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.



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



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.

You won't find someone who's been thru hospice. They're all dead.
It's a fuckin death sentence.

OP do you have family that visit often, help with your care?

We love you, brother. Amazing love is all around you.

What got ya bro?

Hospice is not a death sentence. My disease is. sheesh

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.

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



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 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.

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?

Good luck OP! We'll all be seeing you soon!

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!

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.

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.

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

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

He is a patient, says so in the first line of the op

ok, OP. I see you are a patient! Much heartfelt love your way!

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

He is a patient, says so in the first line of the op

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

I have no idea how I double posted and the second one is after another poster posted?
Weird

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.

You can only rule this thread if you remain alive.

Sit down and have a cup of coffee and talk about this. Something I said pissed you off.

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!

How close to dying are you OP?

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.

OP I pray that you find the type of friendship you seek from this thread. Best wishes to you & yours.

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...

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.