Volume 2, Issue 3
February 9, 1999

The Ribbon is late this issue due to crisis situations here lately. I'm finding out that when in "Crisis Situations" we need to reach out. Most of us tend to pull into our own little world and try to deal with the situation by ourselves or just with family. We may be embarrassed or afraid to admit that we are out of control of the situation or our feelings. Fellow caregivers, I as well as all of you, need to realize that we all share the same feelings. There are days, when I may give you a boost to your confidence, and then there are days you give me a much needed boost to mine. We all must remember to let others know what we are going through and not think, "Well, no one has had to deal with this so I won't mention it". There is always someone who is going through it or has already gone through it. We must continue to share. I for one am learning this the hard way. Thank you to the special people who have been pulling me out of my depression. I'm beginning to see the light again.

Hugs, Jamie

The Common Bonds of Caregiving

by Suzanne Mintz, President/Co-founder NFCA

What is caregiving and how do you define a family caregiver? What is the common thread that ties together those of us who care for spouses, children, parents, siblings, partners or friends who are chronically ill, frail, or disabled?

It certainly isn't the tasks of caregiving. They vary so much, from helping a developmentally delayed child learn new skills, to taking an aging parent to frequent doctors appointments, or suctioning a spinal chord injured spouse virtually every hour every day.

It surely isn't the number of years involved. Caregiving can last a few short months. It can last three to five years. At times, caregiving is a lifetime commitment.

Location varies from situation to situation. Although most caregiving goes on in the home, and most caregivers and recipients live under the same roof, talk to anyone whose parent is in a nursing home and you'll quickly learn that caregiving doesn't end when someone else is responsible for day to day care, or when caregiving takes place long distance.

If it isn't the responsibilities or tasks, and it is not the length of time, if it isn't the location - what is the essential bond of caregiving? What does caring for a spouse with multiple sclerosis have to do with caring for parents who are losing their independence, or a child with epilepsy.

In 1994, when the National Family Caregivers Association (NFCA) conducted its first caregiver member survey, we were seeking to find that common bond, to define the link between all caregivers. We found in no uncertain terms that the common bond of caregiving is its emotional impact. In 1997 when we surveyed our members again, we found the same thing.

The common bond of caregiving is the intense sadness we feel because someone we care about has suffered a brain injury, is losing their mobility, will never achieve normal life functioning. It is the sadness that comes from wanting the miracle of normalcy.

The common bond of caregiving is the upheaval of changing family dynamics that occurs because life has been turned upside down and because there is no set timetable for working through the painful stages of grief which caregivers and care receivers all experience in their own personal and private way.

The common bond of caregiving is the sense of isolation that comes from living outside the norm , from having everyday activities of life - dressing; walking; toileting; breathing, thinking clearly - that everyone else takes for granted, become such a big focus in your own life.

The common bond of caregiving is the frustration we all experience because it is so hard to get things done, because non-caregivers just don't understand, because healthy people park in handicapped parking spots, and because people who are supposed to have the answers often don't.

The common bond of caregiving is the stress we feel because we don't have enough leisure or personal time, and the common bond of caregiving is unfortunately often the severe depression that so many of us suffer.

These are the common bonds of caregiving that tie us to one another, that develop in us an innate understanding of each other's pain, each other's lost dreams, each other's fears.

These shared emotions, these very difficult emotions, are the common bond of caregiving. But there is another common bond, another shared emotion, that we don't recognize as often as we should. It is the inner strength that most of us never new we had.

It is the fortitude to go on despite the pain It is the wellspring of hope we always dip into. It is the power to make a difference. It is the clever way we solve a difficult problem. It is the knowledge that we have been tested by fire, and we have survived.

Our inner strength is the gift we have been given. It is the "pay back" for the pain, and although many of us would gladly trade it in for an easier life and our loved one's health and well being, we nevertheless ought to recognize its extraordinary value.

The problem is I don't think most caregivers do recognize it. I think most caregivers are so caught up in the act of caregiving that they don't step back and look at the extraordinary things they do. I think a great many caregivers don't even identify themselves as caregivers.

This is not surprising. The term caregiving does not exist in most dictionaries. Caregivers have not been counted in a US census and are therefore not officially recognized as a significant minority. Caregiving and caregivers, are invisible.

I wish it weren't so. I wish caregivers were given their just due. I wish caregivers themselves would recognize their value, acknowledge their individual achievements. Empowerment is an overused word, but it is the one that comes to mind when I think of what I want for caregivers.

Empowerment for me means a sense of self confidence, a belief in one's ability to have some control over situations, a sense of pride, a feeling of self respect and self worth. For the most part, we use our inner strength to help our loved ones and to get through difficult caregiving days. We need to begin to use it to take better care of ourselves, to feel proud, to experience the beauty of self love.

