Volume 4, Issue 11 - The Ribbon Newsletter

Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease
Volume 4, Issue 11
December 10, 2000

www.TheRibbon.com

I'm trusting that everyone had a pleasant Thanksgiving. I know we did. My dear Grandmother ate like there was no tomorrow. She even fixed her a plate to take home with her next door. It was a joy to see her enjoying herself so much. We made it a very simple meal with few guests so she didn't get agitated. I'm in hopes that Christmas will go just as well.

Speaking of Christmas, I hope everyone is taking it slow and easy as not to get totally stressed out. I got smart this year and started buying and wrapping in October so I am basically done. I am still picking up some stocking stuffers as I see them though. It is leaving me with some free time to spend with my grandmother since this is the first holiday season she is having to go through without my grandfather. I am thankful that I remembered to get started so early this year.

Jamie

We Could All Learn A Thing From This 10-Year-Old

Dear Mrs. Stephens,

My grandfather has Alzheimer's and our local nursing home gave a class on how we can help him to be happier. My grandmother thought you might want to give these tips to other people.

Always introduce yourself. (I thought this was odd as a grandchild, but sometimes they can't see good or hear and even forget names. They told us to say, "Hey, Granddad, this is your 10-year-old Melissa.")
Ask one question at a time and wait for a response. (I learned that most of us don't wait for an answer if we don't hear them to begin to answer in 10 seconds. Sometimes it takes my grandfather a long time to decide what or how he is going to answer my question.)
Treat the person as an adult, not a child. (I don't talk baby talk or ask stupid questions. I ask him to tell me about when he was young or about what he did during the war.)
Remember the person can sense your mood and attitude quicker than hearing your words. (I see this when my aunt visits. She is always angry about something and he won't talk to her. I try to always be happy and he smiles a lot and always talks to me.)
Approach tasks more than once if the person won't cooperate the first time. (I am given the assignment when I visit to weigh Granddad. He doesn't like to do that. If we talk and walk in the direction of the scales, he will eventually get on them without a fuss.)
Give compliments, which can distract from a bad moment. (If Granddad is having a bad day, I just tell him how good looking he is and what a good football player he is. He forgets that he no longer plays and begins to talk about good memories.)
Don't correct the person if they misidentify you. (My grandfather often calls me Charlotte, who is my mother. I just let him call me whatever he wants to.)

--Melissa M., Smyrna, TN

Dear Melissa,
All grandparents should be so lucky to have you as a granddaughter. Maybe you should teach a class at your school or church.

From Grandparent's Corner by Barbara Stephens in the Nov.18,2000 of The Tennessean.

A Child Shows The Way
A Christmas Story
by Mary Emma Allen

"I'm here, Granny" Ricky announced. Mandy watched the small boy touch the old lady's hand and smile at her. Mom Perkins looked blankly at him and said nothing. Ricky didn't seem to care. He kept chattering away.

"Can we take Granny for a ride to see the lights, Mama?", he asked. Mandy wondered what was the use. Her mother wouldn't know whether there were Christmas lights or not. She didn't realize it was Christmas any more, the season she always enjoyed.

They wheeled Mom Perkins to the activity room. There the nursing home's Christmas tree shone with twinkling lights, and carols peeled forth from a CD player. "See the lights Granny," said Ricky, pointing to the colored lights. "And here's a Christmas ball. It has a picture of baby Jesus in the manger."

Mom Perkins didn't respond, but Ricky kept talking. She doesn't understand, Mandy felt like shouting to her son. She's not the person I remember. Mandy recalled Christmas celebrations of her childhood when her mother played such a prominent role. Then Ricky tugged at her arm.

"Granny smiled at me, Mama," he said with a grin. "She likes the lights." Oh, yeah, thought Mandy.

Ricky continued, "See, she's moving her hand to the music." Yes, Mom Perkins was patting the arm of the wheelchair almost as though she heard the music.

