much and I wouldn`t trade any of the times of my taking care of her for anything in this world! God Bless All Who Partake Of This Task, There Is A Reward For You!

Sylvia

Everyone please wish Karen a nice and safe vacation as she heads to New York to visit with her son and his family. Yea! She gets to see the Grandkids!

Until next time we wish for you
Hugs and Peace,

Karen and Jamie