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Just 2 days ago was put on hospice care. I not only have heart disease but my spinal cord has both a degenerative disk and a bulging disk. On top of that my hips are very arthritic and my knees are very painful.


I refuse morphine. Last September I had a heart cath and had a stent put in my chest, since then the pain never stopped.


I have insomnia, long term .The problem with pain meds is they cause severe constipation.


Unlike many I fear death, no one knows what happens at death. Guess I am saying even in extreme pain. I wish to live.

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So I'm now hoping after reading all your responses that you want to continue living and not die despite your pain, that you have now fired the hospice agency and are getting about the business of living.
And I hope too that you can find a good pain doctor and or get the necessary surgeries to try and eliminate some of the pain you're having.
Life IS short and it IS precious, so get out there and enjoy it!
God bless you!
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Bh,
I have reread all your posts here starting with the original one you made us. It seems to me that you have no wish now to make your final exit from life.

You are in pain. You need medications. You dislike the side effects. All that said you have expressed over and over that you wish to live.

I am a lover of Hospice (esp. the OLD hospice), but hospice is there WHEN you need or want it. Hospice marks an acceptance that you are dying and a wish to do it free of pain and with dignity.
I said from the beginning that none of the things you have are, with treatment, going, with any certainty, to cause your death within 6 months.

You need A) good pain relief B) perhaps physical therapy C) good ideas to deal with side effects of your pain meds.

Were I you I would call my MD and discuss with him the withdrawal of Hospice. IF you allow them to stay I would make it crystal clear that if you find a treatment for any of your ailments you will likely avail yourself of them, and above all that you do not want medications that will incapacitate your ability to think and direct amounts of pain medication. That is to say you do not want ANY medication now that MAY HASTEN YOUR DEATH. Make it clear to your MD and to Hospice.

As I said, for all of us, Hospice is there when we need them. As to any of us having our hands up NOW to make our final exit--I don't see any at the moment.

I wish you the very best of luck and healing. And do speak with your MD and do update us when you do so, OK. We are pulling for you to get better.
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I'm not sure I know what "truth" is, but I do not fear death. I gave up on organized religion 68 years ago when I was 18. What I do fear is the process of getting there, especially in today's high-tech medical industrial complex--which is currently overwhelmed and understaffed. When the time comes for me, I intend to request Palliative Care if I'm in a position to request anything. My understanding of Hospice as it is currently constructed is that it doesn't always insist that a person be terminal, but EOL care is the original purpose.
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True, T-3 is a mild opiate, usually with manageable side effects for many who use it as prescribed for pain, as I do.
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"While I believe in God, no one has died and come back to tell what death is like. So, as long as my heart keeps beating I wish to stay alive. "

If you are interested, look up "Near Death Experience". There are countless people who have died and came back to tell of what they saw on the other side. Most of these people no longer fear death because they know that their souls do not die. There is one case, documented, of a man who died for 3 days, kept in a freezer, then came back to life when the coroner tried to do an autopsy on him.
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Unless someone else is acting as Power of Attorney for your medical decisions, there is no reason why you should be in hospice if you didn't agree to it.

Your doctor may well have determined there is nothing more he can do for you and by putting you on hospice he has severed the relationship. If you choose not to be on hospice, you'll likely have to find another doctor now.

Hospice does not kill people, contrary to what some here believe. They focus on quality of life, not quantity, and that means making sure you have the least amount of pain and distress from the ailments you have. That includes painkillers, usually morphine, and you can certainly request something else, but if "pain medications" cause you constipation, which ones do you think wouldn't?
(I'm no doctor, so I truly don't know which ones wouldn't.)

I do know that when my dad went on home hospice care, I was handed a box full of medications for his comfort which included morphine, anti-anxiety medication and LAXATIVES. That tells me the hospice folks know full well how to head off that problem at the pass.

