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The Ribbon - Care for Caregivers
Symbolizing the way we are all woven together
in our fight against Alzheimer's Disease


Volume 4, Issue 3
August 7, 2000

Can you believe it? August already, time for school to start again. Please remember during all the hustle and bustle of getting the kids back in gear, your Loved One will be a bit more confused. It disrupts their schedule. Take a little time to reassure and comfort until the changed routine becomes normal again.


A More Enlightened Approach To Care Of
Alzheimer's Patients

By Dr. John S. Sergent

If one relied on the news media for all information, the recent flurry of activity concerning Alzheimer's disease would lead you to believe that a major therapeutic breakthrough is just around the corner. Examples include Time magazine's cover story on Alzheimer's disease last week and also the extensive news reports on a potential vaccine for the disease.

The reality, unfortunately, is likely quite different. While the biochemical research is promising, much of the excitement comes from the fact that we know anything at all. Such was our ignorance only a few years ago that all we could do was describe the damage. At least we now know some of the key processes, but we remain a long way, most likely years, from fully understanding the complex interactions that eventually result in loss of brain cells. And the development of effective drugs could be in the even more distant future.

As far as a vaccine is concerned, the report is so premature that New York Times columnist Gina Kolata wrote that it wasn't newsworthy at all, and that it raised false hopes in the families of Alzheimer's suffers. The fact is that the only thing we know is that the vaccine, which appeared to slow the disease in mice, seems to be safe in humans. While the idea of a vaccine is always exciting, we know nothing at all about its effectiveness in even a single patient.

In the meantime, we have more than 4 million people in this country with Alzheimer's disease, 1.6 million of whom are in the final stage, generally defined as being unable to recognize loved ones or to communicate effectively, and as being dependent on others for activities of daily living such as eating and self-care.

Hidden among the flurry of upbeat recent reports on Alzheimer's disease was an article in JAMA, the Journal of the American Medical Association, which did not get much coverage in the media. The authors, from the Mt. Sinai School of Medicine in New York, looked at the care given to people in the final stages of dementia when they developed one of two common problems: hip fracture or pneumonia.

What they found was disturbing. Despite their severe dementia, these people received the same level of aggressive treatment -- surgery, multiple blood tests, etc. -- as people with normal brain function. Even more worrisome, only 24% of the demented patients with hip fracture had standing orders for pain medications. And the presence of advance directives such as living wills didn't seem to matter, as there was little evidence that doctors and the families had discussed palliative care as a treatment option. Not surprisingly, despite the aggressive treatment, the death rates over the next six months were more than four times higher for the patients with dementia, with more than half of them dying.

It is highly likely that similar results would be found in Nashville or any other American city. The reasons for this behavior are undoubtedly complex. Clearly it is painful and difficult under the circumstances of an acute illness to have an honest, forthright discussion about quality of life and prognosis. The physician doesn't want to bring it up and the family members don't want to feel that they have failed to do everything for their loved one.

We need a change in mindset. Late stage dementia is as terminal a condition as widespread cancer. Prolonging life by aggressive care is almost always merely prolonging, and usually increasing, suffering for both patient and family. So while we need to push forward on all fronts of Alzheimer's research, and while we all hope that the recent optimism is not unfounded, we also need to remember that persons with late-stage dementia are totally dependent on others to make appropriate decisions for them.

Practically no one -- at least no one I've ever talked to about such matters -- would want to have aggressive treatment for an illness in the face of severe dementia.

Compassion and common sense demand a new and more enlightened approach to the care of these helpless people.

Permission to reprint granted by:
Dr. John S. Sergent ,Chief Medical Officer at Vanderbilt University Medical Center
Printed in The Tennessean dated July 25, 2000


Different Strokes

It's been over 3 years since I got my first computer. One of the first things I did when I got it was to do some "surfing" on the WWW to find information on Alzheimer's Disease. My mother had been diagnosed a few years prior, after my father's sudden passing in March of 1993.

I found the support chat rooms and got to know so many caregivers. I talk to so many people and it amazes me, almost daily, that there are so many facets to caregiving and to Alzheimer's Disease. The illness is the common thread but beyond that, the behavior, the physical condition, the attitudes are all so different. It's almost as though the disease is personalized. Is it based upon what the individuals personality was before AD? Does it depend on what area of the brain is affected? The habits or lifestyle of the individual?

