Volume 2, Issue 6 - The Ribbon Newsletter

Volume 2, Issue 6
April 2, 1999

Ahhh, spring has sprung. Don't forget to turn your clocks ahead on Saturday night before going to bed. We hope you all have a Happy Easter!!

Focusing On The Light
A Challenge to Professional and Family Caregivers
of Alzheimer's Patients

By Bonnie M. Haley, L.S.W.

The tragedy of Alzheimer's disease. We know it as family caregivers. We know it as professionals. We know that it robs people of their memories, their sense of self, their independence and ability to care for themselves, their financial security, and sometimes even their dignity. Slowly and insidiously it destroys people and sometimes in the process, it destroys families. As caregivers, how can we possibly be expected to focus on the positives? If you were to call me a Pollyanna, you wouldn't be the first person and frankly, I wouldn't be offended.

I'm a professional social worker who works with people who have Alzheimer's disease and their families. I also watched my father-in-law live and die with the disease. I know how sad and destructive it can be. I also know that if we had given in to our feelings of doom and depression from the moment that my father-in-law was diagnosed, we would have missed out on some profoundly meaningful and rewarding times with him and we would have deprived him of any sense of happiness and hope.

I had known my father-in-law for more than twenty years when he was diagnosed and our relationship was unremarkable. He was just a nice guy with a kooky sense of humor. The fact is, our relationship became closer and more meaningful for both of us as we struggled through the disease process together as a family. Through the tragedy of his illness, I came to recognize his remarkable courage, his faith and his selfless devotion to his family as he tried hard not to be a burden. Personally, he taught me the importance of humor, humility and spiritual strength. Professionally, he taught me the importance of giving an Alzheimer's patient a safe relationship in which to vent his feelings of grief and frustration and the residents that I work with have all benefited from the lessons he taught me. The tragedy of his illness made a strong family even stronger as we reminisced about the good times and supported each other through the difficult ones.

When you first hear the diagnosis of Alzheimer's disease, it's easy to feel that a dark cloud has moved in with your family. It's important to face the darkness head on, to accept the diagnosis and to learn everything that you can about the disease and what the future may bring. Read everything that you can get your hands on and attend support group meetings. Allow yourself to grieve. It's natural.

But remember, the future isn't today. If we focus all of our energy on what's to come or even on the skills that they have already lost, we lose sight of what skills and strengths they still have. By acknowledging their kindness, their sense of humor or their willingness to help, we're giving them the clear message that their "personhood" has not been lost. By encouraging them to perform tasks that they can succeed at, we're helping them to feel the satisfaction of being useful and meeting a challenge.

Most people who have Alzheimer's disease lose their short-term memory quickly but their long-term memory loss is a much slower, more gradual process. In the early and mid stages, they focus much of their thinking on their past and sometimes even confuse the past with the present. That's OK, though. Focusing on the past still gives them a sense of who they are and it gives them a chance to come to terms with things in their history that they may not have been comfortable with before. Though it may be frustrating to hear the same stories over and over, as a caregiver, you give a person with Alzheimer's a wonderful gift when you help them to reminisce. Someday they won't be able to do it. Some day they won't even remember their own name. Having a past gives their life meaning and for today, it's reason to celebrate.

The focus of professional caregiving is centered around the patient's "care plan." What's on most care plans? All too often they read like a listing of the person's deficits: "Cognitive loss secondary to Alzheimer's Disease. She needs help with bathing, dressing and grooming. She has problems with word-finding. She has a potential for isolation due to her confusion. She is intrusive to other residents due to her rummaging and uninhibited behavior." So where are her strengths? Usually not on the care plan and the more we keep focusing on her deficits, the less likely we are to acknowledge and help her to preserve her strengths.

The fact is that with help, this person can participate some in her own bathing, dressing and grooming. If we listen carefully and speak clearly in simple sentences, she's able to communicate her needs well. She has a wonderful, infectious smile and her playful sense of humor is still intact. She loves to talk about her family and the Red Sox. She likes to keep busy and feel useful. Sure, she can't drive or bake her famous pies anymore, but she can help set the table, pass out the song books for the sing-a-long and in the good weather, she likes to weed the garden. Some day these skills will be gone. But today, she's a woman who can be helpful. A woman whose life still has value.