Talk to your hospice nurse about the pain meds and laxatives.
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Bh, had anyone ever considered this;

https://www.mountsinai.org/care/spine?hgcrm_campaign=7018W000000wmoqQAA&hgcrm_tacticId=a0f8W000005P1FfQAK&hgcrm_trackingsetId=a0h8W00000Kqk7qQAB&hgcrm_trackingURLId=a0i8W00000CSf2KQAT&utm_source=google&utm_medium=cpc&gclid=CjwKCAjwqZSlBhBwEiwAfoZUIN7iw_eazHSvsDa-uQsRbArLmPBNmo7SqP2bx19438uidmhnsk5kLBoCkugQAvD_BwE
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If pain is SHARP whether in bottom, going down leg to knee or foot, or if there is numbness in foot then you need to see nerve specialist. No sitting for a while. Semi-fowlers position, recliner, standing, walking, lying flat all better. If this hit the tail bone it is a slow slow healer over many months.

Bed making is out, or should be. The bend and reach is lethal for a bad back which often refers pain down leg and to hip on affected side.

Wishing you good luck.
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Your doctor may have thought Hospice would get you some care, at least an aide to help with bathing. Maybe what you need is palliative care. Talk to the Nurse about it. Call your Dr. and tell him you r not ready for hospice. Its your choice. If you can afford it, get an aide in for so many hours a day. There is "in home" Medicaid. Office of Aging maybe able to help you.

There are Pain Management doctors. They teach you the best way to take meds to ease the pain. You can fire the Hospice. Your under no obligation to keep them around.
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Why do you want to live in extreme pain?
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Bhltn2u Jul 2023
Because even in extreme pain. There is life
Death means it's over, no more happiness, not ever seeing my children or grandchildren again. Eternity is unknown and scary. Would you not want to be alive rather than dead? I am on my smartphone now, still very alert mentally. You may be very religious and have a firm belief in heaven. While I believe in God, no one has died and come back to tell what death is like. So, as long as my heart keeps beating I wish to stay alive. Shalom
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BH, according to CMS (centers for Medicare and Medicaid) the only drugs Hospice will NOT provide you with are those meant to cure your terminal heart condition.

Any other pain relief medication should be available to you.
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Bhltn2u Jul 2023
Concerning meds on hospice. The pain meds given so far, have not been compatible with my plavix. The nurse caught one med she had given me that I had taken 3 days. It was not compatible with plavix. I have a stent in my coronary artery ( put in last September) without the blood thinners I could stroke or have a heart attack. Even with plavix I still could. Just have a better chance. My extreme pain is from my spinal cord that has both degenerative disk and bulging disk. My hips have osteoarthritis as do my knees. Life is precious. Take care of yourself and I hope you live along healthy life.
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Several years ago, I went to an ‘end of life’ seminar where hospice would be discussed. It was quite interesting.

This seminar was held at a Catholic Church. The retired priest who led the seminar is well respected and a very well educated man.

He grew up in New York. He attended a Catholic university for his undergraduate degree in philosophy, then another degree in theology.

He chose to attend a secular university to obtain advanced degrees in order to become a psychiatrist.

He became a psychiatrist and served on the board of directors of a large hospital in Chicago. His also served as the hospital’s chaplain. He eventually moved here to Louisiana.

He has a wonderful sense of humor!

He felt that a patient’s best friend in the hospital was their nurse and not the smug doctors who he said were not always the patient’s best friend.

He also stated that in no way, shape or form did the church expect anyone to be a martyr and by all means to take medication for their physical pain and medication to alleviate any emotional anguish. He does not feel that God calls us to suffer needlessly.

He was quick to point out that unless it is nonprofit hospice, it is a business and to please compare providers thoroughly before deciding on one because they do not all offer the same services.

I have had wonderful conversations with this retired priest who is quite progressive and very refreshing!
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As others have stated, be sure are you want it known that you’re not ready to die that you want to live a while but you want your pain managed. I don’t know if they still make them or if they are available but years ago I heard the fentanyl patch Was a fantastic pain block.
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Riverdale Jul 2023
Hospice does provide these and they are very helpful with serious pain issues. My mother had it in her final months suffering from serious bedsores.
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Since you want to live, you need to get off of hospice. That's not what hospice is for.

