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The Ribbon - Care for Caregivers
Volume 7, Issue 20
October 19, 2003

www.TheRibbon.com

1104A Murfreesboro Pike
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Nashville, TN 37217-1918

I'm having a hard time trying to put words to paper this time. I'm so filled with so much emotion. I'm so very sad that all my GOF friends had to finally say goodbye. Words cannot begin to explain how important it is to me to have everyone come to town, share stories, give big bear hugs that say so much, participate in the Alzheimer's Association's Memory Walk, remember our loved ones, eat, and just plain old have fun. To be able to sit down with people that you've talked to for years and be able to look in their eyes and hold their hands, is an experience like no other. To be able to cry your eyes out or slap your knee in laughter and know that everyone understands exactly how you feel is something I don't get very often. I hope the love will continue to hold me for another two years and hope the tears of the goodbyes will abate soon.

I want to take a little space here to say that our final total for the walk was $3,815.40. I think that is an amazing total considering this is people from all over the country coming together for a cause. The Mid-South Chapter of The Alzheimer's Association has really been terrific to us and we'd like to thank Tom, Nicole, and Paula for all the help and encouragement they give us. We are always welcomed with open arms and hugs and we are made to feel like we matter.

We did not win the Team Spirit Award. We did get honorable mention though. I can't remember the name of the team that won but they had on green cheerleader outfits and did cheers the whole time. To me their youngest member looked to be about 5 or 6 years old. They beat us fair and square. I want to mention also that the sweetest Girl Scout troop was there and they also won honorable mention. There were young people all over the field this year, and to me that is huge! To see people from little babies to, as my son says, "upper-aged" people, all gathered together for one cause is a miracle in itself.

I want to ask everyone for their thoughts and prayers for Kelly Sutton, the media chairperson for the Memory Walk. Her mother was diagnoised with breast cancer the week before the Walk and she had to leave immediately to catch a plane to go home.

Karen will be telling you about the award we did win and Linda will fill you in on details about the GOF weekend.

Hugs,

Jamie


Great News!!!

Memantine wins FDA drug approval

Memantine has been approved and should be available by January 2004. This drug has been used overseas for about 10 years with good success for those in the later stages of Alzheimers. Some doctors are prescribing it in addition to the meds now available.

To use an example I read: A lady last year did not even realize anything about Thanksgiving, after being on Memantine for a while, she is looking forward to Thanksgiving and will even be able to assist in doing some of the cooking.

As with all medications, this will work with some and not with others...sad to say. Ask your doctor now to see if he can get samples or if he will provide you with a prescription for your loved one as soon as it becomes available.

CNN.com - New Alzheimer's drug wins FDA approval - Oct. 18, 2003


Nashville Thoughts

Another wonderful Gathering of Friends has passed into the memory books. Although it was the third one, it was still new and exciting, changed only by the new faces and new stories.

This year Jane's Angels received an award for the most money collected by a group our size. It's a lovely award with "Jane's Angels" etched on it. It will be housed in Nashville next to the "Caregiver of the Year" award given to Jamie in June. It's wonderful!

Again we must give our heartfelt thanks to our hostess for the weekend, Jamie. As always she knocks herself out making us all feel welcome and providing us with a full schedule of fun. Kudos also go out to Linda, who organized the "goody bags" providing all of us with mementos to carry home. She and Mary hosted "Gathering Place Central" where we met to embark on various outings and to talk, laugh and cry into the wee hours.

Kevin and his family, mom Debbie and dad Danny, brought gifts for all. They worked hard on our GOF journals, which we all signed. I read mine on the plane home to Florida, thankful for each lovely person I met that weekend.

Whether it was a new face or someone I had been blessed enough to meet at previous GOF's, each one opened my heart once again.

That is what this weekend is about....opening your heart. As caregivers we have to step forward daily to do what is necessary for our loved ones...being strong, being firm, standing up for the rights and the dignity of our loved ones. This weekend is about us, an affirmation and validation of what we do and feel. And we all come away feeling stronger and refreshed.

For those of you who were unable to attend, we missed you! And you were thought of.

I know that Oct. 2005 seems like a long way off but time has a way of flying by. Put it in your memory book now so that the next GOF is one that you can attend. You will spend a wonderful weekend with wonderful people.

