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Quietstill

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Quietstill last won the day on April 15

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  1. Genden, I hope you are able to take a nap. Next time you contact a hospice nurse, ask for advice. Ask for help with this temperature, or an explanation of its possible origin. It may not be the catheter. Sometimes, if someone is very ill and weak, their temperature control can go off. Was he in pain at that time? Or just fidgety? His comfort (and your ability to rest!) is paramount. A respectful hospice nurse should be able to help with those questions if you ask them. Don't feel pushy if you ask for one nurse over another if you are more comfortable. Also don't feel embarrassed about talking to them that you felt left alone and let down by their lack of response. Ask them what is a reasonable call back time when you need help. Keep on keeping on, and deep breaths. We are holding you in our thoughts.
  2. Oh boy. I have nothing but sympathy and warmth to send. I have cared for 2 parents at this stage of life, and it was wrenching. I have watched and helped my friend with PSP go through this. Hang on. Take walks. Ask people to come in and sit for 20 minutes so you can run and get a cup of coffee somewhere OUT of the house. Talk to the hospice people. If he is in pain, can they up his pain medication to make him more comfortable? There are risks to that (depressed breathing, addiction) but it may be worth exploring. Meditation for you may help. Classical music playing softly in the background can also keep your spirit calmer as you go through this. Reaching out to friends, I hope you know you can pm me at any time, and I will respond with warmth, sympathy and respect. Deep breaths, this must be the hardest loss of all. Certainly my experience is a very pallid reflection of what you are going through. We're all here to help in whatever way we can.
  3. Oh heavens. That's what courtesy and communication is all about. If I know of a person, know what they have said in the past, stood up for with honesty in their posts, whether I agree or not I will always listen and see the good heart of the person. Have a good night, my friends.
  4. Did you know the Founding Fathers actually coined the term politically correct speech? They were talking about the ability to talk out issues so that consensus could eventually be made. So I prefer that PC be remembered as courtesy. As an attack method, no, that's not PC speech, that's just an attack. Much like any form of attack speech does not reflect the greater idea. Just like Christianity, judge a person professing 'PC" by what they say and do, not the label they may be trying to cloak themselves with. I do. And, yeah, genden is cool.
  5. Hi Linda, Thank you for finding this. I really want to respond respectfully. Here it is : EEK! EEK! EEK! Okay, on a serious level, The PC discussion is good, but this Donald Frost is a shill for other interesting ideas. Specifically, did you know that Barney Frank and Barack Obama were responsible for the financial crash of 2007? Or that the Bundys are non violent patriots? So let's step back and just look at some of what the article suggests. "Political correctness is very appealing to many people, in large part, because it demands--not requests--kindness from others." Well, yes, except for the 'demands'. In my way of life, PC requests that if we have a discussion on an issue, belittling the other person is not helpful, and therefore should be avoided. If someone says something I think is non "PC" I have a right to respectfully ask that person to clarify their statement, as it makes me uncomfortable for X, Y reasons. If they respnd, great! We can have a discussion, and both will learn about the others viewpoint. If the discussion is refused, well, that is the refuser's loss. We cannot learn, unless we all consider other people's point of views that make us uncomfortable. Frost here is using a nifty logic trick, take "requests"t and turn it into unreasonable "demands", and then label the whole concept as a tool of "the ultra-liberal hierarchy for the purpose of achieving power." I do indulge in PC speak. I ask that people do not make personal attacks in my presence, consider other people's viewspoints as valid and not belittle those viewpoints, and treat everyone as fellow human beings. Pretty radical, huh? And no, I do not believe I am "an elevated human." I just try (and hopefully occasionally succeed) at being a decent member of the human race. I am not sure that I can say the same of Donald Frost, who writes a lot of letters to the editor which point out grievous faults in others, but never solutions or compassion.
  6. I couldn't agree more with this sentence. But young people do feel they are invulnerable. What do we do if someone gets hit by a bus without insurance? Say 'oops. You just thought nothing could happen!' and let them die? Or let them bankrupt first their parents and then the community hospital? But you are right, health insurance without an element of personal responsibility does not work well. And young people across the world are often stupid, and should be allowed to live through that period.
  7. Luke, With all due respect, politics unfortunately does have a lot to do with healthcare. Politics lately has a lot to do with incivility. I have always believed that words matter. Facts matter. Civility matters. I refuse to believe that we are no longer able to discuss important issues because it might go against one person's world view of caring fro our brothers and sisters. If you have any thoughts on the current state of healthcare (policies, programs, attitudes), please feel free to join in. We need many voices. However personal attacks are neither welcome or helpful.
  8. Mike Pence, then Paul Ryan. Trump is our President. I have said that from the beginning. Besides impeachment is a legal (or it should be!) proceedure that the Congress itself has to initiate. Maybe they'll pick Representative Nunnes to look into it. Snort. My focus is on what do we want America to be? What type of country? Leaders are not as important as the will of the country's people.
