I would like some ideas on how to support my stepdaughter and son-in-law as they deal with their son,my grandson havein pkd. We will know more in the fall if my grandson will need surgery or something else for this disease.
What you’re doing now…asking questions and seeking information is a start in helping your stepdaughter, her husband, and son. Listening to their concerns and encouraging them to separate fact from fiction is also important. As you learn new things, share what you learn with them. If you haven’t heard of the PKD Foundation, its website is www.pkdcure.org. The PKD Foundation has books and other printed material to help patients and families understand and live with the diagnosis of PKD. They also have a conference for professionals and people with PKD.
The Life Options Rehabilitation Program published a booklet for family members of people on dialysis that includes general information about living with a chronic disease that might help you and your family. The booklet is called “New Life, New Hope.” You can find this booklet on the Life Options website (www.lifeoptions.org) under free materials.