Karen
The Ribbon


In Passing: Those We Must Remember

I got a phone call the other day from Vickie known to us as vgrgory@msn.com. She called to inform me that her deal Mother-in-law, Polly had passed away on October 3rd. She said all the family was able to be there and the grandchildren were able to sing "Jesus Loves Me" to her before she passed.

Vickie is doing ok and trying to get life back to normal after 6 years of caregiving.

Please join us in sending your condolences and prayers to Vickie.


We Stand Corrected!!

Leg massages could dislodge blood clots

From Vintagegirl@mail.com

HI!

I just got done reading your article on visiting in adult and nursing homes, and overall it was very informative. However, it said "Give your loved one a backrub or gentle arm and leg massage. These can relieve discomfort caused by immobility and lack of exercise." Give leg massages is something we were always taught not to do, because there may be blood clots that could be dislodged, and travel to the heart or lungs. Maybe the article could be revised.....just a suggestion for safety!

Sincerely,
Jennifer


Stages

by Mary C. Fridley RN, BC

I have found that the caregiver journey consists of four stages: shock, awareness, acceptance, and healing. The arduous journey starts at the time of diagnosis and continues through the death of a loved one - and beyond. In the first stage diagnosis and prognosis monopolize every thought. Searching for a more accurate or hopeful diagnosis, you spend countless hours going from one doctor appointment to the next. Denial is paramount and you expectantly wait to awaken from a bad dream. The second stage finds you wrestling with how to tell family and friends and responding to their endless questions. You not only worry about the future, but also about what tomorrow will bring. Sleep is elusive and fatigue is a constant companion. In your awareness, thoughts of "when will this nightmare end" or just walking away from it all are common. You wonder what preventive measures could have been taken and pray each day for a miracle. In the third stage you slide into robotic motion. It becomes crystal clear that a miracle is not forthcoming and accept that life will never be the same again. You become emotionally drained and numb while making end of life decisions about continuing treatment, artificial feeding and hydration, and knowing when it's time to let go. The fourth stage brings a dichotomy of feelings: feelings of sadness but relief for the end of your loved one's suffering - and yours. This latter feeling is held to be socially unacceptable and is laden with guilt. It's only natural that a person feels relief when a burden is lifted but it goes against social norm to think of caring for a loved one as a burden. Healing begins by recognizing that these feelings are normal and by granting self-permission to take solace in grief.

Grieving starts at the outset of the journey and does not end with the death of your loved one. You grieved continually for the loss of companionship, relationship, and life, as you knew it. The relief that's felt with death is coupled with the reality that the person is gone forever. You may be surprise that your grief is so intense believing you should be happy that the person's suffering is over. But grieving is cathartic -- it's a purging of long pent up anguish, anger, and fear.

Though the healing stage starts with renewed grief, it is also a time of recovery. The challenge here is for you to reorganize your life and embrace the future. It's also a time of self-discovery. In this stage you move from grieving into a period of mourning. Here thoughts of good times and bad are reviewed and a feeling of sad peacefulness settles in like a comforting blanket. It can be difficult to emerge from this period because you feel vulnerable yet secure as people have few expectations of you and make few demands. But slowly you start to accept invitations like going to lunch or a movie with good friends and then maybe to the beach for a weekend. Suddenly, you realize that the sun is shining and relish in the warmth on your face; you remember how good it feels to laugh; and like a butterfly tentatively unfolding her wings, you reemerge into the world.

Throughout the care giving experience you discovered how remarkable you really are - you discovered the ability to find strength when you said you had no more left; you found humor in tragedy and in the absurd; and you discovered the fortitude to keep it all together. These qualities of strength, humor, and fortitude will help you fill the void that the death of your loved one brings.

Being a caregiver is not only a role but also an identity that suddenly is gone leaving you wondering who you are. Take this time of healing to rediscover your self. Make a list of all the things that used to bring you joy and satisfaction. Did you enjoy playing tennis or golf, or bowling? Did you like to read, go to the theater, or take long walks? Who were, or are, those friends that made you laugh? Who can you call to share sweet memories? Who can you count on to lift your spirits when you're down? Every week promise your self that you will venture out and revisit one of these things - read a best seller or take a tennis lesson. Make weekly phone calls to friends to keep your social support system strong. Sometimes you need to talk to others who have lost a loved one and joining a grief support group can be very helpful. It is also beneficial to continue to go to your caregiver's support group. You will need their support and encouragement and they need yours. Gradually, you will wean your self away.

