Volume 2, Issue 15 - The Ribbon Newsletter

Volume 2, Issue 15
August 6, 1999

As we begin the last month of the Summer of '99, we would like to take a moment to thank all of our readers for their help and support. Our Ribbon Web Site is a year old this month and doing well! We have had over 3,000 hits on the site, have received recognition and awards and continue to be a source of help and information for people who are just beginning their journey with their loved ones through the world of Alzheimer's Disease. Please put it in your "Favorites File" and check it often. Our site manager, Kevin, aka Weather91, is always working on improving and updating the site and it gets better and better. Thanks, Kevin for all your hard work!

http://www.theribbon.com/

We tend, at times, to forget that everyday there are more and more families receiving the word that their loved has AD. For those of you who are new to The Ribbon, we offer the 7 Stages of AD. It is merely a guide and as all people are different, we remind you that your best source of information concerning your loved one is their doctor.

GLOBAL DETERIORATION SCALE FOR ASSESSMENT OF PRIMARY DEGENERATIVE DEMENTIA
1) NO COGNITIVE DECLINE	No subjective complaints of memory loss No memory deficit evident on clinical interview
2) VERY MILD COGNITIVE DECLINE (Forgetfulness)	Subjective complaints of memory deficit, most frequently in the following areas: forgetting where one has placed familiar objects forgetting names one formerly knew well. No objective evidence of memory deficit on clinical interview. No objective deficits in employment of social situations. Appropriate concern with respect to symptomatology.
3) MILD COGNITIVE DECLINE (Early Confusional)	Earliest clear-cut deficits. Manifestations in more than one areas: patient may have gotten lost when traveling to an unfamiliar location co-workers become aware of patient's relatively poor performance word and name finding deficit becomes evident to intimates patient may read a passage or book and retain relatively little material patient may demonstrate decreased facility in remembering names upon introduction to new people patient may have lost or misplaced an object of value concentration deficit may be evident on clinical testing Objective evidence of memory deficit obtained only with an intensive interview. Decreased performance in demanding employment and social settings. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms.
4) MODERATE COGNITIVE DECLINE (Late Confusional)	Clear-cut deficit on careful clinical interview. Deficit manifest in the following areas: decreased knowledge of current and recent events may exhibit some deficit in memory of one's personal history concentration deficit elicited on serial subtractions decreased ability to travel, handle finances, etc. Frequently no deficit in following areas: orientation to time and person recognition of familiar persons and faces ability to travel to familiar locations Inability to perform complex tasks. Denial is dominate defense mechanism. Flattening of affect and withdrawal from challenging situations occur.
5) MODERATELY SEVERE COGNITIVE DECLINE (Early Dementia)	Patient can no longer survive without some assistance. Patient is unsure during interview to recall a major relevant of their current lives, e.g., an address or telephone number of many years, the names of close family members such as grandchildren, the names of the high school or college from which they graduated. Frequently some disorientation to time (day of the week, season, etc.) or place. An educated person may have difficulty counting back from 40 by 4's or from 20 by 2's. Persons at this stage retain knowledge of many facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.
6) SEVERE COGNITIVE DECLINE (Middle Dementia)	May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting form 10m both backwards and, sometimes forward. Will require some assistance with activities of daily livign, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar form unfamiliar persons in their environment. Personality and emotional changes occur. These are widely variable and include: figures in the environment, or talk to their own reflection in the mirror obsessive symptoms, e.g., person may continually repeat simple cleaning activities anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur cognitive abulla i.e., loss of will power because an individual cannot carry through long enough to determine a purposeful course of activity.
7) VERY SEVERE COGNITIVE DECLINE (Late Dementia)	All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g. ability to walk. The brains appears to be no longer able to tell the body what to do. Generalized and cortical neurological signs and symptoms are frequently present.

