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

^^^ This

Just found your thread noslot, thank you for posting this. If you don't mind my asking, what is your avatar ? I remember finding a pin in my father's drawer like this when I was a child. I hope you are having a good night.

I was a Hospice volunteer for 2 years. Hospice is a great thing. One of my patients was real sad one day when I saw him in his nursing home. I asked him what happened and he said, "Hospice fired me. They say I am not terminal. Now I won't have Hospice." That is how much he loved seeing the different volunteers and nurses. He was treated like a human deserves to be treated.

I have heard from patients that the journey is not what we think it will be in the last months of life.

There is no way that I can respond to you tonight. Suffice to say there are so many who yearn to hear your voices instead of the lies and deception that destroy peoples lives. Truth may visit the pain of honesty, or the shame of guilt, but it will never betray you.

Thank you all for being here for me. I will answer your Qs as I can.

Hello Noslot - I so hope that the hospice team around you is an outstanding one to be with.

I bet you're very glad to be at home.

I'm guessing you have ALS, yes? God Bless you OP.

In this world communication is low-dimensional at best. So there will be overshoots, and after a little while we will have expressed what we can and we move on.

Maybe that's why the lifespan here is pretty short. It's very limited.

Losing a close person isn't easy - but it helps to be thankful that you had that person in your life for as long as you did.

Be greatfull for the time together instead of questioning the loss.



Loss Of A Loved One

Losing a loved one can be stressful and painful.

If they were taken as a result of an illness, at least you realize that they are now in a truly better place, with no pain nor sadness.

But if the person was taken unexpectedly, many folks struggle with the loss, even to the point of being angry with God.

No human can truly know God's reasons,but here's some thoughts.

If the person was rebelling against the Lord, maybe they were taken & given one last chance to Believe & ask forgiveness.

Maybe the person was back-sliding in life, and the Lord took the person home before things got worse.

Perhaps the Lord had / has tasks for the person to do that required the person to be in spirit form.

Or maybe the Lord was pleased with the person so much that He brought that person home.

I'm sure there are many other possible reasons.

Pray to the Good Lord that the person was actually Saved.

Give thanks to God for the good times you spent with the person.
Those memories will last in your heart.

Last Edited by Servant-of-the-LORD on 08/20/2019 01:42 PM

It’s not the disease that’s the focus of this little experiment, it’s the truth about my human journey. It’s not the stuff I may actually say to others. You know when people ask how are you and the invariable “fine” which follows.

Some have asked what’s wrong with me, etc., which I completely understand. Folks it truly doesn’t make any difference. I’m simply not interested in the “biology” or said differently the instant the locomotive hits you does it really make any difference how many box cars run over you to?

What made you pick glp for this?

I created my account here 7 yrs ago so that I could speak with someone privately and when we finished our conversations I let my membership lapse. I do come here whenever world events explode to read updates and find legitimate alternative opinions from those who are being impacted.

I’ve never started a thread on GLP so I convinced myself that I am pretty anonymous here so I could be vulnerable, stupid or silly because after all that would fit right in. :) As you can see I was trying to rationalize my fears of hitting that post button. I knew if I did I had to be honest or I would commit soul murder. Yeah, truth really is that serious.

That pin you found obviously meant something to your Dad. In fact I’ll be bold and say I know it did as I believe you do as well. My avatar is the distinctive unit insignia of the 1st Infantry Division. I served with the 1ID many years ago and still have my patch. Here is a link to wiki's 1ID page.

[link to en.wikipedia.org (secure)]

My avatar also says something to me every time I see it. “Victory” I had to post this thread if I was ever to see it. Well actually that’s not true I could have simply posted in a thread and accomplished that, but I wasn’t thinking that way. I thought I didn’t have any choice except to make this thread. So it simply means look at you Fred. You did it!

(See how sneaky I can be patting myself on the back!)

In case someone missed this TheTwilightZone (TTZ) and I are developing a pretty dam fine friendship off of GLP as a result of this thread. We exchange emails several times a day because he has great difficulty speaking because his disease is destroying his brain…and one day his life. TTZ is one of the bravest men I’ve ever met and I have some old buddies who were so I know what I’m talking about.

As for wisdom. I’ll leave you with this. Something was wise enough not to give just one person the truth. Instead it gave each of us a piece of it. So whenever 2 or more of us are gathered (like this thread for example) more truth would be present. I.e., wisdom.

You can find wise friends here.

Thank you for contributing to my understanding and the gentle reminders. I certainly hope you will continue to contribute to this effort from your caregivers point of view. You can help me/us better understand the secret world our caregivers may live in and our blind spots.

Thank you NoSlot. I am honored by your comments and getting to know you. One of the reasons I chose TheTwilighZone was because it's true. That is where my mind resides part of the time. It's a very strange place to be and sometimes I just can't make sense out of the smallest of things. I can be out there and if I ever say anything stupidly........it's because I am in that Zone. Back in The Twilight.

Sorry, I forgot to sign in for my comment.

