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Cantforget, I'm curious. When you 98 years old very sick, mentally incompetent, wearing diapers, no quality of life, how do you want to be treated. Do you have a living will that specifies any and all measures are to be taken? No morphine?

You mentioned the poor guy who wanted to end the pain so he enrolled in hospice. You then stated, "There's something really wrong with that". Please explain to me what is wrong with that.

You said you were a hospice RN. More than once, I believe. How long did you work in hospice? Did you quit because you though it was a terrible thing?
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My Dad just passed on and his last week was with hospice care at their facility. Hospice care has changed a lot since the days when one had to have cancer, or intractable pain or imminently ready to pass on. Now, patients can be on hospice, get tuned up, and start doing better, go off hospice and then, when/if they go downhill again, go back on hospice care. My Dad's story.... he had dementia and was in memory care. He fell and broke his hip socket. Not a place where surgery can fix, and besides he was 93. So hospital care and hopefully was to go to rehab for a few weeks and back to his facility with physical therapy. Well, he went downhill, due to the pain from the fracture, his dementia got a lot worse, from being in hospital (strange place) and because of needing pain meds. Finally, after a week, and no way to start any physical therapy, doctor said rehab was not going to be, and he was so out of it, they brought up hospice. Dad was starting to be too doped up to eat, or too agitated if not doped up, to eat. Hospice staff explained very clearly that they would medicate with pain meds and anti anxiety meds, but that before each dose was due, they would try to get him to drink. IF he showed a good swallowing ability, they would work towards eating and drinking and give less and less meds...try to come up with a 'recipe' that would keep him pain free, but awake. IF that worked, they would transfer him back to the memory care unit with hospice follow up if he continued to improve. My Dad refused to drink, showed no interest in swallowing at all, and if not getting the pain med, was moaning and crying out every time they had to turn him....so YES...he was getting regular morphine and Ativan, as another writer reported was used in her experience. After a little over a week, my Dad passed. There were times he had his eyes opened and connected with us family, and he was able to hear on the phone, when other family called him and talked, but he really never talked back to us and just slowly faded away. So, of course, the drugs 'helped' make that happen, however, our hospice staff were very careful to be assessing for pain and the actual NEED for the drugs...and my Dad did need the drugs. We clearly knew that if he was not going to drink, or eat, but especially not drink, that he was going to die in a short time....but the decision had to do with HIS abilities...not the desires of the staff. Hospice also provides a year of grief counseling and follow up for the family left behind and we are now getting that set up for my mom. It was offered to myself and my daughter, even though I am a retired RN and she has a master's degree in counseling and we both live out of town....so they really are quite wonderful in my opinion!
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If I had an ailing family member, I would do everything in my power to keep them out of hospice. Retaining their team of original specialist doctors. Getting them home nursing care, OR a good nursing home. A huge percentage of people become hospice patients, simply because they have tremendous pain from cancer, or bone pain/joint pain, or pain as a result of having to have dialysis weekly, and regular MD's are extremely reluctant to prescribe the proper high dosage of narcotics to alleviate their pain., whereas hospice doctors are much more liberal on the dosages of narcotics that they prescribe. I once had a middle aged man who had admitted himself into hospice (thereby discontinueing dialysys, and therby ensuring he would die within about 2 weeks), just because he couldn't take the pain anymore. He couldn't find a doctor wiling to prescribe a high enough dosage of pain meds in order to alleviate his pain. So, in order for him to be out of pain, he made the decision to go into hospice. There's something really wrong with that.
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former hospice RN. Hospice have huge lobby in Washington. Insurances and Medicare love hospice because it saves them billions, yes billions,, per year. Hospices receive around $800 per day that a patient is in hospice, compared with a one day hospital stay for a critically ill elderly patient costing insurance companies, and/or medicare approx. $20,000 per day or more. People don't realize that "no life prolonging measures", can even mean no antibiotics given for infection, no intervenous fluids, if they are dehydrated(maybe they are vomitting, or just too weak to drink water), no surgery--if a patient has an infection that needs to be drained, or tumor removed from an area of the body which is causing patient to suffer, etc. Anyone admitting a family member should go over EVERY detail of what types of care the hospice is going to provide. For instance, YOU can insist, on a feeding tube, antibiotics, IV fluids, surgeries performed to help alleviate a patient's pain--not to prolong their life per se. And you can change it at any time. Just because you agree at admission that you don't want a feeding tube, or antibiotics, doesn't mean you can't insist on those things 3 days later. Don't assume that hospices will "do what's best " for your loved one. They will do what's most cost effective for them. Whether a hospice is a for profit or a non-profit doesn't make a difference in what kind of care the patient receives; Non-profits want to make money just as bad as the for profits, because the executives are paid astronomical salaries (of large hospices), depending on how much the company makes net, per year.
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former hospice RN here,
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yes absolutely, have been there with my mom
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Take a look people. Hospices and home cares run co-jointly. The hospice as non-profit, where they attribute all of the income (millions) and a "profit" home care--which will always show minimal revenues. It is the biggest scam this country has ever known. You can access tax records and salaries for these thieves through your state's website.
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I'm sorry trunner that things were so difficult for you. God be with you now and give you peace.
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I posted all that before she passed she did pass on April 4 not may we laid her to rest today her journey is finally over sorry for the confusion I was very stressed out
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@ pamela,
strange, my mother is all over the board with her moods but in summary she seems to have reached the decision that death is the next step. when she has chest pain she strongly resists calling the hospice nurse and adamantly doesnt want any part of doctors or hospitals. doesnt want a freak show of family in her face. i understand the latter. if i were dying and my family were standing around fishfacing me id pull my own plug and bend the prongs so noone could reconnect it..
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If I had to do things over again, I would not put mom on hospice. Nana 24, I would have rather made the decisions. I just wish I had been better informed. I was the only one of 6 making decisions. Stressed out. Afraid, and so darn tired I couldn't think strait. I'm just glad she's o.k. now.
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"The Journey Towards Death
Recognizing the Dying Process

