Help and Support Needed
I am so sorry Bill, hang in there and between your cds and books and our shenanigans on SR the week will be over before you know it and you ll be back home with your wife and Boswell.
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Darn, Bill, that seems such nonsense. The visits home were so beneficial for you, and I'm sure for your wife and for Boswell, too.
But, as usual your wonderful spirit is up to the challenge and I'm glad you're ready to do some reading and listening to music.
I love hearing about the close bond you have with Boswell.
One of my favorite authors is Caroline Knapp who wrote "Drinking: A Love Story". She also wrote an amazing book called "A Pack of Two". When she stopped drinking and began AA and recovery, she found an eight-week-old puppy at a local animal shelter, took her home, and named her Lucille. Caroline writes about how she found peace, joy, a bridge to the world as she and the puppy began a new life together.
But, as usual your wonderful spirit is up to the challenge and I'm glad you're ready to do some reading and listening to music.
I love hearing about the close bond you have with Boswell.
One of my favorite authors is Caroline Knapp who wrote "Drinking: A Love Story". She also wrote an amazing book called "A Pack of Two". When she stopped drinking and began AA and recovery, she found an eight-week-old puppy at a local animal shelter, took her home, and named her Lucille. Caroline writes about how she found peace, joy, a bridge to the world as she and the puppy began a new life together.
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Join Date: Apr 2007
Location: Australia
Posts: 211,445
I'm sorry Bill. I understand the reasoning but I still think this is on of those 'The Law Is An Ass' moments.
A lot of the trouble with bureaucracy is it so often forgets about people.
I'm glad you could get things from home tho. Hopefully they'll help the week to pass.
A lot of the trouble with bureaucracy is it so often forgets about people.
I'm glad you could get things from home tho. Hopefully they'll help the week to pass.
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Join Date: Jul 2010
Posts: 13,497
Well, William, I have to say that I think that is absolute drivel. A birthday party is fine, but a regular mental health visit is not? (mental health visit, meaning a visit home for the emotional benefits it brings)
That being said, I too admire your spirit and plan on being here with you, till you are happily at home very soon!
We have lots more stuff to share
, and I wonder if you happened to look at the site that I sent you a link to? It has some beautiful photos of the sort of dogs you love
big hug,
chicory
That being said, I too admire your spirit and plan on being here with you, till you are happily at home very soon!
We have lots more stuff to share
, and I wonder if you happened to look at the site that I sent you a link to? It has some beautiful photos of the sort of dogs you lovebig hug,
chicory
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Join Date: Oct 2012
Posts: 5,937
Blech! The only thing worse than being ill is having to deal with the US healthcare system! You have my sympathies. I won't even start in on my rant about our system...you are right, it's byzantine and arbitrary in extreme, but in this case the best course of action is probably to follow the rules, stupid though they are. Hopefully the visits you have already made have buoyed your spirits, cheered up your wife and convinced your dog you haven't run away from home!
Are you a pretty serious amateur photographer? I used to do yearbook photography back in HS (class of 87). Back then it was all B&W and I developed my own film. I've been planning to purchase a new DSLR sometime here, and I bought a 24 lecture series from The Great Courses on photography. The instructor is Joel Sartore, longtime contributor to National Geographic. Until I watched the course I thought there wasn't much worth taking pictures of in my area, but now I understand one can compose great pictures from almost anything.
Well, I hope you're exploiting your downtime to get some videos watched and some good books read.
Are you a pretty serious amateur photographer? I used to do yearbook photography back in HS (class of 87). Back then it was all B&W and I developed my own film. I've been planning to purchase a new DSLR sometime here, and I bought a 24 lecture series from The Great Courses on photography. The instructor is Joel Sartore, longtime contributor to National Geographic. Until I watched the course I thought there wasn't much worth taking pictures of in my area, but now I understand one can compose great pictures from almost anything.
Well, I hope you're exploiting your downtime to get some videos watched and some good books read.
