One of my patients is a 25 y/o male patient blind due to diabetes. He is dependent on his mother to do manual exchanges, and I am currently training the family on the cycler as his mother has her hands full. His sister is also on hemodialysis. I would very much like to try to teach him to either do manuals or cycler. I also would really like to get him vocational rehab or set him on the right path to learn how to possibly get some skills and perhaps a career. He became blind right out of high school. His career goal was to become a truck driver. It is a pretty heartbreaking situation. He is a bright guy and very open to suggestions however I am stumped on how to proceed. Our social worker has promised to look into resources but because she covers two units and has a high census she is very busy-I am sure you know the ratio of patients to one social worker. Anyway Beth & Dora you are so resourceful I am hoping you can give me some direction - or anyone else active on this site. We live in the Baltimore MD area. Right now all his time is spent sleeping and listening to TV, while living with two women in the home - father absent. Any help would be appreciated. Thanks!
I am so glad that you’re looking at this patient as someone with the potential to do well and not pigeon-holing him as someone who is destined to be dependent and pitied. You can’t imagine how much I hate to see young adults living at home with family and spending their time sleeping and listening to TV.
State vocational rehabilitation agencies have a history of successfully rehabilitating people who are blind. In Maryland, this agency is called the Division of Rehabilitation Services. It has a section called the Office for Blindness and Vision Services that is devoted to helping those who are blind or visually impaired through assistive technology, training, and job placement. You can find out more about what they do and how to contact them at this link.
I know that the University of Iowa used to train blind and visually impaired patients to do CAPD because a nurse I worked with years ago in Kansas learned how to train one of our blind patients using an assistive device to help make connections. I found an article by the editor of the Voice of the Diabetic who is blind. He wrote about Dialysis Clinic, Inc. in Columbia, Missouri that has trained people who are blind to do CAPD. Here’s that article. If possible, it would probably give him back a sense of control and accomplishment if he could be trained to do his own dialysis so he wouldn’t have to live with and depend on his family to do his PD. Perhaps the DORS program personnel could modify the cycler so he could do CCPD if that’s what he’d prefer.
I don’t know the source of this person’s income, but if he is receiving either SSI or SSDI and he goes to work, he can use Social Security work incentives to avoid losing his disability income right away or perhaps ever. Hopefully your social worker knows about these, but just in case she doesn’t, here’s a link to the Red Book that describes the work incentives. There are special rules for people who are blind.
Incidentally, I had a blind patient years ago who was in her 20’s doing in-center dialysis and wanted to do CAPD. She told the training nurse to tell her what she needed to learn how to do and she’d tell the nurse how to teach her. The nurse seeing her motivation contacted the University of Iowa and went there to see how they taught their blind patients. The training nurse taught this patient to do her CAPD exchanges independently using an assist device to make sterile connections. She chose not to let dialysis interfere with her life. She competed as a blind archer in world championships, entered karaoke contests, did all her own household chores, worked, and raised a son as a single parent. She had received VR services for the blind. She lived near family, but they allowed her to be as independent as she wanted. She received a transplant, married, and was doing well the last time I spoke with her. Needless to say, she was quite inspirational.
She was able to do all she did because that nurse gave her the chance to do what she believed she could do and what she did quite successfully until her transplant. I suspect you could help your patient have the same success.