October 15, 1999
Just a quick note
to let you know that everyone who attended the Gathering of
Friends had a great time and it was so great to get "real
time" hugs. It was a blessing to us all.
October is the month that many Alzheimer Association Chapters hold their Memory
Walks. We got this letter and thought it was a great idea to send
along. We had our walk the first weekend of the month. If you
haven't had your's yet maybe this will help in your effort.
First off I want to say
how grateful I am for this newsletter. Thank you for your efforts.
I am in the process of collecting donations for the NY - Alz
Assoc's "MEMORY WALK". I believe other cities are holding
their Memory Walks this month as well.
I wrote the following letter and sent it out to over 400 friends,
acquaintances, and members of various organizations to which my
brother and I belong and to those my parents belonged in the past.
This is the third year I am doing this. The first year I
collected $2600, the second $4,000, and this year... I don't know
yet, the checks are still coming in adding to the $1,100 I've
gotten so far.
For me it's a way of saying "thanks" to the Alz Assoc
for their help, as well as a way to increase peoples awareness
about the illness and about the Alz Association in the event they,
or someone they know, may ever need it.
For those caregivers participating in the walk, consider sending
letters. For those unable to participate, you may want to take on
an endeavor similar to mine. It helps.
Hopefully the summer gave you time to relax and get refreshed for
the beginning of another busy season and school year. Welcome
For those of us caring for older adults the summer didn't offer
much of a break. This is especially true for those of us caring
for family members with Alzheimer's.
The stresses of care giving are never ending. The tasks of paying
their bills, handling finances, monitoring medications, and other
countless tasks don't stop. The worries are constant and there is
the agony of watching our family members slowly erode and
deteriorate to become a mere shadow of who they once were.
This is the case with both my parents but especially my mother,
who has Alzheimer's disease. My father is dependent because of
his partially paralyzing stroke, but at least he's alert.
My mother's condition has worsened since this time last year. She's
still basically remembers my father, brother, and me, but doesn't
always "recognize" us without prompting.
I anxiously prayed during the summer that she did not get worse
before my brother, Nick's wedding Labor Day Weekend. I prayed
that she would be able to experience the joy and happiness that
all mothers look forward to, the marriage of their child.
My prayers were answered. In church she knew where she was.
Hearing the familiar hymns, she even attempted to do her cross at
appropriate times during the service. When I whispered, "Nick
is up there getting married", she turned and looked in the
direction of the bride and groom with a smile. At the reception,
while the band played and everyone was dancing, the fogged veil
in which her disease engulfs her was raised when I reminded her
we were at Nick's wedding. She'd say, "Nai?" (Greek for
"Yea?") A big smile would come over her and she'd move
her hands to the beat of the familiar Greek music.
She did realize the joy of her son's wedding. Perhaps not in the
ideal sense, but definitely in a way to be grateful for,
especially knowing what the disease still has in store for her.
In dealing with someone who has Alzheimer's it's sometimes hard
to find things to be grateful for. There are so many emotions and
things to deal with. "Things" most people don't
understand, no matter how well intentioned they may be.
That's why caregivers like myself are so grateful to the
Alzheimer's Association. They offer understanding, guidance,
compassion, and assistance at every stage of the disease. Their
motto, "Someone To Stand By You", is definitely true.
They've stood by me and countless other families I've referred to
Their Annual Fundraiser, "The Memory Walk", is coming
up, Sunday October 17th.
I will be walking with others representing "Greeks United
for Seniors". If you are interested in joining us, please
call me at ###
I realize there are quite a few other functions taking place that
day. If you can't join me in person, please join me in spirit by
sending in a contribution in the enclosed envelope. Please make
checks payable to: ALZHEIMER'S ASSOC.
Thank you for your support and understanding.
