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The Ribbon - Care for Caregivers
Volume 7, Issue 2
February 2, 2003

www.TheRibbon.com

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

Happy GroundHog Day! I hope that the old guy doesn't see his shadow this year. I don't know about you but I'm growing weary of these gloomy cloudy days! I'm ready for some Springtime weather right now.

Although the date on here shows the 2nd....I actually do this the night before, therefore it is Feb. 1. It is my birthday. It is the 9th anniversary of my 39th birthday. I had hoped to spend the day being carefree but when I woke this morning and saw the TV, it has made me do a lot of thinking.

First I want to say that our hearts go out to the families and co-workers of the crew of the Columbia Space Shuttle. This was such a devastating thing to happen. I can't begin to imagine to know how those families are feeling. To be on the edge of their seats, knowing their loved one would be home on earth in about 16 minutes and then to find out that they were no more. It had to be horrific. My heart has been heavy today everytime I thought about them all. Needless to say, I have said quite a few prayers.

Second, being my birthday, I have felt the love of my family and my friends. I have felt happiness along side the sadness today. It made me realize that this is how our days tend to run on a similar path each day we live with Alzheimer's Disease. We are so saddened when we see our loved one lose another part of themselves but yet we are filled with love when we see that they still have so much left. Examples are.....Our loved one may not remember us for days, weeks, or months but one day they call us by our name. Or they say "I Love You" and you know that they are very aware of who they are talking to... or YOU realize just how much closer you have grown to the person you are caring for because of what you do.

I have felt sad today not only because of the terrible tragedy but because I realize that I have been caregiving for about 9 years now and have seen what this disease does to my loved ones. I've been happy thinking back to the little things that happened that make me giggle or fill me with overwhelming love. I am now grieving that my mother has had this terrible accident that has changed her personality but I'm am so excited that thanks to physical therapy she is now physically stronger than she has been in years.

I had hoped to quit smoking before Mama came home but have found out that the stress is too great right now. I am smoking outside the house so that at least Mama won't have to smell it inside. She was a chain smoker before this happened....4 packs a day. Now that she isn't smoking she is doing so much better.

She begged me for a cigarette one night....I finally gave in and gave her one. She smoked it and coughed all night long...something she hasn't been doing since she came home. A few mornings later she asked for another....I truthfully told her that I did not have any. She told me that she knew I did and she wanted one. I finally told her that I did not have any and wasn't going to go buy any. I got very upset with myself because I hadn't quit so that we didn't have to go through that. Then I got mad because I thought, geez, I have given up my life for 9 years and why should I have to give up my cigarettes! I threw myself a major pity party that day.

Want to know what saved me? I made a phone call to PHOTOLJT and asked her if I could vent for a few minutes....she of course said yes as long as it wasn't about her. (Smile) Her advice to me was for me to realize that I had cut back on my smoking since I was having to go outside now so therefore I was doing better than I was before, and if Mama were to ask for another cigarette then I was to tell her that the Doctor said that Mama COULD NOT have another or she would have to go back into the nursing home. I could also tell her that I could be brought up on Elder Abuse Charges as the smoking was extremely hazardous to Mama's health. Fiblets??? Yes, you bet and I will use them if necessary.

That brings me to a point.....I have been reading a book called 'Share the Care': How to Organize a Group to Care for Someone Who is Seriously Ill by Cappy Capossela and Sheila Warnock. Their idea of a Care Group is terrific and can be adapted for an Alzheimer's Patient. I will continue reading this book and will work on an article about this for The Ribbon. If this type of idea were put into place all over it would help make a caregiver's job much easier.

I consider Linda one member of my group...she is always available for me to talk to, as are many members of my family.

By the way, Carole cmullikens@charter.net was the person who told me about this book and even sent me a copy. She has been diagnosed with Vascular Dementia and is on the board of DASNI.

I do want to say thank you to all of you who wrote to tell me how easy it is to give an insulin shot. The first one was scary and now I feel like a pro. You guys are so terrific!

Jamie


What is "Communication" to the Person with Alzheimer's?

by Mary Emma Allen

So many people think those with Alzheimer's can no longer communicate nor have feelings. We don't know what they can hear and understand, especially when they have hearing problems, too, or often cannot form words, only sounds.

Communication to them becomes touch, a kind voice, a loving atmosphere. We learn so much about various ways to communication if we're patient with our family members and friends with Alzheimer's or dementia.

A smile, a touch, a kiss on the cheek, soft words would bring a smile to my mother's lips.

Did she know who I was, what I was saying, why I was there? I don't know for sure. But it didn't really matter as long as I brought enjoyment into her world.

When I visited with my grandchildren, Mother suddenly began to make sounds which caused the five-year old to giggle.

"Grandma Dee Dee talk to me," he said.

Then he jabbered to her while Mother looked toward him and mumbled some more. To this day, several years after my mother's death, he still insists she talked to him that day.

