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

Jazz I've been sitting here for several minutes looking at this and I've decided to print this out and frame it. I'm going to put it where everyone can see it and when they ask I can tell them about you and how our conversations helped to shape my faith.

How’re you doing OP?

I arrived home from the hospital a couple of hours ago. I had pain for several days in my left shoulder and now I know bursitis was the cause of it. They drained it and then filled it with Corticosteroids and gave me lidocaine patches to put on the injection site. Am feeling a bit better tonight and he said it may take several days to get the max relief. I guess the x-rays showed pretty advance arthritis too. I'm grateful this was an easy fix meaning it won't impact the quality of my life going forward.

Glad you’re home and comfy.

This really is me.



I have almost 7,000 pictures on my computer dating back to 1994 and many others in scrapbooks and boxes. I’ve spent more than a few hours digging through them lately. Did you know I was young once? Really I was. :)

Anyway I’m glad I hoarded them so that we could revisit the past. I’m trying to organize an evening or two for us to get together and look at them. We’ll end up probably laughing at each others antics and maybe shed a couple of tears when we encounter those special moments.

May I suggest that you not wait to visit your memories. I think it would be more fun absent the sense of urgency that dying often evokes.

So the take away for me is you can’t make yourself interested in something. Your compelled by your interests.


Bucket list update

My neighbors are fixing me octopus this Sunday after church. My wife said she will stop and pick something up for dinner for the rest of them. LOL I’ve never eaten it so on the bucket list it went. Heck I may love it! I know pics or it didn’t happen. I’ll see what I can do.

As an aside last week they fixed me beef cheeks (jowls) in a green chili gravy and fresh garden potatoes and it was absolutely delicious. My wife didn’t eat that either.

Jump out of an airplane - I’ll bet you can guess what hospice said. Not no, but hell no or words that effect. I smiled in relief. I really didn’t want to do this, but my “buddies” are a power greater than my ability to admit it.


Unexpected Medical issues

I spent yesterday afternoon at the hospital. I’ve had pain in my L shoulder for several days and finally sought a reason. The pain was due to bursitis. They drained the bursa and then filled it with Corticosteroids and gave me lidocaine patches to put on the injection site. Doc said it may take several days to get the max relief from the Tx. I guess the x-rays also showed advanced arthritis. I did feel better until the numbing meds began to wear off, but my pain meds are keeping this in check for the time being.

Do whatever you want to do, even if others do not think it is wise. You owe this to yourself, to experience things outside of the "box". Prayers said for you.

You are an idiot and have no clue. Hospice is a beautiful program. I am a 30 year nurse, I have witnessed many deaths in the ICU when people should have been on hospice. It is usually family members that can’t accept the natural life process of dying. Instead there is much unnecessary suffering.

My grandmother was on hospice the last 7 months of her life. She never wanted to be in a hospital and she never was. She died at home like she wanted at almost 91 with all of us around her. My mother to this day is grateful for hospice and the staff that helped her to accept my grandmothers death and honor her wishes.

Uneducated comments like yours just cause fear and confusion in others.

Please tell us why you are not trying anything at this point?

If you already posted why, then please tell me what page to go read it. Thanks in advance.

For the record, I just said a little prayer for you, and I really like your dog.

Hope it’s a good day opie

That is really beautiful, and I like it :)

Thank you for speaking the truth. I invite your participation in the thread and especially if/when I say something born of ignorance and there are blind spots to be sure.

I said elsewhere something like I am going to die and its OK. It’s a natural and normal consequence of a life limiting illness. Rather than feeding false hope by seeking whatever I can to feed it I accept that regardless of what I may submit to I will eventually die from my disease. I also said the only thing I’m an expert about is my experience.

If you read this thread you would also know I’m not trying anything. I’m trying everything that contributes to my family and the quality of my life. I didn’t stop living. I think I actually finally started to live.

Thank you for your prayer.

Thank you. You also reminded me that beauty is in the eye of the beholder. AV folks are very opinionated about what constitutes beauty. They give as much attention to stems and leaves than blooms often times. That shows off the skill and judgement of detail of the grower.

If I may just expand a little on this...

Totaly agree comments like this do create confusion and fear... Sadly it then reflects on the whole palliative care community.

For whatever reason the AC fails to understand the true scientific `artform` that comes with hospice care geared towards `quality` of life.

No way is it `assisted` dying. The use of drugs like morphine are very subjective to each individual.
The nature of these drugs is of course to relieve pain; but these drugs are only as good as the trained and experienced person administering them.

