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The Ribbon - Care for Caregivers
Volume 8, Issue 4
February 26, 2004
www.TheRibbon.com

1325 Venus Drive
Nashville, TN 37217-1918

Greetings Ribbon Readers,

This has been a hectic time since the last issue. Nick has had his EDG, Colonoscopy, and his shoulder repaired with not really any bad side effects. We did find when he had a chest x-ray before the shoulder surgery that he had nodules on his left lung. A CT scan has shown that they are calcified so therefore something we do not have to worry about. Yippee!

Work on The Bridge has been going along. When I left on Tuesday night we had a full house and boy was it busy. I've been getting a good bit of overtime which is good financially but it sure does wear on this old body. (smiling) I continue to love my work and hope that I'm making a difference. I learned a new way of handling some of the combative people...when they kick or grab my hand to bend the fingers every way but the right way, instead of pulling back and getting the patient more agitated,I relax and tell them that if they hurt me then I won't be able to help them and care for them. So far it is working. Of course, this has to be repeated numerous times a day but at least it calms them for the moment and I'm not getting hurt. That's always a good thing!

This job has been a real eye opener for me. My relatives didn't go through all the things that I'm seeing. I am really seeing first hand some of the behaviors that so many have talked about but I didn't experience. My grandmother shadowed me but no one wandered....wow! some of these people wander all over all day long. I have a new and tremendous respect for those of you who are caring for someone at home who is a wanderer. I don't know that I could have kept my relatives at home like I was able to if they had had this symptom.

I would like to say that we have more angels in our midst. Steve and his mother, Frances sent a donation to The Ribbon. We would like to say Thank You for this contribution. It is angels like you who help to keep The Ribbon going.

I got an email from Nicole at my local Alzheimer's Association. Our Memory Walk will be September 25. Have you found out about your local walk? You know you don't have to wait until the last minute to start collecting donations!!! You can even start recruiting members for your team. Get a jump start on it and go to the Memory Walk in your town and have a terrific time knowing that you are helping fund the different programs your Association provides.

That's all from me for now! Hugs to you all!

Jamie


"They were Never Defeated, Only Killed"

(Said of the French Foreign Legion)

I was reading The Book of Choices by Mike Magee, MD and came upon this quote. So just out of curiosity I did a web search for information on the French Foreign Legion. What I discovered were some striking similarities between legionnaires and caregivers.

The French Foreign Legion is an elite force made up of volunteers from all races, creeds, and nationalities with a mission to carry out their duties to the end. Among the reasons for joining is a family crisis. Legionnaires are dedicated to the cause and refuse to be defeated; are strong, courageous, and loyal; and share a strong bond of solidarity. Legionnaires will never abandon their posts and under no circumstances surrender.

Caregivers too, are an elite force of more than 29 million strong and most have joined the ranks because of a family crisis. They come from all walks of life, are strong courageous and loyal, and share solidarity in their struggles - which are many: They struggle to greet each day with optimism and hope; and struggle to cope with the unthinkable and the unknown. They will never abandon their loved ones and never surrender to defeat. They are special people doing special work out of a sense of love, loyalty, and responsibility. And sadly, like Legionnaires some die.

Caregivers give to their loved ones at the expense of their own health and stress is the dreaded enemy. Stress is the greatest risk factor for depression and the initiator of dangerous health events. Spousal caregivers are six times more likely, and adult children two times more likely, than the general public to suffer from depression. Depression has a harmful effect on the immune system putting caregivers at risk for heart disease, cancer, and death. This is never truer than in older spousal caregivers. Their risk of early death is 60% greater than non-caregivers their age. So, the question is: What can caregivers do to lessen their risk of illness and untimely death? The answer is: Plan scheduled time off to have fun and be happy.

It is very easy to give advice, but very difficult to accept. Many caregivers suffer pangs of guilt when they think about getting away or letting go. Thoughts like "How can I enjoy myself when my loved one can't?" "It is selfish to think of my own needs" and "What would people think?" run through their minds. If getting past the guilt is too difficult, counseling will help. Joining a support group is also beneficial. Sharing experiences with others in a safe environment provides a sense of understanding and belonging that improves self-confidence. Taking time to relax and enjoy life is not selfish - it is self-caring.

