Advice for Caretakers on Advocating for their Loved Ones

Request For Advice

I asked for advice from the private Facebook Group LIVING!! on dialysis on best practices for caretakers to be an advocate for their loved ones and this are some of the response.

Feedback from Facebook

Susan S:

"My sister goes with me for doctors appts and all procedures. Brain fog keeps me from remembering details. Her input is priceless."

‍Michael G:

"This is tough because we always are trying to advocate for our warriors but we get looked at as over exaggerating spouses now eventually we are seen as someone that can come to the table and discuss care. Our last hospital visit was very tough because you have a patient that has over 20yrs of dialysis and me I feel I can go toe to toe with anyone when it comes to Christina’s care. Now after numerous conversations I am looked at like I actually know what I am talking about. You have to be firm and strong but soft enough to know that it is a calculated moving back and forth to get what you need. Also one of the things I do for Christina is I will investigate and ask lots and lots of questions and find answers before I even go into an appointment. That way I can ask how can we do this safety we don’t take no for an answer don’t tell us we can’t tell us how we can."

Wanda K:

"I am fortunate in that our dialysis nurse and myself have a good relationship. I tell her what needs to be adjusted for treatment. She realizes that I'm with him everyday during treatment and trusts me. I guess my biggest concern with my husband and any other dialysis patient is that certain things are acceptable because "they are dialysis patients and that's to be expected ". Not acceptable!! Let's better their quality of life and not "accept " things just because it's common."

Michael G:

"Another one is keeping very actuate documentation so when you do go in to a meeting you have all facts and events that have happened or tried. A lot of the things we have tried is something no one has tried, if it doesn’t work we cross that off and then ok let’s try the next thing."

Carolyn D:

"I acknowledge when my son is tired and switch my schedule accordingly! I go on his energy (he’s 29 special needs) I appreciate him daily."

Melanie H:

"Go to all the appts that you can. Take notes & ask all the questions. I attended a living donor workshop that was available in our area and also got connected with a local non profit -Kidney Health Alliance of Ky for resources & support. There’s also a support group in Louisville Ky called Mulligans that helps advocate for living kidney donors."

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References

Facebook Group LIVING!! on dialysis

‍About the Author

Rich Foreman brings over 30 years of technology leadership to his role of CEO and Co-Founder of KidneySoft.  As founding CTO, Rich led the team that developed the CordicoShield / CordicoFire Wellness App. Cordico was honored with the Sacramento Innovation Award in 2021. After achieving a 7 digit ARR, Cordico was acquired by Lexipol in 2020. Rich has a BS in Industrial Engineering from the University of Washington, an MPA from Troy State University and was an officer in the U.S. Navy. Rich co-authored his book, "Tap into the Mobile Economy." Rich's blog was listed in Top 20 Marketing Mobile Blogs of 2014. He has been featured on KCRA3, NEWS10, 1170 Tech AM PowerDrive, Business Radio Money 105.5, SiliconIndia, the Sacramento Business Journal, and the Sacramento Bee. Rich is also the Founding Director of the Sacramento Chapter of Startup Grind and served a term as Utility Commissioner for the City of Folsom. Rich is a regular contributor to TechWire.net and StartupSac. Rich was the Co-founder of Apptology which was named Small Business of the Year in 2014 by the Sacramento Asian Pacific Chamber. He was also the Founding Chief Technology Officer at Cordico. Cordico was acquired by Lexipol in 2020.  Rich also served 4 years as a Naval Officer in the Civil Engineer Corps.

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Patient Education Disclaimer

This material is for informational purposes only. It does not replace the advice or counsel of a doctor or health care professional. KidneyLuv makes every effort to provide information that is accurate and timely, but makes no guarantee in this regard. You should consult with, and rely only on the advice of, your physician or health care professional.