Dealing with Grief When You Have ESRD

By Jill Messinger

The loss of a loved one can be more complicated when you have end-stage renal disease (ESRD). Coping with the loss of my father has been the most difficult emotional and physical challenge I’ve ever faced.

When my father was losing his battle with cancer, I had a hard time caring for myself with my usual discipline. I had trouble complying with my renal diet, staying on dialysis for the full treatment time (4 hours), remembering to take my medications on time, and focusing on recommendations from nurses, doctors, and social workers. All of these necessary and once effortless actions became a weekly struggle.

I should have shared my feelings of pain and fear with my renal social worker, so she could help me face what was happening to my father. If I had, maybe I would have paid more attention to my special health problems and participated more in my self-care.

My siblings went through their own grief process, but I realized that the intensity and duration of their grief differed from mine. It seemed as if they were able to “move on” with their daily routine and get back to their lives with less difficulty than I could. Although my siblings and I miss our dad terribly, we feel a certain sense of relief that he is no longer suffering and finally at peace. We will always carry our memories of him in our hearts.

I’ve learned a lot from the grief process, and I’d like to share come coping tips from the perspective of someone with a chronic illness.

Remember, there are no grief deadlines! Don’t pressure yourself to get over your loved one’s death because it can lead to unnecessary stress on an already stressed body. Remind yourself of things you did to add quality to your loved one’s life. For example, I know that my positive attitude and determination to live a productive life, despite having renal failure, inspired my dad and gave him strength to face his battle with cancer. Don’t let your feelings of sadness interfere with all that you’ve accomplished to stabilize your health. Do whatever is necessary to take care of yourself and your body during this difficult time. Follow your doctor’s orders—after all, that’s what your loved one would have wanted. Share your feelings with others. It helps to get that “poison” out of your system. People are willing to listen and, whether you know it or not, you need to talk about your loss. Find ways to keep the memories of your loved one alive. Think of all the things you used to do together and the fun you had. Look at old pictures, letters, and cards when you need to. If you need advice that you feel only he or she could have given, ask yourself what your loved one would have said to you. You can even write a letter to that person and save it in a special place, where you can read it from time to time. These are just a few ways to keep your loved one close. While these tips worked for me, there are other ways of coping that you can learn about through reading and talking with others. And finally, don’t hesitate to seek professional advice and support if you feel the need.

Permission received to post the following information:

Name: Jill Messinger
Cause of renal failure: Hydronephrosis or reflux (urine backing up into the kidneys over the years)
Time on dialysis: 12 years
Treatments used: In-center hemodialysis (1986-1987; 1990-present), transplant (1987-1989)
Work/other activities: Telemarketing, Consumer Committee Member of the Renal Network of the Upper Midwest, writing for renal newsletters, reading, exercising, singing
Date: April 2000