Talk to your doctor about using common OTC pain medication like Tylenol. Studies have shown that either singularly or in combination, higher doses of OTC pain medication can be competitive with morphine. Of course that comes with it's own set of problems. Your doctor should be able to help you decide how to proceed.
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ElizabethAR37 Jul 2023
I might as well take a sugar pill as acetaminophen even in higher doses. NSAIDs are out for digestive reasons. 1) I'm not a proponent of physicians overprescribing powerful drugs. 2) That said, in these days of the "opioid crisis", the prevailing ethos regarding pain management often seems to be "let 'em suffer". 3) Opioid overdoses primarily affect under-35s who are using drugs like fentanyl illegally for non-medical reasons, but the crackdown has created major DEA overreach and physicians running scared of losing their licenses. 4) There are non-pharmaceutical and "integrative" therapies that can work for some. There may be no great options, but it could be worth trying to find one in this case. Serious pain can do a LOT to destroy one's quality of life.
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discuss this with your Hospice Nurse.
There should be options for you.
There are products that can help with the constipation. The goal would be to relieve the pain without causing other problems.
A friend of mine has even had a tattoo done on her arm that says "NO MORPHINE". Morphine does not work on her and she needs other medication if any are needed.
I do hope that the Hospice Nurse will answer your questions and give you the support you need.
(someone on this site mentioned Hospice Nurse Julie. She is on Facebook as well as on YouTube. She is down to earth and gives awesome information. Might be worth checking out some of her videos)
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AlvaDeer Jul 2023
Thanks grandma for the Hosice Nurse Julie. Wasn't aware of her.

Again, just want to mention Colace or any other good stool softener over the counter cheap. These meds aren't laxatives, but softening agents, so that when stool stays in the bowel longer due to constipation it cannot harden and obstruct causing impaction and a need to visit the ER. Usually work for those on opioids.
Also that spinal compression needs a good pain management SPECIALIST in this day of withholding all meds that do much to help.
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Can I ask why you don’t want morphine? It is not as if you will become addicted since they are very careful with the dose to make you comfortable, not to hasten your death. At least my Mom was comfortable at the end with morphine.
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Grandma1954 Jul 2023
Bhltn2u mentioned the severe constipation that may result from Morphine.
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You discuss this with your hospice doctor. My brother often refused opioid on his own but took other meds. It depends upon the medical condition, but towards the end, the person becomes sleepy on theri own and will not eat or drink and still be comfortable. Usually the person guides the process.
On the other hand, my FIL had so much spinal pain because that is where the cancer settled. He was given a spinal version of morphine to help him pass.
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Bh, I'm glad the hospice chaplain will visit.

I think that truth in the realm of religion is unknowable. It is the realm of belief, not provable fact.

I also believe that religion is more about the way you live. Whether you have one more day to live or ten years, it's how we treat others and how we give back to the universe that matters. I think the rest (the afterlife) will take care of itself.

Wishing you peace of mind and strength of spirit.
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AlvaDeer Jul 2023
I so agree Barb.
And this statement of yours is PERFECT.

"I think that truth in the realm of religion is unknowable. It is the realm of belief, not provable fact."

Religion or lack of it is a very sensitive and very personal subject. It is much the same with politics.

I think arguments about faith and politics really have no place on a Forum such as aging care, and I fear for our sense of "community" and helpfulness if arguments about faith continue on Forum.
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If you want to read up on hospice care vs palliative care, go to nationalhospicefoundation.org

Go to programs. Then click on the link that says, www.nhpco.org/palliative-care

I hope you will find a viable solution for your situation.
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My mother had a fentanyl patch. She had serious bedsores. I believe this helped her in her final months.