In Passing: Those We Must Remember

From Sybil

Dear loving group, My beloved father passed out of his body on July 20th. He was and is my very heart. Your newsletter helped me more than I can say in getting through the most painful experience of my life. I watched him go from 200 to 117 pounds. Although he could hardly talk or make sense(a struggle for a brilliant man)..he managed to share the most beautiful goodbye with me, and managed to ask if I was ok..he was concerned. I reassured him and he then said "You take care of your self and I will go home...." then he added "with you". He died a couple weeks after. He also told me he would give me light. When I left him after that statement and came home July 4th, when I opened the door to my condo..a band next door was playing, "Goodnight sweetheart, well I have to go. I hate to leave you but I really must say..goodnight sweetheart (what he called me) goodnight". As I walked in my condo at that same moment, it was filled with the most gorgeous sunset and light I had ever seen..fuscia and orange FILLING my place, and I remembered his statement that he would give me light. Even my neighbors agreed it was the most awesome they had seen.

I grieved so hard for a year that at one point I didn't want to live and needed counseling and medication. I didn't realize until now how watching daddy deteriorate and suffer was eating me alive. Your issues were so timely. the week he became incontinent, that was your subject. Right before he passed, your newsletter was on death. I know this newsletter is run by G-d because of those coincidences. I CAN FEEL my father's peace now. He was the most awesome unconditionally loving person I have ever known. He had a marvelous sense of humor. A month ago we were in the hospital because he had fallen. I said, "Daddy, I love you so much", and he answered "you are in trouble".

I just can't thank you enough Kay and all who shared..............I cried when I read the newsletter many times, mostly because I didn't feel alone for the first time as I read.
Please take me off the list for the newsletter, and if anyone wants to write to me individually I will be happy to correspond.

Jewish nun (Sybil)

From NO900

My husband Dan passed away this morning. He developed heart failure and went into a coma on Thursday evening. I am having a lot of guilt because of the way I lost my patience with him and I am sorry that I didn't try harder. It is a terrible affliction and very difficult to deal with. Tell all in the group to try hard to cope before it is too late so that they won't feel guilty. I wish I had a little more time to be able to cope. Even though he was in a coma, I told him how sorry I was that I scolded and locked him out of my computer room. I know he didn't know what he was doing but I just couldn't help myself it was very trying and now he is at rest.
Sincerely, NO900

E-Mail Bag

From Kilbco

Thanks for all messages. They do help to keep going along. My husband has had Alzheimer's for more than ten years. He has been in a Nursing Home now for 2 and a half years. I want to say a word about how wonderful nursing homes can be. My dear husband is so well cared for there and is much happier than he was at home the last several years I took care of him at home. It is still so very painful to see him slowly disappearing from the reality of life. He can no longer walk or feed himself and has lost the ability to speak. But he is always so well groomed, well fed (he loves the food although it has be pureed for him now and spoon-fed to him) and always shaved, combed and neatly dressed. The home is only six miles from our house so I get to see him real often. Please tell others not to fear having to send a family member to a nursing home. They can be really wonderful places for Alzheimer's patients. And my husband is in a County Facility. So let's all try to keep heart and help get each other through this time.

From JDunn56760

Thanks for your explanation of Distress. Except for one thing MINOR UPSETS it suits me to a "T" and yet my love has been in a home for 4 months now. I did get hurt one more time in a hitting manner by getting myself in the wrong place at the wrong time. Otherwise he is there with his peers and never asked to leave. I am Distressed because of all the changes we have to make and I have a list which I have almost completed. My biggest thing was to get his Organ to the home as a Donation. Biggest only in size not the multiple adjustments to change after almost 52 years together. One of my personal helpers is my Granddaughter and another Paula Pears who lost her Mom, then Dad then her husband of 48 died. She was a personal help. The Chats and the Ribbon are next in line of help.
There isn't a right or wrong to what we do for our loved ones just do what is in your hearts and forget your loss of temper, yes we do lose it sometimes.
thank You
Jan Dunn

From rvt5@earthlink.net

Hi,

Thank you so much for adding me to your mailing list. I was able to bring up past Ribbon newsletters and have been reading them as time permits. I have cried-laughed and had some release which I greatly needed. My husband 76 has AD. I am looking forward to receiving the newsletter. Thank you again.

Rosalie

From I rx pts:

Dear Love/Care givers!

Just a quick note. There were some wonderful and sad replies to the letter I wrote. I am going to try again. Just as the address says. We are all care and love givers! There is no easy way! All of you can tell this. Everyone has pretty strong feelings about what type of care they want for their loved ones. And sometimes it is possible to carry it out just as planned. Sometimes it isn't possible. But isn't this just like life?