The dying process usually begins well before death actually occurs.

Death is a personal journey that each individual approaches in their own unique way. Nothing is concrete, nothing is set in stone. There are many paths one can take on this journey but all lead to the same destination.

As one comes close to death, a process begins; a journey from the known life of this world to the unknown of what lies ahead. As that process begins, a person starts on a mental path of discovery, comprehending that death will indeed occur and believing in their own mortality. The journey ultimately leads to the physical departure from the body.

There are milestones along this journey. Because everyone experiences death in their own unique way, not everyone will stop at each milestone. Some may hit only a few while another may stop at each one, taking their time along the way. Some may take months to reach their destination, others will take only days. We will discuss what has been found through research to be the journey most take, always keeping in mind that the journey is subject to the individual traveler.

The Journey Begins: One to Three Months Prior to Death

As one begins to accept their mortality and realizes that death is approaching, they may begin to withdraw from their surroundings. They are beginning the process of separating from the world and those in it. They may decline visits from friends, neighbors, and even family members. When they do accept visitors, they may be difficult to interact with and care for. They are beginning to contemplate their life and revisit old memories. They may be evaluating how they lived their life and sorting through any regrets. They may also undertake the five tasks of dying.

The dying person may experience reduced appetite and weight loss as the body begins to slow down. The body doesn't need the energy from food that it once did. The dying person may be sleeping more now and not engaging in activities they once enjoyed. They no longer need the nourishment from food they once did. The body does a wonderful thing during this time as altered body chemistry produces a mild sense of euphoria. They are neither hungry nor thirsty and are not suffering in any way by not eating. It is an expected part of the journey they have begun.

One to Two Weeks Prior to Death

Mental Changes
This is the time during the journey that one begins to sleep most of the time. Disorientation is common and altered senses of perception can be expected. One may experience delusions, such as fearing hidden enemies or feeling invincible.

The dying person may also experience hallucinations, sometimes seeing or speaking to people that aren't there. Often times these are people that have already died. Some may see this as the veil being lifted between this life and the next. The person may pick at their sheets and clothing in a state of agitation. Movements and actions may seem aimless and make no sense to others. They are moving further away from life on this earth.