So many unanswered questions.

Why is one AD patient calm but dazed? Why is another agitated and nasty? Why does one person sleep a lot and another not sleep at all?

So many differences.

Consequentially, the levels of care required to care for this wide variety of patients vary a great deal. Some require hands-on care while others need a watchful eye and guidance.

My mother has reached the point where she needs a combination of the two. Depends on the day. But she is calm, and peaceful and has a smile on her face. We placed her in a personal care facility in Nov.'99. She has gained weight, sleeps well, is active during the day. A week before she moved to Shelbourne, she was in the hospital. Dehydrated and anemic. Only finding was a hiatal hernia. Treat with meds, not surgery.

We decided that it was in her best interest to place her where she is safe and looked after, 24/7. We can't do it anymore. We are all worn out from trying. And obviously, she got ill anyway. She's not gotten sick since she was placed. We know we did the right thing.

Just like the illness, home care or placement is an individual decision based upon many factors. One thing caregivers have in common is their big hearts. We should reach out to one another and support whatever decision is made. What is right for my loved one, is not necessarily the right thing for your loved one.

Support each other.....that is how we all survive.

Karen


I Promise I'll Never Put You in a Nursing Home

Dear Friends,

Do you find it next to impossible to start a conversation with your aging parents about difficult issues? Maybe you are concerned with your loved one's health, or you see what you think are the early signs of memory loss, or you think your loved one is making some risky financial planning decisions. Perhaps you have made a promise to your loved one to "never put him/her into a nursing home" and are forced to reconsider that promise.

Throughout the month of August, ElderCare Online (http://www.ec-online.net) will feature a series of articles and interactive discussions on the hot topic of "Talking With Your Aging Parents."

We will also be featuring several articles and book reviews on our Hot Topic. Our first article, "Promises, Promises," is already available on the website. Be sure to read it before joining the chat session! The article covers several different scenarios and types of promises that children and spouses of aging loved ones may face, along with practical ideas for resolving conflicts. Later this month, Phyllis Laudano, our newest Staff Writer, will review the popular book, "Coping With Your Difficult Older Parent" by Grace LeBow.

Mark will be our guest moderator in the ElderCare Forum message board. He will respond to your posted questions and comments. Members like you will be sharing their insights, challenges and stories in this busy interactive venue. Please join the ongoing conversation by sharing your experiences. It will help other caregivers in this particularly painful challenge. You can access the ElderCare Forum here. As a special incentive, one respondent will receive a reward from ElderCare Online (usually a caregiving book or free gift from one of our sponsors).

Note: Mark is a practicing psychologist and counselor, so he can not answer your personal questions directly on the Internet. However, he can talk about the general issues that you raise and show you some techniques for addressing them.

We are fine-tuning a new educational approach for the Internet: Each month we will feature a challenging topic for discussion by our members. We will provide interactive discussions with experts in both the chat room and the message board. Also, we will publish a series of articles, book reviews and resources to help you see the challenge holistically. Just look for the new Hot Topic logo (the lit match) on the front page.

Kind Regards,
Rich O'Boyle
ElderCare Online
"Tell me why – Show me how – Hold my hand"
http://www.ec-online.net


Alzheimer's Stamp

We are very excited to read this article in today's news. Imagine an Alzheimer's Stamp. Please click here to read more about the Alzheimer's Stamp Project ( Ageless Design - Current Alzheimer's News ) and click on the accompanying link to add your name to a petition to be submitted to the US Postal Service ( Ask Ageless Design ).

We strongly support this project and want to do everything that we can to make it happen. Won't you please help.

Yours truly,
Mark Warner

Editor's Note: This was sent to us by many people. Thank you all for bringing it to our attention.


In Passing: Those We Must Remember

From KJIL
Dated 7-17-00

I just wanted to take a few minutes and thank "The Ribbon".

My Mom was diagnosed 2 years ago with AD and I began reading The Ribbon. What guidance and help you all offered. I learned to understand what was happening and what to expect.

