The Elephant in the Noisy Room

Hello, my friend "Joe" is in a band with my friend "Dave". They have known each other a long time, and really enjoy playing music together. Every week, their band meets and practices at Joe's house, which he shares with his wife, "Honey".

Joe recently told some of his close friends that he is going to start dialysis soon. According to Dave, "he just had surgery to stick a plastic tube in his stomach". I'm guessing that means he's going to be receiving some form of Peritoneal Dialysis.

I've been noticing that Joe is starting to look weak, lose weight, and seems fatigued. Every time I'm there, he asks a medical question allowed. He's a pretty quiet guy. They played several shows recently, and I can tell it's taking a toll. I've tried to inform some of the bandmates about how serious this issue is, but no one wants to sit down and talk about it. I know it's an uncomfortable situation, but dialysis is very, very serious. Dave says things like, "he's fine" "his wife can do it" "it's only 3 times a week" "it's his band, too, his choice!"

I reached out to Honey, and told her my primary concern was the health and wellbeing of her husband AS WELL AS herself. She is his primary caregiver and support system. She was so grateful I reached out to her. Does anyone have some other sort of suggestions about how I can help get the band to meet up, sit down, and talk about what's going on, what to do, how we can help support them both? I don't think they understand the other band members fully grasp the gravity of the situation, the toll it's taking on Honey, Joe's quiet, giving nature, the potential consequences of only whispering about it behind their backs, ect.

I'm doing my best with some stubborn, quiet, older men. I constantly remind them that his health should be their main priority right now, and to not forget to check on Honey. I'm putting together a pamphlet of information to give to the bandmates about CKD, End Stage Renal Failure, and Dialysis. I'm reaching out to Honey - who is very overwhelmed and stressed right now. Does anyone else have any other suggestions?

[cs65 NKF Ambassador]

Hi Just a friend!

You're doing the right thing reaching out to Honey and giving her support, Joe's friends are probably in denial about how serious Joe's condition is, but they will see it for themselves and hopefully start to ask questions of Joe and Honey. It is up to them how much they want to share. I bet his bandmates are scared and trying to cope by ignoring the situation as long as they can. If they're older it can bring up feelings of their own mortality. All you can do is continue to be a friend and I thank you for caring!

[Hidden in reply to cs65]

Thank you so much for your encouragement. I've spent hours upon hours online, researching, printing out LOTS of paper, and am trying to compile it into something Honey and Joe can go over, as well as a separate document, to give to the band members. I am worried about caregiver burnout for Honey, as well as Joe's health. I don't want to overwhelm them with information, but also don't want to leave them uninformed. I really appreciate your message back! Wish me luck - I was clearly tired when I wrote the post!

[cs65 NKF Ambassador in reply to Hidden]

By the way, the National Kidney Foundation has plenty of pamphlets on kidney disease, types of treatments, etc. Joe can get those from his nephrologist's office. That will be a great source of info for them. Perhaps there might be a support group for caregivers that the office or dialysis social worker can connect them to. I go to a hemodialysis center and we have a team that cares for us, including the nephrologist, nurses, technicians, unit assistants, social worker and dietitian. There are also nurses assigned to train and provide support to peritoneal dialysis patients and their families. Rest assured, your friend will be well cared for.

[Gotthecall_123]

I believe your in the wright place to get some useful advice I was on dialyses for 7 years and had very littel suppor or help! I wish I knew about sites like this🙏Good luck and prayers for Dave🙏

Dave