Volume 5, Issue 16
August 6, 2001
www.TheRibbon.com
1104A Murfreesboro Pike PMB 114
Nashville, TN 37217-1918

Gathering of Friends
Nashville, Tennessee
Oct. 6 - 8

The plans for the 2nd Gathering of Friends is coming together. Folks are making plane and hotel reservations. E-mails and IM's are flying through cyberspace!

We ask that you advise us by September 1st if you are attending. We have received a number of e-mails from folks who cannot attend and they should know that we will miss them.

A reminder, the hotel information is as follows:

Friday. October 5th, will be arrival day.  Those who are flying into Nashville airport should send an e-mail with GOF Flight Plans in subject line, to Linda (aka PhotoLJT@aol.com) with flight arrival and departure information so that she can make arrangements for pickup. If you plan to rent a car, include that info too. Anyone who is driving to Nashville and would be willing to "taxi" those without vehicles, please pass that information to Linda also.

Although we are providing hotel information, know that Nashville has a wide variety of excellent hotels. At the first GoF, in 1999, most of us who came from out of town stayed at the same hotel. They had a nice lobby and we would congregate there as well as wander back and forth between rooms. It gave us the opportunity to talk and share and get to know each other, personally. It was wonderful! But you are free to make your own choice of hotel.

We hope that this will be a "Respite" weekend for all. We plan to spend a lot of time just being together, sharing. Any input any of you may have as to something special you would like to do....please let us know.

--The Ribbon Staff

A Very Different Love Story
by Carole Mulliken

I am Jennifer, age 23. Last year, I was lost, confused, and very suicidal. I had been diagnosed with dementia and my doctor had told me that not much could be done for me. I was told that by the time I was 30, I would not be able to recognize family and friends, and I would no longer be able to lead a normal life. I gave up my large, profitable and highly respected dog-training business, and I broke up an engagement. I had been sentenced to a living death, and I was nearly ready to accept my fate.

I had been engaged to a loving and understanding man, but I needed more than that. I needed people who knew what it was like to put the clothes in the washing machine and forget them for days because I forgot how to work the dryer. I needed people who could relate to how I felt when I came home from the park with my beloved sheltie and forgot she was in a crate in the car, so she ended up staying there all night. Because I forgot.

I had been given a death sentence from my doctor and then all my friends left me. They could not deal with my forgetting their names and other shared experiences. A living death would last a very long, very lonely time. I began to search on-line for someone who understood and would be my friend. I searched and searched.

Then I found Mary on-line. Mary was knowledgeable and very caring, and she had dementia, too. Through Mary I met other, older friends with dementia. They taught me a lot. Mina taught me that I could still work, provided I understood my limitations. Laura told me to teach my dog how to lead me home, and I did.

Others told me to stand up to my neurologist, who made me feel stupid and confused because he would ignore me and only talk to Josh, my fiancee. I told him I wanted a doctor who would talk to me! My on-line friends suggested I ask the neuro-psychologist, whom I really liked, for a referral to a different neurologist. My fiancee says I walked out of my old doctor's office with my head held high and a sense of independence he had not seen in me before. Now I have a neurologist who sees me as a person and not a case. He talks to me.

On-line I now have friends who understand, and I have a new job I like. I work where people know not to rush me when I forget how to do things. They let me alone, and I figure things out for myself. Josh and I learned how to use a Palm Pilot to keep track of my "To Do" lists, and we stay in touch during the workdays with it. I realized that there was hope for me after all.

I planned my own wedding and was married last month. The celebration was wonderful, but not without complications. We planned to drive to Montana afterward to visit our new friends at their annual meeting, but all the excitement of the wedding exhausted me. I had some seizures, and we had to postpone our trip until next year's meeting in Honolulu. Then we will celebrate our first anniversary with my new best friends.

After a year going through getting a diagnosis and another getting depressed, I established a new, slower life. I have to say this: it is not what I ever planned for my life, but it is one I can live with.

Josh says, "I get frustrated, but I also realize that Jennifer adds so much to my life that I would never in a million years be able to imagine life without her."

Jennifer's new best friends are the members of DASN, the Dementia Advocacy and Support Network. Mary (Lockhart) hosts its daily chats on-line. In the next few issues, the stories of other DASN members' lives will be told. DASN can be found at www.DASN.org.

In Passing: Those We Must Remember

From Vjsr38
dated 7/22/01

Dear Jamie & Karen,

I am writing to tell you that my mother went to be with the Lord Friday, July 20, 2001. She had a massive stroke and went into a coma and never responded anymore. She had a mild stroke on Thursday but still could talk and know people, during Thursday night she had a massive stroke and never woke up any more. I am thankful that she didn't have to lay and suffer for a long period of time.

She had been diagnosed with dementia in 1998. Her health, mentally and physically declined from that time until the end. She had fallen several different times since then braking her shoulder, fracturing her back and braking her hip. Although she was in and out of the hospital several times during the past three years she never got to the place that she didn't know me. I am an only child.

