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It's my experience that "time" allowamce is what it is- 6 weeks with another 6 weeks per approval of doctor in which doctor must show 1. Patient is benefiting AND improving with care. After that 12 week total is exhausted, nursing home is the next allowable but we all know nursing homes paid by medicare or medical have income restrictions- both monthly and assets. If dad isiddle imcome which isnt much more than $1200 per month, we caregivers are stuck. After medicare refused continued treatment of mom, i put her in a way expensive facility for 6 months until she ate through have her savings. Then i rented a small home for her. Then i discovered that because her income is slightly too high- there is zero assistance. No in home anything, no respite care for me, and i cant afford to pay anyone. So i have accepted my life. My husband and i now live apart- albeit only 2 blocks but at least when other family occasionally offers help- i can go home without mom. Its not ideal but all this new Obama Care and the 2030Agenda IS the issue. I spoke with 2 in the healthcare profession and these U.N. Laws seem to NOT CARE ABOUT THE ELDERLY OR THE CAREGIVER. I was shocked to discover last week the U.S. was put under the U.N. and that our healthcare and educational system was alsi very slyly placed under the U.N. thus why Federal Appeals go no where - the Federal employees arent even aware - yet - there is is little to no employees because as the appeals go up the chain- they go out of the nation and then, stop dead at the U.N.
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I have been through this before. The appeal process is frustrating. The hospitalist will discharge home if they feel the outpatient doc can handle the remainder of the care. The appeal sucks, because if it comes out not in your favor, then you have 24 hours to get your loved one out of the hospital before they start charging you for the hospital stay. The care at home sucks, because the insurance will only cover a certain amount even if a person needs more. They sent my dad home so deconditioned he couldn't even lift his arms, and still with a fever. They always send a patient home but don't start services until the next day, and even then, the next day a nurse shows up to do an "assessment", and services don't start until she gets approval from the insurance company. They set up care 2-3 times per week, and when I said what am I supposed to do on the other days her response was "well they never give more".
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Bet the hospital's bottom dollar that insurance is pulling the strings of said doctor.
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My mom went thru the same. You need to fire the doctor before he writes the orders and then a new doctor will step in.
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GA, I want to add that by the time I got to the hospital at midnight, the hospitalist came in to talk to talk to us and told us that they didn't think mom would survive the night. So, don't despair if it comes to that. Prediction in these situations is always tricky, but I was glad to be forewarned that we might be looking at the end. Good luck today; I'll be thinking about you and your dad.
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GA, so glad that Babalou can be there for you, there is always someone out there to answer the most complicated questions when they arise. Good for you, Babalou!
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Babalou, I've taken notes on your last post. It's really helpful. I understand now how the respiratory crisis happened. It sounds similar in action, not necessarily in specific organs, to when my sister had a bacterial shower after a chemo session. When the line was flushed after the infusion, she shortly thereafter began shaking uncontrollably.

It was explained by one of the chemo nurses that even a small amount of bacteria that can get in the system during the flush rushes through the body and causes the reaction.

Those bacteria are bad bugs!

I can imagine the discomfort of the bi-pap; my father was on a vent mask and he hated it. I remember when I wore a respirator while doing some sanding and then painting, and I felt so confined, so trapped, and almost disoriented.

Thanks so much for sharing your experience. If Dad gets a chest tap and something happens very quickly in his breathing, I'll understand and not panic.
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GA, I'm glad that I hit the correct button while guessing what had you worried. What happened to mom last year was this; she'd had pneumonia and that had been treated with antibiotics. She fell at the NH, so they transported her to the hospital . After they checked out her hips, pelvis, they noticed a fairly large increase in her previously stable pleural effusion. She been tapped several times before this, so my brother said sure. They started drawing fluid and she suddenly started gasping for air (I wasn't there, I'm recounting what I remember the doctor and my brother telling me later, so forgive an inaccurate info). They wanted to intubate etc (see previous post). What they determined afterwards was that in drawing off the fluid, mom's lung, previously somewhat compressed by the fluid, was able to expand. In doing so, a small pocket of bacteria ( from the pneumonia) "bloomed" and set her into septic shock. The bi-pap and 2 different intravenous antibiotics saved her. 10 days in the hospital. The she went back to rehab/nh, but with contracture in both legs, has very limited ability to walk now.

We were instructed to bring her back to the pulmonologist for followup and a possible outpatient tap (really?), but when I called actual doctor, who is the head of the pulmonology service at the hospital, he said "stop poking holes in your mom. Let this progress at it's own rate and make sure to sign her up for hospice when the time comes. They'll be able to use morphine to ease her breathing and to keep her from feeling like she's drowning". (She's got congestive heart failure). I know that we're losing her; I just don't want it to be awful for her. I hope some of this helps.

My mother was very firm about not ever being intubated, and we intend to honor that, unless it's a temporary situation like surgery. When she was on the bi-pap, she looked so panicked, we just kept telling her that it wasn't a tube, just a "breathing thing " just like Mike ( my husband has a c-pap) has"
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Babalou, thanks for that information. Dad's pulmonary doctor yesterday said she'll try a diuretic, then a chest tap (as I sucked in my breath remembering how difficult and painfujl this was for my sister), so I need to find out more about what the hospitalist has in mind.