Caregiving is a full time job and typically not the only one a caregiver holds. About 14 million caregivers are employed and, according to one study, they can lose more than $600,000 in income and retirement benefits over their "caregiving career". They can also exhaust all their leave time, get passed over for promotions, and lose their jobs. If full time employees are provided vacation time, sick days, personal days, and set hours of work a week, why don't caregivers get the same perks? After all, they are their own employers. No one can work without a break -eventually work will break the person.

A New York politician by the name of Roy M. Goodman once said, "Happiness is a way of travel - not a destination" - and so should the means of travel be on the caregiving journey.

Having fun is pertinent to being happy. Things that are fun are pleasurable, exciting, enjoyable, or amusing and are as simple as sharing a laugh with a friend, reading a good book, or browsing through an antique shop.

Respite services such as Adult Day Centers, home care, and short-term housing provide caregivers safe travel on their long journeys. If money is an issue some of these may be free, or at least available at a reduced cost. It only takes one phone call to the local Area Agency on Aging to find out. Choosing to use respite services is not surrendering to defeat, it is fortifying the armory to maintain the post.

To never be defeated in battle is admirable, but to die prematurely is to give up the war.

Blessings ~ Mary


Mary C. Fridley RN, C is a Registered Nurse board certified in gerontology with more than twenty years of experience in the geriatric health field. She is a writer of advice columns and articles for caregivers as well as a public speaker. Mary will be glad to answer any questions you have and can be reached at P.O. Box 573 Riva, MD 21140, or by email: geroresources@comcast.net.


In Passing: Those We Must Remember

It is with deep sadness that I write of the passing of Peggy's (Aunt Dixie to our GOF '03 and Gathering Place friends) husband, Jim. He passed away on the afternoon of January 31, 2004. They spent 49 wonderful years of married life together.

In having recently met Peggy, you could tell she was totally devoted to Jim. She wanted only to have him safe and comfortable. Aunt Dixie is having her ups and downs. Sheis a very strong lady and holding up remarkably well.

Please join with me in extending your thoughts to Peggy and her family during this very difficult time.

Always,
Linda


I am sorry to inform you that I received an email from Mari (a new Gathering Place member and DASNI member) stating that her dear mother passed away on February 17, 2004.

In speaking with Mari this week, her Mother had a major heart attach on February 11. Mari's brother has been with Mom since the 12th. Mari's sister got home a few hours before her passing. Mary had the opportunity to speak to Mother this weekend. She was cognizant and thanked Mari for the flowers she sent for Valentine's Day. Of greater importance, they told each other they loved each other.

Please join with me in sending your thoughts to Mari and her family during this difficult time.

Always,
Linda
The Gathering Place @TheRibbon.com

http://www.theribbon.com/GatheringPlace/

Linda@theribbon.com


Good morning all,

February 22, 2004 - Three years ago today my beloved Ann went home to be with the Lord. It is hard to understand that it has been that long, on the other hand it seems like an eternity since I held her in my arms. I have been trying to write a new book, one on daily devotions, the old kind of serious devotions based upon what the Word says to us and not what I can get out of the Word. However, Scriptures were given to be a comfort to us in times of anguish and trouble. So I wrote this devotional based on Psalm 30:5b, a verse my brother Gordon sent to me in the spring of 1998. It became a verse that stayed with me until the end. I will share that devotional effort here.

February 22

Morning at Last
"Weeping may endure for a night,
but joy cometh in the morning."
Psalm 30:5b

There are times when the Scriptures become very personal, so personal that it seems as if a verse was written with the reader in mind. It really is the other way around, for the Holy Spirit helps us at all times. It this case, it was on the day of my deepest trial and He brought me to the very verse in God's word that comforted me at the time and in the way it was needed. In fact, the Holy Spirit used my brother, Gordon, as the instrument to bring me to the comfort of this verse. Afterward, I could only sit back and say, Praise the Lord, for His mercy endures forever!

