As I’ve written on the other blog, we’ve made it through the first rounds of chemo and are at home. My son spent eight days in the hospital, and I spent quite a bit of time there alone with him. My wife and I had to trade off. We live an hour from the hospital, and since both our sons are autistic, one of us had to be home with the older son. We had no time to prepare. We went from what was supposed to be a quick follow up appointment to being admitted to the hospital within a couple hours and started chemotherapy within 24 hours.
I used a lot of my ADHD coping techniques throughout the stay. I kept a notebook with me at all times to write things down as they happened. I brought sticky notes with me, and kept a wall of sticky notes for important things to remember or to tell my wife when we traded off. Just like at home, she left notes for me as well.
I did have to explain more than once that I have ADHD. There were so many doctors, nurses, and other staff that I could not remember names, of course, and had to explain to some people about my problems with name recall. My son’s room had a whiteboard and they wrote in who was on staff each shift, which was very helpful. Also, everyone wore name tags, which would be helpful in the rest of my life.
I also could not turn off my observational/figuring things out mindset which sometimes proved to be an asset. I noticed which nurses were more patient-advocate types and which were follow-the-rules type and was able to work that knowledge when I needed it. For example, one of the follow-the-rules nurses asked me to tell the procedure room to change out the needle in my son’s port because it had been a week (a “port” is a device under the skin in his chest leading to a blood vessel that makes it easy to start an I.V. and it’s a lot easier to deal with than a wrist I.V. ). It did not occur to her, however, that since he was going home the day, that the procedure would be pointless. Also, even though he had the port going, the hospital wanted to keep an unconnected wrist I.V. installed for three days because of an upcoming CT scan (they could not inject the “contrast” into the port). That would have meant having his hand all taped up and having to flush it every eight hours.
I asked that since he had the port installed and that they would be giving him the sedative before the CT that they could take out this I.V. now and just put in another after he was sedated. Since we were dealing with upstairs/downstairs bureaucracy, that hadn’t occurred to anyone.
I also thought that since there’s a computer in every room, there should be a screen for the parents to look at that showed the medication, procedures, and vital signs. He was not eating for a time and losing weight, and I kept having to ask about his daily weight. I also lost track of all the medications he was taking, including the chemo and the medication to control the side effects, and they gave us a nice summary sheet at the end that I wished I had access to as it was going on. The discharge nurse thought that was a great idea.
The Ritalin helped me a lot. I knew when the doctors were coming, so I was sure to be properly dosed for them. Also, it made it much easier overall to advocate for my son. Although the hospital was excellent, there were still better nurses than others. Most of the nurses piled up their work at night in as few room visits as possible so as not to keep waking us up. One nurse, though, came in several times on her night shift and turned on some of the room lights each time. After that, I made sure to talk to each nurse to make sure that didn’t happen again. I did not get a chance to talk to the resident, though, to tell her you’ve got to at least give a person thirty seconds to wake up before you start speaking at length about the forthcoming day.
Also, more than one person thought that if I was writing things down I wasn’t listening. They kept saying “I’ll give this to you so you don’t have to write it down.” I had to explain that writing things down helps me process and focus on what’s happening. I also thought it was silly to withhold the paper until after the conversation. Why not just give me the papers first, so I could write on those? I think they held myth about eye contact and paying attention. People assume that everyone processes and learns information the same way. I am reminded of this when I encounter people who do not “get” charts and graphs. I love a good visual model for complex information, but for a lot of people that’s just hieroglyphics.
Now that we’re home and through the first stage, the next stage for me is dealing with the rest of my life, which was hard enough before. This experience does help my focus in some ways. I cut back on some projects. Things have to be done on a schedule, which helps. There’s a daily meds schedule on the cabinet in the kitchen. This semester ends today and my grades are due on Monday. It’s going to be a challenge to meet that deadline, and deal with all the work piled up in all areas of my life as well. Another positive result, though, is that I learned to ask for help more. I’ve always had the mindset that I have to do things on my own, and that asking for help is some kind of weakness or failure. It seems silly to write it, but that’s my brain at work.