Seriously, is this what we get from hospitals?

Tuesday - Dave and I were still doing the rotating shift thing with Mom. I am beyond tired. I woke up in the morning to get my kids ready for school and could barely keep my eyes open. I made it home last night (this morning) around 2 am. This morning, I sat on the couch and literally just ordered them around until it was time to go.... (Thank you Damara for driving them in, I don't think I would have made it.) I know they understand, but... well its really all about guilt these days. Guilt for not being able to do more for my mom, guilt for not being able to spend more time with my kids, guilt for asking Damara to pick up so much of the slack with our clients... Yes, I am riddled with guilt these days.

I was working this morning when Dave called me to tell me that Mom had a really rough morning. She woke up around 8:15 am because she had to go to the bathroom. Bathroom trips these days are a nightmare. She can't get herself out of bed, and so she has to depend on others to help her, but she doesn't always remember this, and there are times when she doesn't even know she needs to push the call button. This is how she missed her pain meds on Sunday too. She has no concept of time; thinks it is morning when it is night, thinks months have passed when its only been days.

And so, this morning she had to go to the bathroom. She has a bed alarm on her bed, so if she gets up, it goes off, and people are supposed to come running. She doesn't have the strength to stand, and if she gets up she is going to fall. Dave was in the room but asleep. The alarm woke him up and he stopped her from getting up, but she was frantic about going to the bathroom. Dave pushed the call button for her, but as we have learned, the call button does not really mean anyone will be coming soon. After a few minutes with mom saying she had to go NOW.... Dave went into the hallway to call for a nurse. He was no sooner out of the room, then mom tried to get up. She wasn't successful. She fell, and with the fall, the tube in her nose (NG) going into her stomach was yanked out. (The tube was connected to a drainage unit on the wall, and therefore, the pressure from the fall pulled it out.) In addition, she hurt her back, her knees, and her arm.

Dave rushed back in to help her, but she was hysterical and he wasn't able to get her up on his own. He called for a nurse, but again, got no response. When he went back into the hallway, frantic himself, by this time, the first nurse he saw told him that she was busy with another patient and walked away. The next person he saw was a doctor, who came right in to help. The doctor apologized profusely, said this never should have happened. This is where I start to get a little angry... how many times are we going to hear "that never should have happened" or "we're so sorry?" It just seems like too many things go wrong, even when we are here, we can't get mom the help she needs.

After Dave told me the whole saga, I felt ill. I was already exhausted from lack of sleep and stress, and now my mom is suffering needlessly because nobody knows how to keep her safe and comfortable while she is in the hospital. That hardly seems right.

I was supposed to have two board meetings today, one at 3:30 in Blaine, and one at 6:30 in Plymouth, but I knew that I couldn't leave mom alone. Dave had to go to work too, and he has already taken so much time off, that he is worried that he is going to be fired, and he needs to keep his job because he needs the health insurance for mom.

My initial reaction was to find someone who could stay with mom when Dave and I could not be there. I have a friend who owns a home health care/personal care attendent company and I called him to see if it was possible to get a PCA for mom in the hospital. He said he had the perfect person, and that she could start that same day. We agreed to meet at the hospital at 4 pm.

After I arranged for the PCA, I called our family lawyer and explained all of the issues we were having and asked how she felt I should handle them. She called me back a few minutes later to tell me that she had found the patient services advocate at the hospital and that I should call her and tell her what was going on.

After talking with her for a few minutes, I told her that I had hired a PCA who was starting later that day. She told me that I couldn't do that. To which I said, you can't stop me... for all you know she is a friend of the family who is going to be staying with my mom when Dave and I can't be there. She said, "she isn't going to be able to give her meds or make any health care decisions for her... and the hospital isn't going to pay for it." I told her that it was the nurses job to give meds, that the PCA was just going to be there to make sure mom didn't fall out of bed, miss her meds, or have any other unneccessary complications or injuries. She agreed that it was up to the family if we wanted to make arrangements for a PCA. She also promised to talk to the nursing supervisor about the issues we were having and see if they couldn't improve upon the care.

And so, we now have Lena. (Thank you Prosper.) Lena is wonderful. She started at 4 pm. I made it to my 6:30 board meeting and was back to the hospital around 9 pm. Lena stayed until midnight with me so that she and I could go through the health history, the meds, the expectations, etc.

I know its not the perfect scenario, and quite honestly, its a huge financial committment, but I have to say that I feel a LOT better knowing that mom isn't alone when Dave and I are working.