A place to talk death and dying issues
Comments
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Thinking of you Rose!
Hoping you can find some nausea relief, comfort and peace! Sending warm hugs to you (and big kick in the pants to your medical team for being so insensitive at a critical time.)
Things have to change...our dear BCO friends and 40,000 others go through this every year.
Keeping you in prayer Rose... Kathryn
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Dear Rosevalley:
I wanted to mention a couple of other anti-nausea options, perhaps you have tried them already but I will mention just in case.
Transderm-Scop patch. It is placed behind the ear. It is intended for motion sickness when traveling but it could help with nausea. I have seen it used with surgery to prevent post-op nausea.
Compazine and Phenergan rectal suppositories. These meds are also available as injectable, so if you have someone who could give you an IM shot, these could be an option. They are also available as tablet.
Meclizine 25 mg (Bonine) available over the counter. Another med intended for motion sickness but also used for post-op nausea. It is a tablet but it is chewable so perhaps it would stay down better.
You mention taking Zofran and sometimes throwing it up. Are you taking the swallow pill,, cuz there is one that will dissolve under your tongue. It is called Zofran ODT.
Sometimes switching out meds help. Using multiple anti-nausea meds on the day you take the DWD meds could be an option.
Gentle hugs,, glennie
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I took enough zofran every 8 hours that I finally bought a reprieve. I hesitate to think for how long but I will take it. Glennie- I do take the dissolving zofran and it has a nice pleasant taste that masks the bile and bitterness of vomit. TMI.. anyway. I have some of those patches Scop dermal patches and I might try that. What could it hurt?
Momallthe time- your insurance issues with your Grandma are amazing.. at 95 they worried?? WTH? My Grandmother died of IBC at 75 and we just tried to do whatever made her more comfortable.
Fluids tomorrow. Be well as you are able. Peace.
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Rosevalley, Reading all this makes me angry that you can't get what you need. What about a trip to the emergency room, one visit there would equal $3K! insurance , shaking my head. I would open up a credit card, and charge in patient care, let them come after you when you are gone. Right?
thank you for sharing, and giving us the insight for what we need to prepare for in the end. I wish you peace and pain free days. I always thought we will know when enough is enough.
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Rosevalley,
I just can't imagine that hospice can't be of more help. A year or more of this is just not OK. Gentle hugs and prayers. I wish there was more that we all could do
Nel
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I have taken enough zofran to stem the tide and maybe a constant amount has helped. The vomiting stopped and I am keeping liquids down. I did only take off 700cc of fluid which is way less then I normally do. So I am relieved.. fluids tomorrow and a talk with the oncologist. I think my system over reacts to constant episodes of vomiting - with yet more vomiting. Some kind of miserable feedback loop. Horrid. So I now know just take the zofran round the clock.
Some of you have mentioned taking morphine as a way out. Morphine makes me wildly nauseous. I have had PCA's during my 2 mastectomies both with MS and was nauseous both times. Couldn't wait to get off the machine to oral pills. Happy to see that go. So hospice uses a lot of morphine and sublingual version.. ugh. Nothing like adding to the N/V.. I really wonder what they do with head and neck cancers, jaw, esophageal etc.. those folks can't eat, take pills.. WTH? Do they place feeding tubes for meds.. maybe a programmable pain pump? if hospice won't use IV then what do they do for these poor souls? I am going to ask tomorrow cause honestly I want to know.
I listened well to hospice and had them out twice. I was wildly unimpressed by what they offered me for relief. I mean I had literally everything they already offered and more. Home health had left my port accessed so I gave myself fluids and flushed it afterwards (last Feb). It was as if everything palliative that I had would be taken, because hospice said all IV anything would stop. Back to suppositories and disintegrating zofran. I would need to clean myself up and empty my own bucket, as hospice came out just a couple times a week, DH works full time. Yay.. thanks. Gotta tell DWD looks mighty fine - clean, fast and dignified compared to vomiting on yourself out your nose and down your front.. drooling from nausea and no relief 24/7. Been there last year and not going there again. What is going on right now isn't as relentless as last year. If I didn't live in Oregon I would need to move to a state where DWD was legal.
