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Regarding Hospice principles: I have Hospice for my 93 year old husband with either Alzheimer's or Vascular Dementia (not sure which it is). I'd say he is in late stage of either one. He is sleeping more than he was a few months ago (16-20 hours out of 24), and eating very little solids (and only when I spoon-feed him). Otherwise, he exists on about 600-700 calories from shakes, nutrition drinks, etc. Hospice tells me that when he refuses all food and drink do not coax him to take some because his body is telling him it's time to shut down, and that he will not feel hunger or thirst. But how do we really know this? To me, it seems that the natural human response is to do everything to sustain life, and that the Hospice approach seems to come down to simply watching my husband starve to death. I'm not sure I can do this. I don't think I would drop Hospice in order to allow a feeding tube, just for the sake of keeping him alive a few more weeks or months, but neither do I want to see him die slowly of lack of food and fluids. I'd so appreciate some input on this from anyone who has struggled to make peace with this difficult issue.

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Ice chips are an excellent way. Excellent.
God Bless to all.
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I wish I would have known not to push liquids/food on someone who is dying. I do think that even in last stages of life that if someone desires food or liquids that are available to them, they will take them, and if they are refusing then there is a reason. I wish I would've known that before I, rather insistently, bottle fed my grandmother in her last weeks of life. I think it was more agitating for her than it was nourishing in any way.

One thing I read on here that sounded like a good idea is ice chips - to put small ice chips on the lips and in the mouth of the person so they get some moisture in their mouth.

It's such a difficult thing for the living to do, to watch our loved ones dying, but Mother Nature does seem to know better than we do about how that process is supposed to go. So if he doesn't want anything, I wouldn't try to push it on him. I very much regret that I didn't know better and did just that in my situation. Love to you both as you go through this process.
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disclaimer;
dont pop anybody in the head with a hand sledge. we have professionals with meds to put them out . im trying to make the point that theres a time to let them go . hospice professionals are watching vitals , they know when its over . dont argue with them , youre medically unqualified to do so .
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i can say , having experienced the last moments o fterminal agitation . its so fn obvious whats happening that in the absence of meds i would pop a loved one with a hand sledge . i mean that from the heart -- its that damn obvious..
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oh my . i was the first post - er on this thread in late july 2013 . mother died on aug 1 . whatever feelings i was writing were definately coming from someone faced with letting the patient go in peace . mom was indeed in the active dying process . my feelings are unchanged here a year later . why tf would you let a patient remain alert to experience organs failing each other in sequence ?
so what transpired after that first post ? mom began a few days of terminal restlessness , wandering from one place of comfort in the house to the other . this was followed by about 2 days of terminal agitation . when the agitation reached the point she was distressed and clutching at the air it was drug induced lights out time with mine and hospiss' blessings and approval . she was trying to climb up out of her dying body . stopped eating or drinking two days before death . i knew she was bloated with undigested food , surely wouldnt force more in her . i remember walking up and giving her an ice cube a couple of times . she gratefully accepted it to quench her thirst . hospice is a wonderful science and i can imagine loved ones bringing various natural narcotics to dying people since man has walked the planet . its the humane thing to do .
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Anyone who does not accept the principles of hospice care should not place a loved one on hospice care, if it is their decision. It really is that simple. If your loved ones wants hospice care then you should respect that choice, of course, but if it is your decision to make, follow your own beliefs.

I embrace the principles of hospice. I would want that for myself..
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I just buried my mother today. I too had questions about hospice care and this was my first experience with it.

My mother had vascular dementia and it became too much for me to handle alone after 8 years and I broke down. I was told not to return to caring for her unless I wanted to die of a heart attack or stroke. So I left and went to live with a sister and start taking xanax, ativan and zoloft to stop my panic and anxiety.

Mom had in home care and my other sister living with her but more help was needed so she was placed in a "good" skilled nursing facility for those with dementia. She was there two weeks and fell. This supposed fall the young man told me the next morning was her falling out of bed...15 inches from the floor. They did not seek medical help for 16 HOURS. My mother had 3 bleeds on the brain, a huge hematoma on the forehead and a huge one on the back of her head, broken ribs, pneumonia and MRSA.