I received a letter recently, actually an Email, from a member of the National Family Caregivers Association. She said that NFCA had become a great solace to her. She said that we made her proud to be a caregiver.

Proud to be a caregiver. I mulled the phrase over in my mind for quite some time before I realized that the true definition of caregiving is buried in that phrase, in the understanding that caregiving is a role that tests our abilities, our faith, and our character.

What is caregiving? How do you define a family caregiver? I think I have the answer now - you define family caregivers by their emotions and their spirit, by the sadness in their eyes, but also by the determination in their hearts. Caregivers are very special people.

This article first appeared in Paraplegic News.

The Stages of Caregiving

Caregivers experience four clearly defined stages as they travel the caregiver path. These stages can be understood as "developmental tasks" in adapting to the role of caregiver. These "stages" may occur at the same time, or in any order, and may "recycle" themselves during the course of a caregiver relationship.

Surviving

Surviving is what you do to keep going when you are feeling completely helpless. Surviving consists of coping: doing what has to be done and expending one's energy to just get by.

Searching

This is a time of action, of moving forward from a reactive state of surviving. It is the beginning of a sense of control over emotions and your life; the awakening of a source of energy; a time for asking questions about the goals, values, and priorities of your own life.

Outer searching asks "What's wrong? Can it be fixed?" Inner Searching asks, "Why? Why him or her? Why me? Why us? What does this mean for me and for our lives?" Searching also involves seeking answers and interventions related to the illness or condition.

Settling In

This stage is seeing the world for what it is and seeing yourself for who you are. It is moving beyond the intense emotions of surviving. Feeling less of the sense of urgency of searching, and gaining a greater sense of control and balance in your daily life. Settling in is a time of relative equilibrium: you may not ever "forget" the reality of your precarious time, but it can become a time of deepening, and more precious, moments in the relationship.

Separating

This final stage is a normal and necessary process in parent-child-parent or spouse-spouse relationship, "letting go" by the caregiver may be especially difficult, with the caregiver unwilling, or unable, to experience any small separations, such as letting others help out in the caregiving and getting needed respite. However, it is necessary to avoid caregiver fatigue, and to allow the needy family member to retain or attain some level of independence.

The four stages are a part of a normal process of adaptation. By understanding how they work, caregivers can better predict their emotions and reactions, and not think they are some how "failing" when they feel a sudden rush of uncomfortable feelings. The stages help us see how we grow through the crises and hard times of our lives. The struggles and challenges of caregiving present great sorrows at times, but also opportunity for personal growth and competence.

For the entire article, contact NFCA. You can reach them at (800)896-6430 or write to them at:
9621 East Bexhill Drive
Kennsington, Maryland 20895-3104
Info@nfcacares.org
www.nfcacares.org

Medical News

This article was sent to us by several people. I am going to just include excerpts since it is a rather lengthy article.

World Environmental Conference and the Multiple Sclerosis Foundation

FDA Issuing for Collusion with Monsanto

Article written by Nancy Markle (1120197)

I have spent several days lecturing at the WORLD ENVIRONMENTAL CONFERENCE on "ASPARTAME marketed as 'NutraSweet', 'Equal', and 'Spoonful'". In the keynote address by the EPA, they announced that there was an epidemic of multiple sclerosis and systemic lupus, and they did not understand what toxin was causing this to be rampant across the United States. I explained that I was there to lecture on exactly that subject.

When the temperature of Aspartame exceeds 86 degrees F, the wood alcohol in ASPARTAME coverts to formaldehyde and then to formic acid, which in turn causes metabolic acidosis. (Formic acid is the poison found in the sting of fire ants). The methanol toxicity mimics multiple sclerosis; thus people were being diagnosed with having multiple sclerosis in error.

During a lecture I said "If you are using ASPARTAME (NutraSweet, Equal, Spoonful, etc.) and you suffer from fibromyalgia symptoms, spasms, shooting pains, numbness in your legs, cramps, vertigo, dizziness, headaches, tinnitus, joint pain, depression, anxiety attacks, slurred speech, blurred vision, or memory loss -- you probably have ASPARTAME DISEASE!"