I don't want to put anyone off hospice because I too have seen them do wonderful things, but in my circumstances they are woefully inadequate. Hospice was great for my Dad and my FIL awesome in fact. Neither had vomiting as an issue.
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Rose, I've only known hospice to be an in-house service and not provided at home. That's why I want to die in a hospital and not at home. Why should my family have to wipe my ass and deal with my corpse when it's all over? That's not love, that's duty.
People talk about dignity and that's what hospice in Canada is like. You check into a facility and die there. Family can visit and stay any time. There is staff to drain the phlegm from your throat and change sheets and towels. It is like you're in a regular hospital (some hospices are in hospitals) where medical staff attend you
I'm trying to remember if my Mom or Dad had a picc line for their pain killer meds or not. It's also important to take anti-nausa meds before you feel ill or it's too late for them to work. Morphine can be injected with an anti-nausea med for comfort.
Once they died we walked away and staff took care of the rest. That's what I want.
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You said it, Barbe! I'm contemplating going the same route when my time comes. I'll try to stay at home as long as I can, but when I can't walk to the john using my walker by myself, that will be it. Shitting the bed (even w/those pads) in my own home doesn't really sound appealing to me at all.
My mom, who had a different form of cancer (soft tissue sarcoma) stayed at home until the last two days. It was horrible. There was NO hospice way back then. Lord, how she suffered. She had a lot of trouble breathing at home, and when she went to the hospital, they just cranked up the morphine and she passed peacefully at last.
L
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My dad had home hospice, and they were great. The only problem was my dad's very unstable wife who was hysterical and unmanageable the whole time and thought that hospice was trying to keep him alive when all they were doing was trying to keep him comfortable, so he could die peacefully. They kept explaining to her that aspirating vomit would be a horrible way for him to die, and she thought they were "intervening." After 6 days, my sister, who was there from Florida, had a medical emergency and I had to spend the night with her at the hospital. My dad died during that night while he was alone with his loony wife...we think she "helped" him. She kept saying, "They said he'd last six days and he did."
But, we are big animal lovers in our family and daddy was home with his cats and dogs, which was important to him. I want to die with mine around me as well, unless it it is too much for my family at the very, very end. I might be so out of it that I won't know the difference by then.
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Rosevalley, I hate that you are going through what you are experiencing right now. Why in the world can't something be done to help make you more comfortable? I have a fear of this very same thing.
You are one of my favorite people here, Rose. No, we don't know each other, have only exchanged one PM. But you are like Stephanie was - open with what is going on, sharing knowledge, letting us walk with you on this part of your life. I want you to know that I appreciate you and all that you do. You are so brave right now. Sending love and no N/V thoughts your way.
JJ
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Thank you. JJ I have had no vomiting today. Lovely the fluids always make me feel better. I've been taking the zofran round the clock too so that helps. Maybe the carboplatin will lessen the hold the cancer has on my gut and allow everything to pass. I am hopeful. Yep Stephanie and I have been on the same cancer path for a long time. Now she is free.
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I am so sorry to tell you all that KT passed away Monday 5th (New Zealand time). She left behind her husband, son and daughter. She was a key part of our Kiwi ladies thread on here and we will all miss her compassion and kind heart. Best wishes to all of you here.
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Thank you Optimist for letting us know. KT was a very kind person, always asking after others before mentioning herself. I know hospice was good for her, she at least got a couple of weeks of feeling better to be with family. Fly free KT.
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To all the Kiwi ladies and their families- blessings and hugs with the passing of KT. She is free at last and at peace. May her family find solace in her love and memories. It's so sad to leave a husband and children.
Mammaray- you are right it is both joy and sorrow a true mix of emotions. Life is like that the good with the bad, light/dark, health/sickness, joy/sorrow. Lovingkindness to all.
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kt1966 has been added to the BCO In Memoriam list. Condolences to her family and friends.
celia
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Just recently KT mentioned she is out of options, she always tried to help. Go with the Angels, Aghhh it just doesn't get easier. Crazy crazy. Thanks Optimist in sharing with us.
Rosevalley hope you are stable today.
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I found this article thought-provoking. Perhaps some of you will, too.
