Christmas is finally over! I've had such a terrific time but it seems like I've been celebrating since Thanksgiving. Our family gathering on the 14th turned out so well and everyone enjoyed themselves so much that the majority are coming back on February 15th.!
My dearest friend and sister, Linda, got to come back on the 22nd to spend Christmas with Mama, me and my family. She is still here and I'm loving every minute of it. We were pretty much raised separately when we were younger so these visits mean so very much to us now as adults. We have become so close in the last several years. We will be able to ring in the new year together and that means a lot to me.
My heart hurts right now though as things are happening with Mama. I told her tonight that she needs to start thinking about moving in the house with me. She is no longer able to bend down to put on her panties and pants or her socks and shoes. She is no longer picking up after herself at all. She says she forgets. I've been doing the cooking for her since she moved up here so I don't have to worry about her burning something in the kitchen. She isn't walking very much now and that is what she really needs to do for her Diabetes and Congestive Heart Failure. She just gets so out of breath and so weak she can't stand.
I noticed that when we were opening presents that she just didn't have reactions like she used to. She had that dang "blank AD" reaction. She hardly laughs anymore.
So.....I will spread some of my Coca-Cola collection around the house more and pack up the rest. I will not have a Coke room until way in the future and that's the way it's meant to be.
A few last thoughts for you for the end of 2002 and some new thoughts for 2003. I thank all of you for your help and support this year. It has been a really tough year for me. There were so many times that I wanted to say, "I don't want to do The Ribbon anymore. I don't want to hear the words Alzheimer's Disease or Dementia again. I can't stand it that another person has been diagnosed." Then someone would send a letter saying how helpful The Ribbon is and how they found just the right answer. One of you would send us a letter asking us to keep up the good work. It seems that these letters always came at just the right time. Just when my strength seemed to flag downward we'd get something from you and my energy soared! I couldn't let anyone go through what I went through when I first started looking for help.
Y'all are the greatest and I wish I could give each and everyone of you a personal hug and tell you individually how much you mean to me.
For my family, I Thank You for being there for me. As a co-editor of this newsletter I hear so many stories of families who leave the caregiving to just one person and do not offer to help or even admit that there's a problem. Y'all have not done this. You have participated in every way you can.
Andy, my brother, you were primary caregiver for so many years and I'm glad I was able to take that burden off of you so that you and Samantha can enjoy your young years.
Linda, my sister, you were secondary caregiver and made so many trips to help out. You are still secondary caregiver and now you are driving an extra 200 miles to help out. You are the one who I vent to and cry to. I'm so glad we discovered phone cards!
Karen, my friend and co-editor, you were the person who saved me when I went searching. You are the first person I connected to when I was looking for help. I feel we were put together for a reason. I guess 6 years later we can say that we have truly bonded. (smiling).
Linda, my chat hostie with the mostie, you are the one who can pull things out of me and get me talking when I didn't think I wanted to. You always make me feel so much better.
Kevin, my tech guy, what can I say but Thank You, Thank You, Thank You, without you and your know-how The Ribbon would not be what it is today. You are always coming up with such great ideas and making them work for us. You were so young when I first met you and you have stuck with us all these years. I just wish that we could bottle you and make sure everyone could know someone like you.
For 2003 we are working on some changes for the website. There is an announcement later in this issue about one change already in effect.
I hope this is the year we find a cure....it seems that the scientists are getting closer and maybe just maybe this might be the year. I do keep that thought in my prayers.
I hope that our readership falls off only because there are no new people who get diagnosed.
I hope that all caregivers out there can get the support and care that they so much deserve.
I hope that many more of you can come together with us for The Gathering of Friends 2003. We are already starting to work on this and will let you know more about it later.
Love and Hugs to All,
A Final Word
With this issue we bring 2002 to a close for
The Ribbon. It has been a full year for us here at The
The Ribbon Staff
Before You Forget
by Mary Emma Allen
Write down or record those memories of your loved one with Alzheimer's before YOU forget. They are precious, whether they are from years when Mom, Dad, spouse or friend was in complete control of their mind or about those later occasions when life changed.
Also take advantage of your family member's memories of their earlier days and childhood. When my mom began to live more in the past than the present, I'd sit beside her, ask her questions and write down as she reminisced about her childhood, her school years, and teaching at her first school.
"You're interviewing me," she remarked with a smile. Pleased, I guess, that her reporter daughter thought her important enough to write about. Then she continued reminiscing.
Her memories of her early days have become important family history facts and stories for our family...stories we'd never have known if I hadn't taken time to listen to her.
(Some people find it easier to chat with their loved one with the tape recorder going and then transcribing later.)
Also jot down your memories and experiences with your family member or friend as they descended into Alzheimer's. Not all of these are sad. They can be enjoyable and even humorous.
"We don't laugh enough," my mom remarked when my husband and I were laughing at something she had done that struck us as humorous. It was laugh or cry, and laughing helped us cope better. I found, too, that Mother enjoyed these laughter filled times.
Too often we think we'll remember the stories, the family history, the current happenings and not bother writing them down. However, this legacy in memories may be lost to future generations unless we take time to record it before we forget.
(c)2002 Mary Emma Allen
Mary Emma Allen cared for an aunt and her mother who had
Alzheimer's. Some of these experiences are recorded in
"When We Become the Parent to Our Parents." More
information about the book is available at Mary Emma's web
Just in Time for the New Year!
TheRibbon.com(Link: http://www.theribbon.com/ ) has continued to evolve over the last 6 years as we strive to reach as many people as possible.
Now there is an easy way for visitors to see all the most important parts of our site. Our new "Site Tour(Link: http://www.theribbon.com/tour/ )" will take you through our site in just a few minutes. Your own "tour guide" will narrate each section, so visitors will know exactly what we have to offer.
Please take a few minutes for our tour, then share it with anyone who may benefit from The Ribbon. Who knows, you might find something new at TheRibbon.com yourself!
From CAREVOICE@aol.com (Brenda Avadian)
in response to firstname.lastname@example.org (email@example.com)
There are three Rx currently being prescribed for Alzheimer's--Aricept by Eisai and Pfizer (donepezil hydrochloride); Exelon by Novartis (rivastigmine tartrate) and I think Janssen's Reminyl (galantimine). There may be more but these seem to be the ones I hear about most often.
A specialist in geriatrics (neurologist, geriatric physician) will be able to look at your mother and best determine what is her need and if there's an interaction between Aricept and Paxil. She may require a change in the dosage amount or as you are thinking, maybe a complete switch. Each of these Rx's works differently for each person. So even if Exelon works great on one person, Aricept may work better for your mom.
Beyond this, her symptoms sound typical of many of our loved one's experiences down the road of Dementia.