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Join Date: Jun 2010
Location: Massachusetts
Posts: 3,550
Originally Posted by Anna 
Darn, Bill, that seems such nonsense. The visits home were so beneficial for you, and I'm sure for your wife and for Boswell, too.
But, as usual your wonderful spirit is up to the challenge and I'm glad you're ready to do some reading and listening to music.
I love hearing about the close bond you have with Boswell.
One of my favorite authors is Caroline Knapp who wrote "Drinking: A Love Story". She also wrote an amazing book called "A Pack of Two". When she stopped drinking and began AA and recovery, she found an eight-week-old puppy at a local animal shelter, took her home, and named her Lucille. Caroline writes about how she found peace, joy, a bridge to the world as she and the puppy began a new life together.
But, as usual your wonderful spirit is up to the challenge and I'm glad you're ready to do some reading and listening to music.
I love hearing about the close bond you have with Boswell.
One of my favorite authors is Caroline Knapp who wrote "Drinking: A Love Story". She also wrote an amazing book called "A Pack of Two". When she stopped drinking and began AA and recovery, she found an eight-week-old puppy at a local animal shelter, took her home, and named her Lucille. Caroline writes about how she found peace, joy, a bridge to the world as she and the puppy began a new life together.
Anna: I am almost 87 but I must confess that when I read Caroline Knapp's book, "Pack of Two", I sensed that I loved her dearly, a kindred spirit, one who seemed to live on the lonely galaxy in which spiritually I seem to inhabit (few, even my wife and kids, seem to know who I really, really am; as for me, I learn more about myself, particularly when I suffer, for suffering brings wisdom). So, loving Caroline, I wanted to meet her, since she lived in Boston (Cambridge actually) close by. I found that she had died two or more years ago. Another friend, another kindred spirit, dead. My sister, my dad, the cousin whom, in childhood, I had loved and love still. My maternal grandfather whom I sense is in some way still "there" and protecting me, caring for me. Dead! Yet somehow living, "there".They shall help me. I swear, by almighty God, I shall get through this. I shall be back, angry at first but, with wisdom, I shall forgive. I shall not give in. And when I am back, I shall help as many as I can, and I shall try to help them when I am here. For I have been given to do that in the time which remains.
I am here now with my books, my music (Chopin particularly), my DVD's of operas, Keats (who suffered and whom I sense somehow connected with the Infinite) my little world now, and this will help me. And you and the others at SR will be there. All over the world. You will be there. What can stop such powerful forces. I remember, when I was in a rehab for alcoholism years ago, A friend there in recovery said, "We can do this. And we shall do it together!" And so we did. I have never forgotten that.
May the blessing and compassion of our Higher Power, God or something else, come down upon us all and give us courage, and, through suffering, wisdom and forgiveness,
What ever can and needs to be done, we shall do, and we shall do it together.
W.
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Join Date: Jun 2010
Location: Massachusetts
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P.S. As i wrote earlier: I have just been informed that I can no longer visit my wife at our home fifteen minutes away (I have visited her three times since my stay here) because Medicare rules forbid family visits outside the facility except for social occasions, such as birthdays. Their having permitted me three consecutive visits probably violated medicare rules and if so was unlawful. This is a great shock to me, since I was never told of this, indeed was misled on my arrival here. If I signed out AMA, I might be considered a danger to myself or others and so might be involuntarily hospitalized without my consent. In additionI would be liable for all the hab charges. Finally I might become seriously ill (I am improving) and could risk further hospitalization on an emergency basis, which would put me back in the position I am right now. My solution is to tough it out this week and request that I be treated for anxiety. One week from today the catheter will be removed and, if I can urinate on my own, i can go home and any problems will vanish. Due to my recent three visits I have acquired here an entire library of DVD's, books, poetry. This will be my little world for a week. I shall return eventually. Return to my wife, my flowers, my dog, my home. It is a medical situation and U.S. Health care is a mess, driven by money."
