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

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The whole transition to hospice has been a nightmare. Everything that could go wrong has gone wrong. I pleaded with them last night after mom had two episodes of screaming for her mother and help me I can't breathe. I want the doctor to schedule her meds round the clock and not let them wear off, but all he would do is authorize one extra dose. I've called everyone I could think of, social worker, nurse, help line...I can't even bear to go sit with her. Yesterday I had to scream for 5 minutes in the car before I could even drive home. I'm exhausted, scared, desperate and I don't know what else to do.

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Amicable, I'm so sorry to hear that her agitated state continues. While I may have stated that our Hospice experience with my Mom was a good one,mthere were definitely times it was hectic and stressful, we were after all, losing our Mom to a painful Cancer. After having Mom at home in my sisters house for nearly 5 months, the final 8 days were in a Hospice Hospital. And while she was well cared for, the terminal waiting , and her being unconscious, not wanting her to die, wanting it to be over, oh God it was painful! Coordinating time so she was never alone, and yet never wanting to leave her side should I never see her alive again. So much stress, I don't even like to think about those days, as it's taken years to smooth them over in my mind.

Is your Mom ever conscious? Is she eating or drinking anything? Do they have her on IV fluids or nutrition? As I know with my Mom, they had to give her so much Morphine, that she was unconscious, but she has made that decision, before they gave her that level of pain comfort, and it happened over the 1st couple of days at the hospital. Then because she was actively dying, she was unable to tolerate even swallowing water, and any IV fluids were stopped. After that it was about 5 days. My Mom did not have the agitation as she was snowed under with the Morphine, but better that then the severe pain.
I understand how heartbreaking this is for you, and I hope you have other family to share innthe waiting process, but again I found it so hard to ever leave her, as did my 5 siblings and we spent a lot of time there together those final few days, and thank goodness there was a big sitting area in her room with a radio and TV. We found ourselves camped out, eating and drinking in her room there, and I hope that she was able to hear us, and found that comforting in some way.

Amicable, you must rest, and I do hope there is a comfortable chair for you relax in, while sitting in her room. You remember to eat and to rest. Another thing we all got was notes from the Hospice Dr, for our employers, so that we didn't lose or jobs, it was part of our Family Medical Leave. I know I missed an incredible amount of time from my job that year, but was able to retain my position, thank God! It is strange to think that when we lose a parent, our employers expect us backmto work after only a few days. That was when I needed the time to recover! I took 3 weeks no pay.
Be strong, we are able to take more than we understand, not that it brings you comfort at this time. Thanks for keeping us updated, as we do care about you! You take care now!
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Have you and brother told her it is OK to go? Sorry, I'm not speaking from personal experience, just repeating advice from others I have read. ((hugs))
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we are, not "are not" on day 14... I wish this site had an edit function...
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I can't believe we're not on day 14 and she still gets agitated, although not as frequently...yesterday she started showing signs, apnea up to 30 seconds, the "death rattle"... we sat with her until about 10:30 last night when she calmed down after being restless all day. I haven't gone yet today, but I did call and they said they're no change. After having those episodes of apnea she started breathing more deeply and regularly today and her sats are 93 if you can believe that! OMG it seems like this will never end. I know it will, but I sure wonder what it is that's unfinished that she can't resolve in her mind...And I wonder if there's anything I can say to her. She can't speak to me, although she tried yesterday...my dead brother's son had to leave yesterday, and my brother can stay maybe another week..
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Amicable, I'm so glad that you are both able to get some rest. Be well.
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Thanks Rainmom...I'm the same thing and I WAS one of those pale teenagers :)
Today marked the beginning of her transition...family spent all day with her and she was less agitated than before...she's beginning to make her peace. Depending on which nurse you talk to, it'll be tonight, or maybe tomorrow...probably the next day or two at the very most. I'll be so glad when she can finally rest. I don't look forward to the aftermath, but that's my problem and I'll deal with it...just want her suffering to be done. I'm glad we had a day with her when she wasn't so restless.
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I tend to be an Internet information geek - I'm actually glad I didn't have the Internet as a teen ager as I would have been one of those pale teens who never left their room. Anyhoo - I'm glad to hear both you and your mother and finally getting some rest. One thing that helped me during my mothers final weeks was looking up hospice terms and the stages and signs that the time is near. I don't like surprises and this helped me to know what to expect and to understand it better. With my mom and dad - both exhibited stages and signs but ones different from each other and neither hit all the markers - but still it helped me. Agitation is a sign and it certainly can be hard to see - but it does pass - and onto a more peaceful stage. Take care of yourself - it's a hard time. And for me at least, the memories of this time will stay with you - dealing with it in grace is the most anyone can hope for.
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Babalou, thanks. I visited her just for an hour or so yesterday with my nephew, and talked to the doctor to get something prescribed so she could sleep. She is finally resting, and the whole rest of the family did get to go out for awhile. I will see her just for a few minutes later today. I did get to sleep the whole night in my own bed and wake up late...it was wonderful. Now that she's resting, I can rest. I just had to stay "on duty" until she could be calmed down...simply could not abandon her in that state. Just did what I had to do, what she would have done for me if she could. All will be ok, and I'm sad, but I am at peace.
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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.
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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!
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