Mom is in hospice house and wakes up screaming. They won't schedule her meds and I'm furious. What can I do?

If she still knows you then continue to spend SHORT periods with her. If she does not know you just go and check on her and leave. Don't feel guilty about not being with her all the time because it is not doing either of you any good. Does she scream like this when you are not there. This kind of behavior at the end of life is not unusual so do you want her sedated enough that she is barely conscious which is not the wrong thing to do. Just ask yourself that question.
Are her basic needs being taken care of? is she being left for long periods in an uncomfortable chair, not getting diapers change regularly. Getting sore because she is not cleaned properly, thirsty with a dry mouth because she can't get herself a drink. There is usually an Ombudsman you can contact.

Amicable, my Mother did the same thing. It turned out she was too sensitive to the morphine. They changed to dilaudid and added methadone, and the sitting up and screaming stopped. It broke our hearts when she did that.
She was also on a strict schedule of the medication so she would have no break thru pain or anxiety.

It sounds like she is going through some kind of withdrawal. If she was on high levels of opiates prior to hospice, they may have to adjust her meds for comfort. If she drank alcohol at home, you may be witnessing withdrawal. Same with cigarettes.

Amicable, where is your mother now? Apologies, I've missed something - I thought she was coming home for hospice care? Has she been transferred somewhere else, and when was that?

I'm hoping this is a case of teething troubles until they can get her medication rebalanced again, is the thing. And meanwhile, for you, overlook the superficial callousness of this advice and take a leaf out of 'The House of God', where young doctors are told to remember: "the patient is the one with the disease."

Yes, you must be exhausted and desperate and scared, but the only way to know if there is something else that *might* be done is to be able to think straight - which you just can't do if you're identifying too closely with how your mother must be feeling. So step back and breathe (screaming does the trick!). Then you'll be better able to pinpoint who has to take responsibility in this situation, and fasten on to that person until something gets DONE.

Go for icy menace with anyone who's being needlessly obstructive - your mother is suffering and you are her advocate. Good luck, I hope you can find who needs kicking.

I tried to care for her at home, but broke down after 4 days with no sleep, hardly any food, and a despicable level of training and support. They rushed her transfer back home, the equipment was late, the wrong oxygen concentrator, the pharmacy scripts written wrong and scattered all over town at 4 pm on a Sunday afternoon when they close at 6. Her catheter was put in wrong before she left the hospital. One nurse came and seemed nice at first, but then proceeded to linger at my house and tell me how she had been written up several times and fired at her last caregiving job and how she was losing her house. Of course I immediately told the director and had another nurse come out. She kept waking in such discomfort...they adjusted her meds again and again and still no relief.. Seemed like everything I was doing was wrong. When I gave her liquid meds, she aspirated. Finally, a social worker came over and said enough is enough because her symptoms were not under control, and they agreed to bring her to hospice house until they could get her stabilized. By that time, we were both so traumatized that I knew I would have to put her in another care facility if she wasn't stable within the 5 days allowable, or so close to death that they would let her stay. Anyway, after the transfer she seemed to be sleeping mostly and not in too much pain or SOB, so I went home to get some sleep. The next day I went in, and she was trying to get out of bed again, but fell asleep again after medication. Yesterday when I went in, she woke after an hour or so with her and started a terrifying fit of hallucinating, yelling for help, couldn't breathe...her sats dropped into the 50's and she was hypoxic and calling for her mom, saying where am I, and grabbing me and the bed rails and she was unconsolable, calling me mommy, help me. They gave her Ativan, and she became nauseous. I begged for more medicine and they gave her morphine and she spit it out. They had to call the doctor first before they could give her anything else, and finally they gave her more morphine and she went to sleep. She had another episode of the same at 4 this morning, and didn't call me, so I couldn't even be there to comfort her (which really wasn't working anyway). I had called at 8:30am and they didn't answer, left a message and hadn't heard anything at 9:30. Called again and talked to the nurse who told me what had happened. Before I left yesterday, I insisted that her meds not be allowed to wear off and for her to have to wake, but all they would authorize was a one-time additional does. This morning I emailed, called, called again...finally got hold of the social worker who called the director and got some action. Still...I don't want to go, because I'm afraid she will wake up if I do and I can't go through that again by myself. My brother will be here in about 12 hours I hope...I hope that's the only reason she's holding on and that she'll pass soon after and be out of her misery.

AMICABLE, I think you need to take today off and stay in bed. Get up late, have lunch out, go the library or a museum or something. This may sound harsh, but she's going to die one way or the other, yes? Your exhaustion will only agitate her more. Be at peace.

Perhaps you need to find a different hospice provider? If that's not possible - maybe due to insurance reasons - a talk with a supervisor is in order. Overall both my experiences with hospice have be very positive. The first round there were things I didn't understand and when I couldn't get a proper explanation I would ask for a supervisor - and in one situation I had to insist that a particular hospice nurse no longer see my dad. My understanding is that above everything else, hospice is for insuring the patient is as comfortable as possible - even if it means extra medication. Heck - when my mom started on hospice they were allowing a dose of oxycodone ever thirty minutes! If you feel your mothers pain, regardless of if its physical or mental - if her pain is not being adequently managed, keep working your way up the chain of command until you find someone who will address your concerns.

Amicable - I'm so sorry, that must have been awful for both you and your mother to go through. I hope I don't add to your agitation by saying this - but your poor mother is being cared for by the oddest hospice that I've ever heard of. I've been through this twice now and also have read and talked with many others who have experience with hospice practices - and it seems the most common complaint is that, if anything - hospice tends to over medicate! My moms nurse would constantly say "we want to be sure that your mother is comfortable - absolutly no pain". The social worker you're dealing with seems to get it and is firmly in your corner - I'd continue to talk to her as often as need be to get her to advocate for you and for your mothers care and comfort. Such an awful time - know that others are thinking of you and wishing both you and your mom calm, care and relief.

Oh Heaven have mercy the saga continues...she falls asleep for a minute, and wakes up...oh God help me...and so on. We replaced the morphine with dilauded...basically no change. No pain, can't see with her eyes open, but affirms she can hear me. Had a long talk with some wonderful nurses. They're saying it's terminal agitation...it's as if she is afraid if she falls asleep she won't wake up. I guess she's just not done processing her life. She had a lot of bad stuff happen to her, an abusive marriage, alcoholism, a string of bad relationships ended by her neediness, a wayward son, the loss of a son to suicide, and then there's me, with the superhero cape. It's time for me to take it off, I guess. It's not like there's anything more I can do. They finally did get her to sleep about 3am...so...I had a talk with myself and told myself if I had a brain in my head I'd be home in bed. So thought I'd check in to help me decompress, and now a game of solitaire and to bed it is. Thank all of you for your inputs...I think at this point our only hope is an exorcist!

Thanks Stacey, that was my concern that they weren't medicating her enough to just pretty much stay asleep...no reason she needs to suffer any more than need be. I think they were worried about decreased respiration and whether she could talk to us by the time my brother gets here, but why at this point? It would be more merciful just to let her rest, my brother and I both agree on this. Checking my inbox...hugs.