Were your mother's breathing difficulties specifically from the chest tap, or complications from something else? Do you know how it caused the difficulties?

If the former, I'll be on the lookout for that so it won't be unexpected, but, gee, they've already got him up to 5 liters and if he has more respiratory difficulties, they might also talk about intubating.

Thanks for the heads up. Now I can be prepared for what might happen tomorrow. And I'll ask for a bi-pap to be tried first. They've been using a vent mask; maybe they could use that.

The pulmonary doctor said yesterday that the pleural effusion is what's necessitating the high oxygen level, so depending on whether they administered Lasix or Bumex today, there should have been some change.

My nurse relative told me Bumex is 40x stronger than Lasix, so the fluid should have been rushing like Niagara to leave his body if that's what they gave him this morning, although yesterday we discussed use of Lasix.

I'm trying to contact the oxygen supplier to see if they even have portable concentrators that we could use if the need is 5.0 or above - otherwise, I'll have the back seat of my car filled with oxygen tanks!

I''m really starting to get worried now.

Thanks for your advice and comforting words.
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Oh, GA, I'm sorry things aren't going well.

Re pleural effusions, my mom has had her chest tapped several times. Last time they did it, she had some terrible breathing difficulties and the ER personnel wanted to intubate. We said no (she's got a dnr/dni), so they used a bi-pap and that worked.
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Everyone, thanks for the good wishes. I thought we were over the hump, but now there are some more issues as well as potential decisions with which I don't agree. I'm still doing some research to prepare for tomorrow, but hopefully I can steer them in the correct direction so there isn't a confrontation or a decision that's devastating.

I thought this was a simple pneumonia but it's gotten complicated.

I'm going to need all the chocolate energy you can send!
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Jeanne, that sounds like great advice about the cake! Is a bomber cake chocolate? That would be my only concern.

GA, hoping you are coping ok today, and that there are improvements for your Dad.
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I'm going into a chocolate stupor!
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Glad things are going in the right direction, GA. Sending you chocolatey hugs!
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About the cake ... that is a new one for me, too! I don't think the design of a B-29 is "copyrighted" LOL. Mickey Mouse is copyrighted/trademarked/whatever. So is Disney's version of Cinderella, and Mulan, etc. Bugs Bunny? Yes, he is off limits on a commercial cake, unless the bakery has designs approved by Loony Tunes.

But a B-29? Who is going to sue? Boeing? I admire that bakery's integrity, but I think they don't have a good grasp of intellectual property laws. I guess their motto must be "better safe than sorry."

Getting a bakery to do an airfield and placing a model plane or a plane-style pencil sharpener or a toy, etc. is a good alternative. I've known many home-based cake decorators who will do a lovely beach scene with seashells and big rock and then the mother takes it home and places a Little Mermaid doll on the big rock. I once did a lovely park scene, and placed a hinged porcelain box of Madeline on it.

You may or may not be able to find someone to print a B-29 on rice or frosting paper for a cake, depending on the picture. No one wants to get into trouble with copyright infringement! But there must be thousands of photos of that plane that are in public domain and you can use Bing to find them. Just limit your search to "public domain" on the license drop-down list.

(I once took an invitation I had designed into a nice copy place for many copies. The clerk told me he could not put that photo on the invitation, because of copyright concern. I asked for the manager. I said, "This is a picture of MY son. I took it with MY camera, in a public place. I OWN the copyright. And I want copies!" I got them.)

You can't blame businesses for being careful, but there are ways to get what you want on a cake, without necessarily becoming a cake decorator. :)
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So glad there was not a premature discharge!
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Garden, sent JeanneGibbs a question about your cake.
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I don't think I can pull together the bomber cake, so I've decided to work on that for a special occasion after Dad comes home from the hospital. I do have a B-52 pencil sharpener which I could use on a vanilla airfield with chocolate ribbons for the line markers.

A cousin's nephew was a submariner cook; I may contact him to see if he has any military patterns. Guess I'll have to learn how to decorate cakes and be forced to eat all those tempting samples and experiments.

On the issue of the discharge, it's now been resolved, but in retrospect, I am so glad I replaced the PCP with a hospitalist. It was shocking though how unprofessional the PCP became in his comments about other medical specialities.
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GA, wish I had seen this sooner. Whan L was hospitalized with MRSA, in bed for two weeks, they thought they would discharge home. NOT! I requested an evaluation by PT, told them to even get in the house he had to be able to walk up, one step at a time, separated by sidewalk or landing in between, to even get in the house. PT brought in a step, L was not able to step up on it. Think of an activity, going to the bathroom, that he has to be able to do by himself safely. Have PT evaluate him. L ended up in rehab for three weeks to build up his strength.
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The airfield and the B-29 on his cake sounds great. Thanks too from you and Country mouse - the cake brings a smile to me. I have a friend who does copyrighted art. I'll ask her if she thinks extending it to a BD cake is a little far reaching. This is new to me too. I'm glad my perspective helped you in this process of just trying to sort through it all.
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CM, Thanks - I'll take chocolately hugs any time!