I was not called until the following morning and was reassured she was PERFECTLY FINE, NO PROBLEMS WHATSOEVER. Just a bruise that they were holding ice on. They kept telling me at each call (4) that she was fine and ABSOLUTELY NO NEED FOR ME TO COME TO THE HOME. The story changed 4 times from the staff.

I finally got a call around 2:30pm that they were having to send her to a hospital because her coumadin level was at 5 which was dangerously high. AGAIN THEY REPEATED SHE IS FINE, DO NOT WORRY, DO NOT COME TO THE HOME, DO NOT GO TO THE HOSPITAL, SHE IS FINE, WE WILL KEEP YOU INFORMED.

By this time my sisters and I said BULLS__T we are driving to the hospital. When we arrived she had just had a CT scan that found the brain hemorrhages, she was unable to speak, she could not open her eyes, all she could do was mumble and moan in pain and she was curled up into a fetal position!

My sister had just been with her a couple of hours before this "accident" occurred. They were walking and talking and visiting with each other and Mom was in perfect shape.

The home kept telling us that she was awake and alert when she was taken to the hospital, I do not believe them. When she arrived she was unable to speak or open her eyes.

They assembled a team of doctors immediately including a neuro surgeon...they opted for no surgery "at this time" another CT scan was done and the bleed was getting worse. Still no surgery, not that I think she would have survived it anyway, but I do believe the doctors anymore look at their age and make calls on who to try and save and who not too. Mom was almost 86 but she was in good health other than the memory and A Fib that she took meds for.

On day two Mom was better, although her eyes were closed, she replied to a statement my sister made and even called her by name. Later however when I was there she opened her eyes and began to try and crawl out of the bed, "Yelling It's not safe here, Mary get me out of here, Sharon help me get out of here, this place is very dangerous, get me out, get me out!" I am trying to calm her down and tell her it is alright she is safe, we have her now! She slowly looks up at me then lays down.... this was the last time she ever spoke.

The doctors came to us and told us that we needed to consider hospice, there was nothing they could do to save her. Even if she did survive she would be basically a vegetable, for lack of a better word.

Mom had her Medical Directives all in place and did not want to be given a feeding tube or anything else to be kept alive if she had no chance of recovery. We met with the hospice people and they said we did not have to move her someplace else they would just move her to the 6th floor where hospice patients were.

Although I knew that Mom did not want anything given to her it was still extremely difficult to have her given "Comfort Care" which is putting you to sleep and stopping all medications, food and water until you pass away.

This is not for the faint of heart and honestly I do not think you should stay all day long with your husband, but come for visits. My sisters and I spent 6 days 24 hours a day with her and it takes an enormous toll on you. You will question what you are doing, you will feel it is inhumane..... but let me tell you it is way more humane than allowing them to lay there in pain perhaps. My sisters and I have all had ups and downs, guilt, second guessing what we did. It is painful to you the living to watch your loved one pass away and it isn't fast. You will see them breathing hard but they can be given meds to calm them down. At times I equated it to putting your dog to sleep, doing this would never be easy for anyone.

All I know is that I am glad that my mother had made this decision awhile back and I was glad it was in writing because I knew that I was following her wishes. When I die if I am in her shoes I hope my daughter will do the same for me, although it does take days in many instances or months at least you are comfortable and not in pain. Also what they told you about the body shutting down and not requiring food is correct, their organs are shutting down so they cannot digest the food.

I know you loved your husband but please do not sit by his bedside day and night, the experience is too painful and you may not be able to handle it.
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The gag reflex diminishes sometime before death and if one is still feeding someone with a diminished gag reflex this will cause aspiration pneumonia, where food or drink is sucked up into the lungs, and the person will suffocate to death slowly. When someone stops eating and drinking it's ok to stop feeding them and giving them fluid. The body knows what it's doing. Death isn't a one-time event. It's a process and the body needs to go through that process. The body WILL go through that process.