How to Respond to
Paranoia, Delusions and Hallucinations
People who have dementia may experience PARANOIA - irrational suspiciousness and
distrust of others. They may have DELUSIONS - fixed, false ideas
or beliefs - even with evidence to the contrary. For example, a
person may complain that you have taken all their money or that
someone who is deceased is coming to see them. They may
experience HALLUCINATIONS - sensory experiences that others do
not have; for example, seeing or hearing something that others do
- First, assess if the problem is troublesome or frightening to the
person experiencing it. If not, ignoring may be best approach.
- If a person seems to be hallucinating, leave him/her alone or
approach slowly, so as not to frighten him/her. Respond with
- Don't try to argue or rationalize. Realize that hallucinations
and delusions seem very real to the person who is experiencing
them and arguing will not build trust.
- Offer reassurance and validation - "I know this is troubling
for you, let me see if I can help."
- Check out the reality of the situation; maybe what they see or
think is true.
- Sometimes things in the environment may be misinterpreted (i.e.,
glare or shadow in the window, noisy furnace, etc.) and be
frightening. Explain potential or actual misinterpretation, e.g.
that noise is the furnace turning on.
- Modify the environment if needed. (A mirror may become
distracting or confusing; adding more lights may be helpful at
- Assess if the person's hearing or vision needs are met to reduce
excess disabilities that contribute to these problems.
- Remember that whispering or laughing around the person may be
- If the person has misplaced something and thinks you or someone
else "stole it", offer to help look for the item. Have
duplicate items that have importance, e.g. wallets, glasses.
- Do not take accusations personally.
- Use distraction - activity, conversation, food, music - try to
pull the person's attention from the delusion or hallucination.
- If the person asks you directly if you see or hear something, be
honest but don't struggle to convince or reason with them about
what is real.
- Try to respond to what the person may be feeling - insecurity,
- Rule out any illnesses or medications that could be contributing
to these problems.
- Consult a physician. Sometimes medications can be very helpful.
Adapted from the Alzheimer's Association Handout: Hallucinations
and Delusions and Understanding Difficult Behaviors, Anne
Robinson, Beth Spencer, Laurie White (1989), Eastern Michigan
In Passing: Those We
JUST A QUICK NOTE TO
SAY THAT MY FATHER WITH ALZHEIMERS PASSED AWAY TWO DAYS
AGO, MOM WITH THE SAME ILLNESS DIED IN FEBRUARY, AND MY FATHER-IN-LAW
MARCH OF THIS YEAR...BEEN A VERY DIFFICULT YEAR. . YOUR PRAYERS
WOULD BE GREATLY APPRECIATED...GOD LOVE ALL OF YOU...BARBARA
From BELL OF WV
TO ALL MY DEAR
I WOULD LIKE TO LET YOU KNOW THAT MY MOTHER PASSED AWAY TODAY.
QUIETLY AND PEACEFULLY AFTER RUNNING TO HER BEDSIDE MON. AFTER
BEING CALLED BY ONE OF THE NURSES. I SPENT THE NIGHT AT THE
NURSING HOME AND SHE HAD SOME LABORED BREATHING AND HAD TO BE PUT
ON OXYGEN, AND HAD A GOOD NIGHT, BUT EARLY THIS MORNING, AND THIS
AFTERNOON SHE BECAME VERY QUIET AND HER LITTLE HEART JUST GAVE IN,
AND SHE PASSED ON TO A MUCH BETTER PLACE TO BE WITH HER HEAVENLY
FATHER. SHE KNEW I WAS THERE, AND I HELD HER AND TOLD HER HOW
MUCH I LOVED HER, AND THEN SHE WAS GONE, AND NOW SHE IS HAVING
HER LONG AWAITED REST.
THANK YOU ALL FOR BEING THERE FOR ME FOR SUCH A LONG TIME, AND I'LL
NEVER FORGET YOU AND WILL ALWAYS BE GRATEFUL. IF I CAN HELP
ANYONE ELSE IN ANYWAY, YOU KNOW WHERE I AM.