Most important of all - like your self and love your self. You have done a remarkable job that, given the choice, most people would never undertake. Seek the joys in life and allow each day to unfold with hopeful expectation.

~ 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.


GoF 2003 Remembered

Oh my gosh! I can't believe it is over! Our third Gathering of Friends (GOF) is now in the record books! The anticipation, the planning, the laughter and the fun have now all turned into wonderful memories that have me still crying.I know everyone tried to tell me that the leaving and it being over isn't something to be sad about, but gosh darn it, I don't have all those cute little faces to see each day and bodies to hug! Other than my sadness of the goodbyes, what a wonderful weekend it was.

Consensus of the folks attending GOF '03 -- the Memorial Service for our 49 loved ones who have passed away in the last two years was the most moving part of the weekend. I am so glad we took time out of the weekend to gather at the family burial sites of Jamie's family. Music pieces were played, thoughts shared, and names of the departed loved ones read and a bell was rang after each of the 49 names. We finished the service by releasing balloons in honor of our loved ones here and past. Mary's mom was in a hurry and her balloon flew away to lead the crowd. Jane's balloon was released and got caught in a tree, so we took it that Jane decided she needed to watch us just a bit longer to make sure we were ok. It did release from the tree without bursting right before the other balloons were released. And then one lone balloon hovered above us as if to say, I'll follow them all to make sure they find their way.

I asked our GOF'ers what their favorite part of the weekend was; other than the memorial service. I'd like to share with you what they said:

Jamie: Was when Linda was doing the Pay It Forward thing with the tickets. We lost her for about an hour and Mary and I got to thinking she might have given her ticket away and was sitting on the curb crying because she was missing all the fun. Then dang it, if we didn't see her on the main floor front, in the center taking pictures. Darned if she doesn't have a way of working things!

Kevin: Uncle Bud's -- just relaxing, talking and sharing great food.

Peg: The walk -- I felt like I was doing something for my AD family and I really liked the food at Uncle Bud's -- but not the beans!

Sharon: Hanging out in the room with all of us; seeing everyone at the airport when we got there -- all the hugging!

Debbie: The first night -- just being goofy and watching the cigar smoking; Peg coming back in her heels and nitie!

Linda (Jamie's sister): Meeting all my new friends and giving away the tickets for the Opry.

Karen: Uncle Bud's and "Gathering Place Central".

Kim: When she found the horse for Mary.

James: Linda acting like a drill sergeant, giving all my friends orders to get the cars done when we got to the hotel.

Loraine: Seeing Linda ride the corner on Mary's stick pony and all the love and hugs at the airport.

Debbie (Pampmom): Vince Gill and Linda maneuvering to get the close up pictures!

Danny: Meeting all the new people and having fun picking on Linda!

Mary: When "Calling All Angels" was played at the memorial service.

Brenda: Making the three-way call to my husband and his father so I could share Porter Wagoner with David's dad.

Peggie (everyone's newly adopted Aunt Dixie): Friday, Saturday, Sunday, Monday; the reading of the names at the memorial service, hugs shared and the love shown to me.

As for me...wow, to pinpoint one thing, I just can't do. So you are just going to have to endure: I was thrilled to watch Peg and Lavern (who had never chatted before Wednesday night) plan their travels online in the chatroom. It was being back in Nashville with my sister Jamie and all of the fun of planning a fun filled weekend for everyone. I was so touched as Jamie and Karen hugged at the airport; their sisterhood reunited. There was the picture of Leeza and her mom; the love and caring shown in that picture so touched my heart. I found a new sister in Peg, who has the most gorgeous eyes I have ever seen. I got to make amends with my sister Sharon and enjoy her friend Debbie that I met on a trip to OK a year ago. I got to see Brenda let her hair down and get into the Friday night fun. I got to share Debbie's (Pampmom) husband's bootie and had the fun of teasing her about it.