Also, even dying people respond to painful stimuli so if your loved one was in pain you would know it. No one is sure how much pain there is while dying which is why hospice offers pain medication if your loved one seems to be in pain.
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livelifefull, yes you have more control of the meds at home. However, you need to have the knowledge and confidence to use them correctly. You keep logs so you know what you gave and when. You monitor vitals and fluid output so you can share that with the nurse. Most families can't do this, they are too caught up in their emotions to even write things down.
My girlfriend did not want to give her mother any morphine. I told her OK, give half the dose. Make mom comfortable without making her dopey. But if she is crying and in pain, don't let her suffer. It is supposed to be comfort care.
I have found feeding tubes get you an extra week, but if that week means the patient is coughing up blood from the lungs, why would you want to prolong the agony?
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I'm not impressed with their principles either. How do they know starving people are euphoric?
They seem very liberal with pain and sedating meds. Just because a person looks sedated outside doesn't mean they're not anxious and screaming on the inside as far as I'm concerned.
I personally wasn't happy with home hospice for my motherinlaw.
Here is a link to the discussion
https://www.agingcare.com/discussions/didnt-have-a-good-experience-with-home-hospice-172413.htm
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I also want to let you know, that at any time, one can unregister for Hospice.

I would never allow them to give my loved one the morphine. That is a choice, but saying that, I do understand, when in a hospital setting, you are at the hands of nurses, doctors.

What I am thinking, is if at home, you/the loved one to the person that has a life ending disability, has much more control? Possibly? Just a thought.
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My client has decided to go on Hospice, and I call it the "Hope" program, which I guess is the original name for it.
They are, or from what I know and have experienced them as a "private and personal caregiver" paid and non paid, provide comfort.
They are not trying to stop life, but they are trying to provide the most comfort to your loved one making their end days, not full of anxiety and/or pain.
Hospice, as it was told to us Monday and last Friday, does not have a definite "ok in one year you must die", that is not the way this particular NON PROFIT organization works. They need two doctors to approve you in for qualifying. Not anyone can sign up.
It is very beneficial for me as the caregiver.
I now have many extra sets of hands.
My client is in Asissted Living and has chosen end of life care there.
For many reason's beyond this question "she is very hard to deal with" and all of the other assisted living "not hospice" but LTC facilities have denied her to come there because it is in her file, regarding the insane amount of time, she demands from one person.
I have a heart, I am a woman that gives care with compassion, care, dignity, hope and always looking for a brighter tomorrow.
This is what I have seen Friday, Satur. Sun. Mond. Tues. Wednesday so far.

There have been people out there of course assessing her. They do not talk in front of her like she is not there, and she is human. (The last sense to go is hearing).

But the reality is, CHF, COPD, and non compliance since 2005, is not a good sign.

