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!
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.
DETERIORATION SCALE FOR ASSESSMENT OF PRIMARY DEGENERATIVE
|1) NO COGNITIVE
DECLINE ||No subjective complaints of memory loss No memory deficit
evident on clinical interview|
|2) VERY MILD
|Subjective complaints of memory
deficit, most frequently in the following areas: |
No objective evidence of memory deficit on
clinical interview. No objective deficits in employment of social
situations. Appropriate concern with respect to symptomatology.
where one has placed familiar objects
- forgetting names one
formerly knew well.
|3) MILD COGNITIVE
|Earliest clear-cut deficits.
Manifestations in more than one areas: |
Decreased performance in demanding employment and social
settings. Denial begins to become manifest in patient. Mild to
moderate anxiety accompanies symptoms.
- 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
- patient may demonstrate decreased facility in
remembering names upon introduction to new people
- patient may
have lost or misplaced an object of value
deficit may be evident on clinical testing Objective evidence of
memory deficit obtained only with an intensive interview.
|Clear-cut deficit on careful
clinical interview. Deficit manifest in the following areas:|
deficit in 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.
is dominate defense mechanism. Flattening of affect and
withdrawal from challenging situations occur.
- orientation to time and person
recognition of familiar persons and faces
- ability to travel
to familiar locations Inability to perform complex tasks.
|5) MODERATELY SEVERE COGNITIVE DECLINE|
|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|
|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
- obsessive symptoms, e.g., person may continually
repeat simple cleaning activities
- anxiety symptoms,
agitation, and even previously nonexistent violent behavior may
- 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
|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
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)
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
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.
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
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 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.
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
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"!
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
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
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!!!
August 26, 1999 Pasadena, California
Pasadena Senior Center 7:00 - 9:00 p.m.
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,
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