My Mom passed away June 27th. We as a family, decided that Mom would want to help others with AD, so we donated her brain for research. The MUSC people couldn't have been more gracious and thankful. We also asked that in lieu of flowers that people make a memorial donation in my Mom's name to the Coastal Carolina Chapter of the Alzheimer's Assoc. They have as of yesterday, recieved more than 30 donations in her name. Yeah!

Please keep up the good work, people need you all.

Thanks.
Kate


From Rootsflo
Dated 7-24-00

Just wanted to let you know that my father passed away on July 7 of a massive heart attack. He had lung cancer, stage 4, although in the early stages, the cancer was still contained to the left upper lung, but had metasticized (spelling) to his sixth left rib, he also had congestive heart failure which the left side of his heart was only working at 10% capacity. The week before he died, he had gotten good news that the chemo was shrinking the tumor in his lung and that things were looking good with the cancer, but unfortunately, the heart was just too week.

He died doing what he loved most and that was piddling around and fixing things, he was replacing the battery in his car when he just collapsed, the heart attack was massive and there was nothing that could be done.

I love my father very very much and will miss him terribly. Last week was very tough for me, and this week the reality is really setting in, but what helps me the most, is that he died happy because of the news he had received from his oncologist, he had talked with every family member during that week, and spoke with me on the phone only one hour before he passed, and also that he will not suffer now with the end stages of cancer. He was in alot of pain with the cancer in his rib and I think he was suffering more than he let on. My father was an extraordinary man and I will miss him tremendously and I know he loved his family with all his heart.

Anna


Email Bag

From JDunn56760

THANK YOU. I NEED THIS, AS EACH ISSUE GIVES ME MORE INSIGHT INTO THE DISEASE THAT RAVAGED MY HUSBAND TILL HIS DEATH 6/9/00. I MISS HIM, NOT WHAT HE BECAME BUT WHO HE WAS BEFORE. JDUNN56760@AOL.COM JAN


From JDD1953

Thanks for "The Ribbon"! It is so helpful to receive it.


From jeswingla

I also just read Charles Pierce's book and found it remarkable. I recommended it to my support group. Thanks for all the helpful input from everyone connected to The Ribbon.


From NLEUBNER

I have a question for The Ribbon if you would pass it on.

My dad was diagnosed with dementia about a year ago. I was warned that he could become violent as it progresses. He has suffered from depression for many years and threatened suicide several times. He was put on Zoloft last November and has hallucinations which they tried treating with Haldol but he had a reaction to it. He is incontinent with both bladder and bowel.

Today the nurse at the assisted care facility he lives at told me that for the past 3 weeks he has gotten verbally abusive and makes sexually inappropriate comments to the caregivers. They have requested that he have a physciatric evaluation and that he be put on medication to control his behavior.

I'm just so totally frustrated with everything. I have just switched doctors and we are in the process of going through a whole battery of tests again. The new doctor thinks dad may have parkinsons and he doesn't want to try any new meds until all the test results are in. I certainly agree with that but what do I do in the interim?

How do the rest of you cope with all of the decisions that have to be made. It seems like we get through one problem and then something else happens.

I certainly would appreciate your comments!!

Nancy


From NannyDean

I have to tell you that your publication gets better each and every issue. I can't imagine how the two of you coordinate and put together such an articulate, accurate account of occurrences living as far apart as you do. I can see two neighbors sitting down, discussing and doing this in person but to accomplish such a feat when you live so far apart to me is a miracle. Those of us dealing with this disease are just fumbling in the dark. You will never know everything there is to know. I can't imagine not having your knowledge to lead and guide me as I need all the help I can get these days. I appreciate you, I admire you and I have grown to love you like the sisters who want no part of my life. You can't imagine how anxious I get when I see The Ribbon in my mail. I can't wait to print it and read. Days like Saturday need not have occurred had a single nurse not taken it upon herself to be John's Physician that day. I went through this with the DON less than two months ago but this time I fully intend see that something is done. I know John's agitation level as he had been so nervous and anxious he had called all day on Friday. Had to recharge the phone. So I knew what he needed. My God the man's roommate had just died and that was not my husband I spent Saturday with. She caused me to do something I haven't done for over a year yet I do not blame John. There had been so many traumatic things happening in his life, it was completely normal for him to be the way he was. But losing my temper, I share the blame with the nurse.