The verse for today is such a verse for me. It was three years ago today as I am writing this that my beloved Ann when home to be with the Lord. And joy did come in the morning! The joy came to her when she awoke in the presence of the Lord. Awoke to the joy of the morning that has no end for the Son of Righteousness is the source of heaven's light forever. Her mourning lasted until that morning when the winter's night of a mindless disease took her into summer's brightest day. Never again would she suffer or be tormented by that illness. Her sadness turned into singing, her mourning turned into music, her sorrow turned into sweetness the moment she saw the Lover of her soul fact to face. Joy did come for her that morning! She will never be bothered by weeping or the terror that darkness of night again.

I admit it has taken me a long time to come these wonderful thoughts about her death. In my selfish heart I did not want to let her go. But hindsight does tend to clear the mind and heal the heart. The world says time heals all wounds, but the world is wrong as usual. It is not time that heals, but the word of God that brings comfort to the soul. My weeping lasted over seven years of her illness, but my joy did come in the morning. The moment she was carried into eternity my soul was filled with joy. I knew that my joy was real and was send from God and meant to be the comfort I had for so long hope for. Yet, there is a time of grief that all men will bear in one way or another. My grief was not of anger or rancor, no just one of longing again for my beloved Ann. Forty-five years the Lord gave to us, and even in the last seven years we were together and still in love. I still miss her but the wound is not so deep as it was at first. So my weeping has also turned to joy.

"Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort, who comforts us in all our tribulation, that we may be able to comfort them who are in any trouble, by the comfort with which we ourselves are comforted of God," II Corinthians 1:3, 4. Oh sweet comfort that has come from the Comforter to uphold me and give me solace and understanding that I needed these last three years. How much He has taught me, how much I have learned as I walked in my sorrow.

I walked a mile with Pleasure,
She chattered all the way,
But left me none the wiser,
For all she had to say.

I walked a mile with Sorrow,
And ne'er a word said she
But, oh, the things I learned from her
When Sorrow walked with me!
Anon

In His Great Love,
Doug
DKThomp@aol.com


Rosalynn Carter Institute Caring & Competent Caregiver Award

In 2004, the Rosalynn Carter Institute is inaugurating a new award for professional caregivers. The purpose of the Rosalynn Carter Institute Caring & Competent Caregiver Award is to recognize exemplary professional caregivers across the nation who, through service to others, demonstrate uncommon levels of competence and care to those in need and their family caregivers. Award recipients will receive a commemorative bronze medallion from former First Lady Rosalynn Carter during the Gala Celebration of Caregivers at Symphony Hall in Atlanta, Georgia, on June 15, 2004.

Nominations for the 2004 awards may be made for persons who serve in the following categories:

  • Licensed Practical Nurse (LPN)
  • Certified Nursing Assistant (CNA)
  • Nurse's Aide/Patient Care Technician
  • Home Health Aide

To nominate someone for the award, complete the Nomination Form and submit, along with appropriate supporting documentation, to the Rosalynn Carter Institute no later than February 13, 2004. For more information go to: http://www.rosalynncarter.com/ [Site unavailable as of Feb. 27, 2004] Phone: 229-928-1234 * Fax: 229-931-2663 * Washington Office: 750 First Street, NE, Washington, DC 20002


Helpful Links

ABCNEWS.com - Private Pain

'Dear Abby' Struggles With Alzheimer's
By Dr. Tim Johnson
ABCNEWS.com

Feb. 12 -- Never afraid to take on the serious issues, Pauline Phillips - the woman known to the world as "Dear Abby" - was one of the first to make the public aware of the private pain of Alzheimer's disease.


USATODAY.com - Caregivers finding someone to lean on

Caregivers finding someone to lean on
By Janet Kornblum, USA TODAY

Larry Atencio knew his father had had diabetes for years. But he was still shocked by what he saw a year and a half ago, when he went home to visit.


