First Days in Rehab - Denise's Perspective

Today's update is by a guest blogger, none other than my mom, Denise! It's easier to leave what she sent me in her words. I've edited it just a little, but I'm told I sound like my mom so often that I doubt anyone but her will know where I've chimed in or not! Without further ado, here's Mom:

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So, the "stupid" call about a follow-up appointment for Dad that I got yesterday was real. I had sarcastically asked the woman calling if the hospital was going to provide an ambulance for Dad to make that appointment, but apparently his rehab facility provides transportation to follow-up visits. It would have been nice if someone had told me that earlier, or even that he would be returning to the hospital for any follow-up visits. In fact, I'm not sure I received any discharge info. Our "patient advocate" (PA; I'm aware that's not what PA typically means in this context) who was so wonderful to us at the hospital has been alerted. I woke up early this morning—a door closed in my dream and the noise woke me up. My mind was instantly on the need to fix the follow-up appointment situation since in my ignorance I cancelled it, so I just got up and got started on my day. 

I also let the PA know that a Friday 5:20pm discharge does not work well for the patient. Pain meds and OT/PT were not followed to best help Dad's recovery due to staff fill-ins on weekends and miscommunication. For one, the script for his pain medication was an odd dosage to the rehab staff and took over 12 hours to find and then fill. He was only taking Tylenol for the first 12-24 hours in rehab, and Sunday night that caught up to him in a big way. And, as mentioned, I was not given adequate information about what our next steps would be. Important details like follow up appointments. The weekend was confusing and frustrating, and then we basically started over yesterday with the regular staff.

There are some positives. Our dear friend Robin is one of the OT team members. She has gone out of her way to care for Dad, in spite of putting the back of the brace on upside down on their first effort yesterday. Dad laughed about it, so it wasn't as awful as it sounds. It is now labeled (top/bottom) so that won't happen again. She stayed late last night to rearrange his room for his next therapy steps. They want him up in the chair for meals, with learning to slide to a wheelchair as his next goal. She posted signs in his room with several things PT/OT workers need to know (when the brace has to be on, that he needs to be repositioned regularly and several other reminders). That was reassuring. It would have been nice to have had those things in place right away, but we move forward. 

Dad is happy with the staff, so that's a positive thing. The social worker is a wonderful man—I suspect he'll become a friend. 

Back to the cancelled appointment—I have a call in to the doctor's office to try to reschedule the appointment I cancelled. I'd also like to know who called me. That's another unclear process that did not serve us well. 

This reminds me of applying for college. I remember telling Lizi, "You need a degree to know how to get a degree." You need to understand the medical process to make it work. And how are you supposed to do that having never been through something like this before? As Nathanael said when Lizi was trying to figure out grad school or something and it was very confusing, "What do the stupid people do?" Here I am, a capable, intelligent, educated woman, completely frazzled by a system I don't understand and one that isn't being made clear to me. Even if it's my traumatized brain that's affecting my ability to understand things, medical personnel should anticipate that and work better with me. It should be their job to make things clear.

If I find out that someone forgot to give me instructions on such things, they're going to know about it. If they don't routinely provide it, they need to. I don't need to feel stupid just because I don't already understand the process. My question is: is that on the hospital or rehab? Hopefully our PA will know, and be able to fix it. There are other questions swirling in my brain when I wake up before dawn. What other information am I missing? Did this happen because they rushed us out the door so quickly? I thought there was supposed to be an exit interview—didn't happen. And although I'm in attack mode now, I'll try to be understanding when I get an explanation. "Of course," I can hear my kids say. They're used to me being the one trying to point out the other side's possible perspective.

It just bothers me that at a time when things are already mixed up, this didn't help.