Family Life
Kidney disease is a family affair. Everyone in the family feels its impact. Often family members need to readjust who does what chores and take on different responsibilities as roles change. Learning about kidney disease is important as is making the dialysis diet and treatment time a part of their lives.
Family members usually appreciate meeting other families who are coping well with kidney disease in their families. Support from others is very important and decreases the feelings of being out there all alone.
Children who have a parent with kidney disease need to be told about the illness at an age-appropriate level. The dialysis staff can assist with this. Children may have a lot of fear and anger about what is happening to their families. Understanding the illness can help them deal with it better.
Resources For Families
Atricles
A Sister's Story
A candid view of an older child coping with the effects of her younger brother's kidney failure.
Communicating As A Couple by Kathi J. Niccum, Ed.D.
This article originally apperared on iKidney.com in August 2000.
Spouse: A Wife's View Of Dialysis by Susan Faber
A chapter from the Kidney Transplant/Dialysis Association Handbook . Download the complete book at The KT/DA Web site .
A series of articles were created by the Family Sub-committee of The Renal Network's Patient Leadership Committee focusing on living with chronic kidney disease from the family/caregiver's point of view. Each article appeared initially as a feature in the Renal Outreach , The Renal Network's patient newsletter.
What About Us — The Family by Sonia Juhasz (Renal Outreach, Summer 2002)
I'm Not The Patient! So Why Do I Feel So Bad? by Fonda Setters, MSW (Renal Outreach, Fall 2002)
Role Reversal by Guy Tibbels (Renal Outreach, Summer 2003)
Diet – What Me Worry? by Janet Schueller, M.S., R.D., L.D. (Renal Outreach, Winter 2004)
Booklets
Encouragement: Bridging the Barriers (For Patients and Their Families)
This 44-page booklet defines renal rehabilitation in terms that patients and families can understand. Several patient profiles highlight the reality of rehabilitation. The booklet also includes answers to common questions about kidney disease, tips for traveling, and a brief section on the role of family members.
http://www.lifeoptions.org/catalog/pdfs/booklets/encouragement.pdf
Books
To read about and order the following books follow the links to the Web sites listed below.
Dialysis: An Unanticipated Journey by David L. Axtmann
A dialysis patient for over 32 years shares his journey.
Chronically Happy: Joyful Living In Spite Of Chronic Illness by Lori Hartwell
The Chronic Illness Experience: Embracing the Imperfect Life by Cheri Register (living with MS)
Last updated on: February 22, 2008