At lunch I watched my wife grill a hamburger. She seemed lost in thought and yet was aware of how it was cooking. After a few minutes she scooped it up and placed it on my plate. Notice I said she placed it. She didn’t drop it or toss it she placed it with purpose and intent. She then looked up, smiled and said enjoy which I did.

I’m sharing this because I’ve never payed much attention to everyday things before all of this began. Now I find myself watching everything or maybe it’s seeing differently. These things have become important to notice.

She can’t fix me, but she can prepare a dam fine hamburger and place it on my plate. I know that now because I watched her do it. These moments really make me sad. I don’t want to see (feel), but I can’t help peeking. Pay attention to those who place things on your plate. They love you.

Thank you, sir. I knew my dad was in the war, but now I know a little more. He didn't like talking about it when he was alive.

Indeed.

That's called "smelling the roses". No matter how routine or mundane something is..........it's the motivation of what people do for us that is important. It all boils down to love. Glad you are seeing these things from a different perspective. If people only realized these things in the everyday world......it would be so much more peaceful.

Hiya Noslot.... how are you doing today? Just checking in to see how you are fairing!

This morning I measured the living room floor looking for a place to put the hospital bed when the time comes. I’ve decided I want it in our living room because everyone must pass through at some point and I’ll be present when they do and I want to see it all. The truth is that bed will be wherever it’s put by others to accommodate their needs. And this will probably be true for every decision at some point going forward.

We have been told about what to expect and they re-visit this according to some unknown schedule it seems. What this is about may be something as simple as where is the best place to put the chair next to my bed so its not in the way of “stuff” and people who will need access to my needs.

My nurse suggested I could try hydromorphone (Dilaudid) today because of the itching that my morph is causing me at the dosage I’m taking. What I must decide is if the side effects, if/when they occur, outweigh the benefit. For now I think I’ll just scratch the itch because I know the morph can control my pain in sufficient dosages. And she was telling me to trust her to manage this for me. I do.

Pain is also a reminder that things are changing. My body may be simply saying its OK Fred I’m dying and sometimes it hurts when this happens. Please don’t worry as this is natural and normal thing.

I’m now experiencing incontinence. I’ve been in denial for a time meaning telling myself that this too shall pass, but it won’t. It will only become worse before it stops. If it were just my pride and ego I could eventually put them in their proper place, but its not. My wife (and others) will eventually care for me as they would an infant. Regardless of her many assurances I deeply regret this.

I don’t know why I’m jotting this stuff down, but it made sense at the time…

Dying is the agony of foreknowledge without the ability to do anything about it.

If you can’t tell hospice to go to hell then you can’t negotiate with them.

I was with 3 Grandparents during their "hospice" times. I can vouch for the fact that NONE of them were in ANY pain during thier entire hospice care. They seemed peaceful and relaxed / and it was a beautiful process. I would recommend a private conversation with MD about PAIN Control. I am pretty sure Hospice will make sure the patient is comfortable - and there should be no judgement about potential opiod needs / I would just double check on that.

Last Edited by ruser on 08/21/2019 09:05 PM

Keep in mind that my life isn’t just about dying it’s also about living and enjoying everything I can. Here are a couple of things I enjoy.

This is looking out of my kitchen window over the sink onto the deck. My buddy and I hang out there as often as we can. We watch our birds and I report bird sightings to the folks at Cornell.



My bird feeders are up in a corner of the yard. (Birds fly away when I stand up to take pics.) As you can see the ground is littered with seed husk, hulls, etc., but the birds do a pretty good job grazing and cleaning. I have a neighbor boy who fills the feeders and rakes the debris for me. I put aluminum ducting around the posts to keep the squirrels from climbing up to the feeders.



I really enjoy my house plants and flowers. This is a space I commandeered from the corner of a room. The little white cups under the grow lights are African violet leaf cuttings that were sent to me by my hobbyist friends. There are many other plants and shelving displays scattered about the house as well.



I knew I would have to find my plants new homes because my wife doesn’t want to care for them after I’m gone and tossing them isn’t an option! (Getting rid of them would be like erasing part of my legacy and frankly that notion hurts me.)

My nurse suggested giving them to the hospice inpatient facility where the patients and caregivers might enjoy them. Everyone could help water and care for them and there was the possibility that it might help to distract them from other not so pleasant feelings. This was simply brilliant and I was elated!

Someone might be thinking what’s the big deal. They’re just plants and that they are, but they were MY plants. I fertilized, watered, treated, re-potted and spent many months and sometimes years caring for them. They speak to my commitment and dedication with their vibrant health and beauty. I was proud of them and I didn’t hesitate to tell people more than they ever wanted to know about them. :)

I am very glad that you have caring people around you.

If there is anything I can do for you, please let me know.

Thanks for the pictures, those plants are beautiful !

Your home is lovely.

Trust that your body will be honest about what it needs. It will tell you, if you listen.

I believe that you are really 'in sync' with yourself at this point. Good for you!

Many are watching this thread.

You are loved, Fred.

:jgflower:

Thank you.

There seems to be a lot of dust in here. My eyes keep watering.

Best wishes, OPie.