Had I not been so exhausted from doing physical work with it about 108 degrees outside for about 4 hours every day I wouldn't have been so drained? But as I put on the board he will remember nothing of the day and it could in all reality been the one to cause me to have THE BIG ONE. He doesn't understand the repercussions of what is happening to me. Dan and I are two pathetic souls. He is going back to work today minus the use of that left arm, two more weeks of intensive therapy and then surgery from the back of his neck with no guarantees. He is scared to death, he is worried about me, I am worried about him, we are in a pathetic pair. Well, I started this letter to tell you two wonderful women how special the two of you are. This was not to be about me but I have to say Thank You for the many who live for your newsletter but forget to say those words. We are so blessed to have you in our lives and keeping the letter alive and vital ...... But most of all I love the two of you to pieces.

All My Love,

Dean


From jandmg@neca.com

I am very new to Altzheimer's and my sister kindly signed me up, I got your last volume, but not the info, where it shows all you have to offer. I would love to participate in a chat (I have very bad eyes and sometimes the typos are horrendous) Could you please send me the correct address for the beginner? (I am not on aol).
Thank you so much for being there!

Judy


From DKThomp

Many people ask me how Ann is doing and my first thought is to say she is oblivious to all. But that is not quite right for once in a while there comes a twinkle in her eye or a smile on her face and that makes my day. But much to the time oblivious does describe well how she is. I wrote this in my journal this the other morning trying to gain some solace in writing about this struggle. I will share it with you.

 

July 30, 2000. It the past few weeks a profound change has taken place in Ann. She is less and less aware of her surroundings. I can look her in the eyes and I am sure she doesn't really see or at least doesn't recognize what she is looking at. The cognition between what her eyes see and the imagery in the mind is just not there anymore. I fear there is a great chasm of nothingness has opened in her mind. The black hole that has sucked in all her memory has also swallowed her general awareness of her surroundings. In one way this is a blessing, for just maybe she is no longer able to understand her own plight. It would be unbearable for me to know she is conscious of what is taking place and a prisoner to this affliction without any help or hope of responding. The one great comfort I have is that I know down deep within her heart and soul she still knows that all is well with her soul. One of our favorite hymns has always been "It Is Well With My Soul", and now so more than ever; the first verse is especially cogent.

I am sure that all is well with her soul for this is the great promise of Romans 8:16, "The Spirit himself beareth witness with our spirit, that we are the children of God." Without this assurance I could not continue daily caring for my beloved Ann. When this all started, Ann wanted to share the living hope she has in Jesus. We find this rich promise given to all God's children in I Peter 1:3, "Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by the resurrection of Jesus Christ from the dead." These promises are true and though she can't say so anymore I will declare for her that her faith and hope is still alive today.

I have tried to say in poetry what I see happening to her today, and the hope I have for her restoration of joy in the Lord when God sends for her to come to the home that He has prepared for her.

Eyes That Don't See

Her eyes stare but no message they share.
A treadmill of travail, mind is not aware.
Her eyes look, yet they hunger to see.
Oblivious to all she doesn't know me.

Chambers of imagery gone from her mind.
The black shadow of forgetfulness is kind.
She has eaten the bitter herbs of this affliction.
Cognition fleeting by this sinister imposition.

Struggling for knowing all but gone.
Blissful nothingness her daily song.
More is less for eyes that don't see.
Light is empty she doesn't know me.

Her mind now a tangled web of dying cells.
Blocking pathways where memory dwells.
O Lord, call her home made for her above.
Restore her joy in the very presence of your love.

In His Great Love,

Doug and Ann


From Amri63

Hello,
My mom decided to be really stubborn today. For those of you that don't know, she has Alzheimer's and I am her sole caregiver. She is tired, and she will not get up to go to the Day Care Center. I tried to get her up, and she was like dead weight. She even said, "Don't bother me". She can talk when she wants to!! HA! My back started to hurt, so I had to stop. I can't throw my back out; then I won't be able to work at all! Anyway, if you could just pray for her and for me, because I have to work. I don't want to put Mom in a Nursing Home yet. Just pray that she will not be like this all the time and that she will go to day care. You can pray for healing and wisdom in dealing with the situation if you like.

