Am so happy to be ALS(amyotrophic lateral sclerosis) free today, After using ALS HERBAL FORMULA I purchased from Worldherbsclinic . Going back to my farm work again gives me so much joy. I recommend Worldherbsclinic ALS herbal formula for anyone out there with the same condition.

Shelhi, also think we have a similar situation with hub's uncle, in him coming home, was there when the nurse came, though not sure was intake so maybe RN - case nurse, although they talk about case manager as social worker - is coming and bath aide, but think we thought there would be more than that but she said they don't have that anymore but like you said, there are differences in care even with hospice; others still provide it but concern is about his pain meds; was family not trained? at least they were not happy with being told he was not being given them according to doctor's orders, hopefully are aware you no longer call 911 in emergency, that they are available 24 hrs. even if not actually there. Not exactly sure how he was in rehab but not able to feed himself at home

DEPLATT, thought had done this already, but think we have a similar situation with hub's uncle, although think was really more aunt who didn't want him placed, although he actually was already there for rehab but they felt he should stay, not entirely sure why she didn't, so they brought him home, but his situation has been more like shelhi's, rather than taking him off his meds, he's been left on, including his pains, but for whatever reason, the reason he was in rehab to begin with? he's in quite a bit of pain, but family member that's POA's in charge so he doesn't have them at home, so when he woke up in the night the other night in pain and wanting them, aunt, who'd just seen the paperwork where he'd done this, had him call them to bring them, where he would want her to, but since he did this without telling her she felt he should, so he did, but they didn't really want to bring them, not sure if prescription had been changed because of rehab, but he'd not been given his bedtime dose, which is part of why he woke up in pain. He has Parkinson's and had lost the ability to swallow but maybe because of rehab? he did regain it so since he's been home they've been feeding him sandwiches, which he never ate before

Palliative care is feeding tube insertion so the family will not watch their loved one die of dehydration, whereas Hospice will keep them drugged until they pass and not use a feeding tube.

These comments are wonderful. I was surprised when a Candian reader couldn't get hospice care for her mother. She could get palliative care. Even in the States, it depends on where you live. My community has palliative care for those who are in the hospital but want/need unusual pain control but we also have hospice care for patients whom the doctors declare have six months or less to live. Then, insurance covers hospice which can be delivered in nursing homes, hospice facilities or the patients' homes. At this time, no more curative drugs are used.

If I had to choose between having my last few months being treated for a disease that even the doctors say won't be cured or spending the time with pain control and living the rest of my life enjoying it to the best of my ability and enjoying my family, I'd choose the second in a heartbeat. For me it's quality over quantity and we should have the right to turn down painful (or simply miserable) treatments that are not going to help and accept pain management and loving care - if we want. If we'd rather go on with treatment, palliative care should still be available, though, sadly, it doesn't work that way for everyone.

Like nursing home care, hospice care varies greatly by community. This breaks my heart but it is the reality. I'm blessed by a community that (so far) supports both of these types of care.

Thanks again for the terrific responses.
Carol

My comments were referring to Alzheimer;s patients. not head injuries. Hospice does not let the beds get cold as so many patients are available to occupy them. It is unfortunate that AD is terminal and stages have now advanced from 4 to 6. Medicare is very tight in these facilities and nursing homes need sufficient record keeping to maintain payment eligibility with a time frame requiring movement to a palliative status.

Why would a doctor or nursing facility want to lose a patient? That's income not received if a patient dies, so there is no incentive to end their lives quicker.

Example, my Mom had a serious head trauma due to a fall which accelerated her in the final stage of dementia. After "final stage" that are no more stages. What I did was do research to learn all I could about head trauma and the stages of dementia so I could understand the physical and mental process. Thus, nothing came up as a surprise.

Hospice was wonderful keeping my Mom comfortable. I would have been devastated if my Mom was spending her final days in horrible pain. No one would want that for a loved one.

The entire system is dedicated to one factor, they the patient are going to die anyway and Medicare agrees that it is a waste of money to provide interdisciplinary medicine in hospice. The idea is to deteriorate the patiient to a point that they can go to palliative care which is the dying bed. Forget the patient and the family who expect more but AD is not curable so deteriorate the patient to cut back on expenses. I sometimes think we are living in a strange country. My remarks below are consistent and I challenge anyone to refute them, the facts are the facts.

I recently went through this circus with my mother also, who was in her early 80's and had multiple health issues. My experience is that palliative care doesn't really exist. It was discussed and it sounds like a great idea, something everyone wants, but it doesn't really exist in reality. Basically, hospice and palliative are the same thing. But even with hospice there are great differences in care. After asking for palliative care, it turned out my mother had to go into hospice to actually attempt to receive any of the much touted services. That said, she never did get any such care. Even after going into hospice services (not into a facility) she received no reduction in medication or testing, in fact she ended up on more medications. Other than the salesman and the intake nurse no hospice personnel ever met with us. Despite that we practically had family members camped out in her room due to issues with the "skilled" care facility the hospice case nurse always happened to be there at other times. She was doing so well at the skilled care facility and we had so many problems with the facility trip that she (and the family with the agreement of her doctors) wanted to come home. So she ended up on our doorstep with all her medications, including morphine, with still no meeting with the hospice nurse or training of the family in giving meds or what to do in an emergency. My mother immediately got significantly worse, and went from someone who was dressing herself and playing bingo to being in pain and unable to feed herself. After two days of suffering, during which the hospice personnel were of little use, and the obscene circus of getting her to a hospice facility, my mother spent hours screaming in pain and fear before they were able to finally give her appropriate medication - for her pain but not for her breathing (she had COPD). The hospice facility didn't know her or her medical condition and her case nurse never bothered to show up. Personally I think she died of an asthma attack or because she didn't get any breathing meds (which were not curative or excessive but simply allowed her to breath). She died within five hours of getting to the hospice, much of which was spent suffering. From my experience there is no such thing as palliative care and even the much touted hospice care is just a sales pitch.

