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I asked a question a few days ago on here and got wonderful answers, now I have another question. before going in for the biopsy 19 days ago my mom was not in any pain that was not managed by her fentanyl patch and 600mg ibuprfen, which she was on for fused vertebre and titanium cage in her neck. After leaving the hospital after her biopsy she was in pain from the manipulations done for xrays and biopsy, which is normal for her to hurt a few days after her neck is jostled. When we got home she was able to do just about anything she wanted but was in some pain from the procedures, we called hospice the day she got home from hospital and they came in and put her first on oxycontin, as soon as she took the ocycontin everything changed, I have not had a conversation with my mom since 4 hours after her taking the oxy's. next another nurse from the hospice service came in and prescribed morphine oral, and ativan, now not only was my mom out of it, she was now sleeping nonstop, they then changed her fentanyl from 25mg to 50 mg even though she was not acting or indicating any pain, they told me she would come out of the stupor after getting used to the new drugs. she has not, my sister and i have withheld the pain meds for over 17 hours and she becomes more alert and says she is not in any pain even without the meds, she has trouble eating and drinking anything because we cant keep her awake long enough to do so, when she does take a dirnk she falls asleep before she swallows it and chokes on it and then because of her coughing starts to throw up..occasionally she had this problem before all the meds with this because of the neck surgery and issues from that, being sedated like this has made it 1000 times worse. today another nurse came in and even though they upped her fentanyl 3 days ago to 50 mg they again upped it to 75 mg. I feel like hospice is literally medicating her to death. when i talk to the nurses or even the people at the hospice they say her cancer is bad and she needs the pain meds, but before finding out she had cancer and before the autopsy she wasnt in pain, none of the nurses have seen my mom until after she took the first oxy so they dont seem to grasp that before the first oxy my mom was alert not in pain and self sufficient. now my mom is very dehydrated, she still asks for drinks and food, but wont last without hydration. im considering taking her to the hospital knowing that i will lose hospice if I do, but i f I dont I will lose my mom in the next few days if not sooner. yesterday she had no meds for 17 hours, she started getting more alert and could talk more and still said shes not in pain. can i get back on hospice somewhere else if i lose it for taking her to the hospital? please any advice?

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Rambling man, I'm so sorry about your mom. There are no magic words to heal your wounded soul, but you will always know that you gave everything to be with your mom. She's still with you. I firmly believe that we never totally leave those we love behind. Concentrate on knowing she is with you, now, even though her pain wracked body is gone.

As far as your sister and how you're being treated goes, that's sadder than sad. I'd think they could at least make sure you were able to go to the funeral. Families often fall apart when a core member dies and this seems to be the way it is with your family. You aren’t alone, as difficult as it is.

Do you have a religious organization you can turn to? Maybe someone there could help gather some money so you could go to the funeral.

A grief support group may help you, as well. While most hospice organizations are wonderful, some are not. It sounds as though you had a tough experience, so that support group – if they offer one – may not be the one you want. But if you ask around at counseling agencies, making it clear you have no money, maybe you'll find a group where you can share your pain. Meanwhile, please keep us posted on how you are doing.

Whatever happens - even if you miss your mom’s funeral - you did what mattered to her while she was alive. Your sister will never have that feeling. Keep that knowledge in your heart while you put your life back together. You can do that. You will.

Take care of yourself like your mom wants you to.
Carol
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I am so glad to have found this site, what a wonderful group of people, was expecting to hear lots of negative opinions about how im doing this. When i spoke to the other hospice and explained the meds they said that it sounded like she is over medicated, so long as she is not in pain. When the nurse from the old hospice was here today and told me she was upping her fentanyl to 75 i asked her why she was doing that. She told me because my mom is in pain, and I asked her if my mom said that or was showing any sign of pain, the nurse told me well her heart rate is 110 which indicates she is in pain. Well I bought a pulsox a long time ago and put it on my moms finger and her O2 was at 88 from the nurse moving her about and such, I adjusted her concentrator to 4 and after 3 minutes she was back up to 97 and her pulse was down to 90. I told the nurse that when her oxygen gets low her pulse goes up to compensate, that doesnt mean she is in pain.. the nurse gave me a look and said well she needs to be on 75 for pain. I just said well i disagree, lets see where shes at and how she feels after she gets used to the 50mg she just got upped to 3 days ago...well apparently she ordered 75s anyways as they were delivered a couple hours later.. I called the hospice main line and talked to another doctor other than the one thats supposed to be doing her case and he agreed 75 when shes not asking or saying she is in pain is not needed, also he said she was having leg cramps because of another drug she was prescribed by them that she shouldnt be on because it causes leg cramps in cancers such as hers.. It took alot of calls and 3 days to get ahold of a doctor at all let alone never heard from hers. regardless im glad im switching care, i used to work hospice as well as gero/psyche as a cna and long ago was an emt so im not entirely stupid about the care, but the level of service to expect is where im hung up, its alot different taking care of a family member for sure. will update soon when i hear back from my sister who is at the hospital with my mom what they say.
you all are really awesome and have already made me feel better about my decision. Really what do i have to lose by switching her...thanks again.
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Craig, I am so sorry for what you are having to go through with your family.
I so understand. You need to forgive your family for being narcissistic. You have served and loved your mom well, and God sees your care. He is mindful of what you've graciously done and are doing to make your mom comfortable. It is precious time with our loved ones as they decline, and I am personally grateful for the experience - as hard as it has been at times.