*I have my own personal hazards to deal with here. As you know I am being held here against my wishes because of Medicare and Rehab rules which are money oriented, not patient oriented. That is the only reason why I am not allowed to make home visits any more.*
* * * I am less safe here than I would be at home. There is not only the problem with delayed responses to the red emergency call button, which could kill me or cause irreversible brain damage if I were to have a stroke or heart attack. There is occasional negligence by the hospital staff which could damage my urethra and my bladder, not to mention cause severe pain. This is what happened about an hour ago.*
* * *Yesterday evening, when the catheter and the catheter bag was changed over for nighttime, the attendant hung the catheter bag on the walker instead of attaching it to the bed in order that I could access the bathroom by myself without troubling the staff and if I had an emergency need to defecate. I slept all night with the catheter bag attached to the walker. They gave me enough medication so I had a good night's sleep but I awoke a little groggy, not disoriented but sleepy and groggy. At 7:30 a.m., before breakfast and before I had coffee, which I had ordered served at breakfast (they by mistake brought me cocoa instead), the cleaning woman started cleaning the room. The catheter bag was still attached to the walker. Working very fast, she suddenly grabbed the walker so could clean the floor next to my bed. She was going to take it away, put it elsewhere and failed to see that the ureter bag was hanging on the walker. She was was several feet away and the catheter was about to pull out of my penis. I sensed the danger and yelled to her to stop. She apologized and brought the walker back. No damage was done but, if the catheter had been pulled out, it would not only have caused me agonizing pain but might have caused damage to my bladder,prostate and urethra which might have necessitated another operation andt more rehab.*
* * * The "system", if I may call it that, is, from the rehab and Medicare aspect, primarily driven by money. Although there are professed concerns about patient care and safety, financial concerns on the part of the care givers and Medicare frequently place patients at risk. There are occasional instances of inexcusable negligence. There are severe risks, both safety and financial, for patients who attempt to sign out "AMA" (against medical advice), even though, like me, they have the financial capacity to finance adequate and safe care in a home environment.
* * * *I am here. Apparently I shall stay here for another week. I hesitate to sign myself out AMA, but that is always a possibility. I doubt that i shall sue anyone when I get out. Yet that too is a possibility. I have not ruled that out. I continue to be angry. At the very least I shall write this up, in an article or book. One way or another I shall get this message out, as I have brought this message to you, my friends, my very close friends. I am beset with difficulties and you have helped me. Thank you from the bottom of my heart. I shall keep posting. I hope you will too. Thank God I am not drinking. If I were the situation would be a true horror indeed.
W.
W.
*I have my own personal hazards to deal with here. As you know I am being held here against my wishes because of Medicare and Rehab rules which are money oriented, not patient oriented. That is the only reason why I am not allowed to make home visits any more.*
* * * I am less safe here than I would be at home. There is not only the problem with delayed responses to the red emergency call button, which could kill me or cause irreversible brain damage if I were to have a stroke or heart attack. There is occasional negligence by the hospital staff which could damage my urethra and my bladder, not to mention cause severe pain. This is what happened about an hour ago.*
* * *Yesterday evening, when the catheter and the catheter bag was changed over for nighttime, the attendant hung the catheter bag on the walker instead of attaching it to the bed in order that I could access the bathroom by myself without troubling the staff and if I had an emergency need to defecate. I slept all night with the catheter bag attached to the walker. They gave me enough medication so I had a good night's sleep but I awoke a little groggy, not disoriented but sleepy and groggy. At 7:30 a.m., before breakfast and before I had coffee, which I had ordered served at breakfast (they by mistake brought me cocoa instead), the cleaning woman started cleaning the room. The catheter bag was still attached to the walker. Working very fast, she suddenly grabbed the walker so could clean the floor next to my bed. She was going to take it away, put it elsewhere and failed to see that the ureter bag was hanging on the walker. She was was several feet away and the catheter was about to pull out of my penis. I sensed the danger and yelled to her to stop. She apologized and brought the walker back. No damage was done but, if the catheter had been pulled out, it would not only have caused me agonizing pain but might have caused damage to my bladder,prostate and urethra which might have necessitated another operation andt more rehab.*
* * * The "system", if I may call it that, is, from the rehab and Medicare aspect, primarily driven by money. Although there are professed concerns about patient care and safety, financial concerns on the part of the care givers and Medicare frequently place patients at risk. There are occasional instances of inexcusable negligence. There are severe risks, both safety and financial, for patients who attempt to sign out "AMA" (against medical advice), even though, like me, they have the financial capacity to finance adequate and safe care in a home environment.
