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Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11

 
Noslot
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08/14/2019 03:51 PM
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Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
I am a in-home hospice patient and this is an experiment. I’m seeking a conversation with someone currently admitted into any kind of hospice program as we live out this journey.

Disclaimer

The only thing I’m an expert about is my experience and frankly the same goes for everyone else.

Guidelines

I will use whatever power I have in my role as the benevolent dictator of this thread. There will be no arguments about God, medical politics, ethics or anything else that annoys me. This is the part of being a benevolent dictator that is appealing!

Before you Post

This thread isn’t about your Aunt Mary’s or Gramps experiences or to vent your opinions about hospice, death, dying, politics of dying, medical monsters or anything else. Its about your personal experience as a real time, real world, real person hospice patient. Having said this others are welcome to ask appropriate questions, but any answer I may provide is just my personal opinion based upon my experience. This is GLP and I know a certain chaos must prevail to keep the energy here alive.

tounge

Last Edited by ~Jazz~ on 09/06/2019 01:28 PM
Vincint Amor Patriae
Noslot  (OP)

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08/14/2019 03:53 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
I’ll begin. I have a life limiting illness and it doesn’t matter what it is. What matters is that it’s life limiting. I elected to receive in-home hospice care after receiving palliative care for a period of time. I wanted quality v. quantity of life.

The short answer is I have a quality of life at the moment that in spite of the challenges is fulfilling, peaceful and perhaps most importantly my dignity is intact. I am in control. I elected to stop any curative treatment and opted for symptom management that allows me access to my humanity as unfettered as possible.

I made this little placard for a bookcase in the room I will die in. I read it often. It comforts me.

WaitingRoom

This is what the in-home hospice agency put in that room the first day. It’s a bit more cluttered now.

hospicestuff

How I want to be remembered is probably dependent upon on my feelings in that moment. I think I will be remembered by the impact my life has had upon others and this will be the true measure of my existence. There are regrets and indeed pain they will be my companions to the end and this is as it should be. These are natural consequences for life choices. You can make amends, but you can’t unring the bell.

Hopefully this gives some idea of what my intentions are with this thread. To join others in frank and candid conversations. But, as we know, once the first shot is fired all of the plans go to hell.
Vincint Amor Patriae
Anonymous Coward
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08/14/2019 03:56 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
You won't find someone who's been thru hospice. They're all dead.
It's a fuckin death sentence.
Anonymous Coward
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08/14/2019 03:59 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
OP do you have family that visit often, help with your care?
Anonymous Coward
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08/14/2019 04:02 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
We love you, brother. Amazing love is all around you.
Anonymous Coward
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08/14/2019 04:02 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
What got ya bro?
Noslot  (OP)

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08/14/2019 04:03 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
You won't find someone who's been thru hospice. They're all dead.
It's a fuckin death sentence.
 Quoting: Anonymous Coward 5939456


Hospice is not a death sentence. My disease is. sheesh
Vincint Amor Patriae
Anonymous Coward
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08/14/2019 04:08 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
I'm graduating Hospice within the next week. My original diagnosis was wrong, but I was very weak and needed help to get back. Through much help, I was able to get enough strength back to function on my own. My new diagnosis isn't all that encouraging either, but I'm not dying. Time to get out.

Hospice is not just for the dying. It's for many different reasons from a slew of misfortunes. Injuries and diseases. About 20% of patients do graduate from Hospice.

Hope you do too.
Noslot  (OP)

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08/14/2019 04:10 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
OP do you have family that visit often, help with your care?
 Quoting: Anonymous Coward 6655394


Yes though I am completely ambulatory at the moment and require no assistance to accomplish anything I need to and this will change.

We love you, brother. Amazing love is all around you.
 Quoting: Anonymous Coward 75758325


If you mean love is as a deportment meaning how you treat someone then yes there is "love" in this place. However, isn't it grand that we can love someone and yet dislike the heck out of them!

What got ya bro?
 Quoting: Anonymous Coward 77907232


What got me is life. We're all going to die. The manner is the only thing that sets us apart. Death is unique and that IMO is as it should be.
Vincint Amor Patriae
Noslot  (OP)

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08/14/2019 04:17 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
I'm graduating Hospice within the next week. My original diagnosis was wrong, but I was very weak and needed help to get back. Through much help, I was able to get enough strength back to function on my own. My new diagnosis isn't all that encouraging either, but I'm not dying. Time to get out.

Hospice is not just for the dying. It's for many different reasons from a slew of misfortunes. Injuries and diseases. About 20% of patients do graduate from Hospice.

Hope you do too.
 Quoting: Anonymous Coward 77846190


That is wonderful news! You understand much and I'll bet we would have a great time over a cup of coffee pretending we have some really spiritual insight about life! LOLLLL I'm kidding with you of course.