I've had to CONTINUE to forgive my siblings for their continued narcissism and neglect of my mother... It has caused me to cry several times - for my Mom!!! Even thinking about it brings tears to my eyes and I get choked up.

You are a good son. She is blessed to have you near.
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Dear Ramblingman (I ramble too): You have considerable experience in the healthcare field, so that is to your advantage. Does putting your Mom in hospice give them cartblanche to treat as they please? I don't think so. You have not mentioned if you have her Advance Care Medical Directive (HCPOA? HCP?-various names) or her legal POA. I just got through helping my Uncle (still mentally competent to make his choices) fill out the questionnaire to give me the authority under his Adv Care Med Directive to manage his health care when he is no longer able. The questions are very specific as to health care conditions and treatment options that he can make choices on right now while his brain is clear. The minimal care option allows him to choose only meds that will keep him pain free until he dies a natural death, and also if his condition causes excessive pain, to be able to increase the pain meds even though it may hasten his death. I am obligated to ensure that his wishes are carried out by the NH, Hospice or Hospital when the situation calls for it. So it seems if you do have your Mom's medical directive authority, you need to review the documents and see what you are allowed to do. At the very least, I think the doctors and nurses are obligated to consult you before they change meds. My Mom is in a Nursing Home, and as her Health Care Proxy, I was crystal clear from day one with them that I had to be called before they changed any medications. So bottom line, clarify what your rights are and exercise them.
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im not a fan of hospice anymore. they have such a high turnover rate that they must constantly scrape the bottom of the barrel to stay staffed. they have my mom on haldol which may be necessary but the increased risk of heart failure was never mentioned to us. they are making decisions that dont involve the family.
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I am surprised at how much they are upping her pain meds for no apparent reason. Last year when my FIL passed away with hospice care, they increased his morphine very slowly and his pain was intense.

Let us know how it goes, I am sorry that you are not having a supportive experience from your current hospice. Take care.
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not all hospice groups are the same. I hope the new one respects you enough to listen to you, the primary caregiver. And yes they can be bossy. Told me my father who was in a hospice home and got considerably better, would not be released to be flown home unless he would immediately transfer to another hospice home. After trying to get them to agree to other arrangements, (he wanted to see his primary care doctor which would require hospitalization) with no results. I finally looked them in the eye and told them I would do exactly as they requested while making the arrangements with the flight crew for his transfer to the hospital. So I can understand your not being listened to....BTW Dad lived another couple of years. Don't give up on the concept of hospice, but find the right ones. They may be doing this because your mother is actively dying? Ask the questions and see if you get some answers.
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Well my mom is back home from the hospital, the hospital gave her an iv for fluids so shes well hydrated now. They agree though that she is in no pain and doesnt need all the other stuff and the 50 fentanyl is as of now sufficient and working. She hasnt congnitively came back much though and i think I may have her for a day or two more, but its hard to say. The er nurses said maybe a day or two, but the hospice nurse said who really knows. Ive been taking care of my mom for the past 5 years and ive more come to accept that she is dying just from having to first thing every morning going in her room and watching her chest to make sure she is still breathing. I am having alor of trouble dealing with my other family members though who are here now, my aunt and my sister, I have so much anger towards them for not coming and visitin my mom when i would beg them too, a few months back my sister came to vegas supposedly to visit my mom, but when my mom went to vegas to see her my sister ended up leaving my mom in the hotel all night by herself and her and her boyfriend went out all night with some of his friends he knew that lived here. My aunt my moms identical twin sister was in germany when this happened, she lives maybe 4 miles away and has visited maybe 6 times in 5 years, when my aunt got back from germany it was right after we found out my mom had cancer a couple weeks ago, my mom was still walking talking coherent, when my aunt got back she didnt come see my mom for 2 days which really hurt my moms feelings, by the time she did come my mom was no longer able to do much of anything and never said more than 3 word sentences.. I dont know how to get beyond this anger towards them and dont think i can forgive them for making her feel bad as her last real memory of them.. well i need to do some things, just venting here iguess as i have no one to talk to about any of this..thanks Craig
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I am so sad for you and with you. You will need all the inner strength you can muster for this one. A funeral is to comfort the living who did not spend the time with her they may have wanted to. You have something so much better than that no one and nothing can take away. I know it is hard when death comes sooner than expected, but from the point of view of the person dying it can be better than prolonged agony. So many things we have no control over. It's time for you to press the reset button on your life!
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I am no fan of Hospice. While I think they provide good care and help for families, I question their care for people not at the very, very end.
I have some accounts to post, but will do so on a new thread. I just want to caution people about choosing Hospice.
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