Memory loss is due to the fact that aspartic acid and phenylalanine are neurotoxic without the other amino acids found in protein. Thus it goes past the blood brain barrier and deteriorates the neurons of the brain. Dr. Russell Blaylock, neurosurgeon, said, "The ingredients stimulate the neurons of the brain to death, causing brain damage of varying degrees." Dr. Blaylock has written a book entitled "EXCITOTOXINS: THE TASTE THAT KILLS" (Health Press 1-800-643-2665). Dr. H.J. Roberts, diabetic specialist and world expert on aspartame poisoning, has also written a book entitled "DEFENSE AGAINST ALZHEIMER'S DISEASE" (1-800-814-9800). Dr. Roberts tells how aspartame poisoning is escalating Alzheimer's Disease, and indeed it is. As the hospice nurse told me, women are being admitted at 30 years of age with Alzheimer's Disease. Dr. Blaylock and Dr. Roberts will be writing a position paper with some case histories and will post it on the Internet. According to the Conference of the American College of Physicians, "We are talking about a plague of neurological diseases caused by this deadly poison". Dr. Roberts realized what was happening when aspartame was first marketed. He said "his diabetic patients presented memory loss, confusion, and severe vision loss". At the Conference of the American College of Physicians, doctors admitted that they did not know. They had wondered why seizures were rampant (the phenylalanine in aspartame breaks down the seizure threshold and depletes serotonin, which causes manic depression, panic attacks, rage and violence).

Help!!!

As we begin our second year of The Ribbon I must ask you all for your help. Our mailing list has grown from a handful to an amazing 400!! As you can imagine the e-mails I receive can really overwhelm my mailbox. But something I really need from all of you is notification of your desire NOT to receive The Ribbon any longer. If you change your screen name, change servers or simply do not wish to receive the newsletter please, please notify me. If you are on the mailing list and you are no longer using the screen name you originally sent me, I get an error message telling me that you are "an unknown member" and am unable to send out that block of names. This slows down considerably the process of sending out The Ribbon. When sending out the most recent issue, I had 15 such messages! As I am a caregiver myself, this extra time and effort makes my task more difficult and time consuming. Plus, I don't want anyone to miss out on receiving their copy of The Ribbon. I want to personally thank you all for all of the e-mails, articles and links you send. It is an honor and a privilege to know you all and to participate in the creation of each and every issue of The Ribbon.

Looking forward to another great year,
Karen (KMenges581@aol.com)

Good News! :-)

The Ribbon Named People Connection's Newsletter of the Week

Just a note to let you know The Ribbon is People Connection's Newsletter of the Week! You can find the promotion either through our top screen (Keyword: Chat) and then click on the Free Newsletter icon or take a shortcut via Keyword: Schmooze

Please let me know if you see an upswing in subscriptions as well as any comments you might receive. If someone requests information on how to start their own newsletter, you can refer them to our Start Your Own Newsletter page.

Congratulations!
Kimberly
People Connection Programming Team

More Good News! :-)

The Ribbon Recomended by Suite101.com!

From Weather91@aol.com

I'm so excited about the mail I just got...

Hello,

I received your comment left at my web site. After viewing your web site The Ribbon and reading a bit of the content I think you are very worthy of mention at Suite101.com!! I will be featuring your site in my new article to be published on January 22 and your web site will be placed in my permanent list of links on my Links page.

I have attached an award Logo for you to place on your web site. Please link it back to my site at http://www.suite101.com/welcome.cfm/alzheimers_disease

Thank you for directing me to your site. I may use information presented in future articles and I always direct back to the originating site.

Sincerely,

Karen L. Largent, LPN

Alzheimer's Disease Editor at Suite101.com:
http://www.suite101.com/welcome.cfm/alzheimers_disease

Go to Alzheimer's Disease Web Sites - Suite101.com, and read their write-up about The Ribbon...

Kevin

The Ribbon Website Message Board

We hope you will take advantage of our new Message Board on The Ribbon website. As we get postings, we may use some of them here in your newsletter. You can use it to find another caregiver who lives near you, to ask questions, to make comments, or to give tips.

Kevin is working very hard on the website. If you haven't been lately, check out the new features and the awesome new look.
Welcome to The Ribbon | The Ribbon Online Discussion Forum Message Board

In Passing: Those We Must Remember

From Wesswon@aol.com

I just want to thank you for The Ribbon. It has helped me in many ways during all the hard times with mom. My mom passed away on Jan 17th after she fought a hard battle with pneumonia. She had quit eating and dropped down to 75 pounds. She didn't have anything left to fight with. She sure did struggle to stay with us. I know she is in a good place and finally at peace. Even though it Is a long good-bye and expected our loved ones will go, It still doesn't make it any easier when they do.

Again thank you for being there for all of us with The Ribbon.

E-Mail Box

From MARYMARYIM@aol.com

I have a question I haven't seen much about in the newsletter. I am wondering how other caregivers handle their loved ones finances, when you take them into your home to live the rest of their life. If the person still owns property and has assets, does the caregiver receive anything for taking care of the patient as a nursing home would? Does the caregiver get any compensation? Often the caregiver must take time off work without pay, with no help from siblings. I am curious how others handle this problem.

