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Old Mar 19, 2018, 02:50 PM
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luvyrself luvyrself is offline
Poohbah
 
Member Since: Dec 2015
Location: Phoenix
Posts: 1,310
Quote:
Originally Posted by Rose76 View Post
I think hospice as a modality of care has its rightful place. The classic hospice situation is a cancer patient who has gotten to the point where further radiation and chemotherapy is more burdensome than the cancer those therapies are supposed to treat. Hospice then shifts the focus away from attacking the cancer and moves it toward treating pain and psychological distress. The patient and family accepts that the diagnosis is terminal and tries to make the best of the time that's left.

I worked as a private nurse for a wealthy lady who was getting chemotherapy to treat her cancer, which was terminal. The chemo made her horribly sick and she suffered after each treatment. She got chemo up until three days before she died. That's a good example of someone who should have been transitioned into hospice care.

Though my s.o. is now diagnosed with probable cancer, he is not receiving any treatment for it - no chemo, nor radiation, nor surgery. There are no "heroics" going on. He doesn't even have any pain. But he has gotten repeatedly very sick with respiratory infections . . . that had him feverish, extremely weak and mentally confused. I brought him to the ER for the URI. They admitted him, treated him with I/V antibiotics and discharged him feeling vastly improved. They did that twice in February. (Maybe he was discharged too soon the first time.) To my mind, that's an appropriate use of the general hospital. He is currently walking, eating heartily and enjoying watching movies and talking on the phone with his family. He doesn't need a special program to "make him comfortable." He is quite comfortable. He is quite content. I've had pneumonia. It feels awful. He was very acutely sick. Now he's not. He has chronic problems, including the newly discovered lung cancer. We're not asking for any big deal cure for that. A younger man would likely be a candidate to have a portion of a lung removed. That's not recommended for him, and we understand that and agree.

He's not in need of morphine, Ativan or Adderall. I don't need visits from a "grief counselor." Neither of us wants visits by some hired "chaplain" to tend to us "spiritually." We know where the church is. We've recently been visited, multiple times, by a clergyman of our own faith.
I think the hospice recommendation was premature. The palliative care nurse stated she wanted me to explain my "values." None of her business what "my values" are. I'ld like to know what she was fishing around for. She asked me right at my boyfriend's bedside - didn't I find that his dementia was getting worse with each illness? What was I supposed to say? "Yeah, he just gets further and further out to lunch . . . a little loopier every few months." These are the folks who are supposedly ultra-sensitive to feelings and respecting of dignity. It all struck me as kind of creepy. They come across to me as kind of cult-like.
-------Your boyfriend is very lucky that you have training as a nurse. Because of that, you can yourself give him an exceptional level of care. Still, the system can be so frustrating. My partner has serious health conditions (cardiomyopathy, diabetes) and is not proactive with his healthcare, so a lot falls on my shoulders even though we have excellent insurance. For regular folks like me, with no medical training, it is so difficult. Especially since each provider has its own agenda which is often hard to decipher.
Imagine how difficult this is for an older or disabled person with failing health and some degree of dementia. Someone I know worked for a hospital system as a counselor for the elderly with lesser funds. Sadly, with todays healthcare system, I think every patient needs an advocate like you have been for your boyfriend. Wishful thinking unless we speak up, organize, lobby hard, vote, etc. You are doing such a good job. You are a very special person!
Hugs from:
Wild Coyote
Thanks for this!
Wild Coyote