Volume 2, Issue 24 - The Ribbon Newsletter

Volume 2, Issue 24
December 10, 1999

You guys are just the greatest. Our Thanksgiving issue was late due to technical difficulties and as far as we know, no one complained. Thanks for bearing with us as we work out the kinks in the approval department. I would imagine that it is an overwhelming job having to check out and keep up with so many newsletters. I hope y'all will continue to hang in there as it all gets straightened out.

Support Group Chats

Here's a reminder of when and where Support Groups meet. We all know that SUPPORT is something we all need. Talking to someone who has or is going through what you are going through is a tremendous help. It keeps us from sinking into the depths of depression. Remember, if you don't take care of yourself, who will take care of your loved one.

allHealth Chats on AOL

Tuesday Evenings
8 pm EST to 9 pm in Positive Reflections for the Alzheimers and Dementia Support Group.

Thursday Evenings
9 pm EST to 10 pm in Personal Empowerment for Caring for Elderly Loved Ones.

Friday Evenings
9pm EST to 10 pm in Health Conference.

Tuesdays and Fridays
At 10 pm those people still wishing to chat go to CSG (private room) to continue.

Web based sites
for those who are not on AOL

Evening Chat
The Gathering Place, where people dealing with Alzheimer's can "Gather"
4:00-9:00 PM PST; 6:00-11:00 PM CST; and 7:00-12:00 PM EST
NOTE** This room is not open on Tuesdays or Fridays

Mid Day Chat
New Mexico Alzheimer's Association Chat Room
Monday, Wednesday, and Friday
12:30pm -2:00 EST, 11:30 -1:00 CST, 10:30am -12noon MST, 9:30am -11:00am PST

The Ribbon Online
To reread past issues, to leave a message on the board, to make a dedication in the Dedication Garden
http://www.theribbon.com/

E-mail Bag

From JDunn56760

COULD THIS POEM BE USED IN THE RIBBON? IT TOUCHED ME DEEPLY, TOO LATE TO GET MESSAGE TO MY HUBBY BUT NOT TOO LATE TO ADD IT TO MY DAILY LIFE. THANKS, LOVE, JAN

If tomorrow never comes........

If I knew it would be the last time
that I'd see you fall asleep,
I would tuck you in more tightly
and pray the Lord, your soul to keep.

If I knew it would be the last time
that I see you walk out the door,
I would give you a hug and kiss
and call you back for one more.

If I knew it would be the last time
I'd hear your voice lifted up in praise,
I would video tape each action and word,
so I could play them back day after day.

If I knew it would be the last time,
I could spare an extra minute or two
to stop and say "I love you,"
instead of assuming you would KNOW I do.

If I knew it would be the last time
I would be there to share your day,
well I'm sure you'll have so many more,
so I can let just this one slip away.

For surely there's always tomorrow
to make up for an oversight,
and we always get a second chance
to make everything right.

There will always be another day
to say our "I love you's",
And certainly there's another chance
to say our "Anything I can do's?"

But just in case I might be wrong,
and today is all I get,
I'd like to say how much I love you
and I hope we never forget,

Tomorrow is not promised to anyone,
young or old alike,
And today may be the last chance
you get to hold your loved one tight..

So if you're waiting for tomorrow,
why not do it today?
For if tomorrow never comes,
you'll surely regret the day,
That you didn't take that extra time
for a smile, a hug, or a kiss
and you were too busy to grant someone,
what turned out to be their one last wish.

So hold your loved ones close today,
whisper in their ear,
Tell them how much you love them
and that you'll always hold them dear,

Take time to say "I'm sorry," "please forgive me,"
"thank you" or "it's okay".
And if tomorrow never comes,
you'll have no regrets about today.

Send this to all that you consider a friend.
Just to let them know
how much you care about them.
You never know, you may not see them tomorrow.
So let them know how much you care about them today.