* * * *I am here. Apparently I shall stay here for another week. I hesitate to sign myself out AMA, but that is always a possibility. I doubt that i shall sue anyone when I get out. Yet that too is a possibility. I have not ruled that out. I continue to be angry. At the very least I shall write this up, in an article or book. One way or another I shall get this message out, as I have brought this message to you, my friends, my very close friends. I am beset with difficulties and you have helped me. Thank you from the bottom of my heart. I shall keep posting. I hope you will too. Thank God I am not drinking. If I were the situation would be a true horror indeed.
W.
W.
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Join Date: Jan 2014
Location: Island Park , NY
Posts: 373
wpainterw, my SO and I have seen the results of this US healthcare system in action. My SO's ex who was a good friend to both of us for years was diagnosed with cancer years ago , they said he had 2 years, that was 8-9 years ago, she kept him going , taking care of his ddrs and hospital visits/meds. He lost both his homes due to the Sandy storm and moved in with us. He had medicare but also had great insurance through the state as he was a public employee for 30 something years. They milked every dime they could get out of it. He was always independent and travelled extensively in his motorhome. He went in the hospital several times in the last few months before he died last SEPT. He went in with hard to breathe symtoms and a urinary tract infection ,no doubt caused by the many times they catheterized him over and over. He was fine on a Sat before he died, I asked why he had no urine in his bag all weekend, they told me we knew nothing and moved him to a regular room against our wishes. 10am monday we got a call saying he was fine at 8am ate beakfast and was joking around. They told us they were going to put him on dialysis then. We got there 20 min later, and stayed all day at 1:30 am the next day they finally got him on the machine after he coded. They kept pushing us to sign the DNA, we didn't and went home after he coded again, they called at 5:30 am and told us he expired. The nurses did not have a clue how to hook up the machine, tried with 3 different machines, then they sent the head of Nefrology up and she told us she didn't/couldn't get the machine hooked up, she only trained the nurses! When his covers were off him I saw huge discolorations all over his side and his privates were black and elephantine, the nurse said he might have flesh eating disease, I asked then if that was so , how come you are handling him with bare hands? They tried to get us out of the room! They killed him with their incompetence but charged plenty to the insurances! No lawyer would touch a suit as he had cancer and was 81. Asked for a autopsy by the county coroner , nope the hospital did it! That hospital just paid out 62 million dollars to a 34 yo woman who went in for a ceserian birth , for some reason before she left they amputated both of her legs! Sorry for the rant , I miss my friend Angelo! Stay Strong and Well ! Bobby
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Originally Posted by Amazingglazier
wpainterw, my SO and I have seen the results of this US healthcare system in action. My SO's ex who was a good friend to both of us for years was diagnosed with cancer years ago , they said he had 2 years, that was 8-9 years ago, she kept him going , taking care of his ddrs and hospital visits/meds. He lost both his homes due to the Sandy storm and moved in with us. He had medicare but also had great insurance through the state as he was a public employee for 30 something years. They milked every dime they could get out of it. He was always independent and travelled extensively in his motorhome. He went in the hospital several times in the last few months before he died last SEPT. He went in with hard to breathe symtoms and a urinary tract infection ,no doubt caused by the many times they catheterized him over and over. He was fine on a Sat before he died, I asked why he had no urine in his bag all weekend, they told me we knew nothing and moved him to a regular room against our wishes. 10am monday we got a call saying he was fine at 8am ate beakfast and was joking around. They told us they were going to put him on dialysis then. We got there 20 min later, and stayed all day at 1:30 am the next day they finally got him on the machine after he coded. They kept pushing us to sign the DNA, we didn't and went home after he coded again, they called at 5:30 am and told us he expired. The nurses did not have a clue how to hook up the machine, tried with 3 different machines, then they sent the head of Nefrology up and she told us she didn't/couldn't get the machine hooked up, she only trained the nurses! When his covers were off him I saw huge discolorations all over his side and his privates were black and elephantine, the nurse said he might have flesh eating disease, I asked then if that was so , how come you are handling him with bare hands? They tried to get us out of the room! They killed him with their incompetence but charged plenty to the insurances! No lawyer would touch a suit as he had cancer and was 81. Asked for a autopsy by the county coroner , nope the hospital did it! That hospital just paid out 62 million dollars to a 34 yo woman who went in for a ceserian birth , for some reason before she left they amputated both of her legs! Sorry for the rant , I miss my friend Angelo! Stay Strong and Well ! Bobby
W.