The trick to using diploids is to keep `ahead` of the pain curve. Give just the right amount before any feeling of pain... too much and the patient feels the effects of the given opioids. This is where i say its an "artform".
People who are in their last stages of life can change on a daily basis and its akin to `chasing the dragon`... There is a set parameter of administration of drugs and a leeway to self administer on a PRN (Pro re nata, self administer as required) basis.

Then there is another level of `stat dosage` this can kick in when the boundaries of pain, anxiety, etc have been exceeded, and is governed at a GP level.
The thing to note is... this CHANGES ON A DAILY BASIS...
With a seasoned and experienced practitioner, this is not realy an issue, but with someone less experienced it becomes an issue that can run away with itself.... This is where the scary stories start. And perhaps the AC has sadly experienced this with a loved one.

Reading and feeling Noslots own experiences.... I do not feel there is an issue.

A well thought out and informative post you. Based upon my experience its quite accurate and reflects intimate knowledge. Thank you for posting this.

My fear is that these discussions will become the slippery slope I desperately want to avoid. They are very important discussions to be sure, but I have no interest in discussing the merits of peoples beliefs. This thread isn't about that, but hopefully something might be said to at least help some begin their quest for truth. If someone wants to begin a new thread for discussion of this topic I'm happy to participate as I can. Until then I ask you to refrain from anecdotal and emotional issues.

Thank you for your understanding.

Fred

Thank you for this, OP. Bless your heart.

Good morning Fred .... We at least this side of the pond. Hope you had a comfortable night and you feel more refreshed.

What are your plans for today?

Have you ever noticed that sometimes there are 2 agendas that will compete for the day? Theres the one I think important and then there is the one that happens. After a while you learn (or not) that plans are something to entertain you until events dictate the day. You either roll with the punches or make yourself and often others miserable trying to figure out how to avoid them.

My disease has an agenda and it thinks nothing of imposing it with or without my approval. Last night we talked about church this morning. Nothing out of the ordinary really and I woke up a bit ago sick. I began to wonder if I should now go and if I did what alternative plans should I consider if I become sick while at church.

The activity is not so much important as how disease inserts itself into almost every daily living equation. In the beginning I didn’t notice as they are small accommodations and pretty easy to make. As my disease progressed these accommodations took on life altering challenges.

Now, it seems, all of my decisions have to be run through my matrix of what I’m willing to do vs. what I am able to do and my wants vs. their needs. This is where I discover my refusal to get honest with myself. Am I really that selfish to impose my wants over their needs? Well yeah I’m dying and they should cater to my wants because of this. I am special after all.

No I’m not. Unfortunately I can be that guy, but now I just have less time to abuse others. So how’s all of this effecting my plans for today? Depends on how willing I am to be honest. I suspect we all know intuitively what the better choice is. Due we have the integrity to be honest and do we have the courage to act?

I’m sorry what was the question again?

PS This is what happens when I isolate myself and shy away from the truth. I don’t want to post this maudlin crap, but I don’t want to die under the burden of that person either. I cannot have without being had by the thing I want. I think I need more coffee.

Good morning again..... *Passes the coffee*

I expect you have, in yourself, noticed the ever increasing dissonances, for someone that has had, and still having a fulling and satisfying life. I cant help but feel that someone who is extremely intelligent with many faculties still running at 100% ish.... the Physical side is fading, finds decisions have to be thought out more critically.

I think you are a half glass full and therefore would if possible and even pushing the boat would satisfy ALL the choices you were given.

I dont think for a moment you would be selfish, let alone `put onto anyone`.... Its part of human nature, and especially within a practising christian community that people LIKE to rally around and help. In my own experience and observations I have seen people get a little upset if they CANT help or be seen to help... So no feeling guilty there Fred....Just do it lol

I think you have far from isolated yourself from the truth, you know yourself intimately within your thoughts, its more often that others are more likley to avoid their truth, for many reason that would be subjective.
I think you are doing a marvellous job in relating to us your self.
Peronally I like to read all the lines you put down...I also do read between them also. Consciously and subconsciously you are keeping us very focused, and enjoy reading your daily posts.

Im curious to know what you did/do as a living? I have a feeling it may have been in Education and along the lines of the arts or possibly nature.

See... im reading between the lines. Have a great day.

Last Edited by Cynical Realist on 08/25/2019 09:08 AM

The picture of your yard with the bird feeders reminds me of the structure you've tried to set up in this thread. Covering the poles to keep the squirrels from eating all the food and chasing the pretty birds from visiting. I buy the pricier sunflower seeds so I attract cardinals, I understand. And I buy hanging plants to intice hummingbirds to have a drink on my porch.