USATODAY.com - Sons, daughters and caregivers

Sons, daughters and caregivers
By Janet Kornblum, USA TODAY

SAN FRANCISCO -- Every weekday at 6:45 a.m., Roberta Moore quietly pads into the next bedroom and pulls back the curtains to let in the first light. Thus begins the nearly three-hour ritual of readying her 89-year-old mother for her day.


The Fearless Caregiver Conference - A Follow-up

I was so excited about the conference, telling you about all the wonderful caregivers, and sharing all the great information I learned, I was horribly neglect in telling you about Ms. Gibbons' venture called Leeza's Place! How could I omit such an integral portion of the day's program?

A wonderful video was shown depicting Leeza's Place.It is as if you are walking into Leeza's very own living room. Leeza's Place is a safe place for those newly diagnosed with a neurological disorder to go with their families and caregivers to find education, empowerment and energy. There were segments showing a family making a video of the loved one and his/her life, activities for the patient (journaling, scrapbooking, stamping), computer labs to assist in learning the Internet, and a library of books. Much emphasis is placed onhelping the patient to know "There Is Life After Diagnosis" and to learn how to cope.

There are a multitude of resources at Leeza's Place which I encourage you to visit. One of those resources is our very own Gathering Place @ TheRibbon.com http://www.leezasplace.org/empowerment.html or The Gathering Place. We began partnering with Leeza the latter part of November. We are so thrilled to be a part of her team! We will be working together to build specific chats for youth (with very close supervision), for caregivers of parents, spouses, siblings, for different ethnic groups, for those afflicted with various types of dementia, and hopefully a chat for those who have lost their loved ones. And never fear, our nightly two hour chat will remain in tact!

And on just a bit of a personal note...I was able to spend time with Leeza after the conference. What a genuine, warm, wonderful, and caring person she is! We had a marvelous time chatting, exchanging some ideas, sharing and taking pictures, and sharing wonderful hugs! An experience that won't soon be forgotten!

Always,
Linda
The Gathering Place @TheRibbon.com

http://www.theribbon.com/GatheringPlace/

Linda@theribbon.com


Email Bag

From Datel123@aol.com

I actually thought overnight before I responded to this person's two lines of criticism in The Ribbon. First let me say I never see you on either of the AD boards on AOL and this is the first time to my knowledge that you have appeared in The Ribbon.

I absolutely saw red when I read your sarcastic comment to the two ladies who spend every minute of their time trying to educate those who want to know about this ominous disease. The reason for the sadness and not a joyous newsletter is simply a fact of life. They tell it like it is and they interject the feelings of others. I am real sorry that none of us can make this into a festival for you but we deal in reality. There just nothing much to find in this disease that brings Joy. Did you see the special on PBS where this ladies sister had AD and everyone kept asking her how her sister was? All she could say was she is losing her mind in front of me and there isn't one single thing I can do to halt the progression of this disease. There is a book, Finding the Joy in Alzheimer's. But for the majority that simply isn't true, To find joy in care giving you first have to find a place in your heart where you say, "I can deal with this with no animosity, always be cheerful, kind, and there for your my loved one." Listen to me!! The majority of the people dealing with this disease has more than just care giving for their loved one to do. Jamie is a perfect example. At one time she was taking care of three, had a sick husband and her son a senior in high school. I consider Jamie one of the best friends I have ever had and she has been my rock since 1998. She is one of the most upbeat, cheerful people I have ever known and she most definitely isn't a poor, pity me person because I never heard her complain. But it was a tremendous burden on her and even though she wasn't complaining, rarely did I hear her euphoric over what had been handed her. There just isn't much uplifting to write about this disease and for the ones who do find Joy. I am thrilled. Realistically we occasionally can find humor because if we didn't laugh at some of their antics and things they say we would stay in a dark hole. But there is a big difference in finding humor and finding joy.

