What a day of hell...

Before I get started it might be beneficial to clarify one thing. Of course you know that mom is under hospice care. One of the main things about being under hospice care is that if anything happens to mom: broken bone, having a heart attack or anything like that 911 is not to be called first - the hospice is to be called first. Okay to the update...

Thursday morning on my way to work I received a phone call from one of the nurses to let me know that mom had fallen again (she had fallen 2 days prior but was okay). This time they were a little concerned because her blood pressure had fallen really low and they wanted to know if I would like her to go to the hospital to be looked at. I asked "have you talked to the hospice? I can't do anything unless the hospice says so". The nurse (who's english is not really good) said, "yes the hospice doctor said it was okay for her to go if you wanted". So I said okay. I called Sis to let her know. I went to the nursing home and mom was very red and sweating very badly. And walking around.... the nurse got her to sit down and asked her if she knew who I was. She was basically whispering gibberish but didn't recognize me. Told the nurse "I was pretty".

I rode with mom in the ambulance to the hospital. Sis met us in the ER. The Dr. said her potassium was very high and that her sodium was low. They wanted to get mom's potassium down so wanted her to stick around for a couple of days or so until they got it down. The whole time we were in there mom "talked to herself" and seemed to be (lack of better words) seeing things. She was very thirsty but they wouldn't let her drink anything so she was drinking imaginary drinks with a straw, handing it to us and say thanks. She seemed to be walking with her walker a few times and petting a pretty dog. The only time she really spoke loudly was when the nurse or someone tried to do something she evidently like she would tell them to stop.

After being in the ER for about 4 hours or so mom was moved to a room where of course they try to take her blood just about every hour or so to check her potassium. She continued her talking to her self and getting a little sleep. Of course Sis and I had to keep her from trying to yank out her IV.

Now I mentioned this was a day of hell. I don't think mom was aware of what was going on so this day of hell was for me and Sis. And here's were the "real" fun came in.

Sis got to wondering why noone from the hospice had come up or called us to check on things. So I called mom's hospice nurse and asked if anyone would be coming to the hospital to check on mom and the nurse was not even aware that mom was at the hospital - this was the first time that she had heard anything. So I told her what happened this morning with the nursing home nurse and asked when she would come up - it wouldn't be till the next morning. Sis then wondered if we could have the 24/7 hospice nurse to watch mom since we didn't feel comfortable leaving her alone. The hospice nurse said her office was closed so she wouldn't be able to set up anything until the next day. And that we couldn't do it while mom was in the hospital, if she was at the nursing home they could. But I could call the main 800# for the hospice and see if the on call nurse might be able to arrange something.

So I called the on call hospice nurse (from now on - h.n.) and told her what was going on and could she help. So she did some calling and said yes. She could have a 24/7 nurse at the nursing home at 8pm. We talked to the hospital nurse, Rachel, and told her that we wanted mom released. She said that the Dr. would be against it and we said we didn't care we wanted her released so she went to call the Dr. so we could speak to him. Sis spoke with him and he basically argued with Sis that it was a bad idea to release mom until her potassium came down. We told him that mom is under hospice care and that she should not have come to the hospital in the first place so we wanted her released. He said he would have to get a social worker from the hospital to come in and have her released since he was not there and that he would talk to Rachel to get that started. A bit later I questioned Rachel about how long it would be for the hospital social worker to come in. She said she didn't know, they're on call so who knows. A little later there was a shift change and mom's new nurse was Kim. I asked Kim if she knew how long it would take for the hospital social worker to come in she said she didn't.

I received a call from the h.n. saying that the 24/7 nurse was at the nursing home (n.h.) and they were unaware that mom was coming back so could I call to let them know. So I callled the n.h. and told them that we were in the process of having mom released and she would be coming back. the n.h. said they needed one of the nurses from the hospital to call them and let them know what all had been done to mom so they could have for their records.

So i went out to the nurses station and was talking to one of the nurses (not kim or rachel) and told them we were waiting for the social worker (s.w.) to come so we could have mom released but in the meantiime we needed a nurse to call her n.h. to give them an update on her etc. The nurses i was talking to looked a little shocked and said there wasn't a s.w. on the way in. I pointed to rachel who was still there and said "we were told by at least 2 people that a s.w. had to come and sign us out so we could release our mom so we could leave". A s.w. hasn't been called????? nope!!!!! As a matter of fact we don't need a s.w. to sign us out we needed to sign an AMA (against medical advise) form! Well get me a form to sign! Oh and could one of you call the n.h. to give an update on my mom - NOT rachel or kim!

So one of them came in with a form - oh and btw if she's released they can call an ambulance to transport mom but it wouldn't be paid for because we're leaving AMA. What?!? Doesn't Medicaid (which mom is under) pay for it? Don't know. so I call the h.n. back and tell them what's going on now. does she know if medicaid pays for it? she's not sure let her do some checking she'll call me back. she calls back and is unable to find an answer but suggests that we ask to speak to the hospital s.w. via phone as they should know. So I ask to speak to the hospital s.w. and they get one on the phone. I told her about trying to get mom released and how we were first told that we had to have a s.w. release us and now we were doing an AMA but the ambulance wouldn't be covered etc. She was shocked and apalled by what had happened. OH And this was the first time she had been called. I also told her about Rachel and Kim and she was taking down names and everything. She says she remembers looking at moms chart when we were in the ER and was wondering why were there since she was under hospice care. She asked me if mom was with such and such nursing home and i said yes. She said that unfortunately this is not the first time that this n.h. had called 911 for a hospice patient. She told me she was unsure if medicaid paid for the ambulance but she knew the phone number to the company so she was personally going to call one for us. She would check the next day to see if it wasn't covered and if it wasn't she would make the n.h. pay for it. We finally got mom back to the n.h. about 10pm or so.

Sis and I saw her last night. She's a little more coherent than she was last Thursday but we don't think she still really recognizes us. She was kind of talking but it really didn't make that much sense. She was telling us that we needed to go away so she could get ready for work. She snapped her fingers to "call security" to escort us out. She hadn't really eaten anything yesterday was drinking a lot of liquids though. Her hospice s.w. called me today to say that she had eaten a little today. She said that they'll just monitor her to see if she continues to go down hill from here or if she kind of stays at this stage.

~ Wolf Lover Girl