Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Sonya: Surviving Daughter-in-law of Diffuse Scleroderma Patient

"In Loving Memory of CB"

Pansies for Sonya by Shelley Ensz This is in loving memory of CB. My mother-in-law was diagnosed about two years ago with diffuse scleroderma with CREST syndrome. It all started with a small patch of dark, hardened skin on her upper back. Concerned over the patch, she decided to see her physician, who referred her to a dermatologist, who referred her to a specialist, and so on and so forth.

After several months of referrals, she received her diagnosis. Initially, my mother-in-law was told that she would be fine as long as the disease didn't spread to her internal organs. She was told to avoid stress as stress accelerates the disease.

Last year, CB was forced to leave her job to go on disability. Since that time, I've watched her change from being a beautiful woman, full of life, into what seems like a one-hundred-year-old person with the inability to do anything for herself. This is especially difficult for her because she is the type of person who has always been very meticulous about her appearance. Her hair, nails, and clothes were always perfect. She enjoyed shopping as well as vacationing several times a year in Las Vegas.

I cannot believe that she is the same person. I have watched her health decline very rapidly in the last year. CB cannot feed herself, comb her hair, go to the bathroom, or even turn herself over in bed. She has lost so much weight that her skin is literally hanging like a pair of stockings that are four or five sizes too large.

Although CB and I haven't always been as close as I would have liked, it breaks my heart to see her this way. Her quality of life is zero. The really sad part is that many of our family members, ministers, and friends are telling her that she is going to get better, that a miracle is going to happen and she will be her old self again.

I think that we all need to give her permission to die. I believe CB is hanging on for everyone else. I think we should let her know that it is okay to die. I would rather relish the memory of her before this debilitating disease ravishes her body.

In October of 2000, doctors told CB that she had a few days, weeks, or a month to live. She is still with us. Two weeks ago, the hospice stated that if she lived until the end of this month, it would be a miracle. I think scleroderma is, in many ways, worse than cancer. This disease totally strips a person of their independence and dignity. I never thought that I would, literally, have to hand CB a drink of water or aid with toileting.

~ Update ~

My mother-in-law's health has further deteriorated. She has been taken off all medication with the exception of pain meds. She no longer eats or communicates. Every now and then, when she hears a familiar voice, she opens her eyes. Although her eyes are open, I don't think she sees anyone. As I lie on the bed beside her and gently rub her hand, I find myself not recognizing her. This is not my mother-in-law.

I struggle to remember her beauty before scleroderma and to remember her last words before she stopped communicating. The image of the beautiful woman, once engraved in my memory, is slowly being replaced with the image of this very sick person whose life hangs by a mere thread. This deeply disturbs me because it is not the image I want to remain once she is gone. The nurse says that death is near. I look at her and wonder how much sicker a person can possibly get before death occurs. I can't describe the feeling I get seeing her so helpless and ill. I long to hear her speak- just once more. I want to tell her that I love her and will see her again one day.

One of CB's sisters came home from New York yesterday and told CB not to worry about the family. That was her way of saying it's okay to leave us. She had the courage to say what the rest of the family has not been able to say. We all love her and, if given a choice, would want her to be her old self again, but we all realize that's not going to happen. None of us wants to continue seeing her this way.

~ Update ~

On May 7, 2001, scleroderma took CB from us. My husband, a sister, and both of CB's parents were by her side. I am thankful that CB no longer suffers and that she is with God, but words cannot describe how much I miss her. My heart is broken.

My father-in-law says that he told CB to do what she had to and that he would be okay. He says approximately twenty minutes later, she died. I guess she needed to know that the family would be okay before she could leave us. My husband says CB died peacefully. I saw her shortly after she died. As she died at home, she was a vision of loveliness! All of the blemishes left her face, and her skin was soft and radiant. She didn't look as if she was ever ill, so I like to think that CB now has eternal health and peace.

To Contact the Author

New email address needed 07-18-06 SLE
Old Email Prefix: sbethea
Story posted 4-23-01
Story update posted 5-7-01
Story update posted 5-14-01
Story edited VH1: JTD 8-21-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Caregiver's Resources
Caregiver's Stories
CREST Syndrome
Diffuse Scleroderma
Scleroderma Survivor Stories
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Sonya D: Surviving Daughter of Systemic Scleroderma Patien

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.