On October 28, 2012, less than 36 hours after mom had been discharged (too soon in my opinion) , she was back in the hospital. Declaring mom had gone from no symptoms to full blown dementia in less than 2 days without even considering side effects from recent medication changes, (again, in my opinion) could have been a fatal mistake.
"Mistakes happen", was the only response.
"I know mistakes happen", I had made a big one. For the third time I explained the mix up in the dosage on the new medication that I hadn't noticed before I had given her the increased dose. I didn't know if the prescription had been written wrong or if the pharmacy had filled it incorrectly, but I KNEW I had given her an "overdose". Evidently "overdose" was the wrong thing to say.
They didn't see it as an overdose and seemed to take exception to me even suggesting such a thing, although I still don't know why. I was not placing blame, I was trying to give them (what I thought) was important information. I thought it might help to determine the cause of moms current state. Obviously, they didn't need or or want my input. In fact, I think I offended them. Uh-oh.
The glimpse of sincerity I thought I might have witnessed earlier was replaced with a very condescending attitude. I was quickly reminded of their "vast experience" and "superb reputation". It was also made very clear that there had been no overdose. It was a "mistake" and they did not think the triple dose had anything to do with the current problem. "Dementia is hard on the whole family", I was being told. My gut was telling me something different.
I know mistakes happen, so do accidents. This particular "mistake" (regardless of whose fault it was), had been an "accident" (I didn't think it was on purpose), which resulted in an "overdose" and was causing "dementia like" symptoms (I was almost certain). Why won't they listen?
To fix a mistake, we must first acknowledge a mistake has been made. Maybe if we learned from our mistakes, we could avoid a few accidents. To learn, one must listen.
They hadn't listened to us when we told them mom was "not acting right" soon after the prescribed dose of Neurontin had been started.
They were not listening to us now when we were telling them we believed the "overdose" was why she was confused, we didn't believe it was dementia, we weren't convinced she was ready for Hospice. If the prescribed dose had altered her mental and physical health, I felt sure that 3 times the prescribed dose could result in an "overdose" and cause the current symptoms.
"Mistakes do happen", I was reminded again. "Yes, they do", it was clear that nothing was going to be done for mom until I conceded on this one, "let's not make another one."
Even if it was dementia, she was in incredible pain and needed something NOW! They would "see what they could do". We waited, and waited.
Maybe I wasn't explaining myself in a way that was understandable. Either that or they still weren't listening! She needed help NOW. I had to remind myself to breathe - before I told them what I thought about their lack of humanity.
"If you can't or won't help her", I seethed when the doctor finally returned, "the least you can do is get her some place that will at least try". The least they can do is what I've come to expect.
I was again reminded of what a "great" facility they were, how "skilled" their staff was, how "wonderful" (and expensive) their technology was......blah, blah, blah. I was thinking they must have traded any compassion they might have ever had for all that fancy equipment.
"Yet with all of that you can't figure out what the problem is?", I might have said a bit more, maybe I was a bit loud and quite possibly I sounded a little irrational. "Maybe you could take a few hints from the people who have been with her 24/7 and KNOW her", I was just getting on a roll about their failure to listen and their lack of compassion when the x-ray and blood work came back.
"Your mother has pneumonia", I was told by a very nice doctor, who was clearly pleased with the "quick" diagnosis. "Again?", I asked, "This is the second or third time in just a few months she's had pneumonia." I wanted to know if they had any idea what the underlying cause was. I thought maybe this was my chance to get mom a referral to a local Pulmonary specialist. It was pretty clear we weren't going to make the long distant appointments scheduled for her the following day. Since I hadn't had any luck getting a referral from her PC, I figured it was worth a shot.
Any referral would "have to come from her primary care provider", they explained. The pneumonia was "probably" not because of her already confirmed lung problems. It was "most likely caused by aspiration", we were told. (hhhmmm, I wonder when that happened - Maybe when she took an OVERDOSE!) How did they KNOW it wasn't something more. I believed she had pneumonia, but she had a host of other issues too. Lost in thought about my lack of trust of these people, I was missing the rest of what the doctor was saying.
"She'll need.........", They can't be serious!, "........when", Are they serious? "......home....". FOCUS "......antibiotic" I hadn't heard half of what they said, but I couldn't believe what I WAS hearing. "call her PC...........morning..........follow up...........within........meanwhile just keep a close eye on her". Oh, NO. I didn't think so. This was NOT going to happen again.
"You don't think just maybe she aspirated when she was flying high on a triple dose of medication?", I hissed "The OVERDOSE might not have occurred if she hadn't been discharged too soon and against doctor's orders in the first place.......". My mind was racing and I couldn't stop the venom I knew I was spewing. I also couldn't stop my imagination from running wild.
Maybe there was a conspiracy. Maybe they didn't want mom to see other doctors. Maybe they had been experimenting on mom for some evil plan. Maybe they were afraid if she were able to get out of the Valley someone might spoil their plot. Maybe I was crazy. But, maybe I wasn't.
Moms current condition would assure that I would not be able to get her to those coveted appointments that may have saved her life or, at the very least, eased her pain. She needed to be stabilized before she could travel. She needed to be able to travel before we could find help. We needed to find help. I was still determined to get her someplace that might be able to help her, but right now I needed her safe.
What did I have to do to get them to understand she needed to be where she could be monitored. I tried calm reasoning. I tried crying & begging. I wanted her admitted at least until she was stable - she was NOT stable. How can I get them to listen? "Are you trying to kill my mom?", I all but screamed. It may have just been because they were afraid to send her home with a crazy lady, but they finally did admit her. Now I could worry about something else, and of course I would.
this story already knows I am somewhat of a "control freak"). I had to KNOW someone would always be there. We would make sure mom was safe and well taken care of. Now that we had a plan, maybe I could get some sleep.
I just needed to remind my sister of one more thing before I left, "Remember, sis, it really freaks the nurses out when people are on the floor in a hospital"! She had given a nurse a huge scare one night because she would rather curl up on the floor than in the recliner. Frankly, I didn't blame her - you could get squished like a spider in that chair! We all giggled at the memories. It hurt mom to laugh, it hurt her to do anything. Sternly she said, "QUIT", then she giggled with us.
I prayed like I've never prayed before and made promises to God that I hoped I could keep.
I probably would have sold my soul to the Devil that night if I thought it might help mom.
Luckily I didn't.
What else should we do?
What else could we do?