From CM41620@aol.com

Thanks again for another perfectly timed issue - My Grandmother who has sever dementia has been announcing she wants to go home a lot this week. I didn't know what to do, besides take her back to her 'area' or 'home'. My Father (her son) and his wife have been dropping in every day this week, they live in another state and stay in a hotel when they visit. Thanks so much. Cari

From NO900@aol.com

My husband wakes up at night wanting to go Home. Your explanation is very helpful in understanding the reason for wanting to go Home. We have lived in the same house for 27 years but he still wants to go Home. I am very grateful that our area just started a support group and I can pass on info from the Ribbon's which will help some of the caregivers. We only meet once a month so joining chat groups gives a lot of support.

For the past few months my husband has had a peculiar odor coming from his "fanny" He says he will take a shower, something he fought. I find that he is not wiping properly and the odor seeps thru to his outer pants. As I said it is a peculiar odor not what you would think of. If anyone has this problem I would appreciate hearing about it. I always have to check before going out as it could be embarrassing for me, he don't even realize it.

Thanks again for all the info. NO900

From Datel123@aol.com

Please tell Elsa that she needs to spend the extra money and find an attorney who deals solely in Elder Law. They are familiar with all of the necessary powers of attorney she will need. I am in Texas and I have never heard of a Proxy Power Of Attorney. All states are different so that is the reason I suggest finding a good attorney versed in elder law for advice.

From Awluv@aol.com

Thank you for all the knowledge that is shared with this dreadful disease. My husband had a stroke one year ago, His dementia is somewhat different he knows who he is, but does compulsive things to harm himself. He is very confused and very lucid at times, it is very comforting to be able to read at any given time, your thoughts and situations..Today has been a trying day he wants to go home and tried to leave the hospital, on his own, he is paralyzed on one side, he went with out any cane and brace. God was with him the nurse got before he did anymore harm to himself. I would like some input about this kind of dementia I can use the support.

Thank you
Angie

From Justme8441@aol.com

I want you to know how much I appreciate your keeping me on your mailing list. I have been taking care of my 85 year old father who suffers from dementia and also work two jobs. I haven't been able to participate in the chat groups because I am usually working those nights. I look forward to the mailings to have some sort of connection with people who understand our problems. Caretaking of someone with dementia is truly something one must experience first hand to understand fully. People may sympathize... however, they don't realize that caretaking in your home of a family member with dementia effects every nuance of your life...from the moment you wake up until you go to bed....24 hours a day! Every action and decision you make is a reaction to the caretaking situation. It effects the family dynamics...spouse, children. The physical work is one thing....the emotional impact is extremely difficult. It is a very lonely and isolating experience.

I truly appreciate your efforts and keep up the good work!

Thanks. Justme8441@aol.com

From GivinCare@aol.com

Hello, all..

This was a nice article on "Wanting to go Home", I would like to add another thought. I saw in my mother that this sometimes mean an unmet need that she felt could be met at home. As she was becoming bowel incontinent, she expressed that as "well, I better go home.." because within herself she knew she needed to get away the environment she was in. Sometimes it meant she was hungry or uncomfortable or tired.

Debi

From I rx pts@aol.com

Thank you so much. I have been to the site and downloaded lots! It is absolutely beautiful! I am totally overwhelmed with all that you and the others do. Thank you is such a simple word. But I must tell you that. I believe that I had told you that I had been to the group about a year ago. Things happened within my family and my mother was manipulated into some serious things. God gave me and my sister a gift recently by allowing us to find our way back together. I am once again active in my mom's life and my sister's. Sadly mom isn't "living" the best of life right now. But I am glad to have a part in whatever the future brings. The group was such a big support as I was starting a plan of care for mom before. And now you are all right there to welcome me back again. Guess that I am so blessed at times that I am totally amazed.

Again I thank you for all your help. And for all that you do to help so many others. And please convey my thanks to the others that are so giving. If there are things that I can do to help the "group" please ask. I would love to help in anyway I could.

With graditude-Rita

From Xyz1984@aol.com

Just a little info. Have you ever heard of recovery inc. It isa self help method of will training for controling nervous symptoms. Many people that come to our meetings are care takers of some sort and it helps them alot. For more info they can contact the web site at recovery-inc.com God bless

From YORKY FWJJ@aol.com

KAREN, I NEED TO FIND CAPABLE CNA'S TO FILL IN FOR ME OCCASIONALLY SO I CAN WORK AN OCCASIONAL PARAMEDIC SHIFT OPEN ON THE WEEKENDS. CAN'T FIND CNA 'S ON THE CONNECTICUT SHORELINE.

MY AUNT IS ON TITLE XIX, SO THE STATE WILL PAY... BUT, NO ONE IS EVER AVAILABLE. FRANK REAL NEED IS GETTING HER CLEANED UP IN THE MORNING AND PUTTING HER TO BED AT NIGHT..

Have
A
Happy
Valentine's
Day

Hugs and Peace,

Karen (KMenges581@aol.com)
and
Jamie (DRMOM1955@aol.com)

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