Physical Changes
The body is having a more difficult time maintaining itself. There are signs that the body may show during this time:

The body temperature lowers by a degree or more.
The blood pressure lowers.
The pulse becomes irregular and may slow down or speed up.
There is increased perspiration.
Skin color changes as circulation becomes diminished. This is often more noticeable in the lips and nail beds as they become pale and bluish.
Breathing changes occur, often becoming more rapid and labored. Congestion may also occur causing a rattling sound and cough.
Speaking decreases and eventually stops altogether.

Journey's End: A Couple of Days to Hours Prior to Death

The person is moving closer towards death. There may be a surge of energy as they get nearer. They may want to get out of bed and talk to loved ones, or ask for food after days of no appetite. This surge of energy may be quite a bit less noticeable but is usually used as a dying person's final physical expression before moving on.

The surge of energy is usually short, and the previous signs become more pronounced as death approaches. Breathing becomes more irregular and often slower. "Cheyne-Stokes" breathing, rapid breathes followed by periods of no breathing at all, may occur. Congestion in the airway can increase causing loud, rattled breathing.

Hands and feet may become blotchy and purplish (mottled). This mottling may slowly work its way up the arms and legs. Lips and nail beds are bluish or purple. The person usually becomes unresponsive and may have their eyes open or semi-open but not seeing their surroundings. It is widely believed that hearing is the last sense to go so it is recommended that loved ones sit with and talk to the dying during this time.

Eventually, breathing will cease altogether and the heart stops. Death has occurred."

From Angela Morrow, RN.
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Pamela, I asked Trunner the same question. She's so stressed out. Her mom died just this past Thursday and funeral is tomorrow.
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By the way, when I wrote "help a person die" I definitely did not mean to promote or hasten his death, but rather to ease fear and pain and avoid unnecessary discomfort.
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It may be hard to accept, but remember that the purpose of hospice is not to keep people alive as long as medically possible (when there's no hope of recovery) but to help a person die naturally, at his or her natural time, without pain or anxiety.
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I had hospice for both my parents. They were wonderful. Both my parents were kept pain free, and as far as helping me they did too. My hospice was located in west Caldwell nj. Hospice is there to help. I do think the choice should be the person who is dying to end their life or not. NJ should make it legal. Hospice just keeps a person comfortable. That is what I wanted for my parents, and they got it.
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Trunner, what is your agenda? You pretend that you are caring for your mother in the present tense, then you tell us that she died on May 4th and speak of her in past tense. Then you warn us about Hospice.
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I would think very carefully before putting anyone on hospice
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My mom had dementia she was hallucinating really bad hospice came over gave her Ativan and she went to sleep after that she never really woke up again she went from eating on. Her. Own and going to the bathroom to bedridden they kept her on adivan and morphine even though she never complained of pain the last day they gave her a big dose of morphine even the nurse couldn't understand why she wasn't in pain she was unconscious 20minutes later she died the hospice nurse didn't want to pounce her dead they wanted the caregiver to do it I guess when your 98 their not to concerned
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I personally don't care for hospice. They want to be in charge & make all the decisions about the patient. We did have hospice for my dad & the nurse called me one day at work & told me his kidneys were shutting down, etc. I came home from work & took him to hospital & the dr said his kidneys were working fine. Have decided not to get hospice for my Mom as I would rather make all the decisions & do what I want for her. That is just my opinion, tho!
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The Lorazapan made my mom so weird. She acted so druged even though she was given such a small amount. We couldn't understand her, she stopped eating. etc. but they were trying to control her headachs. She was completely out of it. (long story short) I finally had to take her to an assisted care center. They assured me they could handle her. As soon as I got there with her I told her "Hospice" team "Not"
to give her much Lorazapan! That it made her crazy. That same minute I turned around and the hospice nurse had given her a full dose. More than I had ever given her.Of course I said something to her, she made up a lie and said," Well I knew I was going to spill alot so I had to make it that full"?
Mom would call out all times of day and night. " Help me" Help me" I would help you.
She never ate, or drank while there. She was for all intents and purposes unconsious. She doesn't remember being there at all. I was constantly going between the hospice nurse and the nurse at the center. No one had any answers.
They had their own Dr. but I never saw him. I was there every day, sometimes 2 or more times a day, We have our own business, but I still had to work.
Then on Aprill 29th last year they called me to tell me they couldn't find any pulse.
I ran over asap. They did find she was breathing, and she was curled up in a fetal ball. The told me to call my family and just let her go.
I told them hell no, and I called 911. When we got to the hospital she had a bad case of pneumonia, and she was very dehydrated. The Dr. treating her in the ER said that if she had not been on hospice this would not have happened.(his words)
He quizzed me to make sure I knew what hospice was?
I told him what Moms home health care had told me. " Having hospice doesn't mean she is going to die. But, it will give you more help"? I have never taken
care of anyone before. It sounded right to me. I listened to them. I was, am alone. No help was coming for me. They were the professionals.
I also listened to the owner of the assisted living. He came to my home, and met Mom. He assured me they could handle her even though she could not walk or
stand on her own. He helped us move her in.
I found that they couldn't handle her at all. Mom is a fairly big woman. I would go in at night after work to check on her or to kiss her good night. There was a very small pregnant girl working alone. I couldn't help but wonder how in the world
she was going to get mother in bed? When I asked her she said she had someone she called and they knew how to do it? I made huge mistake
putting mom in there. Now, she is in a full care facility. Doing well considering
all the physical problems. She is forgetting everything from day to day now. Like I have read from so many of you here. I am glad I'm not alone. I wish I had known
about this site earlier.
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Mom passed on May 4 at 600 Pm her body was so cold hospice gave her a shot of morphine and that was it
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sometimes moving to pureed food can help. Why not ask the hospice nurse why the food is stopping?
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Trunner - it could be that her dementia is at the point where the brain in not sending the information to the rest of the body to start whatever is needed to digest food in the stomach. Yes she can "feed" but the food cannot process. This could lead to her aspirating into her lungs. Hospice doesn't want this to happen so no food. Ask them directly what is happening with her processes breaking down. If you just absolutely feel the need to feed her, I'd do simple liquids.