You see right in the middle of all of this (I have been on this road a long time and the story is too long and convoluted to write about) I found out I have cervical cancer. I have tried to keep it low key with him because of his insecurities and fears as we all know they feed off our emotions. I Opted to have what is called surgical intervention, which means for three weeks I go twice a week, and have new radiation capsules placed directly in the cervix. Now he doesn't understand the text of what is happening, he just knows that I have to stay in bed a lot and I am frequently sick. But anytime I am sick from anything as simple as a cold it frightens him because I am the only consistent thing in his life. He depends on me for everything. Have you ever stopped and thoughtwhat it does to you over the years of being responsible of this demanding, mood-changing child in an adults body and the toll it eventually takes on you? None of us can tell you because every single case is different but you can be assured of one thing. We all at some point in time end up in the same place. I have read so much and it is amazing at the different views of how we should treat people with any kind of Dementia. My bed has books stacked all around me and there is some good advice and some that is pathetic. We have all learned the major things to do and not to do, but you cannot take a page from a book and expect what it says to work specifically on your loved one. Yes, we have to treat them differently to retain their dignity and fears. You see I have researched enough and have had enough EOADs share with me the feelings they are having and put yourself in their places. The changes and challenges they are facing are overwhelming. Their fears are real and they have to be scared if anything different is going on. They have to wonder if you will be there to care for them. They have to recognize when you are having a bad day and they feed off those emotions. But you tell me if you know of anyone who hasn't gotten angry, said words we wish we hadn't, lashed out in frustration, and just been normal in general instead of this "Saint". None of us are perfect but this is not a perfect world filled with perfect people. We are human and as such we are subject to making mistakes. How can you possibly get through the long Good-bye we have to endure and keep a happy face on twenty-four hours a days seven days a week, especially when you are the only person there? I have just recently been thrust into the 24-7 without any respite and let me tell you I have an entire new respect for those who have been doing this all along. I feel trapped like an animal in a cage. My husband being handicapped both mentally and physically is especially challenging. There are so many times you desire just one hour without hearing your name and him wanting something. I most likely wouldn't do anything but worry about him.

The Ribbon has been the most down to earth education I have received. Yes, I have read 100 books, I have attended seminars, I attended local meetings, I am writing a book and that book deals in reality. I repeatedly said the only way you will ever manage to come from this intact is by knowledge but it seems that everyone who writes a book has a different theory on what that is. I said when I started posting on the board I would never take lemons and make lemonade to make anyone feel better and give them false hope. The reality is that your loved one has adegenerative, debilitating disease. The brain isn't going to regenerate itself; facts are it is slowly dying more and more. Daily the webs are becoming more intertwined and taking more and more oftheir ability to think, remember, and be rational. I can't give anyone hope that this disease will do anything but put you and your loved one through Hell before it eventually ends. How do you find Joy in knowing that every day they wake up in a different world and tomorrow can't be judged by today? The time, just the time it takes to do this newsletter is overwhelming. But I personally thought the advice I got from this wonderful publication so much better than anything I ever bought in a book that I would print every copy, take it to a printer, put in a binder and passed it along to anyone who didn't have access to a computer. So many of the elderly just are not receptive to trying to enter the computer world as I did it reluctantly. Now I can't imagine life without it. But when you have caregivers come to the meetings and they later call you and tell you that the information they got from The Ribbon saved their lives, I felt my work was worthwhile. I always took the updates for them to put in their books. Yes, this was an expense I didn't have to incur but when I think of the people who do not know about the new generation of technology, it was worth every dime.

Personally (I do not speak for anyone but myself) I can find no Joy in this disease. I can't begin to tell you the things it has cost me starting with our families. Losing someone you love to this disease is horrible. I was there and watched my Mother die from Cancer and I am sure that there are many people who would put this disease at the bottom of their list. But as it is the one that has touched my life I feel that it is the most demeaning disease anyone can have. Grasping for words they no longer remember, seeing things that are not here, getting lost in their own home, waking up wondering where they are and searching for anything familiar, slowly so slowly losing everything they have learned in a lifetime. The frustration this brings causes them to strike out at you because you are the only thing they recognize. My husband to my knowledge has no children. He was married before and had a stepdaughter and my daughter was 10 when I married him 26 years ago. Imagine how I felt when he came up to me and told me that he had something to tell me. It seemed so important to him, he was in distress so we went to my bedroom to talk. He told me he had four girls, me thinking my daughter, two granddaughters and myself. He said no, he had had 4 daughters back in the fifties. Now he couldn't remember the women's names, he said they were all married and he said he only saw them once. Had I not known that my husband had been impotent since the accident that cut off his leg I would have reacted differently? As it was I was able to sit there and listen to him knowing this was an imaginary saga. Had known I had actually married someone who not only hadn't told me this but was so callous that these babies meant nothing to him but accidents with married women I would have been crushed. He remembers nothing about the conversation now.