I'm far from my own hospice care, decades I hope, so feel uninvited to share about my fathers care as he faded into death at home under hospice. Or the hospital hospice that assisted my uncle's death and the visions he described in his last spoken words. I respect your wishes as outlined in the start.

I see others have their own agenda and respect for your wishes. I also know this topic brings up a desire to share experiences and opinions.

I have no questions, but thought I have a bit of insight to share.

I can tell you are a beautiful human being. Anyone that loves plants and birds like you do usually is.

You express your thoughts so well. Your post above shows such sensitivity to others, were you always that way or has facing the sunset of life put things into a different perspective?

I hope you were able to get to church this morning and if so that you were bathed in peace.

I don’t want to derail based on the guidelines and I hope this comment does not but I have witnessed many deaths. A few personal and many professionally. Very few on hospice, most actually not. Some are what I call “beautiful” deaths and some not so pleasant. I don’t profess to know the reasons why but some people are fortunate to leave this world with a serenity about them.

My opinion is that acceptance is a big part of it. Many people fear death, without a life limiting diagnosis. I am curious throughout your life did you give death any thought? Did you fear it?

I have complete faith you will have a “beautiful” death.

This is an excellent example of a reasoned and balanced approach to discussing hospice. Of course it will bring up desires to share experiences. Why? Because there are pitifully few resources for folks to feel safe enough to discuss this. They always seem to attract the ends of the bell curve but most of us are somewhere near the middle.

I still struggle trying to figure out what I want to be when I grow up let alone the meaning of life or death! I don't know where this thread will ultimately end up. What I do know is that it won't be a dam circus. Like pornography I can't describe it easily, but I know it when I see it.

I said I will use whatever power I have in my role as the benevolent dictator, but I am teachable so there's that.

Please share your insight.

The short answer is that I worked with people. The long answer is that there were a lot of them.

Its a fair question, but that's not relevant to this conversation. As I said I'm not an expert about anything except my experience.

Sensitivity to others is dependent upon my ability to exercise the same for myself. The fact I'm a hard task master to myself causes me to wonder if I am as sensitive to others as I believe I am. This is a great example of the kinds of affirmations someone may feel the need for when contemplating their life.

Empathic regard. It seems you're damned if you do and damned if you don't.




I'm of your opinion that acceptance is the heart of the matter. How does one arrive at this? I have no idea. I believe its an individual journey and while we may share common [ fill in the blank ], it's unique to the individual regardless.

I accept your opinion that many people fear death, but take exception to the statement without a life limiting diagnosis. I think there are those who fear death with or without it. Its one of the reasons why IMO we shy away from talking about it until or unless someone within our circle has or is dying or gives us permission in some manner.

I've witnessed death as a young man so it isn't an abstract concept and yes I've thought about death as often as I've felt the need to. I think I can honestly say I do not fear death. The manner of my death is a different matter. This is where hospice plays a crucial role. They can help to insure that the "manner" is humanely addressed and provided for. Pain management, etc. These were for me the most important discussions I had with my home hospice charge nurse.

Wow.

I used to have a loved one say that!

Oh, thank you so much!

Thank you for answering. Maybe it isn’t fear that most people struggle with, maybe it is because the idea is not something anyone wants to think about for themselves or a loved one. It is painful to think about and so most people push away any thought of it. Even though it will happen to us all. Thus it is the great unknown for all involved.

Hospice is essential for medication management and it is good to hear your concerns were addressed with your nurse.

I am curious have you made any kind of suggestions of preferences of things you might like in your final days? Do you want to be read to? Friends sharing stories? Do you like certain music? A playlist made?

Living room for the hospital bed is the perfect choice. It is your time to be the center of attention and it allows all those that love you to feel comfortable in your presence.

Many people are placed on hospice in truly final days of life. Their full decision making process is usually not intact. The cool thing about entering sooner is you have a lot more control. It also allows your family members to have support for losing you. It definitely gives you time to reflect and make your own choices.

Hope all is well.

I have rheumatoid arthritis and I have that inner battle daily as well. Of course, I don't mean to compare my situation to yours because yours is far more urgent. What I mean to say is that I somewhat understand what you are trying to relate. It has me thinking to myself if maybe I sometimes don't do things and use my illness as an excuse. Like, at what point does it become impossible and can I really find that line?

Does that make sense?

My hope for you is that you don't start to feel guilty for not being able to do what you think you should. You no longer have the luxury to just up and go, and it sounds like you have a family that is very understanding of such things. I hope you can allow them to take care of you without worrying so much about taking care of them. They understand.