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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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Bhl, I am so terribly sorry you are in pain!

Have you talked to your hospice provider about an alternative to morphine? Both of my daughters have been on morphine; both say it doesn't HELP with pain, simply makes you not care. I would be asking about high doses of Tylenol 3 and the like.

As to your fear of death, are you a person of faith? Any faith? Have you considered talking to the hospice chaplain?

Please keep posting here. We care about you.
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cwillie Jul 2023
But T3 is an opioid too, so the constipation issues are the same.
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Perhaps pain patches and topical analgesics might address some of your physical pain but I have to ask - you don't want to accept death and you don't want the medications provided, so why was the choice made to enrol in hospice?
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Bhltn2u Jul 2023
My primary care Dr turned me over to hospice. Do I have to want to die ? Can I not get care at my house and not give up? I have many health problems, my heart is why I am on hospice. Oh, but life is so brief. Each moment is precious.
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You should discuss this with your hospice team.
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Stool Softeners are the answer to constipation and your Hospice nurses should know all about that.

BUT
You should NOT be on hospice care if you wish to live!!!!! I can not emphasize this strongly enough!!!!While doctors sometimes fudge the numbers today to get you hospice, thinking you will get extra care, the truth is that Hospice is END OF LIFE care.
The purpose is to administer DRUGds in levels to keep you out of pain even if those drugs do HASTEN YOUR DEATH. And other than a couple of bedbaths a week, an RN who takes your BP once a week, and a call from clergy and social worker, today's Hospice is good for little else other than drugs.

Given that you ARE on Hospice I would CAUTION you to tell the nurses that you wish to live, and do not wish to hasten your death, and do not wish to take drugs at any level that may hasten your death.

Do you understand that you will NOT be taken for treatment at the hospital, Bh???
Because it doesn't sound to me as tho you are ready to give up treatment.

Again, I am worried for you. You do not seem to want to die, to give up treatment, and do not want to take pain killers at levels that may hasten your death.

Talk to your doctor and tell him this.NONE of your conditions are immediately life threatening. You have had a stent. You can have many drugs and procedures to keep muddling on heart wise. Palliative care (not Hospice) can avail you of better pain treatment and better pain meds for the spine.I am a huge fan of Hospice, and especially hospice as it used to be, but the prime imperative is that YOU must know what YOU want. You are step one. If you are not ready to give up, then you shouldn't be on Hospice.

I wish you the very best. Speak with the Hospice nurses and social worker and clergy to get your thoughts straight and if you aren't ready for Hospice show them the door; they will be there if you ever want them.
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HappyRobin Jul 2023
I agree 100%. Hospice can be good, but only at the right time and if YOU want it.

Regarding pain management, different kinds of pains respond to different classes of drugs, all of which have different side effects. Perhaps you can ask your doctors for a reference to a palliative pain management doctor. In our case we have a long-standing family allergy to the opioids, so those impacted have had to work around it but there’s usually a way. We’ve been told even fentanyl if appropriately monitored might be an option, but only you who know what your pain is and what you want out of your life. Hoping you and your docs can find another solution soon.
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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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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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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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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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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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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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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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I’m so sorry that you are in this situation.
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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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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"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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