Hospice to me was, we evaluated 5 companies, and she chose the one she preferred. I know the reasons, and it is because the woman leading was from "new York". Now, what I see there is that, she finds something in common with someone.
She is non ambulatory, and is horrible shape and only 78. She used to have a mind sharp as a tack and in those last 7 days, it is just to provide her with peace and comfort. She asks me to call the number daily, and it is to talk. She was not comfortable with the word, because "dying" is not an easy term to come in acceptance with. She has slowly started slowing down, the anxiety level, and her breathing is oxygen sat 82. with 4 liters of oxygen, but she has been suffering for two years, and she is or has said "she just is tired, and wants to go home" "with her husband I am assuming"
Have faith, and talk to others, find out what the advantages are, and if you feel a certain way, talk to them.
What I have found is the team they send out to sign you up and the team that works with your loved one can be totally different.
All the best, and my prayers are with you daily.
Debbie
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Just wanted to clarify my comment. Dad was in ICU for 2 weeks and palliative for 1 week. He recovered from pneumonia in ICU in about a week.Because he couldn't swallow they put him on a saline iv. But they wouldn't tube feed. I'd always trusted Drs and believe I was in shock because everything happened so fast, because now it seems ridiculous to keep someone on saline without a feeding tube. They said it would only feed the "cancer" (if it even was cancer, no biopsy was ever done to confirm this) He was only conscious for 1 day out of the 7 days in palliative because of the morphine/dilaudin sedation, except he was semi-awake for the last 12 hours of his life as he struggled to breathe.
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I totally agree with "joycews" My Dad was in palliative "comfort care" in a hospital after spending 2 weeks in ICU at the same hospital, different wing. On the basis of one ct scan they proclaimed the mass in his throat to be malignant, no biopsy was done even though we kept asking for one (a mass isn't always cancer) Because of his age and the mass they kept giving him ever increasing amounts of morphine, even though he told me he was NOT in any pain. He actually was admitted for pneumonia, which he recovered from in the first week or so. They refused to put a feeding tube in his femoral artery (the only option because he'd become so weak from the pneumonia and it couldn't be put in his nose and down his throat because of the mass) The team of Drs urged us to put Dad in palliative care because they said he'd receive more care there because there were more nurses per patient. I believe the feeding tube would have helped my father, because he wanted so very much to live. Even without it he got over the pneumonia. I was there 24/7 for the entire 3 weeks, holding him upright as he coughed up blood into a container, when I asked one nurse to help me hold him up she said she was "too busy", and I wonder if he'd even have beat the pneumonia without my help. I finally agreed to palliative care and he was conscious there for only one day because of the diluadin/morphine amounts were rapidly increased. I believe they wrote him off because he was 91 and he died gasping and suffering and looking into my eyes with a fear I'll never forget. Just a month before, he was vital and even driving my Mom for groceries. I don't even believe that the mass was cancer, only a biopsy could've confirmed that, not a ct scan. I believe we should've been less trusting of the Drs and went with our gut feelings. To deny a feeding tube is inhumane. When I got his medical records I found out one of the Drs had canceled the biopsy right after the ct scan, even though they kept telling us to keep waiting for one to be done. I went back to see the Dr a couple of months later and she said " he would've just gotten sick again" I think there is a common mindset to just give "comfort care" when the patient is elderly and I believe they greatly hastened my father's death in the palliative unit with no tube feeding and massive amounts of dilaudin/morphine. He died gasping and suffering and afraid. Comfort care is just another name for let's do nothing except drug them until they can't breathe. It's a horrible way to go. I'm sorry for your having to go through this. How can anyone profess to know that starvation isn't painful unless they've been starved themselves? I feel guilt beyond measure that I listened to these Drs, I'll never get over not getting Dad a feeding tube, at least then I could've said we tried everything. In our case palliative "care" was the worst thing for my father. My sympathy for your situation, I am so sorry you're going through this.
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Nanfran..does your husband have a DNR advanced directive?
If he does make sure on that form it doesn't say anything about life sustaining procedures. Mom had this one her form and so basically there was nothing we could do but keep mom comfortable. When your loved one is in the final phase of the dementia...their brain is telling them they are not hungry. If he was to eat..he may gag or choke on his food...another thing the brain is doing...you see, dementia kills off so much of the brain at this time..its more distressing to try and make him eat. I would offer food to mom..but if she decided to take it or not, was up to her. I sorry this is the hardest part...nothing prepares you for what's to come. It's the worst thing to witness...I hope you have family around you. Take time for yourself when you can..Unlike Joycews, Hospice was a life saver to me. They will keep him comfortable as much as possible. God Bless.
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In my experience Hospice was only called in when the patient was dying. Honestly I have always thought that is what they were there for, to keep the dying patient comfortable until they passed.