BRD53197

I would like to be added to the mailing list. My nana was diagnosed w/ dementia the second week of Dec. She had a urinary tract infection at the time & fell in her yard. She spent two weeks in the hospital. She was extremely confused during that time due to the infection. But due to the dementia she can no longer live alone & there is only my mom & my sis & me in RI for immediate family. My aunt lives in AZ w/ my cousin. We are unable to provide 24 hr care at home ( due to finances). There is also a couple nieces visiting nana but for the most part this is our challenge. My mom is in denial & since nana would always take things out on her, she can't see that it is the illness rather than nana being strong-willed. I found your website, while I was looking for help on the internet & it is fantastic. It really helps me to understand the illness & gives me hope for the future. I just want to enjoy the time that I have with her, & I try to enjoy spending time w/ her no matter what.

From Dgcisme

My Mom has vascular dementia...I have a lot of info on it if it would help. You only have to let me know and I would be happy to provide any resources you need.
Jamie knows quite a bit about my situation...known her a long time.
Let me know if you need any assistance.

Diana

From mowry@nauticom.net

Your article on gifts is so valuable. We all want to do something special for the holidays. May I tell you about the photo album I made for my mother?

I didn't want to part with the collection of family photos, because it was my link to the happier times, too. Instead, I put the pictures through the copier and wrote captions underneath, noting that this was her husband or children, even pictures of her house and church. Then I branched out to her scrapbook, copying the clippings of my cousins weddings. Every picture, from the neighbor's baby to the family dogs and cats went into that book.

I knew that the book had to be as durable as a child's toy, resistant to spills and sticky fingers. Each of those pages was slipped into 8 1/2 by 11-inch sheet protectors, then put in a 3-ring binder. I used a binder that had sleeves on the front and back cover, which I filled with photos of my mother and her parents. The staff at the nursing home recognized her photos, so that even the new employees could identify her book. Mother could still relate to the pictures of her parents, even better than she could recognize her children.

I put some extra sheet protectors in the back of the album, and her brothers and sisters brought pictures from their collections. They said that photos from their childhood years were the easiest for her to relate to. They could even make
her laugh with memories of their childhood years.

Mother was never far from her photo album, and the staff said it gave her comfort when she was anxious.

Thanks for your Ribbon that connects us all--Erma

From VWebber491

From the first time I received The Ribbon I have found something useful. The first edition came with the Stages of Alzheimer's, which I was able to share with my husband when he was in denial about his mother's condition. We were able to use this as a check list when we finally talked her doctor about her situation.

The last three issues have been especially helpful, as we had to admit Mom into an Alzheimer's facility in June - she had begun wandering at night. With my husband diagnosed with Stage 4 Lymphoma and going through Chemo - we were unable to care for her here. The last few issues with information on visiting and communicating have been great guidelines for our visits. This latest issue will really help us with planning for Christmas as I need to get her gifts to her now - we will be in isolation as my husband will be undergoing a Bone Marrow Transplant and we are off limits to the world for the holidays.

We have much to be thankful for in our lives - we found a wonderful home for Dick's mom. She is the sweetheart of the ward according to the staff - so nice to get positives instead of negatives from the caregivers. We are thankful to the medical community as a whole - between my mother-in-law with her meds, my husband and his chemo and my blood pressure meds we would be Spokespeople for Dupont - you know - better living through chemicals. LOL.

Thank you again for the time you put into this publication - The Ribbon is a gift I look forward to every other week.

Vee

From NancCall

Thanks so much for a great Thanksgiving issue. My mother has dememtia in the early stages as far as I can understand. Doctors have not been a great help except to say she can not live alone. She remains very functional except for memory loss and some confusion. She is sleeping very well and for that we are grateful. She goes to Senior Day Care twice a week and it is a welcome break.

My uncle, passed away in Sept. and I thought it would be very hard on her but she seems to have accepted it. My aunt is having a hard time adjusting as she was his caregiver for 5 years. As an only child it is hard to have to make decisions etc alone. My husband is wonderful and I don't know what I would do with out him. We are trying to convince my mom to sell her home---it is a slow process. She has been with us about a year but thinks it is only for a short time and she thinks she will be able to return to her home but we know it is not possible.