As the disease progresses, more and more brain cells are destroyed. Chemicals that allow the cells to communicate with one another dry up. The brain is no longer able to tell the body's muscles what to do in order to perform purposeful movements. The person with Alzheimer's disease who survives to the end stage is unable to walk or even reposition himself in his chair. He is completely dependent on other people for his cleanliness, comfort and nourishment. Most frustrating of all, he's unable to verbally express himself. With no memory of his past, he lives entirely in the moment. The less responsive that a loved one becomes, the easier it is to be swallowed up by the darkness.

During the end stage of the disease, most family members are feeling depleted.

They're ready for the end. It's the 'hanging on' that's difficult to cope with. Watching a loved one suffer is never easy and visits, by even the most devoted family members, can become painful experiences. Most of the person's strengths and skills have been lost and because they no longer know you, it's easier to stay away.

Over the years, however, I've been privileged to know many family members and professional caregivers who have resisted the darkness. They saw the corners of the mouth turn up just a little bit when the person with Alzheimer's heard their voice and they knew that it was still possible to make a human connection, whether they know who you are or not.

A. R. Luria once wrote, "People do not consist of memory alone. They have feeling, will, sensibility, moral being. It is here you may touch them and see a profound change."

I watch daily as devoted caregivers offer the gift of gentle touch in so many ways, including holding and stroking the hands, brushing the hair and rubbing lotion on the feet. Love is expressed not only in the words that we say, but in our eyes, our facial expression and the tone of our voice. It's hard to know how much language an end-stage patient can understand, but we do know that they respond positively to a reassuring voice and acts of kindness in many forms.

I know people who come in regularly to read to their family member or friend even though they haven't heard them say an intelligible word in years. Others recite the person's favorite prayers or sing their favorite songs. These people offer inspiration to staff members and other family members who may be discouraged. They have accepted the challenge. Amidst all of the darkness, they choose to focus on the light.

Happenings

Can a girl from a small town in Ohio achieve happiness and .....(yada yada yada)?

Announcement to Family, Friends, and childhood Wilmingtonians:

It is with apprehension tinged excitement that I announce filming has begun for the movie of my life story, Forget Me Never.

Mia Farrow portrays me (such a job, but she assures me she is up to it), and Martin Sheen portrays my husband in the film.(not too shabby)

(My husband walked around hours with a smile on his face the day Martin Sheen came aboard, thinking I had advised he is portrayed by Martin's young son, Charlie Sheen. I corrected this, reminding him the movie is not about me --- and my boy toy.)

Prominent director Robert Ackerman is directing the project, with Storyline Productions headed by producer Neal Meron producing the film scheduled to air during sweeps in May and/or November, God willing. At first limited to articles in the trades, somehow it jumped into the press, and newspapers are already releasing the advances on it so I realized I should mail this announcement now or it would be stale.

They're still working the particular sweeps timing choice (May and/or November) because CBS and the movie studio are pointedly aiming the film as an award vehicle. From their mouths to God's ears.

With such inordinate, high talent and current award winners in my corner, I know my concerns are in very good hands for a moving piece that leaves me as a person more or less intact. Nonetheless.... in preparation we have relocated to a lovely secluded, protected home far from our too well known one in Orlando. (At least Mia Farrow assures me the entire production is very high on the Hollywood food chain. I think that is a good thing, altho' being anywhere on a food chain seems dicey to me...)

I am aware this is a great honor. I am deeply humbled by the very honor of it. Now I can only hope (and pray) that only good comes of the film. That is the intent.

I wish its results to reach the same heights in helping others as I have always aimed my advocacy efforts, and if not, that it be understood graciously and not compromised. And that I be understood graciously and not compromised, either.

(I've been ungraciously compromised before, and personally, I'm against it!) (twinkle)

I want to extend my thanks and deepest gratitude to you who have known of this project since publication of my best seller, and yet have not danced around me in derision, taunting that the film project would never culminate in a production, much less a first class one.

I myself often lost faith due to numerous H'wood inner circle arguments, delays, making and breaking of various significant contracts, negotiating and then REnegotiating, deciding these H'wood people certainly are volatile!~~~ (as I screamed one minute and purred the next with them, also, the darned stuff is catching...)~~~until I sometimes envisioned myself sitting forlornly in a nursing home of my future, muttering to myself about the film of my life story while the nursing home staff whispers, "poor old dear, she keeps talking about a movie she thinks they are going to make of her life..."

