Long Night…. Who Cares for the Caregiver?

Dailysis Treatment #1 at DaVita is now in the history books. It was not at all what I expected that it would be. The center is located on the first floor of Raritan Bay Medical Center of Perth Amboy. It was a large room with lots of chairs (sort of recliners) with dialysis machines. It seems a bit cluttered, but I guess that is normal.

They make you weigh in when you get there, get your dialysis, and weigh in as you are ready to leave.  I met with the dietitian. She was VERY nice, and gave a lot of information about the diet that someone with kidney disease needs to follow. Basically a person with renal disease needs to watch sodium, phosphorus, and potassium intake. She gave pages of information, brochures, and websites that have all sorts of information. It was crazy! You could read her literature forever!

I was not allowed to stay with Mark while he was having his treatment. I sat in a waiting room. It had a TV, but the problem was that the station was on some Ghost Hunters show. I was the only one there, and I wanted to change the channel. There was no remote, and the TV was positioned too high for me to reach the channels. It was kind of boring, and it was very lonely. For 90% of the (over) four hours, I was alone. I wondered what was happening with Mark, and how he was dealing with the dialysis. I felt like I was missing out on important information about his care. No one really talks to the caregivers. I think we are pretty much on our own. I think I expected someone to give me an update about how he was doing. But that didn’t happen. It is funny how we have a perception of how we think things will be, and when they are not like how we think it is, we are disappointed, and we feel let down.

Oh, and we were supposed to go to the Center for 5:30 today. I decided to leave the office at 4:30 so we could get there, find the Center, and get registered. Mark called me at 3:00 and told me that his appointment time was changed to 4:00PM, and I had to leave work now. I was irritated because he should have consulted me before he agreed to change the appointment. I have been shuffling my work hours around his doctor appointments and test, and making up time to keep my weekly minimum. I willingly offered to go with Mark to his first few appointments at dialysis until he got accustomed to it, but it was wrong for him to change the appointment knowing that I was going to just have to leave the office immediately.

But it’s not about me, is it? It is all about him because he is the one with the End Stage Renal Disease. He is the one enduring the dialysis. He is the one with the graft in his arm. He is the one with the temporary catheter in his neck. But let me ask you, who cares for the caregiver?