Did Mother understand what we were saying in our conversation around her? Did she understand her great grandson? It didn't matter what we thought...both of them seemed to be on the same wave length for those few minutes that day.

We don't know for sure how much someone with Alzheimer's can hear and comprehend of conversations around them, because they can't verbalize a response. However, some form of communication takes place which doesn't have to be in words, to bring contentment to our family member and a sense of peace to ourselves.

(c)2003 Mary Emma Allen

(To help others understand...for their loved one's sake and for their own, I write and speak and share my experiences with my mom and aunt. Out of this has grown my book, "When We Become the Parent to Our Parents." For more information, visit my web site: http://homepage.fcgnetworks.net/jetent/mea; E-mail: me.allen@juno.com)


In Passing: Those We Must Remember

A New Angel

There is a new angel up in Heaven. Her name is Maria. She was only 36 years old. She was a wonderful wife, mother and friend. She leaves behind her husband, Jack and 3 beautiful children. She was very close to her sisters and her brother. Her passing leaves a tremendous void in all of their hearts.

And in mine.

At a time when I had torn up my life, had given up a good job and moved 400 miles to help my brother to care for my mother's advancing Alzheimer's Disease, Maria was there for me. She became a caregiver to my mother; went to Mom's daily to fix her lunch, see that she took her meds and mostly, was another pair of eyes to help me to cope with Mom's changing personality.

She was tall and thin and we made unlikely friends. She was just a little bit older than my own daughter and yet we had a bond. Her sparkling eyes would light up when she would visit my Mom, the smile was broad and the care so obvious. Her own mother had passed at a young age and she sort of adopted "Grandma Rita" as her baby girl Jena would call Mom. So many hours of laughter and smiles. She was so good to my Mom.

When Mom's housekeeping became nonexistent, Maria and I would scheme. I would take Mom to the store and Maria would go into Mom's to do the cleaning.

Always she treated Mom with the greatest respect, no matter how silly the stories Mom would tell. She and I would sit with Mom over a cup of tea and listen to these stories, Maria looking to me for verification of what Mom was saying. Later, when it was just her and I, we would laugh at how far-fetched they were....no, we never had a summer house on the ocean....no, Mom was not supposed to be on the Titanic...and sadly, no, my dad was not coming home. He passed in 1993.

In 1999, when we finally had no choice and had to place Mom, Maria was there for me. Being supportive, being my friend.

I saw her this past December. She was still tall, no longer thin, swollen from the drugs fighting the horrible disease that riddled her body. Her gorgeous, long blond hair was gone and she wore a cap. She saw good in that too. Said it was liberating not to have a "bad hair day" anymore.

Now she is in Heaven, with my Dad, with our beloved Jane and so many other angels and I know that she is looking after Mom and will be there when Mom comes home. My heart is heavy and missing her.

Karen


GoF '03

Hi Everyone!

Now that we all have had time to work through the holidays and all of our Alzheimer's memory walks have taken place, it is time to begin seriously planning out Gathering of Friends '03!

In October 2001, approximately 20 folks gathered in Nashville, TN for a great respite weekend and to participate in the Alzheimer's Association Middle Tennessee Chapter's Alzheimer's Memory Walk. Gathering of Friends 2001 or http://www.theribbon.com/gof/. This is the link for you to view what fun was had for the weekend of October 5-8 2001.

Now we need your help. We need to hear from you! YES YOU! We have one offer of having GOF '03 in Cincinnati, Ohio who's walk is scheduled for Sunday, October 5, 2003. We need to hear from you! Is this a place you would like to go? And if not, would you be willing to host this year's gathering? Things to keep in mind: We would like to keep the end of September or beginning of October for the gathering time. The location needs to be centrally located. Another thing to keep in mind is the location of hotels/airport/walk site. Whom ever offers to do this will not be in the job by themselves. In 2001, there were 4 different folks taking care of tasks so things did not fall just on one person.

We really need to get into the planning for this year. We would like to be able to give folks an idea so they may plan for respite, airline tickets and so on. So please, put you thinking caps on and get on the phone and call your local Alzheimer's Association to find out their date! Once you have decided to help and have the date, send an email to me Linda@theribbon.comand I will compile a list of dates and locations. We would like to have this response by March 1, 2002. We will compile a list of locations and dates and publish for you to provide input as to where you would like to attend this year's Gathering of Friends at!

Hope to hear from you soon!

Love Always,
Linda
Linda@theribbon.com
The Gathering Place

Online Alzheimer's Caregiver Support
http://www.theribbon.com/GatherPlace/
Contributor to Finding the Joys in Alzheimer's (page 76)


Before I Forget

The Person With Dementia's Perspective

Dear all

These two projects are to keep you informed not only about me but for all who have been diagnoses and not diagnosed with the early stage fatal dementias. They are not elderly diseases, our international group has two carepartners of teen agers and we have PWiDs (persons with dementia from 23 through 30's, 40's and up to 80's with early stages).

