Editor’s Note: This is part 2 of a 3-part caregiver story, submitted to us by Joan Foster, who was a caregiver for her husband Charles’ Chronic Kidney Disease (CKD). To read part 1, please click here.
The second day we were totally on our own. Ok, I did have a cheat sheet which I kept directly in front of me every step of the way! Everything in place on the IV pole and heparin injected in the dialysate bag hung neatly on the pole, Charles’ exit site catheter/tubing sterilized, we began the “hook up.” I say “we” because I made Charles promise to watch everything I did because I was so afraid of messing up and I wouldn’t hurt him for anything in the world. He talked me through each step and together we did not rush a bit. You may remember that he had the “dwell” in overnight, so the very first step was to drain out that “effluent.” We discovered that having Charles lay down on the bed was much more comfortable for him to do the home dialysis since we do not have a comfy reclining vinyl chair like at the clinic. All set, and assuring he was beginning to drain, observing the empty drain bag on the lap pad on the floor, I sat down in the nearby chair to prepare the daily documentation sheet for the entire 2nd day. We kept tabs on the time and started wondering why the clock was showing a longer period of time for the DRAIN. In total, that drain took 61 minutes! Say what? How could that be? The longest drain ever has only been 35 minutes, with most drains only taking 12 to 20 minutes. “Wiggle a little,” I told Charles“Let’s see if that helps any.” Forty minutes and not much happening, so I said, “Let’s stand up, Charles! Maybe that will help push it along.” Making sure his catheter is ok, Charles stands very carefully because he is 6’ 2” tall after all, and we certainly don’t want to yank accidentally on his catheter. Charles sits back down and I check everything again, over and over . . . no crimps, no air bubbles, catheter clip is open all the way. There’s no fibrin clog, dial on the setting is pointing to “drain.” Suddenly I notice one of those anxiety-producing sweats and said to Charles, “Oh, Lord, this is draining me! I mean literally . . . my 5’ 4” frame is awash in sweat! No, I am not just perspiring. No, I am not glistening! Yes, I am a lady and despite the delicate vernacular of some, my pores are draining sweat, trickling down everywhere with gravity’s help!” Finally, I weighed the effluent bag and it was right at 2000 milliliters. YAY! Now for the “fill!” The dial setting was moved to “fill” and off we went together on this filling and fulfilling adventure, hoping the fill time would come in a lot shorter. And it did! 32 minutes, to be exact!
Finally, with this exchange complete, we look at each other with wondering in our eyes and both of us raise our hands up in the “I don’t understand it” mode. Charles made a beeline to the bathroom to void, as fortunately he is still able to do that some. While sitting there, he says, “I had to pee really bad for a while. D0 you think that could’ve had anything to do with it taking so long to drain?” As I pass by the bathroom door, headed to the second bathroom, I replied, “I had the urge to poop around 40 minutes ago but I got over it. Do you think that could have possibly had anything to do with it?” Both bathrooms occupied, we both roared with laughter! Now some folks may not think any of this funny at all, but for that moment the anxiety left us both, and we laughed until tears ran down our cheeks. Seriously though, I did ask Charles if he had passed a BM that day, to which he replied, “Not yet.” In his usual laid back way, he calmly answered, “No big deal!” I stop laughing at that point and said, “Well, you better get that system moving, buddy!” More of the dialysis training popped vividly back in my mind . . . yes, constipation can affect both the drain and the fill times in home dialysis and even the drain volume. Momentarily, I recall us eating dinner out the night before and how we had made sure that Charles had eaten plenty of protein for that meal. I remarked, “Your system was so happy getting all that protein last night, that must have been why your drain took so long this morning . . . your body didn’t want to give any of it up!” More laughter erupted from both of us. And from that time on, the two of us vowed to keep the dialysis humor going!
On the tenth day of home dialysis, I had progressed to sitting on the floor next to Charles’ bed as he dialyzed. I had become quite proficient in recording his drains and fills and the volume/weight of the effluent in the manual drain bags. Speaking of weighing his drain bags, that 10th morning, I stood up from where I was seated on the floor documenting and suddenly felt a sure amount of dizziness. I thought maybe I had gotten up too fast and was having an orthostatic blood pressure dip. I pushed on through it, though, and all of a sudden, I wondered why everything immediately in front of me looked so strange. I asked Charles “Do I look funny to you? I mean do I look like I’m experiencing dizziness and like I’m getting ready to fall?” Charles stared at me and said, “You look ok to me.” “But I feel like I’m going downward.” Charles then added, “Really, you look fine, but the IV pole has dropped down and is sitting much lower and that might be why you feel that downward sensation.” I thought he was joking with me as he is quite the jokester. I looked again and sure enough, he was serious. The IV pole had slid all the way down and not only did I realize my dizzy-headed feeling, but also why I felt so much shorter! When I had gone to weigh the drain bag full of his effluent, the tightener ring around the pole had loosened enough and with the weight of the drain bag, the pole slid completely down. But, it all happened so quickly and with my dizziness, I did not realize what had happened. Charles was still filling in this exchange, so we needed to keep everything the way it was. I felt so stupid but quickly turned that feeling into a song, as I often do when things come to mind. “Dizzy, I’m so dizzy, my head is spinning . . .” My husband laughed and that only spurred me on. So, I broke out into “Short people got no reason . . .” I’m so short, I didn’t even realize that the IV Pole had lowered down a couple of inches shorter than I am. Once realized, I had to laugh out loud about that one!
Interestingly, music became a real attribute to overseeing my husband’s dialysis. Another time, when he actually started on the overnight Cycler, we had everything set up to begin, and as we heard the machine create its noises that it had clicked in for the drain, the theme of “The Lone Ranger” came into my mind and immediately out of my vocals, “Hi ho, Silver and away!” Of course, that theme song is actually about the horse, Silver, which brought me to “Camptown Races,” which we both began singing, with our added, “And they’re off” intro. “All the livelong night” was inserted for the overnight Cycler dialysis exchanges, but to the same tune. Then, from horseracing to street racing with fast cars, because we both love the Beach Boys . . . “Fun, Fun, Fun” . . . “And we’ll have fun, fun, fun ‘til Daddy takes the T-Bird away!”
Too, when the priming step takes place when using the cycler, Charles would say “the train is in the station” , when he saw the tubing wiggling and the dialysate coming up to the organizer and into the blue catheter to which he connects when all is ready. I have even sung “Folsom Prison Blues” by Johnny Cash and also “Chattanooga Choo.” When C has aseptically connected to the dialysis tubing, I would ask him if he were all hooked up.
About the Author:“Counting our ‘courting’ year and marriage, we were together for close to 23 years. He began his decline Christmas night, December 25, 2020 when he had his first heart attack, while we were visiting my oldest son and his wife and family in Georgia. I became his full-time caregiver and care partner that evening and remained in that place until his death on June 23, 2025.” – Joan