Thanks everyone. You may feel free to pass this message on if you want. Where two or more are agreed upon anything in His name, it shall be done. So I am going to cover the situation in prayer.

Thank you again.
Irma


From Punyun

First of all thanks for the the updates on The Ribbon. On the sad note, my Mother whom has Alzheimer's has advanced now to the later stages. She has lost most of her motor skills and I have her now in Hospice as cancer is also a factor. We don't know that cancer is present for sure because I have chosen not to put her thru any more test or procedures. She has been thru enough. She knows who I am and who her immediate family is but that is about it. I had her in a nursing facility the first of May, after her last trip to the hospital, where they had her up and taking a few steps. I had hope they could get her, therapy wise, moving enough I could take care of her here at home some more. I've cared for her since 1985 when she was diagnosed with osteoporosis. The Alzheimer's has progressed rapidly and I took her out of the home as they did an oops and broke her leg in two places transferring her from the wheelchair to the bed. She'll never get up now. It broke my heart. So now we are back home and what ever is to be will be. I have done all the medical people have asked me to do to get her moving around and it just is not working and it is so hard and unfair to her. So now it will be in God's hands. Thanks again, Ginny


From CAREVOICE
Response to Dean re: companionship

Yes, you have opened that proverbial can of worms...and how WONDERFUL! (At least, that's what I think.)

Unfortunately, I only skimmed your posting to The Ribbon (issue 24 July 2000); however, if I caught the jest of it...you advocated getting on with your life even though John, your husband, is in a facility. You added that your daughter finally came to accept your recent companion and comforter--the computer specialist.

As a daughter of a father with Alzheimer's, I cannot possibly walk in your shoes and feel how it is to have a spouse with this disease. As a fellow author and caregiver I believe I can empathize. Our society will need to rethink how we configure traditional relationships. As we live longer and endure unique illnesses and diseases, religions may need to reinterpret guidelines.

Consider the following...under what circumstances can a man sleep with another woman in his bedroom while his wife sleeps in another room of the same house? When I ask this question of people they are shocked to hear me raise this issue. Yet, a man with Parkinson's whose wife hired a night nurse so she could get some rest at nights does indeed share his bedroom suite with the (female) night nurse.

Regardless of dogma, taboos, morals, guidelines, we need to understand at our very human level, we each have a need for companionship, warmth, and affection. AD challenges the "in sickness and in health" vow of marriage given the length of life we each live. Your intentions and heart seem to be in the right place.

May more people think through their life situation and follow in your footsteps

Genuinely Yours,
Brenda Avadian, M.A.
The Caregiver's Voice
Speaker and Author, "Where's my shoes?" My Father's Walk Through Alzheimer's and soon-to-be-released, CAREGIVING 101 and The JOY of Alzheimer's: Caregivers share their JOYFUL experiences caring for their loved ones.


From cmajoe@ix.netcom.com
Response to Dean re: companionship

I read your saga in The Ribbon. I am the priest who lead a communion service in the AZ ward. I can relate to every step you have taken in your journey with John and AZ. I just not too long ago buried my mother after 15 years of responding to the twists and turns of AZ and mom.

One sister of mine had a husband who developed AZ before the age of 50 and after fathering six children together. AZ took its toll and John was instittutionalised. John then decided his wife andchildren were deeply hurting and he told my sis to go enjoy life and date a fellow again. Sis followed her husbands advice. About a year later sis brought her male friend to the hospital to see John and he approved of him.

John told sis to get married. Sis said I can't do that to you. That very week John went swimming in the gym pool. He sat on the bottom of the pool and refused to come up for air. In his room was a note to my sis "Now we are both free." Yes they will be both united in heaven no longer prisoners of AZ.

Dean, God is love and he wants us to love and be loved. The John you married is no longer on this planet. Almighty God understands where you are and how you got here. The Lord Jesus Christ is a lot easier to live with than some of his kids.

I bid you peace,
Fr. Joe


Well, that's a lot of reading to keep you occupied until next time.

Hugs and Peace
Jamie...DrMOM1955@aol.com
and
Karen...KMenges581@aol.com

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