Checking on options for the B-29 cake....wish I'd thought of it sooner.

I do like the idea of an airfield on the cake though.
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It's a bit of a cheat, but I have heard tell of internet companies who will make edible transfers of photographs (on rice paper, presumably) - would that do the trick? Then the bakery could just give you a nice flat airfield to land it on!

I'm so glad you're making progress. The dire communications gremlin strikes again, what a hideous couple of days it managed to create for you. Chocolatey hugs
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Just a quick comment as I'll be leaving for the hospital shortly.

I've encountered the "family do it all" attitude, found it insulting and irresponsible. I guess working for attorneys for years made me a tough old bird, although sometimes I'm actually a softie.

We made a lot of progress yesterday, I'm switching focus today to planning a small birthday celebration tomorrow, but will have my guard up for those voracious discharge planners who want to gobble up my energy and resistance.

I'm also moving past the "who said, who did or didn't do what" issue with regard to the discharge. There were clearly some issues, but I'm going to step out and leave that to the hospital staff to deal with.

PCP - lots to say about that but I'll hold my wicked tongue until it's been tempered by some chocolate, which I ran out of last night in my frustration.

This is my dilemma for today - how to get a bakery to make a birthday cake with a model of a B-29 when they won't deal with making designs from any copyrighted material. That's a new one on me.

Thanks, everyone. I really appreciate the support and suggestions.
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At this point providers have to wrangle with the insurances which costs them more in the form of hired staff. Cost savings is a driving force to get the patients out of the hospital. I'm glad you got them to say discharge is part of the future plan instead of the immediate plan. They plan with the expectation that a "responsible party" i.e. family or home health will take over. Any responsible parties are now left holding the bag and taking on a lot of responsibility they are not really qualified to handle. This puts excess stress on the patient who is alert enough to realize he or she is, in fact, now a burden to others. The care givers are stress because they realize this is more than any human can handle without lots of help. Care within an appropriate setting is essential for all of your family's well-being. When parents realize they are truly a burden to others they focus on that, making their last days very sad. Continue to advocate for each of you even if it does involve your wrangling with the insurances to get them to pay for care per the insurance contract. I think you are doing real well motivating the providers to be fully accountable to you.
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GA, I want to mention something about your feeling that you have about saying you can't /won't sign for dad to be released from the hospital. I remember so clearly the first time I did this (and it was because of knowledge that I gained here that I was able to do it). Mom had been hospitalized three times in two months (out of control bp that settled down once she was in hospital ). The doctor came in to say they "had" to discharge her and I replied that I wasn't signing until they figured out what was wrong, and had a plan to fix it. The doctor walked out, a bit taken aback (I'm not a very assertive person ) and mom burst into tears. "I'm going to be thought of as a difficult patient" she wailed.

It was one of the few times I lost my patience. I asked if she thought I really had all this time on my hands, running to hospitals, losing work days, not caring for my husband with serious cardiac issues. I told her we had to get the problem FIXED so that she could get back to leading a semi normal life.


She never complained about my handling of her medical issues after that. Sometimes you have to stand up for YOU as well as for the patient.
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Oy, hospitals. Was this a trial balloon by the PCP to see how you'd react?. Get lots of rest. Drink water. Breathe!
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Rest up. The 'discharge planners' can have a myriad of ways to jerk someone around, including messing with your sanity. So the plan did not exist because it was not 'written'. Good for you Garden Artist, you are today's Number 1 patient advocate! Good for you! Just being there, Dad is blessed to have you! May tomorrow be a better day for you and your Dad.
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Forgot to add - I couldn't even protest the discharge plan because the order had never been written! But it was my understanding Monday when told about the discharge Tuesday that it was a planned event. Not so.
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Just a quick update...this has been a very long day.

I dug to the bottom of the issues and discovered what appear to be conflicting stories, but I did make a lot of progress this morning. The alleged discharge order was never written or signed. There's some confusion but I'm going to take a "between the horns of the bull" position and write a letter to someone in admin suggesting that it would be helpful if discharge plans be clarified in the charts before advising patient's families. This seems to be the crux of the issue.

I don't intend to start or get involved in personnel feuds, so I want to take the position that as a patient's relative, I see some areas in which improvement could be made to enhance the already excellent care provided to patients.

At this time there are still some issues with the vitals but I understand more (from a relative in medicine) how they interrelate. Discharge date is only being now discussed as "when" it happens.

I'll write more later when I get caught up on my sanity and sleep.

And I really, really do appreciate the concern of each of you as well as your suggestions and support.
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GA, I really feel for you ! And the discharge folks are bullies. Do not sign his discharge papers. Dont let your father sign. Raise heck with the floor physician or Dir. of nursing. Social worker ought to be at your beck and call as well. Keep us posted.
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