I always like to understand what is ahead of me in the event that treatments fail or I tap out after so many. Does anyone have experience with Kaiser Hospice Care?
Kaiser Hospice Care: I always like to... - Advanced Prostate...
Kaiser Hospice Care
Written by
db1966
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40 Replies
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what do you want to know ? When I was first DXed at Kaiser , their offer of care for me was immediate entry into hospice … they thought I only had a few weeks left at best. That was 50 months ago. I put off going in and decided go try ADT , thank goodness, but my wife and myself got the whole speel from my hospice crew.
Maybe there is something I can tell you about that. You do have to sign an agreement that you get no more life prolonging treatments but they will keep you totally comfortable… physically and mentally and provide religious consultation if you want it. That included my wife as well.
I found that agreement kinda “ off putting “ because you are basically, on the spot , signing your own death certificate, of sorts , saying “ ok, let me die “ . Dunno how to say it but I just wasn’t willing to “ pull the plug on my self “ at the time, and that was cringe worthy. Everything I’ve heard from others related to Kaiser Hospice say it’s wonderful , very effective , comforting and inclusive. They have an excellent hospice ..that they let you do at home or in their hospice facility , inpatient , if that’s required.
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Ya the agreement you sign is very straight forward but the same with most Hospice care. It is for end of life patients down to 6 months of life. It is not for people that still have choices
yea at the time they thought I only had a couple - few weeks left … I was too far gone. Labs “ extremely “ dismal, mets pa’ve skeleton wide, losing 17 lbs a week, wracked with bone pain, sick as a dog …. But I’d never had a treatment of any kind at that point in time , they thought “ treatments “ would be pointless . I was pretty messed up , they also told me no more scans or any surgeries, they would also be pointless. Still I didn’t want to “ go “ , I asked for something … anything ( treatment ) … to give myself a chance at living a little longer. I wasn’t ready for the urn just yet and maybe I’d luck out. They gave me Lupron Xtandi Zometa and I turned out to be a “ super responder “ …. ADT put me in a wheelchair and has caused innumerable life issues but has prolonged my life 50 months so far. It makes me wonder how many more they urge into hospice that may have had a year or two left if they tried too ???
I know I’m not there yet but I have done 2 rds of chemo 28 IGRT, Lupron zytiga and xtandi. I’m hoping LU177 will work but stats are suggesting it’s a 50/50 success rate. In quite a bit of pain also. That said having conversed with you previously you do motivate me to keep going. 🙏
hey buddy … you aren’t pushing up the daisies yet … you are still smelling them. Humans can be VERY resilient , most have strong survival instincts. I had a buddy , Mark , Urang on this group, that fought the valiant fight back in the medieval prostrate cancer treatment era , none of our great current treatments existed . He had more stainless steel jewelry in his spine than a jewelry store. One rod helped hold his head upright. Eventually the V.A. Sent him home ….. to home hospice … they had nothing left for him ( imagine how that feels ). He puttered around his garden and computer hobbies for an additional 3 years before succumbing comfortably at home with his wife by his side. The point being it’s not over until the fat lady sings. If you don’t hear her warming up her tonsils , you’re still good to go. Hang in there and enjoy your QOL possibilities with your loving wife and / or family. That’s just my own perspective but it is what it is. Yayahahahaya yayahahahaya
Note: others may have and do have a totally different perspective and that’s OK too. Each … All ….of us has to do what we think is best. That’s absolutely the way it should be .
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Kaliber? Kal-El, more like!
Kaliber, Omg, great sorry. My hats off to, you fought and won.
nice thought too … but “ won “ is an elusive thing here …. Yayahahaha. Been thinking of a visit to Kaiser E.R. last 30 hours or so . Having a wee bit of “ discomfort “ on right side, spine , liver , kidney, area … breakthrough pain meds not , or just barely , helping it. May have aggravated something with my exercise bike , hard to say. No won in a stage4 croaker group, but hopefully longevity and some personal- family QOL time while we are able by dry. That’d be a “ win “ of sorts for guys and families here.
Love ya ❤️❤️❤️
• in reply toKaliber
I just had my second molar in two years ripped out .. got two gaps now .. no tooth fairy seen .. A few more and I’ll start making me some Kentucky moonshine on this hill . 😳
Kaliber• in reply to
yayahahahaya. Get Randy to make you some new ones , I’ll bet he’s good at that. I thought of new teeth a while back …. Then I thought about how great I’d look as they slid my box into the furnace…. Plus , the hammer left with 12 years of payments remaining. Guess I’d let “ that “ slide ….. considering …yayahahahaya yayahahahaya.
