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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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Has she taken much morphine in the past? It didn't bother me when I was young, but now it does me about that same way and I can no longer take it anymore. When you speak to some one in the am that may be worth mentioning. Hugs and prayers go out to you and your family.
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Amicable, how are things going?
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Don't talk about lawsuits. Call the ombudsman tomorrow. And tell them them you are contacting the joint commission if they don't remedy this NOW.
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If they are that incompetent then a threat of a lawsuit might make then step up, at the very least it will inform others to choose another provider. I hope things are better moving forward.
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Rainmom, it's getting weird every day, I swear! My brother got in yesterday noon, and I had called beforehand to check on her, and was assured she was resting comfortably. When we got there at 4 pm, she was again in extreme agitation, and had been so all the previous night. She was finally able to let us know that she needed to POOP! After 9 days of no bowels, I put my foot down and demanded that she be lifted up onto the bedside commode. I won't detail what followed, but you get the not so pleasant picture. That afforded her a bit of relief, and she was aware of my brother and sister in law and soothed by their presence. She had a sat dip into the 50's and we truly thought she was leaving us, with breaths as far as 17 seconds apart. But soon after, the stomach cramps and more episodes followed all night until 5 am. Bless the soul of the strong and patient aide who repeatedly lifted her back and forth between the bed and commode. Can you imagine having stomach flu and not being able to tell anyone you needed to GO!

That said, the nurse on duty was quite obviously devoid of any brain activity herself. Doses of meds were completely inconsistent, requests for new doctors orders thwarted or ignored, she could not interpret the instructions given her for adminstration of meds, nor explain them to me. At 4 pm yesterday, I requested a list of all meds, doses, and administration times. I didn't have it in my hand until 3 pm today. I did speak at length with the chaplain, and she is to have the manager call me. Yikes. I am just in total disbelief that I'm STILL having this much trouble after 9 days of hospice. Every possible thing that could have gone wrong has done just that. Thank heaven for the couple of decent aides. If I had the strength to fight this, I'd feel a truly big lawsuit coming on. However, they are so understaffed and underfunded as it is, that a lawsuit might do more harm than good.
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Amicable, I do hope that things are going better today for your Mom and you! Hopefully you have been able to get some rest last night, now that your brother is here, and you can take shifts to visit her in the Hospice Hospital. Whatever you do, don't allow them into bullying you into bringing her home! She is going to need constant monitoring now, by round the clock Nursing care, and you alone cannot possibly do it on your own! The medication adjustments alone during this fragile time is enough for them to be able to justify keeping her.
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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.
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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.
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Oh Amicable, I am so sorry, but this is part of the process, especially when there is lung issues involved, it is all such a fine line with medications, aspirations, pain and controlling her breathing. YOU HAVED TO TAKE CARE OF YOURSELF FIRST, otherwise you are no good to others, and I know that is harsh! You cannot control every aspect of the dying process, unfortunately, as I know that all you want is for your Mom to be comfortable! If the Dr allows her to have enough medications for her to be Even unconscious most or all of the time, let it be! As only then, will she seem comfortable to you! I hope things even out, it does take a awhile to get it all sorted, her meds, her comfort level, and you did the right thing, letting her go to the Hospice Hospital! Don't agree to bring her back into your home, as with COPD, Lung and breathing issues, it is very difficult for the lay person to manage, and as you found out, they cannot be in your home 24/7. You've got to sleep, so you can function, and you may not be there when she passes, so cut yourself free of any guilt, as you have done everything you could for her! I'll be praying for you both! PS, I sent you a PM.
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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.
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I'm so sorry, my experience with Hospice was good, and this is unacceptable! She may not be in pain, even if she looks that way, it could be the adjustment period, and hopefully things will settle down, but definitely continue to the top of the chain, if nessesary, to find the answers to what itnis that is bothering her! Make an appointment with the Hospice director,nher Dr, or the head Nurse, Social Worker even, but I'm hoping that one of them will take notice, and rectify the situation soon, Today!
What is your Mom's Diagnosis, whatnis the primary "end of life issue", that she is in for?
I know that with my Mom, the Cancer may well have spread to hdr brain, which can trigger unusual symptoms, mthat aren't necessarily pain, bjt a reaction of a different sort. If nessesary, ask them to increase her pain meds, even if it means, that she becomes very sedated, sleepy even, as the constant agitation isn't good for any of you! And if it is pain, well that Is unacceptable! Comfort should be the primary concern for her, in these final weeks and months! I'll be thinking and praying for good results TODAY! Remember, you know her best, and you are her advocate to great care!
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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.
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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.
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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.
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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.
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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.
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