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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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!
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!
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.
See All Answers