Now that dismal thought is put to rest. It is here.

So to you who kept the faith with me and sometimes for me, Thank You.

And if interested, you can watch for me during the May and/or November competitive sweeps, in your living room, bedroom or den.

Forget Me Never,
Diana Friel McGowin (a/k/a Diane Friel)
Author, Living in the Labyrinth
Author, Speaker, Advocate (and mighty fine dancer)
From LILAUTHOR1
forwarded to us by MeeMawMoe

Beatitudes for Care

BLESSED are the caregivers who understand ALZHEIMER'S DISEASE as a reversing of the aging process. For they shall have a better understanding of my being "caught in a time tunnel" quickly reversing its pace.

BLESSED is the person who comes up to me and tells me his/her name first and reminds me of some shared experience we've had. This may help my recall process. For then I become less stressed and not with such memory searching for the unknown.

BLESSED is the person who can bring me back to happier times when I was worthwhile and had a good sense of self-worth. For many of my once friends have now abandoned my world.

BLESSED are the caregivers who let me periodically withdraw and re-group. For loud noises of children, barking dogs, TV and radio set me into instant confusion and temporarily devastate my mind.

BLESSED is the person who can provide me with some form of comfort when I become too confused or restless and can no longer concentrate on my independent functioning. For they can offer me food, smiles, hugs or just a friendly hand in silence.

BLESSED is the person who recognizes my "good days" and my "bad days". For they can help ease undue tension by distraction or avoidance of situations to keep my world with limited confusion or stress.

BLESSED is the caregiver who understands my secrets of communication when my speech is rambled, jambled, and scrambled. For they can lend me a smile, wink, or short embrace which helps me through my daily routine.

BLESSED is the person who doesn't raise his/her voice when I use poor social skills and manners (like going to bed with my clothes on or picking up food in the restaurant with my fingers). For they understand I have diminished control to recall the steps it takes to get ready for bed or to remember manners at the table.

BLESSED is my family for letting me frequently repeat my thoughts and deeds without expressing annoyance or frustration. For I only recall the recent question or thought or action I ask/say or do, due to short-circuiting of thoughts and actions in my dying brain.

BLESSED is the person who understands about my failing brain and helps me through the most basic learned tasks. For they assist me with bathing, dressing, eating and walking. For they often have to hand me the right eating utensil or clothing item to wear, or even use repeated hand gestures to get me to "sit".

BLESSED is my spouse who so patiently guides me out of the closet and into the bathroom in the middle of the afternoon or evening. For he understands what becoming lost does to me. I can no longer associate where I am or who I am.

BLESSED is my spouse who tolerated my blaming him/her when I couldn't find the $50 I hid in the Bible. I truly do not recall taking the money and conveniently placing it under a stack of magazines on the tool shelf! For I tend to become preoccupied with my losses.

BLESSED are my family members who have so carefully and patiently pre-arranged for legal guidance and directions. For the many questions and concerns that involve withdrawing money from savings, or investing money can be now so quietly and calmly answered and signed withoug upsetting us both. And I no longer explode in anger from overload. Remember, I can no longer separate "real" from what is "fiction".

BLESSED is my caregiver who no longer corrects me when I'm home and ask "to go home". For to me, "home" no longer exists. "Home" was a time when life felt more comfortable. So for now I need that hug and reassurance that you'll take care of me.

BLESSED are the people who so kindly give of themselves and the special support groups that are set up for families of victims with memory impairment. For they provide an opportunity for further learning, caring, sharing and loving of Alzheimer's victims. And . . .

BLESSED am I who have struggled through this illness with confusion and shame. For who I once was, I no longer am. And who you are I no longer know. But, it's your gentle touch and voice that remind me of what I so miss. For only you can reach out and STAND BY ME.

GOD BLESS YOU FOR YOUR BEING

- By Pat Warner, RN, MSN in "A Practical Guide for the Alzheimer Caregivers", distributed by the Alzheimer Aid Society of Northern California.