Palliative care is not necessarily related to cancer. It is any care that just eases symptoms rather than aggressively attacking the illness. There was an interesting article a few years back -- either New York Times Magazine or the New Yorker -- that posited that people who have palliative care often outlive people who have aggressive treatment for some diseases, and live more comfortably, too.

Thanks for providing some education on this subject. I am curious about palliative care in dealing with a whole host of chronic issues that are becoming increasingly difficult to manage for my mom, but everywhere I turn I find it is always attached to cancer. I worry that providers may be "too narrowly specialized" to deal with a broader range of diagnoses that could benefit from a "team" approach. Nonetheless, I plan to dig into this...On the other hand, one thing I have no knowledge of is what Medicare's position is with regard to palliative care. Guess I better get busy and figure that out.

With my dad, my step-mom could not be convinced to put him in hospice care although it was obvious to everyone (including my M.D. brother) that he had less than 6 months. She was convinced otherwise. In any case, we managed to convince her to agree to palliative care, without it being hospice. The only disaster was the last day/night of his life which was during a holiday; he was suffering terribly but because he was not "hospice" the nurses lacked discretion to give him more morphine without a doctor's approval. Hospice can be extended past 6 months if the person does not conveniently die during that time, but it allows much more flexibility than "only" palliative care in my experience.

I have 6 chronic diseases that I manage with faith, diet and exercise. I was diagnosed 2 years with ITP disease, a blood platelet disorder. This February I fell and broke my entire left arm. I managed all these problems the same way - spirtually - with God at the helm of my healing. Curious? Contact me.

I still do not understand the difference between palliative care and hospice. My best friend was in a terminal state, fluctuating between CHF and Kidney Failure. She was more than capable of eating and drinking and making decisions for herself. She was talked into accepting hospice because she didn't want to go to a nursing facility. She just wanted to spend her remaining days at home with her cat. I watched them take her home, remove all medication she was on, leaving her in a tremendous amount of pain, partially due to abrupt cessation of all these meds, which included insulin, an antidepressant and anti-anxiety meds along with twenty-odd others for her physical illnesses. Of course this was replace solely with huge doses of morphine, which pretty much rendered her unable to communicate anything but fear and pain. After one day, she was no longer able to eat, so that pleasure was removed from her. The hospice workers told the family they shouldn't bother her, that even touching her was disturbing her. Within two days, she was changed from morphine to dilaudid and she then remained in a mostly unconscious state for days. I always thought hospice was there to care for the patient and family. I saw none of this with this agency. My friend's last two days were spent at a different hospice, in their facility, after an absolute circus ensued at the house, first transferring her to a new bed when the first one because inoperable and then the discovery of eight bottles of insulin stolen from the home refrigerator. Tell me, is THIS was hospice is for everyone, even leaving out the theft? I was horrified to see my best friend treated in this manner.

I concur with the nomenclature differences. We are all fighting disease with different protocols.. Medicare and NHS certainly have evaluated a major difference in nursing home care and uniformity is long overdue. From my observation nursing homes in the UK have fee's regulated plus a means test where required but the services provided are more sympathetic. Comment . based on my personal knowledge just having lost a dear cousin in Glasgow to dementia.

My sister passed away from an aggressive form of cancer just over 7 months after being diagnosed. She did not receive hospice services until 2 weeks before she passed away and from what I am reading about palliative care, she should have been receiving this from the beginning. This happened 8 years ago.
I think doctors, families, insurance companies, and hospitals all need to learn more about palliative care and how it benefits everyone. I don't know if doctors are afraid to bring it up because it might sound like they are giving up on a patient and I didn't bring it up because I didn't know what palliative care was at the time.
The same for hospice....I told my sister's doctor to tell us when it was time for hospice to be involved; he should have referred me to a hospice organization right then and there. But he didn't and we lost out on all of the things hospice could have helped us with until days before my sister's death.
We have a long way to go in treating those with terminal illnesses with dignity and respect.

I think part of the reason that the difference between palliative care and hospice is confusing is that in much of the world they are the same thing and the terms are often used interchangeably.
From my time reading on this site I understand that in America "hospice" is exclusively used to describe a federally mandated and regulated program that focuses on a terminal diagnosis, Those whose diagnosis doesn't qualify them for the program are essentially receiving the same treatment with "palliative care" or "comfort care", but without the benefits included in the hospice program.

Well presented but for an AD patient reaching the end cycle Medicare seldom authorizes interdisciplinary medicine? If the patient is terminal and beyond help, the team is reluctant to press forward. My premise is that the medical interdisciplinary input is not applicable when the patient is beyond help. The major problem to overcome is the process of swallowing which is a sign that the end is near.