"She always liked Christmas carols," Mandy explained to Ricky. "She liked to take us to church on Christmas when we sang carols."

"She still likes them, Mama," said Ricky. Then he began patting the arm of the chair along with his grandmother. This is what Christmas is all about, thought Mandy, beginning to feel more at peace. A smile came to her face as she watched her son and his grandmother. Ricky has shown me how to enjoy someone even when they can't respond or be the person we remember. I have to accept Mom where she's at.

Mandy realized, too, that her mother could still enjoy Christmas but at a different level now. It took a little boy to show me, she thought.

"Let's take her to see more Christmas decorations, Mama," said Ricky. Mandy helped Ricky push Mom Perkins down the hall to see a Christmas wreath with a bright red and silver bow.

Before they left the nursing home, Ricky placed an ornament he'd made on the nightstand beside the bed...a gift for his Granny. But his greater gift is accepting her where she's at, thought Mandy, and teaching me to do the same.

(c)2000 Mary Emma Allen

(Mary Emma Allen is the author of "When We Become the Parent to Our Parents," the story of her mother's journey through Alzheimer's. The story above was inspired by the interaction of her grandson and her mother. Mary Emma is a columnist, children's story writer, and book author.
Visit her web site: http://homepage.fcgnetworks.net/jetent/mea;
EMail: me.allen@juno.com)

Links

A Year to Remember...with My Mother and Alzheimer's Disease

There is a wonderful article here entitled "Coping with Holidays as a Caregiver" by Brenda Race. I just found it and requested permission to reprint but I wanted you all to be able to read it now. I didn't give Brenda Sibley a chance to reply. I thought it was useful for right now as it wouldn't do much good to reprint it in our Christmas issue. :)

Dealing With the Three Stages of
Alzheimer's Disease
By Mary Emma Allen

As I learned to cope with my mom's Alzheimer's and help her with this phase of her life, I realized it's a devastating disease, but doesn't have to devastate us nor our family members. At this point in time we can't change the situation; some medications may appear to help slow Alzheimer's down, but we can't cure it yet.

So how do we cope?

I found that learning all I could about the disease helped me understand Mother better and enabled me to assist her through this ordeal. Knowing what to expect doesn't lessen our emotional turmoil nor sadness that this is happening, but it usually prepares us better to cope and help our loved one.

What is Alzheimer's Disease?

Alzheimer's affects the brain, how one thinks and acts, how one remembers and copes with situations. This illness of the brain results in this organ losing nerve cells which causes problems with the thinking process, with memory, and with everyday living.

Although scientists don't know the exact cause of Alzheimer's, they are continuing their research. There isn't any known cure at this time although the symptoms can be treated, and learning all we can about the disease aids us and our family members to come to terms with it.

Three Stages of Alzheimer's

Generally speaking, there are three stages of Alzheimer's.

Mild Alzheimer's Disease
Moderate Alzheimer's Disease
Severe Alzheimer's Disease

There is no way of knowing how long each stage will last in each person; some symptoms are more pronounced in one person than another. Some will react differently to the events Alzheimer's brings into their lives. However, in general, Alzheimer's falls into these three categories.

Mild Alzheimer's Disease

The first symptom generally is memory loss. However, since memory loss or decrease can be caused by a variety of aging ailments, it doesn't necessarily indicate that a person will develop Alzheimer's. But if memory loss continues, look for other symptoms:

The person repeats the same thing over and over or repeatedly asks the same question even though you've given them an answer.
They get lost easily even though they're very familiar with directions or the area.
They lose or misplace items more frequently than normal.
They confuse names for common items.
They experience some changes in personality.

Moderate Alzheimer's Disease

The above symptoms will become more pronounced at the moderate stage. Other symptoms will appear.

The person may need supervision at home or at an adult day-care center.
There is more trouble with thinking and reasoning.
They may see things that aren't there and become rather paranoiac about people.
They're likely to argue more often, pace around, wander off from home, and eventually require constant supervision.
They forget to turn off water faucets or turn off the stove.
The family member forgets how to dress properly and becomes less caring of his/her appearance.
They also begin to confuse the people they know with someone from their past.