From AChamb8829

Medical News

Blindness found in victims of Alzheimer's
Scripps Howard News Service

A new study suggests that people with Alzheimer's disease tend to become lost in familiar surroundings not so much because they're mentally confused but because they are visually impaired. The condition, called "motion blindness," may be the result of isolated damage in one part of the brain, according to the study published today in the journal Neurology, the scientific journal of the American academy of Neurology.

Scientists at the University of Rochester in New York studied the ability of three different groups of subjects to see and interpret visual patterns -- six healthy young people, 12 healthy elderly people, and 11 people with Alzheimer's.

In one test, participants viewed a panoramic computer display with radiating patterns of visual motion, simulating what you see as you move through your surroundings. They were then asked whether they seemed to be moving left or right. The Alzheimer's patients had more than twice as much difficulty interpreting the patterns.

The researchers also tested participants' spatial navigation by walking them from the hospital lobby to the lab, telling them they would be asked questions about the route. The young people answered questions correctly 88% of the time and healthy elderly 72%. But the Alzheimer's patients answered correctly only 32% of the time.

The study counters the generally accepted impression that Alzheimer's is just a memory disorder, the researchers said. "People with Alzheimer's get lost not because they don't remember where they've been, but because they can't see where they're going," said the lead author, Dr. Charles Duffy.

"This study gives us a whole new insight into what's going wrong with the brain in Alzheimer's and also gives us a way to measure how debilitated an individual will be by the disease," said Duffy.

Visual disorientation is often one of the first symptoms that shows up in Alzheimer's patients and thus could be useful in making an early diagnosis. The tests could also be used to identify those at particular risk for getting lost, Duffy said.

From The Tennessean 3-23-99

From STSWILLIE
(From 3/2/99 Chicken Soup mailing list)

All I Remember

One day, while I was lying on a massage table in a dark, quiet room waiting for an appointment, a wave of longing swept over me. I checked to make sure I was awake and not dreaming, and I saw that I was as far removed from a dreamy state as one could possibly be. Each thought I had was like a drop of water disturbing a still pond, and I marveled at the peacefulness of each passing moment.

Suddenly my mother's face appeared - my mother, as she had been before Alzheimer's disease had stripped her of her mind, her humanity, and 50 pounds. Her magnificent silver hair crowned her sweet face. She was so real and so close I felt I could reach out and touch her. I even smelled the fragrance of Joy, her favorite perfume. She seemed to be waiting and did not speak.

I said, "Oh, Mother, I'm so sorry that you had to suffer with that horrible disease."

She tipped her head slightly to one side, as though to acknowledge what I had said about her suffering. Then she smiled - a beautiful smile - and said very distinctly, "But all I remember is love." And she disappeared.

I began to shiver in a room gone suddenly cold, and I knew in my bones that the love we give and receive is all that matters and is all that is remembered. Suffering disappears; love remains.

Her words are the most important I have ever heard, and that moment is forever engraved on my heart.

By Bobbie Probstein
from Condensed Chicken Soup for the Soul
Copyright 1996 by Jack Canfield, Mark Victor Hansen & Patty Hansen

From RICH 92376

Taking Care of Ourselves

It's healthy, wise, and loving to be considerate and responsive to the feelings and needs of others. That's different from caretaking. Caretaking is a self-defeating and, certainly, a relationship-defeating behavior - a behavior that backfires and can cause us to feel resentful and victimized - because ultimately, what we feel, want, and need will come to the surface.

Some people seem to invite emotional caretaking. We can learn to refuse the invitation. We can be concerned, we can be loving, when possible; but we can place value on our own needs and feelings too. Part of recovery means learning to pay attention to, and place importance on, what we feel, want, and need, because we begin to see that there are clear, predictable, and usually undesirable consequences when we don't.

Be patient and gentle with yourself as you learn to do this. Be understanding with yourself when you slip back into the old behavior of emotional caretaking and self-neglect.

But stop the cycle today. We do not have to feel responsible for others. We do not have to feel guilty about not feeling responsible for others. We can even learn to let ourselves feel good about taking responsibility for our needs and feelings.

Today, I will evaluate whether I've slipped into my old behavior of taking responsibility for another's feelings and needs, while neglecting my own. I will own my power, right, and responsibility to place value on myself.

~~The Language of Letting Go~~
~~Melody Beattie~~

From Lucinda89

Life is easier than you think,
All you have to do is: Accept the impossible,
Do without the indispensable, bear the intolerable,
and be able to smile at anything.