The very last thing we need to do is argue within our "group"! We are all facing almost impossible choices on a daily basis. I made the mistake of letting someone's pain make me put up my defenses. I wish that I could take that back, but I can't. But I can learn from my mistake. And for the future I hope that this will remind me that perhaps I should listen harder, and find out what the person speaking is really saying and feeling. And I will be slower to jump out to defend my position due to my fears. Instead I hope I will express caring and concern and admit to my fears.

There will never be a "correct" answer for most of us when it comes to this disease until there is a cure. So when we start being angry I hope that we can all realize that we are angry about Alzheimer's and Dementia.

Thanks for the "ears"!

Sincerely, Rita

From SarahGODD

Letting Go
Author unknown

To "let go" does not mean to stop caring,
it means I can't do it for someone else.

To "let go" is not to cut myself off,
it's the realization I can't control another.

To "let go" is not to enable,
but to allow learning from natural consequences.

To "let go" is to admit powerlessness,
which means the outcome is not in my hands.

To "let go" is not to try to change or blame another,
it's to make the most of myself.

To "let go" is not to care for,
but to care about.

To "let go" is not to fix,
but to be supportive.

To "let go" is not to judge,
but to allow another to be a human being.

To "let go" is not to be in the middle arranging the outcomes,
but to allow others to affect their own destinies.

To "let go" is not to be protective,
it's to permit another to face reality.

To "let go" is not to deny,
but to accept.

To "let go" it not to nag, scold or argue,
but instead to search out my own shortcomings, and correct them.

To "let go" is not to adjust everything to my desires
but to take each day as it comes,
and cherish myself in it.

To "let go" is not to criticize and regulate anybody
but to try to become what I dream I can be.

To "let go" is not to regret the past,
but to grow and live for the future.

To "let go" is to fear less,
and love more.

The Caregiver's Voice

Brenda Avadian, The Caregiver's Voice, will be in Las Vegas, NV on the 20th and 21st of August.

Brenda Avadian, speaker and author of five books, wrote, "Where's my shoes?" My Father's Walk Through Alzheimer's in order to help other caregivers not have to walk this road alone. In addition to helping others with information, she is donating the sales proceeds of her book to groups and organizations that help people with Alzheimer's and their families. The Las Vegas Review-Journal and Las Vegas Sun have already written articles about Brenda's father and her book.

Friday, August 20, 1999
Alzheimer's Association's Southern Nevada Chapter -- sponsored by Alterra Assisted Living Centers.
Reception, presentation, and book signing from 2:00 - 6:00 p.m.
Address: 5190 South Valley View Suite 101 (Cross streets: Tropicana Ave. and Valley View)
RSVP to the Alz. Assoc. at 248-2770
FREE, they just need to know how many people to expect for refreshments and room set-up

Saturday, August 21, 1999
Barnes and Noble Bookstore
Meet the author and Book signing at 2:00 p.m
Address: 2191 North Rainbow Blvd Las Vegas 631-1775

Please be sure to say "Hello" if you attend!!!

Upcoming appearance:
August 26, 1999 Pasadena, California
Pasadena Senior Center 7:00 - 9:00 p.m.

From KMenges581

On a personal note, I would like to take advantage of this opportunity to thank you all for the notes and e-mails you all send to me. The unwavering support and words of comfort I recieve from all of you is appreciated beyond what words can express. I have been absent from the group meetings lately due to a demanding schedule at work. I miss you all so much! Hopefully, things will settle down shortly and I will be able to return with some regularity. Please keep "those cards and letters" coming in, The Ribbon is your newsletter.

Summer will soon pass, vacations will be just pleasant memories, routines will return to "normal" and the caregiving will go on. At risk of repeating myself, please remember that it is only through sharing that we make it day to day, through the maze of AD. Reaching out and helping someone else helps you too. We are blessed to live in a time when that "reaching out" extends far beyond our physical limits, there are no boundries. So, reach out, share information and feelings...use The Ribbon as your medium to connect to others who struggle with AD.

with love and thanks, Karen

Hugs and Peace,

Karen (KMenges581)
and
Jamie (DRMOM1955)