Thank you so much for sending me The Ribbon, it was so much help to me. It was a comfort to know that I wasn't the only caregiver of a loved one that had this terrible disease. I hope you will continue to email me The Ribbon.

Jamie and Karen, thank you for caring!!!
Love, Jeanne

Thank You

We were listed as coming in as #4 for July at the Top Alzheimer's/Caregivers Sites. Keep voting and please be sure to check out the other sites as well. There is a wealth of information we can all use there.

Top Alzheimer's/Caregiving Sites, brought to you by A Year to Remember
http://new.topsiteslists.com/bestsites/bpsibley/topsites.html

Book Nook

I thought you might be interested in my book, Nursing Homes: The Family's Journey, just published last month by Johns Hopkins University Press.

In brief, Nursing Homes is a complete guide to the practical and emotional issues faced by families as they search for and deal with nursing homes and care. It starts with how to talk to someone about care, and follows them through admission, life in the home, and death and dying.In between the chapters I wrote are stories written by caregivers themselves from across North America on what they went through and how they coped..

The book has two goals: one to teach families their role; and two, to teach students of gerontology, social work, and nursing what their clients go through and how to see the issues through their clients' eyes.

The book has been quite well received by caregivers, family members. academics.It was also endorsed enthusiastically by people such as Dr. William Thomas ( The Eden Alternative), Peter Belsen ( past president of the National Association of Professional Geriatric Care Managers), and Ila Swan of the Association for the Protection of the Elderly. It was also reviewed by Booklist.

It is available at bookstores, on line booksellers, and direct from the publisher, at 800-537-5487. ISBN: 0-8018-6625-1.

Yours truly,
Peter Silin, MSW, RSW
604-874-7764

Editor's note: Here's the link right to the book:

Nursing Homes: The Family's Journey - The Ribbon Bookstore
www.theribbon.com/go/book.php?asin=0801866251

Links

From HOST iVH Dizzy

I was given another great web site I am sharing with you all about medical blood test etc. It explaines what they are for and what they do. I hope some of you will find it to be valuable help. :)

From HOST iVH Dizzy

This web page was given to me by a friend. It's a program for people with no Prescription medication coverage. Thought I would pass it along in the hopes it could help someone.

Accessing Free Medication - The Patient's Advocate
www.themedicineprogram.com

Email Bag

From Bev2Davis

Hello. This is my first reponse to the ribbon and this is in regards to the living wills. If a person here does not have a DNR (do not resusitate order) signed and numbered and registered, all efforts will be made to resusitate, and this goes on and on, regardless of the wills. Unless your doctor is within reach and can help you, having the order at the nursing homes or wherever the patient is the only way to go. So, for an update on our lives. Jim fell this past winter and broke his hip and was given anti-psychotic drugs at the hospital. At the transitional care center I had to sign and agree to have the doctor prescribe haldol and then brought him home as soon as I remodeled my basement to accomodate him. He can not walk and they did not give him any therapy and at this time he spits out all his solid food and will only drink liquid. I have a very good and caring person that cares for Jim when school is in session and since this is summer, I am catching up with all the to-dos around the house. I had two ramps built but he does not want to ever get into another wheelchair. After the fact I found out that he fell more than 8 times and once when I got there early in the afternoon he was on the floor with the chair on top of him. Yes, he was strapped to the chair or bed 24/7 except for the times that I visited him and released him from the strap(S). He still fell from the bed and wheelchair. They told me (at the home) that I did not have to visit everyday since they got paid to give him the best care. It is true if you are comatose. Dean knows what I have gone through these past years and our doctor and I agree that I know what is best for Jim. Most of the people from my support group have their loved ones at home. They feed and bathe them just like I do with Jim. I really want to go to Tn. and will start to make arrangements, with school and caregiver.

From me.allen@juno.com

Hello,

I just wanted to reply to Mina's letter. I like the term "care partner", too. I was a care partner for my mom who had Alzheimer's, and I received so much from that relationship.

My mom died in January, but I have such wonderful memories of our days together, first in her home, our home, then the nursing home, during her journey through Alzheimer's. She added another dimention to my life and to my love for her.

As Mina says, we aren't the only givers and those with Alzheimer's the takers. They have so much to give us..so much we can learn. In my mom's case, I'd take my grandchildren, her great grandchildren, to visit her frequently. They enjoyed and learned from the visit and she enjoyed their visits, even when she no longer knew who we were.

At first I didn't understand it was a blessing to be Mother's care partner. But I learned, as the years evolved, that I had been blessed indeed.

Mary Emma Allen
Author - "When We Become the Parent to Our Parents"
http://homepage.fcgnetworks.net./jetent/mea
mailto:me.allen@juno.com

Until next time, we wish for you

Hugs and Peace,
Jamie and Karen

URL: http://www.theribbon.com/issues/vol5issue16.php
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