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The Ribbon - Care for Caregivers
Volume 2, Issue 20
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.


Memory Walks

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.

From LPNYFLGANY

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.


Dear friends,

Hopefully the summer gave you time to relax and get refreshed for the beginning of another busy season and school year. Welcome back.

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 them.

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.

Sincerely,

Linda


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 not.

  • 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 caution.

  • 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 night.)

  • 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 misinterpreted.

  • 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, fear, confusion.

  • 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 University.

Geriatrics


In Passing: Those We Must Remember

From mentorsfriend@opman.com
dated 10/3/99

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 IN
MARCH OF THIS YEAR...BEEN A VERY DIFFICULT YEAR. . YOUR PRAYERS FOR THEM
WOULD BE GREATLY APPRECIATED...GOD LOVE ALL OF YOU...BARBARA JEANNE FISHER



From BELL OF WV
Dated 10/12/99

TO ALL MY DEAR FRIENDS,,
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.

LOVINGLY,
VIVIAN ( BELLOFWV )


Links

From NannyDean
Health-Center.com: Depression

This one has an article about BHostSTS
Access Magazine

From Ridley6
HealthGrades.com - Home Page

Interesting site from BHostAC
Alzheimer's disease - Helping children understand

From Emjay215
money.com: The Sandwich Generation

From MeeMawMoe
Alzheimer's - A Map for the Journey


E-Mail Bag

From Mtty82

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.


From VWebber491

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.


From Currby4

GREAT issue!!!!! laura


From SewingBabe

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

From DKThomp

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

I 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,

Joyce


We'd 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,

Karen (KMenges581)
and
Jamie (DrMOM1955)

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