You Don't Look Like You Have Alzheimer's
The Hardships of Having to Convince

I may not 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 disastrous 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 to me
But day to day it changes on how loud, how much and what kind
Doing things is still fun for me
It is the planning that's too much
Although i still have many opinions
Decisions become stressful for me
The track my brain follows can only carry one thing
If a second or third
Try to enter all three get lost
I have a hard time speaking my mind
It may come our rude but it is not meant to be
I lose track of when I talk to you or what was said
So reminders make me o.k. with this
My brain gives me the best service when it is not tired or confused
And many more things make me tired or confused
I seem to get crying spells for no reasons
A Kleenex 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
Aloha
Mom
Jeanne and Antie

From jleehawaii@aol.com


"Alzheimer's Disease: Unraveling the Mystery" updated

The National Institute on Aging's Alzheimer's Disease Education and Referral Center is very pleased to announce the release of the newly updated publication "Alzheimer's Disease: Unraveling the Mystery."

This 60-page book and accompanying CD-ROM offer a comprehensive overview of the brain and Alzheimer's disease (AD) in easy-to-understand language. Contents include: a walking tour of the brain; current research and understanding of the causes, diagnosis and treatment of AD; and resources for AD caregivers. The CD-ROM includes an animation video showing the progression of AD in the brain, as well as graphics and text files.

Copies of the book are available FREE from the ADEAR Center, by calling 1-800-438-4380, or by e-mailing adear@alzheimers.org. You can preview or download the publication online at: http://www.alzheimers.org/unraveling

Please pass the word to others who may be interested!

Sincerely,
The staff of the ADEAR Center
A service of the National Institute on Aging


Have you ever been sitting at your desk, diligently working away (big smile) and pick up the phone to hear a frantic voice, "Do you have time to listen to me snivel for a bit?" Sure! You bet! Let it rip!

This voice was our very own Jamie. As you have seen in her opening notes for TheRibbon in the last few months, she has undertaken the tremendous tasks of caring for her Nanny and Granny (who passed away within 2 days of the other), her Mother, who had a bad fall recently causing some dementia, and also her husband, Nick, who is in the early stages of Alzheimer's. If you are anything like me, I am completely blown away as to the strength this woman has. Completely amazing! So it was no small wonder she needed to vent...and vent she did! I was proud of her!

My point in bringing this up...one can only do so much for so long. This week in The Gathering Place, one of our chatters relayed that one of his live support group members passed away from stress. Uh Oh! This set off a huge alarm for me. Stress...who has more stress on their plate right now than Jamie?

Coincidentally, I was on the telephone this week with Paula Hathaway from Nashville's Middle Tennessee's Chapter of The Alzheimer's Association. We were discussing a variety of issues, when Paula asked if Jamie was aware of a respite reimbursement plan they had available. Gee, I don't know, but tell me more. In short, a $200 a month reimbursement for respite care; some qualifiers, but well worth the investigation.

My point, in a very long, round about way, each of you need to be investigating with your local Alzheimer's Associations to see if any assistance is available to you! Additionally, with me here in California, I have a live Bunco friend who's parents are going through some of the same issues, respite help for Mom. In addition to the Alzheimer's Association, I contacted the Department of Human Resources, Department of Aging and other agencies to obtain resources for this lady and her family to call.

Remember, stress is a caregiver's worst enemy! We heard it this week in chat. Help is available, you just have to know where to look. Just because I have spoken of the Nashville Alzheimer's Chapter or the agencies here in California, it does not mean there aren't resources available in your area.

Also please remember, it is not a sign of weakness to ask for help. Rather, it shows great strength! Please investigate avenues of help for you today!

Love Always,
Linda
Linda@theribbon.com
The Gathering Place

Online Alzheimer's Caregiver Support
http://www.theribbon.com/GatherPlace/
Contributor to Finding the Joys in Alzheimer's (page 76)


A Life of My Own

by Marcia

A life of my own with some privacy
Oh how heavenly that might be.
To sleep, work, rest and play when I need,
With few interruptions for hubby and me.

To finish a thought or a conversation,
or a project in my own work station.
To make love with my husband without any fear
of persons and problems coming too near.

How nice it would be to take off in the car
with no reprimands on me for my trip to mar.
To take a long bath or a nice hot shower
without it taking all of my strength and power.

To wake in the morning to peace and quiet,
no one in my face just ready to riot.
A house for a couple to love and admire
Just a life of my own is my one desire.

No clocks to punch - no schedules to keep.
To build on a love so true and so deep.
To visit and play with my grandkids three
But only to do it when I feel the need.

To talk freely on the phone or in person.
Freedom to decide on my own diversions.
Freedom to come and go as I please.
To not hear footsteps on the stairs and freeze.

To wake in the morning and not dread the day.
To see sunshine, smiles and be able to play.
A life of my own is my hearts desire.
To live, laugh and love is what I require.

From arnold055@chartertn.net

Editor's note: Marcia is kind enough to send this in to show what she is doing to relieve stress. This is such a creative way to journal!


Hugs and Peace,
Jamie and Karen

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