  9. Be angry at honest and respectful dialogue? Never.
  10. Linda I have been absent. You, in particular of all people here, have been in my thoughts. First of all, as for Death Panels, I was so offended by that portrayal in the talking points over the Affordable Care Act that I never really addressed it. Hospice can be a wonderful thing. The ACA made it accessible to people, and allowed them to drop in and out of that category at any time with no limits (other than having an incurable disease). The original 'death panel' talk was a scare tactic as medical groups had to agree you had an incurable disease. Struggling through hospice care with my father in the '80s, and then with my mother in the '90s, when the ACA passed, I was a strong proponent of hospice as offered under that bill. It worked. My good friend with PSP had a better death a year ago under the ACA auspices than was possible for either of my parents pre-ACA. So the current 'repeal and replace'? I will fight to the death against what they are proposing. Period. I do not think they are proposing that old 'boogeyman' they ascribed to the ACA, but it is not well thought out, dignified, or helpful. I actually think it is designed to have people drop off medicaid and die in obscurity, in squalor, with no help or dignity. I used to think Paul Ryan was just misinformed or stupid, but now I almost approach thinking him heartless and evil. I can not have sympathy with a man who boasts of sitting around in college over a 'kegger' and dreaming of getting rid of people on medicaid. As for co-pays for Medicaid to make 'those people stop wasting money'? Turns out that's not necessary. New studies show they don't access health care unless it is really needed, unlike people who get their healthcare through their employer or through the private exchange. Probably because they are working too hard, can't take the time off work (8/10 have jobs), unless they are desperately ill, or their child is sick. So a co-pay means they lose twice; taking time off work, and paying the co-pay. As for me? Well, this was fun: talking to DH about how I might have to divorce him once the ACA disappears. I have a pre-exsisting condition. I am over 50. If they get rid of the protections for pre-existing conditions (today's proposal), I will not be able to get insurance. If they keep pre-existing conditions, but make insurance for people over 50 five times the normal cost (last month's proposal), I will not be able to afford insurance. If I get seriously ill with no coverage, that will wipe us out. I have to protect my DH's ability to be cared for in a decent matter. If we are not married, they cannot go after the money set aside for his care. Hence the heart breaking talk about divorce. Some country, huh? I have thought about many Trump supporters in the last few months, and felt betrayed on their behalf with what has occurred in policy plans.
  11. Hi Jetje, Welcome. The social isolation is something, isn't it? We're still at the earlier stage, although most friends and some family have disappeared. It's because of the discomfort of not knowing how to react, I expect. DH is physically fine, just stiff and lumbering. The mental issues are at the forefront. I know what you mean about the following from room to room. Luckily I knit, so that is easy to calm myself with. Lots of socks! Very small, portable, and not obtrusive. Have you ever tried a special quilting frame? I have quilted in the past, and found this amazing small and no fussy frame that works in small places. I gave mine away 3 years ago to a fellow quilter (I'm putting a link at the bottom for the frame, see if you are familiar with it). Anyway, I am glad you found the site, drop in, most CGs understand about LBD. It's no fun... http://www.joann.com/floor-quilt-frame/4794046.html
  12. Hi John, As I've said on another thread: http://forum.parkinson.org/topic/21947-pay-attention/ "The issue is actually Medicaid. A $880 billion permanent cut to short term nursing home care (after hospitalization), long term nursing home care, respite care, physical therapy, home health care aides, hospice and respite services, hoyer lifts and hospital beds for the home, wheelchairs, drugs. That's just for the PD population. If you want further info for addiction services, psychiatric treatment, children's coverage, pregnancy, homeless vet care, go to https://www.medicaid.gov/ The issue is the deep cuts to the elderly, sick, very young, and disabled among us." The AHCA is important, as the major purpose is to remove Medicaid. All Americans, whether they know it or not, use Medicaid in some part of their lives. Let your Representatives know what you think, however you think.
  13. The issue is actually Medicaid. A $880 billion permanent cut to short term nursing home care (after hospitalization), long term nursing home care, respite care, physical therapy, home health care aides, hospice and respite services, hoyer lifts and hospital beds for the home, wheelchairs, drugs. That's just for the PD population. If you want further info for addiction services, psychiatric treatment, children's coverage, pregnancy, homeless vet care, go to https://www.medicaid.gov/ The issue is the deep cuts to the elderly, sick, very young, and disabled among us.
  14. Sigh. No one ever did on any thread I was on. Why does draconian cuts to the poor and ill among us bring the president to mind? The issue remains: What type of country do you want to live in? I choose tolerance, compassion for others, and open minded discussion.
  15. Hi guys. Discussion has obviously been discouraged, but this is important. You may or may not care about the 14 million losing their insurance next year, (and yes, I will be one as I am in the open market and am in my 50s with a pre-existing condition), but the following year, 2020 is vital. That is when the 880 billion permanent cut occurs of Medicaid (corrected, see below) funding, and coincidentally, the same year an 880 billion tax break is given to the extremely wealthy. Nursing homes will suffer. No more opiod addiction treatment. No more PT, except for immediate gain (broken leg, post surgery). Read the CBO report. It is interesting. Good luck. ETA--sorry, sorry, sorry. I spent so much time working out the correct figures, that I wrote "medicare" not MEDICAID. I've corrected the post. My apologies.