Be prepared if she is close to the end, for her having times of being completely lucid and cognitive - almost as if the veil of dementia gets lifted from her. When this happens they will seem totally 100 &2% OK. The change can be frightening too - my MIL was this way the last time 2 of the 3 sons saw her. She was her vain, demanding self. And then she died a few days later. Just Spooky.
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They say she on her final days and medicating her round the clock whether she needs it or not so she's not going to be alert enough to swallow the thing is she's been like this for three weeks and wakes up enough to eat a little
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I think, I am NOT certain, that there are two types of hospice. One that makes money and one that is non-profit. Where I live we used the non-profit for my grandma, two years ago. They were the most wonderful people caring for my granma and for her family. They answered all our questions and if we felt my GM needed anything for pain, they accommodated. When she passed they were like angels helping us with the start of our grieving process.

Trunner, it could be that even through she maybe in the final stages of her illness, she isn't quite ready to pass. Her body will know when to stop eating as her system starts to close down. I don't know why they don't want her to eat if she still can and is hungry. That doesn't seem right. Blessings
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What is their explanation of stopping feeding? That seems unusual to me. My mom is on hospice and they're preparing to release her from hospice because she's been on hospice for 17 months and she's still doing about the same. Only slight decline. She started eating shortly after coming home to me. I would continue to feed her if it were me. That's not right. You don't stop feeding someone that wants to eat.
The problem I have is that my mom tries to eat her food but she chews and chews and doesn't swallow, eventually spitting it out. Or at times she takes a bite and no more. Does your mom enjoy her food? Does she eat because she thinks you require it? My mom does sometimes. I have to remind her that she doesn't have to eat if she isn't enjoying it.
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Any ideas why?
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Well my mom is on hospice they have ordered that feeding cease and she be given morphine and adivan round the clock for comfort the problem is she still eats when feed so I don't get why they don't want her to eat anymore if. She still can
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hospice makes good sense in many cases simply because a return to the hospital would result in the same diagnosis as before. theres just nothing to be done to improve an eighty year old diseased brain or heart.
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