Thanks for sharing and I have a question. Fella told me that living with a disease is the hard part. Dying was easy. I find living with the disease more distracting than my death. Do you?
Vincint Amor Patriae
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08/14/2019 04:18 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
Good luck OP! We'll all be seeing you soon!
Anonymous Coward
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08/14/2019 04:25 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
I'm graduating Hospice within the next week. My original diagnosis was wrong, but I was very weak and needed help to get back. Through much help, I was able to get enough strength back to function on my own. My new diagnosis isn't all that encouraging either, but I'm not dying. Time to get out.

Hospice is not just for the dying. It's for many different reasons from a slew of misfortunes. Injuries and diseases. About 20% of patients do graduate from Hospice.

Hope you do too.
 Quoting: Anonymous Coward 77846190


That is wonderful news! You understand much and I'll bet we would have a great time over a cup of coffee pretending we have some really spiritual insight about life! LOLLLL I'm kidding with you of course.

Thanks for sharing and I have a question. Fella told me that living with a disease is the hard part. Dying was easy. I find living with the disease more distracting than my death. Do you?
 Quoting: Noslot


No one is ever truly ready. There is too much unpredictability through the course of whatever your problem may be. Given you are in Hospice, you have some serious issues. The medications help with the symptoms and emotional issues. Just remember you are in control. You'll go through your own ups and downs. We are all very different. I think I did okay for the most part, but I had my moments of outbursts. You are not alone and since you do have the ability to be functional, take advantage of it. Reach out and try to make some good sense out of life and find some peace. You seem to be in good spirits. You have a fighting soul. A cup of coffee would be great!
beeches

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08/14/2019 04:29 PM

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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
javatime
Covid WAS nothing... so now Soros orchestrates bricklaying
Anonymous Coward
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08/14/2019 04:38 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
OP, toward your physical end you may begin to hallucinate and drugs will be provided for this - if you want them.

Or, you can instruct your loved ones of this possibility, and ask them to just roll with whatever you are 'seeing', after all, you may be absolutely correct and are just stepping out from this reality into the next but they may argue with you about what you are seeing.
Noslot  (OP)

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08/14/2019 04:50 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
No one is ever truly ready.
 Quoting: Anonymous Coward 77846190


I'm not. Why? Because I can't trust the world to protect and take care of my wife. Of course the kids will always say in different ways how they will do this. I was young once and I thought I knew something too. I'm not afraid to die and I know I am going to die from my disease unless death makes other choices and if death were merciful it would.

And then there is the bit about my Christian beliefs and feeling a little guilty for going to a better place. Now having said this I will not discuss my beliefs or religion or faith or anything of that nature. I only shared it because its a part of my answer.

I am in a good place with my death. Sounds really odd to read that, but that's how I'm feeling at the moment. That old adage of surrender to win comes to mind.
Vincint Amor Patriae
lsufanatic

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08/14/2019 04:51 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
Thank you so much for starting this thread OP. I am currently in my 4th year of fighting Stage IV rectal cancer with tumors in the liver and possibly lungs based on my last CT scan. I am really interested in following this thread to see kinda what I can expect once I get to the hospice stage. Not quite there yet.
Thanks Again OP,
Geaux Tigers
lsufanatic
rewind
Militant Bitch

User ID: 77917033
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08/14/2019 04:52 PM

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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
I am a in-home hospice patient and this is an experiment. I’m seeking a conversation with someone currently admitted into any kind of hospice program as we live out this journey.

Disclaimer

The only thing I’m an expert about is my experience and frankly the same goes for everyone else.

Guidelines

I will use whatever power I have in my role as the benevolent dictator of this thread. There will be no arguments about God, medical politics, ethics or anything else that annoys me. This is the part of being a benevolent dictator that is appealing!

Before you Post

This thread isn’t about your Aunt Mary’s or Gramps experiences or to vent your opinions about hospice, death, dying, politics of dying, medical monsters or anything else. Its about your personal experience as a real time, real world, real person hospice patient. Having said this others are welcome to ask appropriate questions, but any answer I may provide is just my personal opinion based upon my experience. This is GLP and I know a certain chaos must prevail to keep the energy here alive.

tounge
 Quoting: Noslot


are you a patient or a care giver or a nurse? or family of ?
lsufanatic

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08/14/2019 04:54 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
He is a patient, says so in the first line of the op
lsufanatic
rewind
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08/14/2019 04:54 PM

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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
ok, OP. I see you are a patient! Much heartfelt love your way! hugs

I am experienced and I feel with all my heart, we all deserve to die with dignity. hf
lsufanatic

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08/14/2019 04:54 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
He is a patient, says so in the first line of the op
lsufanatic
rewind
Militant Bitch

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08/14/2019 04:55 PM

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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
He is a patient, says so in the first line of the op
 Quoting: lsufanatic


yes I caught it on reread but had already jumped in. peace
lsufanatic

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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
I have no idea how I double posted and the second one is after another poster posted?
Weird
lsufanatic
Noslot  (OP)

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08/14/2019 04:57 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
OP, toward your physical end you may begin to hallucinate and drugs will be provided for this - if you want them.