VIVIAN ( BELLOFWV )
This one has an article about BHostSTS
HealthGrades.com - Home Page
Interesting site from BHostAC
Alzheimer's disease - Helping children understand
money.com: The Sandwich
Alzheimer's - A Map for
I watched the movie Sun,
night and enjoyed it very much, It helped me see a lot clearer
what my mom is going through. As far as the name Caregiver. it
does not bother me. I am just my mom's little girl or baby.
Also walked in the AD walk in our home town, It was a blessing to
take part in it and we raised I think $23,000.
Ann, in N.C.
I read two good articles in
today's (Saturday) Union Trib. I thought they might be of
interest to readers of the newsletter. Here is the link the first
one - if this doesn't work both articles are in the Family Ties
Section - first one entitled "The Two Sides of Alzheimers"
the second article is on page E-4 in Marsha Kay Seff's column
about Caregivers entitled "Caregivers deserve all the breaks
they can get"
The San Diego Union-Tribune
The San Diego Union-Tribune
Hope you can get to these
articles and use them Keep up the great work! I have printed out
the last two newsletters and given them to the Care Facility
where mom is staying. They have been wonderful with her and
thought the guidelines for visiting and how to talk with someone
were great and would be a good resource for them.
GREAT issue!!!!! laura
Every now and again
people ask about books that are appropriate for children about
Alzheimer's Disease. I found these books and I have to admit that
as I was reading them I almost began to cry several times. They
are wonderful in the way they explain the disease to children
without talking down to a child. They also show good ways of
interacting with a person who has Alzheimer's. These books are
appropriate for children from 5 to 10 years of age.
- Grandpa Doesn't Know It's
Me. By Donna Guthrie, Illustrated by Katy Keck Arnsteen. Human
Science Press, Inc., New York, NY. 1986. ISBN 0-89885-302-8
- Forget~Me~Not Writen and Illustrated by Jonah Schein. Firefly
Books, Ltd./ 3520 Pharmacy Ave., Unit 1 c, Scarbourough, Ontario
M1W2T8, 1988. ISBN 1-55037-000-6
- My Grammy. Marsha Kibbey, Illustrated by Karen Ritz. Carolrhoda
Books, Minniapolis, MN. 1988. ISBN 0-87614-328-1
- Wilfrid Gordon McDonald Partridge. Mem Fox, Illustrated by Julie
Vivas. Kane/Miller Book Publishers, Brooklyn, NY. 1985. ISBN 0-916291-04-9
My last selection is not
about Alzheimer's but on how a person feels as they grow older.
It is beautiful in it's own right. This last book is more
appropriate for pre-teens.
- How Does It Feel To Be Old?
Norma Farber, Illustrated by Trina Schart Hyman. E.P. Dutton, New
York, NY. 1979. ISBN 0-525-44367-3
Karen and Jamie:
Thank you for all your hard work in putting together The Ribbon
for all of us. I have read every issue and this last one has to
be the best. Beverly Murphy's "Twelve Things Not To Say To A
Caregiver" is the best I have ever read. Some people just
don't seem to understand that the afflicted ones are still a
person in their own body with their spirit and soul still there.
Their lack of cognitive abilities has nothing to do with who they
are. Do only caregivers understand this? It seems so, and if so
then we need to tell the world with all boldness and Beverly has
so adequately done so.
Thank you again for your work of love to all of us.
Doug and Ann Thompson
From LIZA 513
don't know how many of you have this link, but I wanted to make
sure that all of you did. There is some very special poetry here
from a very special person in our group of Alzheimer Caregivers.
If you know WilloRain, then your life is indeed enriched.
Moments Remembered By Willo Rain
Hugs to all,
like to advise you at this time that you may experience some
delays in getting The
Ribbon. We have a
new system where it has to be sent for approval before Karen can
email it to you. There are kinks to be worked out so bear with us.
The lateness of this issue is due to me so you can vent my way if
you need to. :)
Hugs and Peace,
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