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Join Date: Jan 2014
Location: Island Park , NY
Posts: 373
Originally Posted by wpainterw
Bobby: My heart goes out to you. Your troubles make mine trivial by comparison. You and your deceased loved one have been under tremendous emotional and physical strain. I admire you for your courage and the way you have met the enormous challenges which have faced you. Will the world, will things, get better? Let those who believe in God (I am not a churchgoer yet I believe in Something, Someone perhaps) let those who believe pray, each in his or her own way, that things will get better.
W.
W.
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Join Date: Mar 2013
Posts: 6,224
Heya Bill, I hope you are making progress and I hope this puts a smile on your face: this is my best mate and guess what his name is? Yep, you and he share the same name!
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Hi Bill,
I hope you are feeling better today.
Like you I am a big fan of Chopin. Most people of course are familiar with the waltzes (the "Little Dog" one comes to mind) but I am particularly fond of his Polonaises.
There is a pathos and also a bravado to them which is unequaled.
From you posts, if you were a Polonaise, I think you would be the "Heroic Polonaise"
Chopin - Heroic Polonaise Op. 53 - Arthur Rubinstein - YouTube
My personal favorite which always speaks to my soul is the "Tragic"
Chopin- Polonaise No.5 in F# Minor, Op. 44 "Tragic" - Vladimir Ashkenazy - YouTube
Enjoy
I hope you are feeling better today.
Like you I am a big fan of Chopin. Most people of course are familiar with the waltzes (the "Little Dog" one comes to mind) but I am particularly fond of his Polonaises.
There is a pathos and also a bravado to them which is unequaled.
From you posts, if you were a Polonaise, I think you would be the "Heroic Polonaise"
Chopin - Heroic Polonaise Op. 53 - Arthur Rubinstein - YouTube
My personal favorite which always speaks to my soul is the "Tragic"
Chopin- Polonaise No.5 in F# Minor, Op. 44 "Tragic" - Vladimir Ashkenazy - YouTube
Enjoy
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Join Date: Oct 2012
Posts: 5,937
Hump day! I hope you're well, Bill. I too am a big fan of Chopin, as well as Rachmaninov. Idel Birit has a great Naxos series, the complete piano works. Very nice! Marc Andre Hamelin is an amazing interpreter of Chopin and Liszt and tremendously gifted as a pianist.
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Carlotta:I like the Chopin Nocturnes particularly, especially the sad ones. Wormholes to another reality. A glorious and uplifting world, like Keats. That spiritual world is coexistent with the reality which we perceive, and also exists within us. It is a glorious world and our true home. It is there , right now. And we can find it through great music, poetry, exceptional persons, like Buddha. Can we call it a "higher power"?
W
W
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Originally Posted by MythOfSisyphus
Hump day! I hope you're well, Bill. I too am a big fan of Chopin, as well as Rachmaninov. Idel Birit has a great Naxos series, the complete piano works. Very nice! Marc Andre Hamelin is an amazing interpreter of Chopin and Liszt and tremendously gifted as a pianist.
I hope that my saying all this does not make me appear as a musical snob, self important, lacking in humility. The works I have mentioned are not only great but they are easily accessible by everyone. They stand alone. It saddens me that so many younger people today seem to remain ignorant of them, and may remain so all their lives
W
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