So in all fairness I feel that you need to find another place to find your Joy. This newsletter deals in reality, it is a sacrifice that two women made a choice and commitment to do. I personally resent any criticism of them. Hey, you know what that delete button is for. Just don't say hurtful things to people who help so many thousands of people as we make our way through this disease called Alzheimer's. I think that they are wonderful, unselfish and caring. Jamie is now working full time, caring for her ill husband yet still takes the time to continue giving of herself to this newsletter. Dear Lady you are most certainly in the minority.

Most Sincerely,
NannyDean


From shorshadow@netscape.com

Thank you so very much for The Ribbon. My Mother has been recently diagnosed with Alzheimers' & my Father was the sole care giver. Over the Thanksgiving holiday, I helped my Dad move the both of them to Chicago. My older brother lives in Chicago & has recently retired. We had hoped that moving closer to my brother would be a good thing for my Mom. However, when they finally moved into an apartment, she kept asking when they could go home. When asked where that was, she said "New York, of course" (where they had lived 20 years earlier). Now she has been recently been placed into a Nursing Home. My Dad goes there daily to see her. Many days she just sits quietly, but then other days, she asks him when she can go home. My brother has seen her & is devastated by how her condition has gone down, in such a short time. My Dad is still exhausted & feels so very guilty about things that they should have done years ago, so that they would have been so much better off financially. In fact, the new Psychiatrist (they found in the Chicago area) when he first saw both of my parents, insisted that my Mother go directly into a Hospital so that - 1.) the many meds that had prescribed for her previously be monitored & changed; 2.) and that Dad get some much needed respite. Then later, in another visit, said that my Mother should not return to their apartment, as it would be too hard on her.

Thus this entire situation has been such a terrible strain for our entire family. I have gone to a local support group (for adult children with family members having Alzheimers') & have found it to be wonderful & so very supportive. Also receiving this newsletter has been so wonderful & helpful. I just wanted to take this opportunity to thank all of you who are involved in helping those others of us who have a family member with this terrible disease.

Again, thank you for your effort and time in helping families cope with this ordeal.

Sincerely,
Laurie S.


From sabia65@sbcglobal.net

I KNOW YOU DONT HERE VERY MUCH FROM ME BUT I LOOK FORWORD IN GETTING THE RIBBON EVERY MONTH THANK YOU FOR A VERY GOOD JOB I HAVE MY FATHER IN LAW THAT AS THESE PROBLEMS AND I AM A CARE GIVER I KNOW I GET TIRED BUT I JUST THINK THAT ONE DAY I CAN BE IN THEIER POSITION THANK YOU !!!

and a special hi and your doing a great job to drmom!!

Here is my new email to forword sabia65@sbcglobal.net

Juanita P


From SputneyWhere@aol.com

When I read about caretaker wearing a bracelet to identify them as caretaker reminded me of the time I was crossing the drive in front of the Walmart Store. My husband has Alzheimer's. At the time he walked a little slower than me. A van was stopped in the cross walk. I had walked behind it and he was following me. I heard a horn blow and saw that the driver was trying to let the van driver know I was behind her. The van was backing into me. The horn prevented me from possibly being seriously hurt of killed. My husband was in no immediate danger, but what would have happened to him if I had not been able to tell someone to care for him. He couldn't even tell someone his name. God as with us. He expects us to use our common sense and when we don't he steps in. I should have had my bracelet on. The bracelet has given me so much peace of mind. Encourage every care taker to use one and make sure their loved one has one too.


Hugs and Peace,

Jamie and Karen

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