It hits the fan.
As a caregiver, there are times when you have to act as a public information officer regarding the health and situation of your patient. Family, employer, and friends will all be hungry for the latest information on the health of someone they care about, and you will be the main source.
This does place a burden on you, especially when things are going south, and it is all you can do to keep an eye on the patient, and take care of her needs. What I found to be useful, as I traveled this road with Joanie, was email. Phone calls are important when you want to inform someone in a hurry, but you have to limit those to family, employer and a couple of friends who can then relay the information to others. Problem with phone calls, is they can take time, and if you were to call everyone who wants the information, you would be on the phone for hours.
Another thing you will find out, is that you only tell half of the story. I did that all of the time. The fact that people are interested in two main things. They want to know how the patient is doing at that time, and they want to know when they might be able to stop by and see her, or talk to her on the phone. The other dynamic is that a lot of people don’t want to hear the details. Details can be hard to understand, and they make some people uncomfortable.
The only person who cares about the details is the doctor who is taking care of your patient.
In Joanie’s case, it was Dr. M. Roy Thomas, the oncologist from Mid-Dakota Clinic who was overseeing the latest round of Joanie’s chemotherapy treatments.
I took a lot of notes detailing what was happening to Joanie when she was home after the treatments, and how things went south after the first chemotherapy treatment on March 14th.
An example of the difference between what I wrote in my emails to friends, and the notes I kept for the doctor show what I mean. I wrote about the difficulty she had with nausea after I got her home following the chemo. The email doesn’t even come close to telling the whole story about what she went through for those first 48 hours at home.
This is what one of the emails I sent on the day after we got her home:
“We got Joanie home on Wednesday morning after a long day on Tuesday. She handled the chemo really well, having only a couple of episodes when they were giving her the Ifosfamide. Other than that she did really well. The kept her in overnight, and we got her home the next morning. The rest of the day was uneventful, but the night was another story. She can’t sleep on her back due to the difficulty breathing so she spent most of the night on the couch. About 4 a.m. the nausea kicked in and she was in the bathroom. It hit again about 5 or so and I gave her a Kytril. She then slept until a little after 8 a.m. when it hit again. It hit again aoub 10:30 and again about 12:30 so it has been a rough day for her. It is a quarter after two this afternoon, and she has been resting comfortably since the last episode. I called her doctor this morning to fill him in on what has gone on, and he is prescribing another anti-nausea medicine for us to try.
That’s about the story from here right now. I will keep you advised on her progress. I’m hoping this nausea stuff will start going away.”
What follows are the notes I kept to share with Dr. Thomas:
“10 p.m. or so Joanie comes to bed, but can’t get comfortable due to the difficulty breathing. she couldn’t lay flat and get her breath. We propped up some pillows so she could half sit up and that was a bit better. The we moved her to the couch and she got comfortable and tried to go to sleep.
“4 a.m. or so, she is in the bathroom throwing up. Not much comes up. Then she feels a bit better and goes back to the couch.
“5 a.m. or so–She’s back in the bathroom throwing up, with not much coming out. Violent dry heaves. After she gets done she seems to feel better and I give her one Kytril for nausea. She heads back to the couch and does seem to get some sleep. I got up about a quarter past seven and she didn’t even stir. Then about 8:15 a.m. she’s back in the bathroom with the same results as the first 2 times. She feels better and laid down on the couch again. I returned from the clinic and the grocery store around 10:30 and she was sitting up, clearly distressed and nauseated.
“She got a nosebleed which wouldn’t stop right away and was flowing freely. then it was back to the bathroom where she was throwing up and what looked like some brackish bile was the result. She was also bleeding profusely from the nose at the same time. Then she seemed to feel better, and laid down again on the couch. I gave her another Kytril at about 10:45 a.m. Right now she is resting. Time 11:17 a.m.
“12:30 p.m. Thomas calls. Joanie is back in the bathroom again. Throws up, but not a lot comes out.
“1:50 p.m. It’s now 10 minutes to two in the afternoon and she is resting comfortably. Thomas is prescribing another anti-nausea medicine.
“2:30 p.m. She’s back in the bathroom again. Not throwing up yet, but knows it is coming. It did.
“I got a return call from the clinic, and Thomas had called in the prescription. I picked it up about 3:30 p.m., and use the first of it about ten minutes later. She went to the bathroom and cathed the Miami pouch and produced a good volume.
“I went to the store and picked up some cherry popsicles and a couple of bottles of Powerade.
“She ate one of the popsicles, and has been resting since.
“It is now 10 minutes to six and she hasn’t thrown up since the 2:30 episode, so maybe the nausea is abating. We’ll see.
“6:15 p.m. Joanie not feeling good. Feels like she might throw up again.
“6:30 p.m. She does.
“9:10 p.m. A bloody nose again. Throws up again.
“10:25 p.m. Throws up.
“11:00 p.m. Takes Percocet and Ambien.
“1:30 a.m. Felt sick but did not throw up.
“3:30 a.m. Threw up.
“6:20 a.m. Threw up.
“9:10 a.m. Threw up.
“I think that was about 12 times since 4:00 a.m. Thursday.”
So, you can see the difference between the two examples of information I tried to keep a handle on. The emails weren’t detailed at all, but they gave some idea of how rough a time Joanie had experienced, but the detailed notes were really for the doctor whenever we would see him next.
That was the information I took to Dr. Thomas that Friday morning, when I took Joanie to see him at the clinic.
By this time, Joane looked as beat up as I had seen her in a long time, and it was something we hadn’t seen when she took the same chemo in 2003. I think that’s what threw us for a loop. We had expected things would be the same, and she would get through it with a minimum of discomfort. It was not to be.
They did the blood work, and that was all okay, and then Thomas puts her in the hospital at least for overnight, and possibly longer, to deal with the nausea and perhaps to drain the plueral effusion that still hadn’t been done.
Joanie didn’t object to going in, she was in such distress, all she wanted right then was some relief from the waves of nausea, and a chance to get some sleep. Even though a hospital is probably the worst place there is to get any sleep, at least they would be able to monitor her and make sure she had everything she needed to deal with the nausea.
I had tried, and I could give her popsicles, but I couldn’t make the nausea go away. It was a frustrating time for me as a caregiver, and it hurt so much to see her suffer like she did, so I was relieved when Thomas said he was going to put her in the hospital.
Days like these can be the most difficult times you can experience as a caregiver, mainly because you can feel so helpless, but it is important you keep cool, and don’t hesitate to call the doctor’s office when you think you need to.