So like so many others we get through day by day and hope for the best and try to accept what we have. Your newsletters are always welcome and it helps to know we are not alone. Thanks so much, N

From Dazzlejoy

I am fairly new to computers, and have just recently begun following the AD Message Board. That is where I read about the Ribbon. I did print out one issue for my self, but I want to know how to pay for a subscription of the newsletter. I could probably print out from the computer, but the only one making money on that is OfficeMax.
I have been trying to get information about "Memories in the Making". Mina had e-mailed me about it, but I haven't been able to get any more info.

I have had (one has passed away) three maternal aunts with AD. My mother passed away at 83, with no apparant symptoms. I am the caregiver for the 75 year old aunt who had never married. Fortunately, she has a nice nest egg, which will be able to keep her in a nice Assisted Living for quite a while. My heart goes out to all who must face this day in and day out with little or no money. And sometimes no help. I am interested in "Memories in the Making", for this aunt and for her sister who had been diagnosed at least 6 years ago, but who has had her husband to handle their affairs and to watch over her. It may be too late for the aunt I am responsible for, because she is failing so fast, but I may be wrong.

Thanks for The Ribbon. I will read as much as I can online, until I hear from you.

Sincerely, JOY (Dazzlejoy@aol.com)

From Poppybenny

I TOO ..........would like some information on vascular dementia. ARE THERE ANY OTHER MEMBERS IN THE GROUP WHOSE LOVED ONE SUFFERS FROM VASCULAR DEMENTIA?
CAROL

From mcvey1@yahoo.com

Hello, I found your site earlier today at delphi and was wondering if you would mind helping me out a bit if you get a chance. It seems that I am having difficulty finding information on early onset alzheimers. I have a dear friend who is 48 years old and has been diagnosed with alzheimers (for the past 5 years now) and I would like to make myself as aware as I can be about this disease.

I have so many questions to ask, but right now I am actually fearful of some of the answers, so perhaps it's best if I just start reading as much as I can.

I did see the thread regarding "Forget me Never" and will check out finding the book tomorrow. Any idea of when the movie may run again or if anyone got it on tape and would make it available?

Thanks for your time. This is really distressing me a lot right now and I just don't know where to go with it. Are there support groups for early alzheimers for both the sufferer as well as people who care?

Thanks and I look forward to hearing from you soon.

Molly

From Datel123

Such a joyous time of the year. You would certainly think so from all the festive decorations, twinkling lights and bustling people. For every twinkling light I see something different from most. I see one more lost soul to this evil disease. I see one more family torn apart and family members floundering, trying desperately to hold on to their sanity. For those families that this disease hasn't touched it is a wonderful time. So many of us lost the meaning of this great holiday many years ago. The time of year that should bring such a joyous celebration became a time of parents trying to fulfill each child's wish. The joyous birth of our Lord was lost in wrapping paper, fancy bows and how many toys we could buy. But even then we still felt that our lives were complete. You never realize what a blessing you have until it's no longer there. Alzheimer's took every twinkling star from me, it took any joy I might feel in my heart and it has changed my life in a way I never thought possible. I am so confused in trying to live, there are so many days I can't even get out of bed. When I do I wander around the house still thinking that he has to be here somewhere. He isn't. It has been almost three years since this insidious disease took him from me. I no longer could give him the care he needed. The day he was placed in the nursing home I thought I would die from the pain. I now realize it was only beginning. Those of us with this fatal disease in our lives know that the road never seems to end. It just gets longer and longer. The further we go the more difficult it becomes. It seems that every time we reach the top of one hill, we are faced with an even higher one. This disease never lets you reach the end of that road until it has taken you and torn you into tiny pieces that may never be put back together. When I said the words "My life will never be the same, It has changed forever," that is precisely what I meant. None of our lives will ever be the same and we are scared for life inside where it doesn't show from the pain of watching our loved one die in such a horrendous way. To me there is nothing worse than losing my husband to Alzheimer's. With each person its different and my journey isn't necessarily the journey that everyone will take. We all know that every day we wake, we start the day with fear in our hearts of what will happen today? Perhaps we are still trying to deal with the difficulties of yesterday.