I hope you find the treatments you need to help you. I am sorry you are afraid. Has anyone offered any clergy visits?
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NeedHelpWithMom Jul 2023
She posted earlier that clergy had scheduled a visit with her.
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Why are you on hospice if you want to live?
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NeedHelpWithMom Jul 2023
She posted earlier that her doctor placed her on hospice due to her heart condition.
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I hope that this might help. Regarding pain, all the heavy hitters are variants of opioids, like morphine. Codeine for my own back troubles doesn’t constipate me (though it’s not really a ‘heavy hitter’). Perhaps tell the medicos that you are concerned about constipation, you want to be monitored for it from the beginning, and to try different variants if necessary.

Regarding death. The millions of people who live on earth now and who have lived before us, we all die, no matter what faith we lived with. None of us have actual knowledge of what comes next. Try for some belief that helps you to cope.

When my mother died, I was working with Aboriginal people. My friend told me that the people in your life, stay close to you after death, and you often think of them and feel them near you. He called them ‘ghosts’. As time goes on, they drift further away into the universe. They sometimes come back to you to check, but eventually become part of the universe. That worked for me, when sometimes I felt my mother very close (and still do occasionally). It could fit with Christianity and other faiths too.

Try to stop worrying. Yours, Margaret
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AlvaDeer Jul 2023
My personal opinion only, but our religions (or in my case my lack of one) are personal to us. I feel that arguments about religions and which is the right or wrong one is inappropriate on the forum in much the same way politics is inappropriate on Forum. If we get off into what is RIGHT in politics or religion we are going to start not to like one another; that will break our tight community and ruin it. People will leave the Forum and we will be left arguing religion and politics; there are plenty of Forum available for that. But this Forum is about aging care.
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I’m so sorry that you are in this situation.
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I agree with Lea, if your not ready to die, then you should not be on Hospice. If you don't want to take Morphine, don't.
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lealonnie1 Jul 2023
And if you want to fire hospice, FIRE THEM!
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If you want to extend your life, no matter what, why have you agreed to hospice care in the first place???

You want a palliative care consult. Then you'll get medical care as needed, more pain meds than usual, and directions about how to not stay constipated at the same time. It's doable, or nobody could ever have a surgical procedure.
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My late husband was on fentanyl the last year and a half of his life while under hospice care and it didn't cause any issues with constipation until about the last month and a half of his life, but by then he was using a full bag of fentanyl each day, and hospice was able to give him a shot of Relistor for it and it had him pooping in about 15 minutes.
Relistor is prescribed for opioid induced constipation and hospice can prescribe it regardless of which opioid you decide to go with.
Please don't allow yourself to suffer, as the dying process itself is very painful as the organs start to shut down.
I hope and pray that you or your family members will make wise choices for you at end of life.
May God bless you and give you His peace as you take this final journey Home.
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There is a marijuana product called Rick Simpson oil if you can find it, access it etc
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southernwave Jul 2023
https://leafwell.com/blog/what-is-rick-simpson-oil-rso/
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Yes, discuss this with your hospice care team.
For what it's worth, after surgery I was in extreme pain, I dunno what went into the IV fluid bag....it certainly stopped the pain quickly. Glad to have had it then.
My mother with end stage cancer had morphine patches, which seemed to work great for her. She also took duccolax or sennecot (sp?) for constipation. Heck, my cat gets a teeeny pinch of Miralax every once in awhile, so he can poop, cause his other medicine causes constipation.
So, see what's available for your pain management, there are a lot of options for that as well as dealing with the constipation (even for cats).
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Use lots of magnesium supplements to counter the opioid constipation.

You can take 3000 MG daily to help relieve the constipation, if needed.

Please DO NOT listen to anyone that says magnesium supplements are bad, our bodies need magnesium to do over 600 actions, meaning we use a lot.

My sister was given oxycontin when she was on hospice because she couldn't take morphine safely.

May The Lord give you comfort and pain management during this challenging time.
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I found this on WebMD

"All opioids can cause constipation, but some may have less of an effect than others. Some studies have found that fentanyl may cause less constipation than morphine. Tapentadol may also be easier on your intestines than oxycodone. Methadone may also be less constipating.
Talk to your doctor about which drugs will give you the right balance of pain relief and fewer side effects."
https://www.webmd.com/pain-management/opioid-constipation-treatment
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