My father was on the hospital for four days and when they discharged him the pcp nurse is now saying we declined skiff and hospice. Yes, I declined skilled nursing facility and rehab facility, but did not decline hospice. The latter which I do not recall being offered. I feel like I am going insane trying to figure out what I am being told as well as everyone is passing the ball around as to who I am supposed to talk to while my poor father is in fricking Misery and I'm feeling like I'm on the edge of a nervous breakdown if not currently in it. Six days later I am just now finding out that yes he has metastatic bones due to prostrate cancer.
Meanwhile over the weekend since the norco was doing Nothing for his pain I got him on the phone and set him up with a medical marijuana card. And that at least is managing his pain and helping him to sleep. A blessed Miracle!!!! As I think I would have lit my hair on fire if I had to go through all of these endless phone calls and having him in excruciating Pain. I've never been a fan or user of the stuff, but what it has done for my dad has made me an overnight believer.
2. These alleged declines probably came from the discharge planner in the hospital; they're usually the ones in the position to coordinate follow-up care.
3. What was the reason for his hospital stay?
4. Now that it's known he has metastatic cancer, have you found an oncologist? The PCP could recommend one, if you have confidence in his/her opinion.
5. I'm unclear what the current situation is....are you lookig for a SNF facility? What stage is the cancer and what treatment if any is recommended? Given that hospice is involved, is that your focus now, to find a good hospice facility?
6. It sound like there are too many people involved; I would think you need an oncologist, but I'm not sure about a PCP at this point - I guess it woud depend on the stage of the cancer and its prognosis, as well as why hospice was recommended as well as a SNF.
Could you elaborate a bit?
OR, "What is the doctor recommending?" "Can you say that again in a way that is understandable to a non-medical professional?".
The term re-hab is something else a lay person would not understand. Ask again:
"What would rehab be able to do?" Because they can strengthen the patient even if returning to fully functioning is not the goal.
Perhaps, without enough accurate information, you have declined helps that were needed.
He hates western medicine with a passion and that is why he is in the situation he is in now. No one knew about his hip. He agreed to do the pcp which he hadn't been to in five years when we convinced him it was in his best interest to get his decade old hernia looked at.
He went to the er because I panicked when he had a seizure and didn't know what to do, so I called 911. The docs were like vultures. One doc gave him an endoscopy And a colonoscopy. Both clear of cancer and no ulcers.
He also had a blood transfusion since his hemo was down to 7.8 and a bone scan which insurance before the er visit denied.
And the msdf on all the meds they prescribed. Which even though dad hates them is taking
Home health seems more like nurses that come around once a week to see if he is still breathing. They do take his vitals, but beyond that it's dismal.
My plan is to go for the palliative and the luprene shot. For the pain MM is definitely been the best. Plus it helps with sleep and appetite as he weighed 127 pounds for his 6'2" frame. He is eating. I feed him three times a day with snacks I between and loads of watermelon since he hasn't been big into drinking water lately. One nurse hotline also suggested Popsicles. I'm trying to keep the processed sugars down as I understand cancer loves sugar. Until his antibiotics are completed for the uti I have Tomane sure not to give him citrus. Which is a bummer since a friend just gave me a ton of grapefruit a that he and I both love. Straight up with a dash of brown sugar, though I've switched that to agave. Not quite the same, but better than super tart.
Thank you again! It's an enormous help mentally, emotionally, and spiritually to have a place to vent, ask questions, and ease the immense anxiety/fear/isolation that comes with all of this. It's easy if a person isn't in the thick of it to be flippant and proceed as if every little thing is either a piece of cake or no big deal. But when you are, all those tiny minuscule details are astromical. Pile on the big stuff it quickly spirals into a massive black hole of intense pressure.
"Lupron Depot Side Effects
What to expect during the first few weeks
During the first few weeks of Lupron Depot therapy, testosterone levels will increase before they fall. Some men may experience temporary new or worsening symptoms of prostate cancer, including urinary symptoms and bone pain. If your cancer has spread to the spine or urinary tract, urinary blockage or pressure in the spine may occur and can sometimes lead to paralysis, which may be life threatening. You may require close medical attention during the first few weeks of Lupron Depot therapy. Notify your doctor if you develop new or worsened symptoms after beginning treatment."
I'm not trying to frighten you and they probably won't occur -- just FYI.
MM sounds good!
Hugs to you, Monkeygirl.
The consult from unitedpatientsgroup is 150.00 and who knows what they would say. In low times I imagine them saying, "well I don't think it would have the impact on his bones, but it'll make him feel better. Thanks for asking." And in better times it's an array of "yes, it'll be simple and we have lots of success stories from real people you can talk to directly and see their progress from being given two weeks to now three years later cancer free and living a normal life." And then the anxiety about how much it will cost. A complete unknown. First thing is to go back and prioritize. A daily weekly exercise.
Right now focusing on the positive. He is free of pain, lucid, and will always be the best Dad ever.
To the times during all of this madcap experience when I look at him and feel mass love and nothing else. Those make it worthwhile. Treasure them.
A few weeks ago I had a terrifying side effect from an antibiotic. It was called sulfatrim, I think, and it not only gave me the usual ones (nausea, stomach burn), but it gave me INCREDIBLE anxiety and depression. I called Telehealth Canada and spoke to a nurse, which was useless; I called the ER that I'd gone to -- equally useless. Then I turned to good old Dr Google and guess what turned up: anxiety/depression in 5% to 7% of ppl who took it. It took me 10 days to get over and I'd only taken two! Never before and I'll tell you, never again.
I only say this so that you can be on the lookout. No anti-b has affected me that way before, and never again if I have anything to say abt it!
Here's another thing that I found from a Harvard-based web site:
"Hormone therapy is recommended as a palliative treatment, to relieve symptoms such as bone pain. And while hormone therapy is not a cure, in that it can’t eliminate prostate cancer completely, it often extends life for many years. By reducing testosterone levels, hormone therapy can shrink a prostate tumor and its metastases and slow further progression of the cancer for so long that sometimes a man with this disease dies of something other than prostate cancer."
Hugs again.
One step at a time, kiddo. And are you keeping a list? That always helps.
Not ALL, not even MANY -- a few MIGHT ... keep that in mind, whatever you decide to do.
Now I'm done and going to bed. Hugs.
Dr. Google is one crazy guy! Never know what kind of box contents will come flooding out with it. ;)
My favorite antibiotic is raw garlic. Everyone looks at me as if I am crazy, but it's my go to when it's 3am and I feel anything awry. Hurts like hell at times, but works for me. There was a study done reported in bbc about usual salves versus a garlic salve for the very hideous mrsa. The garlic won hands down.
Hoping you are feeling better and life is giving you happy times. Big hugs!