The first year John was away from me, I was totally numb. I felt as if I were standing back watching this person who looked like me running around like some sort of crazy mechanical robot on auto pilot. At Christmas I was so depressed I thought I couldn't get out of bed to do anything. There would be no tree. The pain of putting one up was too great and I didn't think I had the strength to do it. I knew I was bringing him home for the 72 hour time I was allowed but the effort of making the house festive was beyond me. We had always done that together and he wasn't here to stand back and tell me what to do next. The night before I was to pick him up I was in the den throwing the collectible bears on that tree with almost a thousand twinkling lights. I can still see his face now as we walked into the house. I also can remember when it became time for him to go back and the difficulty I had in trying to make him understand why he had to go. How could I make him understand when I was so lacking myself? But rules are rules. His 72 hours were up and I took him back. I can remember coming back home alone. The house was so empty and lonely but it seemed that he was here. I wandered from room to room looking for him because I just knew he was here. His presence was everywhere. All of the memories of the holidays came rushing back and I wanted my husband. At first I cried my frustration, then the crying turned into screaming and railing at God for taking my husband from me. I remember just falling across the bed, lying there, unable to get up for the longest time. There was no one here to care. I was alone once more.

Last year he had deteriorated so much and his mood swings had become so erratic that I was scared to bring him home, but once more I found the courage and strength to do the right thing. Its always so hard because the compliance of them being in their home makes it extremely difficult in taking them back. But I brought him home and when I took him back it was with a grateful heart that we had managed once more to be together at Christmas.

This year? I will be bringing someone home with me but it won't be my husband. You ask why? Because this stranger in my husband's body can't possibly be the man I married. This is a stranger who talks of things I know nothing of and cries easily. He has fears of things I can't comprehend. I don't know how to comfort him so we hold one another and sob out our frustration. But somehow I will find the strength and courage to once again go and bring him home with me. Knowing in my heart that his mood could change in a second. And he could decide to physically hurt me. We never know the demons that plague them each day and there are good days and bad ones. We just hope for the best. We prepare ourselves for the constant barrage of questions asked repeatedly. If only for a few short days. There isn't even the ability to pretend that things are normal. It's too obvious that they aren't. I will be taking the hand of a child and leading him into the house. The man I married walked out that door three years ago and has never been back. There has been someone who has the facial features and the body of my husband. There is one thing missing. His mind. The ability to communicate with me and recall events in the past that we have shared. There is no getting down of photo albums and asking him if he remembers when this was taken? Of course he doesn't remember. Most of the time lately he is forgetting me more and more. Each time one more piece is chipped off my heart. My thoughts are never said to discourage or disappoint others in their way of dealing with this disease. It's just that I have been forced to make this long Good-bye alone and the pain becomes too great some days. So when I say for every twinkling, bright, shining light I see a lost soul, others may see the beginning of a new life. I am not envious of their joy, I am thrilled that there can be joy in the lives of others. But today as I write this, Its my life I write about and the things happening to me. I have tried so hard this past year to be an advocate for this vicious disease. Hopefully if I can educate one person in knowing what to expect next and know how to deal with it, I will have done one tiny thing. Knowledge is the only thing that will ever bring you through the maze. Its difficult enough when you know everything about AZ there is to know and be able to apply that knowledge. In not knowing you are going to be totally lost. The only way you can ever cope is by staying one step ahead instead of behind. Alzheimer's doesn't discriminate in its victims and it has no qualms about viciously tearing you into little pieces.

My respect for the two women that put so much effort in this newsletter is beyond words. It has become my Bible and by having the ability to share it with others is such a blessing. If you allow it, Alzheimer's will consume you. It has no mercy and has no qualms in taking victims. Its up to you if you survive. So at this time I want to say Thank You to Karen and Jamie for saving at least one lost soul. That was and remains me. Without your guidance I could have never done this. I would have still been under the bed, peeping out. Through the guidance of The Ribbon I have learned so much that I feel I was led to try and educate others to the reality of AZ. Lets just say that the two of you are that twinkling star for me this year. I love you both to pieces.

My Love,
Dean

We struggle together in trying to cope with Alzheimer's Disease. Together we give each other strength and hope.

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DrMOM1955)