Severe Alzheimer's Disease

At this stage the person with Alzheimer's can't care for themselves at all.

Eventually they forget how to use words to communicate their thoughts.
They usually become incontinent.
They won't recognize themselves in a mirror; sometimes they become frightened when they see themselves.
Eventually they can't walk and need the use of a wheelchair
They fail to recognize family members.
They need full-time care either in their home or in a nursing home.

Finding More Information

I've only touched briefly upon the various stages of Alzheimer's as I discovered them in my mother and my aunt. There are books to read and experienced people you can talk with at assisted living homes and nursing homes, at Alzheimer's support groups, the Alzheimer's Association, and other organizations on Alzheimer's and aging.

(Author Mary Emma Allen is the daughter of an Alzheimer's patient and has been responsible for her mother's care for many years. She shares with others on how to cope through talks and her book, "When We Become the Parent to Our Parents."
Visit her web site: http://homepage.fcgnetworks.net/jetent/mea;
EMail: me.allen@juno.com)

E-mail Bag

From wclausen64@hotmail.com

Karen,

I moved Elsie to Golden Valley Hacienda in Alejuela Costa Rica. It's summer here and nice and warm and breezy. Golden Valley is set up to cater to North American residents with Alzheimer's. They have excellent hospitals and doctors for the dementia.

If possible I would like to share with the Ribbon's subscribers, the care services offered here. Just prior to coming here, Elsie was back in a psychiatric Hospital for behavioral problems that the nursing home could not handle. I decided to make the move because I foresaw a revolving door syndrome between the Psych hospital and the nursing home. Each time the med balancing act becomes less effective, and because Elsie is so young to she is very strong, which makes handling more difficult. Here in Costa Rica the caregivers are much more tolerant, and provide one to three on one service. It will take awhile for Elsie to adjust to the new environment, and get the meds fine tuned.

My email address is wclausen64@hotmail.com and Golden Valley Hacienda's web site is costaricanursing.com. I'm also working on an Article about Costa Rica care for Alzheimer's: An Alternative Long Term Care Strategy

Best regards,
Bill

From LTu1022192

Dear Karen,

If ever I needed the 'thorn' lesson it was now. My husband has been in a nursing home since last April. He went in completely helpless due to a stroke. He has recovered due to the excellent care given him. He is now able to walk and seems to be normal with the exception of terrible temper tantrums. The nursing home has kicked him out since he was a threat to the other patients. His doctor is giving him Alzheimer's medication. As far as I can tell it is not helping. He rolled an helpless old man outside in his wheelchair and left him. Fortunately the staff saw it take place. His temper is violent and I have no choice but to bring him home. I read all the Ribbons faithful. I just wonder if anyone else has had these kind of problems with their loved ones.

Bless you and Happy Thanksgiving, Lorraine Tucker

Editor's note: I know that many of you have experienced these types of behavior problems. Please be kind enough to speed an email to Lorraine to give her some helpful advice. If you would, please send a copy to KMenges581 to be included in the next issue.

From me.allen@juno.com

Thank you, thank you, thank you, Karen. I received The Ribbon this time and enjoyed it very much. Don't know if I mentioned that Brenda Avadian contacted me, asking to use in her upcoming book one of the articles that appeared in The Ribbon. I'm thrilled. All because you used it in The Ribbon.

Have a wonderful Thanksgiving.
Mary Emma

Just in case you are wondering, the last few issues have been shortened a bit. This is due to the hustle and bustle of the holidays. It is easier for us to get out and for you to read.

If you have any articles, poems, stories of past Christmases, or anything you'd like to contribute to our Christmas issue we would love to have them. We want to make it a special issue.

Memories make good reading and help heal wounded hearts when we write them. If you would just like to take a moment to tell someone you love them we would like to have those also.

Hugs and Peace,
Jamie and Karen