This week was scheduled to be very busy, with four appointments set even before the week started. At one of DH's doctor's appointments, a CT scan on Friday was added to the schedule. I am currently having to use motorized carts or wheelchairs for transport if going any distance at all, which complicates things somewhat. Our local hospital complex is huge, so we planned to use a wheelchair. DH said that it is easy for him to push me, but it's not easy for me to roll it and steer myself. Our local hospital has valet parking, so we used that, and DH pushed me in a wheelchair. We anticipated about an hour for the test, which was set for 1:00. So far, so good.
I waited—and waited—for DH to come out of the test. Finally a nurse came and told me that DH had started having problems, and he had been taken to the emergency room. She (thankfully!) wheeled me down there, so I could be with him. (You know how you hear about somebody getting medical news, and you can see their mouth moving and hear sounds, but you can't make any sense out of it? This was one of those times.)
(Side note - Valet parking (which is in the back of the lot, far away from the entrance) closed at 4:30. I knew we would be there long after that, so while DH waited to see a doctor, I walked (pushing the wheelchair) up to the check-in for parking and asked if they could please move the car near the entrance, in a handicapped spot (I have a handicapped plate) so I could get to the car when we were finished. Instead, the very kind man who was on duty pushed my chair all the way back to the emergency room, then went and got the car and parked it in a handicapped spot right by the emergency room, and then brought me the key. I do not know what I would have done without that help. He was an absolute angel of mercy. I did fine dealing with all the medical people, but when he was so kind, that’s when I cried.)
Long story into reasonably short story: five and a half hours with DH in the emergency room (with nothing to eat or drink for either of us since breakfast, until we got home after 7:30 that night). New prescription and referrals to two more doctors, who will probably need to run more tests, including an MRI, asap. Thankfully, since DH had completed the CT scan, the emergency room doctor had access to that.
We did make decisions ahead of time to not have extraordinary medical intervention for some things, but this occasion did not seem to match our decision. DH had been having bleeding—a lot of bleeding—from lesions in the bladder. This was the second time that clots had been so large that he couldn't go to the bathroom. When the clots passed, it was like passing a kidney stone. In other words, agonizing pain. If DH had suffered a heart attack and was unconscious, I could have made those other decisions. But when somebody is in agony, it doesn't seem like the time to "let nature take its course".
In the emergency room phrases stand out: CT showed a mass on the pancreas, and lesions might indicate metastases from the pancreas. Or they might not. Any further incidents like this one warrant another trip to the emergency room. Keep an eye on him with the new prescription, because it could make him unsteady on his feet, or even make him pass out. (DH is already unsteady on his feet sometimes, and suffered another mini stroke about a month ago.)
On May 30 I wrote about DH's family doctor scaring me when he told me that the nursing home wouldn't manage his many different medical problems. I think we're about to the point where a hospital might have trouble managing them. But I'm supposed to manage his care, and make sure he's seen by everybody who can help him, and remember to ask all the right questions, and keep track of everything each doctor says and does.
Anyway, just when you think you know where you are as a caregiver….
p.s. The emergency room nurse was amazed when she started asking me about DH's meds, and I pulled out a typed sheet listing everything he takes, including what he takes it for. It also listed his allergies and other emergency information somebody might need. When I handed her the sheet, I was so rattled I was barely able to remember our address and phone number. I couldn't have listed all his meds to save my life—or his.
<<You know how you hear about somebody getting medical news, and you can see their mouth moving and hear sounds, but you can't make any sense out of it?>> Yes, I remember when the research neuro (she was one of four neuro specialists my husband had- also a clinical neuro, a neuropsychologist and a neuropsychiatrist), showed me his last OP MRI and very patiently explained why his decline would hasten. My husband was in the room and she showed me her note: "Pt exhibits profound apathy." I went on autopilot for at least a few hours until I could get us home, him sleeping, and have my own private meltdown.
<<But I'm supposed to manage his care, and make sure he's seen by everybody who can help him, and remember to ask all the right questions, and keep track of everything each doctor says and does.>> I also remember the kindness of a doc during a hospitalization who said he could not believe how I was managing my husband at home and by myself. Perhaps I should not have needed his validation but I appreciated it so much. He was also preparing me for realizing that "at home" was not in the future.
Take good care, pamper yourself in some way if you can. I know it's hard not to be scared, especially when the answers are just more questions.