My Role As A Dialysis Care Partner

care giver

My Role as a Dialysis Care Partner

Hi, my name is Bill and I am Sue’s care partner, she’s my wife by the way. She has been on dialysis since June 2012 and we have experienced dialysis at our clinic, at home with peritoneal dialysis and at home with hemodialysis. I have been a part of each and every one of her dialysis sessions and will continue to be until the end; when ever and what ever that may be.

The role I played as a care partner changed significantly as we moved from in-clinic dialysis, to peritoneal dialysis at home and then to hemodialysis at home.  When Sue was doing hemodialysis at our clinic, my role was primarily emotional support, transportation provider, and tracking what she ate and drank. I also took over all the household chores.

Sue started peritoneal dialysis and my role changed. I no longer drove her to the clinic three times a week, but I was still doing everything else and now I also took care of the dialysis process. I hung bags of dialysate, made connections, dumped the waste, cleaned the machine, dealt with boxes of dialysate, and helped secure her catheter. The hardest part for me was seeing the plastic tube sticking out of her belly and my stress ratcheted up a notch; but it was all worth it because she felt better. We found that home dialysis was a big step up from in-clinic dialysis.

We started home hemodialysis in June of 2014 and my role changed again; this time drastically. My participation in the dialysis process became much more intense as I now had to insert the needles in her arm, make the connections to the dialysis machine, and worst of all, respond to the various alarms. It was nerve racking at best and terrifying at the worst. My stress level shot up at least two more notches.

It has improved over the years we have been doing this, but there are still times when I feel stressed beyond my limit. In addition to dealing with the dialysis process, the dialysis machines require a lot of attention, extra effort, and time.  I still have all the daily chores to do, but nutrition tracking became easier.

Sue feels the best she has since she started dialysis and has learned what and how much she needs to eat and what she should not eat, to keep her nutrition on track. Notice I said nutrition, not labs. Good nutrition and the correct dialysis prescription equals good labs; every time.

Being A Care Partner Is Hard.

care giver

You are facing a significant life style change, a lot of hard work, a lot of stress and you have to work hard not to fall into the darkness yourself. At least I found it so. During the worst of times, I found myself reaching over to touch Sue in the middle of the night just to be sure she was alive. Dialysis is much less stressful now that Sue’s health has greatly improved and that she feels so much better.

The remainder of this blog offers my perception, of what a dialysis care partner is, based on my own experience.

A care partner can make a world of difference to a person who has just found themselves facing kidney failure and dialysis. My wife recently told me that she would have probably given up if I wasn’t there and willing to help her, not because she wanted to give up, but because she couldn’t do or think for herself.

What Does A Care Partner Do?

One of the roles of a care partner is to advocate for their partner, especially in the early stages of treatment when their ability to think is at its lowest ebb. Of course everyone is different and some need more help than others. I found within myself the need to learn as much about kidney disease and treatment as I could.

When she first started on dialysis, Sue’s ability to think and express herself was nearly gone. As her care partner (and husband), I realized that I needed to be with her during her doctor visits, so the doctor would get a better picture of how her treatment was affecting her. He often turned to me for clarification or verification of her comments when it was obvious that her thoughts were muddled. It was important for me to be there.

As we learned more about treatment, we encouraged the doctor to change Sue’s prescription based on her lab results, our attention to her diet and the way she felt. We were lucky; her doctor listened and Sue was on her way to feeling better. It was a long arduous journey, but we got there.

Sue now has her dialysis and her nutrition under control and she feels great; if you were to meet her for the first time, you would not realize that she suffers from end stage kidney disease. I mention this just so you know that it is possible to have a reasonable quality of life while on dialysis and a care partner can be a large part of making this possible.

Another role of a care partner is emotional support. I suspect that everyone who has been told that they have or are nearing end stage kidney disease is devastated. Being told that you will have to be on dialysis for the rest of your life, have a kidney transplant or die is enough to bring just about anyone to their knees. Let’s face it, this is life threatening news and if you care about this person, they need your support, badly.

Must Do’s

When you first reach end stage renal failure, there are two things everyone is told they must do. The first is dialysis. If you are lucky, you will be told about the choices you have and can choose the best way for your circumstances. If not, then you will do dialysis in a clinic.

The second thing everyone is told to do is watch their diet; “keep your potassium, phosphorous and sodium a low as you can and limit how much you drink.”  I hope you know more about this than I did when we started dialysis, because I knew very little and the three handouts we got from the dietitian provided very little useful information.

Our experience has been that diet is nearly as important as dialysis, especially if the prescription has not been adjusted to fit the patient’s particular needs. In my wife’s case, her labs were consistently good, but she felt terrible after dialysis and most of the following day.

Her prescription was wrong but we were able to consistently keep her labs good with diet; her doctor at the time was not very willing to change her prescription. We finally showed him a printout that listed her daily nutrition totals over a period of a couple of weeks. This proved to him that what she ate was not the problem; it also proved that we were paying close attention. We convinced him to try a prescription change and then another and another until we arrived at where we are today; twenty-two liters, five times a week instead of fifty liters, three times a week.

Example Nutrient List for Care Partner

Get Free Nutrient List to Improve Your Diet!

This is where a care partner can actually contribute to improving the quality of life of their partner. Learn everything you can about nutrition and the dialysis process. Plan the meals, monitor what they eat and drink, write it down; don’t let them cheat. Keep fluid intake low, remember, excess fluid has to be removed by dialysis and less is better. The more closely you manage their diet, the more likely your partner’s quality of life will improve; yours too for that matter.

For help managing nutrition, click on here.

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