I so enjoyed Danny's gentleness as he pushed Aunt Dixie on the swings. I was so touched when Kevin shared his surprise with Jamie of the map of the world where TheRibbon touched people -- he teared up in reaction to Jamie's tears. My dear Mary, who always has my heart -- with her, it was watching as she enjoyed all the jokes about horses and all the laughter that generated for everyone else -- how that helped their hearts. Aunt Dixie's southern charm was a delight -- I now have someone new who I wanna be like when I grow up! I was thrilled at Linda, Kim and Loraine's thoughtfulness to Mary, Jamie, and me. It was so touching to have James (Jamie's son) and five of his teenage friends join us at the walk. I was touched that Jamie's son Stephen and wife Angie, and her daughter, Kim, and her husband Bubba knew their mother needed their support at the walk. And how, because of Crystal, Jamie's nurse friend, we were able to make so many folks at the walk "honorary Jane's Angels" by giving them beads. It was especially touching sitting at Uncle Bud's and listening to all my friends tell me how they were touched by my efforts to make the weekend special.

But if you really, really, really make me pinpoint one thing...it would have to be the honor of being able to do the Pay It Forward with our extra Grand Ole Opry tickets. Jamie touched a group of college girls' hearts who just took the chance to come and try to get tickets only to find out they were sold out. They were thrilled when they received the tickets. We traded tickets with a group of three folks so they could all sit together. We gave a couple, unsuspectingly walking along, a set. I had the fun of giving four tickets out; they were all mismatched. There was a couple who would love to have taken the tickets, but they wanted to sit together. I pulled my ticket out of my pocket; put it with the other ticket in our section and off they went -- to celebrate, come to find out, their 10th wedding anniversary. The last two were given to two single guys who were thrilled to get the tickets.

It was so much fun to watch their faces, then to have them want to pay for the tickets, then to finally get the fact all they had to do was three acts of kindness later on, and then to get the hugs and see the smiles as they went off to find their seats. And come to find out in talking with Jamie later, that by sharing my floor ticket with Peg, I made a life long dream of hers come true when I took her downstairs to sit in my seat to enjoy part of the show! That has to be the most special part for me!

There's just one more thing...Kevin, how many days to GOF '05? Thanks everyone for the memories!

Hugs,

Linda

The Gathering Place


Before I Forget

The PWiD's Perspective

From lynn.jackson@telus.net

Congratulations to Elaine Wright!

She has just finished climbing to the summit of Mt. Kilimanjaro and is the first person with Alzheimer's Disease to do this!

Read all about it at the following link:

http://alzresource.bc.ca/new_site/kili2003_team1.php#10-06-03

I just listened to a radio broadcast and heard Elaine talk from the Horombo Hut where she described the beauty of Africa that was all around her. What an accomplishment! We are so proud of you Elaine and thank you for doing this incredible feat in the name of all of us who have the various dementias.

Lynn

DASNI: Dementia Advocacy and Support Network International


Trauma of Diagnosis

Reading LeFay's post reminded me of what I went through before my diagnosis with AD in 1998. Long ago I made a selection from my journal entries from that time. I shared it with some of you, but didn't put a link to it on my homepage--it seemed too incoherent and embarrassing. Back then I couldn't conceive of being a dementia survivor, let alone being a co-founder of an international group of autonomous and competent PWiDs (persons with dementia).

Anyway, here is The Road to Alzheimer's -- excerpts from my 1997 and 1998 journals

-- Morris
morrisff@aol.com


Links

Wander No More: Alzheimer's Bracelet Means Quick Rescue

It may be a faint chirping noise, but it's a sign of hope. A tiny transmitter, a few searchers, and missing patients with alzheimers or dementia can be found in just minutes.

A bracelet can be worn 24 hours a day. It's very light, and constantly chirps a radio beacon.

Click the link for more info.


Email Bag

From jleehawaii@aol.com

Congratulations to all of you for the well deserved awards and especially to Linda whom I have had the wonderful experience of being gifted with her in person. There are not words to express this girls heart and talk about organization. Would love to have her for a neighbor to keep me organized. Second thought it would be such a job she could do nothing else and I would not think of taking her away from her journey she is undertaking. Aloha Jeanne


Remember to set your clocks back 1 hour next Saturday night! Enjoy your Autumn weather!

Happy Halloween!
Hugs and Peace,
Jamie and Karen

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