An interview with Dr. Timothy Quill, a leading voice in the field of physician aid in dying, a professor at the University of Rochester School of Medicine, director of the Center for Ethics, Humanities and Palliative Care, and board certified in palliative care.
http://www.medscape.com/viewarticle/872510
"Dr Quill: It would be difficult for me to construe addressing the suffering of a terminally ill patient in some way as a harm. It's really an obligation. The question is, how can we respond to those kinds of suffering? We are involved in helping people die all the time. Why do we do that? Because we take care of people who are dying. Part of our job, in my opinion, is helping people die better. Again, I say that in a direct way because it irks me when we say that doctors shouldn't help people to die....
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Since my brother's death in late October (cancer ended his life), I've found myself seeking solace and insight through many different avenues. Here's an article about a memoir that explores learning to live with loss, which has helped me to broaden my perspective not only about coping with a loved one's death but also about facing my ongoing health changes and new challenges.
https://www.brainpickings.org/2014/06/09/meghan-o-...
A sample: "If children learn through exposure to new experiences, mourners unlearn through exposure to absence in new contexts. Grief requires acquainting yourself with the world again and again; each "first" causes a break that must be reset… And so you always feel suspense, a queer dread—you never know what occasion will break the loss freshly open.
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Thank you Brenda, for that very thoughtful and informative interview/article. I hope Dr Quill's ideas are put into practice by all those in end of life care.
I like how Dr. Quill changes the language from "physician-assisted suicide" to "physician aid in dying" with the emphasis on "helping people die better." We are all going to die, and some will have very challenging deaths.
I would like to see a more open dialog to help people who are facing challenging deaths to have more support and care to relieve the suffering. We as a society need to open this dialog, make better laws if we need that, or ease some restrictions in insurance practices, and develop better models of care, so we can help ourselves and our loved ones die better, with less suffering.
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I second those posts!!!! Yes Yes more dialogue and action on treating side effects at the end of life. 0 -
Can't remember if I mentioned it here, but when my Mom was dying we asked her doctor if he couldn't just give her a morphine overdose. He said "I can't but you can." We were told to ask for morphine every time she twitched. We were so afraid she was in pain and as she was in palliative they just kept giving it to her. No IV fluids. We all knew what we were doing.... Years later we did the same thing for our Dad. So I think it's been going on but just not advertised as such.
When Marybe from these boards was about to die they told her that as her organs shut down it would be very painful which is why morphine was recommended. She watched the IV go in her arm. That kind of freaked me out to know she was watching what was going to basically kill her. Morphine slows down respiration until your body just stops. So no drama or agony. Just a peaceful passing.
That's what I want for us all.
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Barbe, the morphine overdose is an unofficial method of helping people pass without pain. I've heard several of my friends tell me that's what their families did for their parents/grandparents when their pain was too severe at end of life. Sometimes, they're looking over their shoulder as they say it (because they are afraid it is illegeal).
I shudder at what happens in families where they don't know how to ask for these methods.
What Dr. Quill is suggesting is that these discussions take place in the open, and sooner. Let's get these methods out in the open (and make them legal if needed), so families can help their loved ones "die better."
"Just a peaceful passing" should be the right of every patient, and the goal of all the medical staff.
Madelyn
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Aww, sweet Marybe. How we all loved her. She was something else, right up to the end.
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When my Dad was dying I asked him if he was afraid. He said only of pain so I was able to reassure him that we would keep him out of pain. I know it will be done for me when my time comes.
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They let Marybe have her dog in to visit before she slipped into her coma....
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We have the "Options for Death and Dying" (or Death w/Dignity) here in California, but it's a real pain to get the ball rolling on it, AND you have to swallow a barbiturate cocktail. What if you're TOO weak to even raise a glass? What if (like our dear Rosevalley has bemoaned) you have really bad N/V and wouldn't be able to keep the stuff down?
That is why these conversations are IMPERATIVE! I always say society treats mortally ill cats and dogs better than terminal human beings, It really pisses me off.
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Could they not put it un a liquid so you could inject it into your own IV port?
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That's a good question! I'll have to ask someone who knows more than me.
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No the cocktail is oral. To my knowledge there is no lethal injection (IV) to end life.
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I know a doctor can't inject you with a fatal dose of morphine but both my parents essentially died of an overdose of morphine. Nurses attended them.
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