And laugh at little treasures
Strangely wrapped in toilet paper,
The dentures under the bed,
The milk in the oven,
The six blouses worn
Over three pairs of pants.
Etc., etc., etc., etc.,
Hang in there, fellow caregivers!

From SARAHGOOD

To My Children

When I spill some food on my nice clean dress
or maybe forget to tie my shoe,
Please be patient and perhaps reminisce
About the many hours I spent with you.
When I taught you how to eat with care,
plus tying laces and numbers, too.
Dressing yourself and combing your hair,
Those were precious hours spent with you.
So when I forget what I was about to say,
Just give me a minute--or maybe two.
It probably wasn't important anyway,
And I would much rather listen just to you.
If I tell a story one more time,
and you know the ending through and through,
Please remember your first nursery rhyme
When I rehearsed it a hundred times with you.
When my legs are tired and it's hard to stand
or walk the steady pace that I would like to do,
Walk a little slower, enjoy it with me, or
Please take me carefully by the hand,
And guide me now as I so often did for you.

Reading Time

Dear caregivers,

I hope this new book will be of interest and inspiration for you. I wrote it to help all of us with the complex emotional journey of caregiving -- its message is positive and comes from the hearts of caring people everywhere.

Blessings!
Beth Witrogen McLeod
witrogen@ccnet.com

"Caregiving: The Spiritual Journey of Love, Loss, and Renewal"
Beth Witrogen McLeod
Publication date: April 1999
John Wiley & Sons
605 Third Ave.
New York, NY 10158
1-800-225-5945
ISBN 0-471-25408-8
$22.95, 256 pages

In the past nine years, the number of family caregivers in North America has exploded by 300 percent, reaching into a quarter of all households. As baby boomers age and lifespans increase, the medical and ethical issues involving in caring for the elderly and dying will affect us at a personal - and profound - level.

With unflinching authority and compassion, this powerful, unique book bravely speaks to what is perhaps the greatest of life's challenges: caring for an ill or dying person. As baby boomers age and lifespans increase, the issues in CAREGIVING are of the utmost timeliness. Expanding on her prize-winning series in the San Francisco Examiner, Beth Witrogen McLeod relates her own experiences as a caregiving daughter as well as the inspiring and poignant stories of others, informing them all with indispensable medical, financial, psychological, and spiritual advice from world-renowned experts.

Beginning with an account of caring for her own dying parents - a situation for which she was entirely unprepared and from which she had much to learn - McLeod moves on to discuss at length how caregivers can open their hearts in the presence of suffering and find meaning in loss.

Combining real-life stories with interviews of medical professionals and spiritual leaders, McLeod offers important advice and words of wisdom. She proves that giving is far more reflective of our common nature than violence or greed, and that by facing together the fear of dying, we can change our lives and the lives of those around us in a positive and permanent way.

ENDORSEMENTS

"By my old professor's side, I learned the precious value of caregiving. I am grateful that Beth McLeod has put together a fine source to help bring out the helping heart in all of us."
--Mitch Albom, author of Tuesdays with Morrie

"Caregiving has a big heart - on a much-needed topic. A rare book of spiritual and practical wisdom."
--Sue Bender, author of Plain and Simple and Everyday Sacred

"A poignant, wise, and in-the-trenches view of caregiving that is both practical and spiritual, especially of value to mid-life adults."
--Jean Shinoda Bolen, M.D., author of Goddesses in Everywoman and Close to the Bone

"Caregiving provides inspiration for anyone whose life is dedicated to service. Beth McLeod's experience and wisdom shine through as she shares her heartfelt journey of loss, surrender, hope, and healing."
--David Simon, M.D., medical director, the Chopra Center for Well Being, author of Return to Wholeness and The Wisdom of Healing

"An inspirational book.... The author has ventured where there was no path and lit a beacon for all to follow."
--Anne Bashkiroff, Cofounder, Alzheimer's Association and Family Caregiver Alliance

"A wealth of knowledge and resources.... With the voice of experience and compassion...This book is a true gift for professionals as well as loved ones."
- -David Kessler, author of The Rights of the Dying