After reading "joycews" post it seems she has had very different experiences.
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I first want to say that I am so very sorry you are going through this. I have been there and it is heartbreaking to say the least.
My FIL is 86 and has several things wrong with him. He had a living will in place and his wishes in writing. He was being seen at his home by visiting nurses and after he put a gun to his stomach threatening to kill himself, they called in Hospice. One of my first questions is if Hospice is a facilitate to die organization and I was told, "no." While I don't believe they are one of the organizations that will send you the packet of pills and the instructions on how to take them to end your life, I do believe they do everything in their power not to prolong it one hour over what THEY deem and they keep patients medicated and sleepy so they won't complain. There is a poster on this forum who has also noticed this. Her mother was informed she had a terminal condition and refered to Hospice. She spent the afternoon talking to her mom and her mother was up and walking around. By the time Hospice was in, the woman was essentially bedridden in no time and incoherent. This happened within 2-3 days. People dismissed her saying that her mother probably had something that just made her fade fast. I have seen it with my own eyes with my FIL talking (even nonsense, he was talking) and then be so far under asleep after Hospice got involved, we thought on more than one occassion he was dead.
The meetings with the entire family never happened, the chaplain came and essentially told him she was whatever religion he wanted her to be, and many times the nurses would not show up when they were supposed to and they insisted that my husband leave work to come meet with them (often they were an hour late).
One day my husband gets a call at work from the hospice social worker who asked him, "hey, how much does your dad have in his bank account? Yeah, well that will cover him for a couple of months, we're talking him into the nursing home and he is going." We were told he had about 6 weeks or less to live.
I asked them about the 90 day stay through medicare and was told that only worked if he stayed 3 days in the hospital. My FIL waited until they left, called my husband and said, "take me to the hospital."
Well, needless to say this did not set well with the Hospice workers who informed my husband his dad should have not went to the hospital to begin with. He stayed 3 days in the hospital, one week in a geriatric mental facility and is now going on month 3 in rehab (where he participates in physical therapy every day but Sunday). He needed a foley cath and the visiting nurses nor Hospice nurses could get it in. When they placed it in at the hospital, the nurse said he had never had so much urine come out of a patient.
When he was at the mental facility, we were told outright that there were tests that would not be done on him as long as Hospice was involved. We got Hospice removed and he not only received additional tests but additional treatments.
His legs were not being properly taken care of by Hospice nurses (they asked at the hospital if he had received skin grafts they were so bad). He is a diabetic and had sores and I believe untreated MRSA. His legs are now almost cleared up. The MRSA is gone.
Oh -- one additional thing that Hospice is really good at is keeping patients doped out of their brain. My FIL was being given pain meds like candy (to the point he was becoming addicted). When I explained to the hospitals that he has an addictive personality and once struggled with alcohol and still with gambling, they went on a step down program for him.
Even with physical therapy, he now only receives a pain pill when he needs it.
He went to the hospital a couple of weeks ago and they said his kidney function is severly decreasing. They suggested we call Hospice back. We told them, "no thank you."
Our family is not the only one who has regretted ever being involved with Hospice. I know you hear glowing stories but it is by far not everyone's experience. I had heard wonderful reports from friends whose loved ones were dying and how Hospice made everything so easy and wonderful. We never used Hospice for my dad or grandparents, so this was our first experience with a direct family member. It will be our last Hospice experience too.
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Dear Nanfran: I think you have some good advice here. I know it may be very difficult to accept but it is time to let your husband go and Hospice does know what they are doing.

We did things to prolong my father's life even though he had a DNR order. We were lied to by doctors who told us that if we did not do some of these things he would die a HORRIBLE PAINFUL DEATH, which was absolutely untrue, as he was placed on morphine to keep him comfortable. He was kept alive for 1 1/2 weeks and when the doctor removed the C Pap machine to check on him, he died within 5 minutes. He would have died much earlier and we put him through pain, knowing he would never recover. I WILL NEVER DO THAT TO ANYONE AGAIN! It is inhumane. He deserved so much more than that!

God Bless You and Your Husband
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We have so little experience with death in this century and this country. One of our cats died at age 19 from cancer. He just slowly stopped doing things, and ate and drank nothing. That's what death can be like. I would never withhold food or water from someone who wanted it. But a 93 year old man who doesn't want to take nourishment is following his body's signals.

Is your husband comfortable and happy and interested in life? Or is he just lying there, needing to be turned, sleeping most of the time, not especially comfortable? Life is more than just having a beating heart. His life should not be shortened by artificial means, but his dying should not be prolonged. I don't know what's wrong with him, but 100 years ago, he would already have died. It's because of medical science that he is alive at all.

It is natural to want to help him and keep him alive. I think it's fine to urge him to take a sip of water or a bite of pudding, but as the Captain says, don't try to force him, and don't feel bad if he doesn't want it. Nature or God is in charge now. It's out of your hands. Your only job is to let him remember that he is loved, before he goes to the light.

I'm sorry for how sad this is for you.
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from my reading its a fact that as body systems begin to shut down very little nutrition or liquid is required or utilized. dehydration causes a lethargic, euphoric condition and is a very natural and trauma free way to die. starvation is a pretty humane way to shut down too. if the kidneys and or digestive system are failing the food causes uncomfortable bloating and one can drown in excessive liquid . i believe my mother is beginning the active dying process and i know from previous complaints that food just lies on her stomach and isnt being digested. she is dropping weight almost daily and i wouldnt think of cramming food into a backed up digestive system. hospiss is looking at vital signs and probably have a good idea that the end of life is near. natural death constitutes the bulk of their training and expertise. only today i read that trying to force food onto a dying patient is comparable to watering a dead flower. id suggest you do some reading on the subject of end of life. it would calm your inner turmoil . prolonging life isnt always in the best interest of the patient.
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