Or, you can instruct your loved ones of this possibility, and ask them to just roll with whatever you are 'seeing', after all, you may be absolutely correct and are just stepping out from this reality into the next but they may argue with you about what you are seeing.
 Quoting: Anonymous Coward 6655394


First thank you for taking the time to share this with me. This is really a good time to say this as well. My hospice team (RN, Social Worker, Chaplain) and my family are aware of many of the things some of you may wonder if we know or understand. I assure you we have brutally honest and open discussions about every facet of my death. And of course that doesn't mean they will be prepared for it when these things happen.

You see I really do have the easy job. Dying is easy. I will not be aware of much as I am a strong proponent of palliative sedation. I do not intend to knowingly suffer. They do not have that luxury.
Vincint Amor Patriae
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08/14/2019 04:57 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
I am a in-home hospice patient and this is an experiment. I’m seeking a conversation with someone currently admitted into any kind of hospice program as we live out this journey.

Disclaimer

The only thing I’m an expert about is my experience and frankly the same goes for everyone else.

Guidelines

I will use whatever power I have in my role as the benevolent dictator of this thread. There will be no arguments about God, medical politics, ethics or anything else that annoys me. This is the part of being a benevolent dictator that is appealing!

Before you Post

This thread isn’t about your Aunt Mary’s or Gramps experiences or to vent your opinions about hospice, death, dying, politics of dying, medical monsters or anything else. Its about your personal experience as a real time, real world, real person hospice patient. Having said this others are welcome to ask appropriate questions, but any answer I may provide is just my personal opinion based upon my experience. This is GLP and I know a certain chaos must prevail to keep the energy here alive.

tounge
 Quoting: Noslot


You can only rule this thread if you remain alive.

hiding
Noslot  (OP)

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08/14/2019 05:01 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
Well, so far no "real time" hospice patients care to speak to you.

What a surprise.


I really don't want to speak with you either except to tell you how incredibly off putting you are.


I pity your caretakers.


Just because you're dying, it doesn't mean your allowed to be an obnoxious sob.
 Quoting: spindle fiber


Sit down and have a cup of coffee and talk about this. Something I said pissed you off.
Vincint Amor Patriae
Noslot  (OP)

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08/14/2019 05:04 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
You can only rule this thread if you remain alive.

hiding
 Quoting: Anonymous Coward 77915705


I'm going to add that to my list! Heck I'm going to tell my family about this. They will just howl in laughter!
Vincint Amor Patriae
Ladydoom

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08/14/2019 05:06 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
How close to dying are you OP?
We accept the reality of the world with which we are presented.
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08/14/2019 05:09 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
Thank you Noslot for this enlightening contribution. Wishing you are feeling OK today. I did hospice nursing for awhile, it was rewarding and gave me a deeper understanding of the arena these patients are contending with. They taught me a LOT. Life and death are all part of the human condition and we can garner a deeper understanding of this from the seen and unseen the gifts these individuals bless us with. On another note, remembering my first clinical in nursing school... A man in his last moments of life in the body. I was instructed to call the priest for his last rites.
It was very an emotional moment to say the least. I wept, prayed, and realized THIS event was pivotal in so many ways. Your post meant a lot to me, again, thank you.
May you be blessed with AT LEAST 3 hearty belly laughs per day.
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08/14/2019 05:11 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
OP I pray that you find the type of friendship you seek from this thread. Best wishes to you & yours.
Anonymous Coward
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08/14/2019 05:12 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
my sister passed in a hospice and as I held her I remembered someone saying of I should say a Divine Mercy.

I did it of course as it was told to me of having once said this missive the late JC had to His own spoken word to accompany the soul to That Father as attorney of sort...

The morning she passed I awoke and knew she was gone. She was standing by my bedside and just thank you...
Noslot  (OP)

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08/14/2019 05:13 PM
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Re: Hospice patient. Real Time. Real World. UPDATE: Noslot Gained His Wings Last Night. pg 11
Thank you so much for starting this thread OP. I am currently in my 4th year of fighting Stage IV rectal cancer with tumors in the liver and possibly lungs based on my last CT scan. I am really interested in following this thread to see kinda what I can expect once I get to the hospice stage. Not quite there yet.
Thanks Again OP,
Geaux Tigers
 Quoting: lsufanatic


When I first understood where everything was headed I read, watched YT vids and talked to anyone who would listen to me about what to expect, what might happen and anything else that crossed my mind. For me the scary part is the not knowing. When the doc looked me in the eye and said its time I finally had something I could work with. No more uncertainty. It was finally all out in the open and we could begin this journey honestly and lovingly.

I sure don't know what your experiences are or will be, but I wish you peace, strength and courage on your journey.
Vincint Amor Patriae





GLP