"When it comes to both the nightmares and the nobility of caregiving, Beth McLeod has been there. Her moving, personal story pulls no punches.... Her book bears witness to a truth we all have to learn: caregivers are the soul of the nation. We need to put this book on America's required reading list."
--Theodore Roszak, author of America the Wise and The True Wealth of Nations

"McLeod eloquently.... shows us how our grieving builds our humanity. And she inspires parents, spouses, and adult children to carry on their mission to care with compassion, pride, and faith."
--Lucy Jo Palladino, Ph.D., author of Dreamers, Discoverers, and Dynamos

"Beth McLeod writes with the knowing heart of a caregiver and with the pen of a poet. Her personal journey underlies the book's truth, while the pain and spiritual growth ... she explores and documents so well will touch all readers."
--Suzanne Mintz, President and cofounder, National Family Caregivers Association

"No book about the silent crisis of caring has been more deeply felt....Beth McLeod's wisdom comes from an unflinching look at the real-life experience of family care: how it changed her own life, how it makes us grow up often in spite of our wish to remain our parents' children ... and how we may emerge from its spiritual tests strengthened down to our souls."
--Paul Kleyman, Editor, Aging Today, American Society on Aging

Beth McLeod
http://www.thirdage.com/cgi-bin/WebX?14@@.ee9182d/9

From PHOTOLJT

Today I received a reply to an email I sent many months ago about alzheimer's proofing your home. AglessD was in the process of writing it and just emailed me about it's completion and pubishing the book is called:

Complete Guide to Alzheimer's-Proofing Your Home by Mark Warner (his website is www.agelessdesign.com).

A Link from STSWILLIE

Alzheimer's Disease Bookstore

E-Mail Box

From PHOTOLJT

Here I go thinking again (I know it's dangerous), but while talking with one of the folks on im last night, I suggested something that I think might be of use to the rest of the gang. The suggestion was to start a gratitude journal (major idea from Oprah) about the loved one. I suggested to the person that this would be a way to "keep alive" the loved one's memory; not only for that particular person, but for her children and her grandchildren. The lady was sad that the only memory the kids would have would be of "granny" with alzheimer's. This way when they get older they can learn more about their grandparent and even learn something about the person who did the writing!

Just a thought!

Linda

From Momi1knobi

we're looking at a lift chair for mom. it's getting hard for her to stand up. If anyone else has had one, please let me know how it worked out for you. Thanks

From GIMME FITZ

My first Issue.....Thank you so very much. I will be looking forward to them.

GIMME FITZ

From eswint@aims.edu

My purpose in writing is to tell DATEL123 thanks for the info and we must have been thinking along the same lines. I did decide to bite the bullet, spend the money, and go to a lawyer that specializes in Elder Law. The cost here in Colorado was $135.00 and well worth it. For others' information I'll try to explain the difference between Power of Attorney and POA by proxy. Datel123, you were right, there is no Power of Attorney by Proxy. What it actually involves is "getting the okay from my siblings to be the PROXY(or middleman) to make medical decisions for my mother:" Getting the okay means notarized statements from both sisters stating that they give me the authority to make medical decisions for Mom. No, I still cannot make the final decision as to when to place Mom in the restricted ward. If the nursing home is determined to follow the book and watch the paperwork, I will still be forced to get Guardianship of Mom if she refuses to be moved. If I am on good terms, time runs out, and the nursing home feels the need to move Mom quickly for whatever reason, they may accept my decision by proxy.
So there you have it.
Elsa

From JDunn56760
dated 3-20-99

thanks again for the Ribbon. Its very helpful. tomorrow I place my hubby in an assisted living home. It looks nice and can pray it wont be a nightmare place as he needs so much more than I can give him. I am very tired, depressed over this whole horrible disease and what we as caregivers have to do. I ended up with only 3 hrs of free time and he refused to go in a car for me and I couldnt bathe him. Yes the guilt will remain but maybe my hubby will get the care he deserves and needs.

From NKEARN

Thankyou thankyou thankyou to Linda for sending the web sites. This is a wonderful tool for me and I am sure there are a lot of others out in the group who will also appreciated this list.

Thanks again Linda. Great help......great job!!!!

Happy Easter Egg Hunting!!
Hugs and Peace,

Karen (KMenges581)
and
Jamie (DRMOM1955)