Love ya buddy
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Sure! I can send Hidden impressionn trays and base/catalyst putty to take an imp and mail it back 
I'm down
Teeth On, Chew On
Randy
• in reply todockam
He chipped out the composite crown only to find the entire tooth split down the center..,I saved $1k today .whoohoo! it cost only $285 to pull that molar …. If I hit the lotto I could bride it in the future ,for now just call me dueling banjos ! 😂✌️
dockam• in reply to
Once it heals I'll send out trays 😊💙
• in reply toKaliber
They just didn’t know who they were dealing with ,did they? 😎✌️
• in reply to
I’d agree to disagree! 🤙🏽
Kaliber• in reply to
hey Scott , hope ‘23 is great for you and all the family including LULU . Bright new year dawning buddy. ( oh wait … that’s sunshine after a record bomb cyclone ripped us a new one yayahahaha . )
Mark , Urang , should be the poster boy for valiant aPCa warrior . A little guy with the heart of a lion. All the spinal surgeries, …. once his head fell over on his shoulder while he was out driving his vehicle….. vertebrae in his neck crushed , not supporting his head anymore. ( fixed with another stainless steel implant ). He fought like hell for 22 years , even 3 years in home hospice. A diminutive guy that cast a shadow of a giant. Still miss him as much as ever.
😁😁😁💪💪💪❤️❤️❤️
• in reply toKaliber
As one that really was never sick or involved in with deadly diseases prior to pc I’ve read the nightmarish scenarios here for six years . Some suffering here seems beyond imaginable .. it’s the size of the fight in the dog .. sorry about Mark 😔That’s a brutal story of suffering . 22 yrs ? Whoah Nelly! Happy NY to you and the hammer ! ❤️🤙🏽
My father in law used Kaiser hospice care when dying from liver failure. The care was horrible at best. Went through half a dozen nurses. We had nurses no show no call, numerous catheter infections from improper cleaning and the nurses seemed to want to be in the house as little as possible just wanting to get to their next client. We complained to administration but nothing ever changed after telling us it would. Couldn't get paperwork signed for my wife's FMLA for her job. It goes on and on with them. My father went through a non-profit hospice and it was the exact opposite. Caring nurses, spent lots of time with my dad and were absolutely wonderful.
I think a lot of what happens depends upon which Kaiser - which hospice care personnel you get ( luck of the draw ) .. and likely other circumstances like Covid issues , staffing, budget issues .. stuff like that. Could be a lot of variables probably.
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Sorry to hear about your terrible hospice experience. Just when you really want to be able to relax for the inevitable, which, must not have happened for you. I'm not trying to make excuses, and you didn't say when this happened, but it seems every medical and care facility is experiencing very, very difficult staffing problems. My next door neighbor, who went down hill last year very quickly, had an extremely difficult time to even find a hospice which would accept him.
He had full insurance from his life long work at a major oil company so that should not have been the reason. He finally found one 20 miles away in another small town. I don't have any information as to how well he was cared for so can't add anything to that. I do know that all types of care facilities, nursing homes, hospice, etc. are having to hire staff that do not match their preferred level of experience and there is high turnover. We are not in a good era for health care.
Our neighbor on the other side just came home from the hospital (one of many in the last few weeks) dying from a very rare and aggressive blood cancer. The med school and last resort hospital in Seattle was the only one which could even come to the right diagnosis. She was on chemo, which didn't show much progress, and she decided to go in to hospice care. She is doing it in her home with a visiting hospice nurse/nurse assistant. This just happened two days ago and we are very distraught about her and her husband. We hope she gets the care she needs and, if she goes, she goes with good care and at peace. They did have to rent a hospital type bed and bring in oxygen so it was an involved process.
When we were younger and in excellent health, Kaiser provided great treatment if we needed something. As we get older, we usually need more treatment. The benefit or the disadvantage of any HMO Advantage plan is that the company/hospital gets the same income per patient, per month, regardless of the amount of care they provide. This is not an attack. It is a simple statement of fact, and it may or may not affect how much treatment the human beings making the decisions provide. We had to switch to traditional Medicare to get the treatment we needed.
Psssssst......Scary place looking to far ahead.
Sometimes best tool is keeping it in the day.....
F Kaiser! Don’t tap out!
Do as much research as possible. There are profit and nonprofit hospices. There are hospices that allow you to continue treatment. Up to you.
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