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I have been following this site for quite sometime now, and I find it so helpful because I was my mom's sole caregiver for many years until about 3 months that she had a bad fall, was hospitalized and finally I made the decision to place her in long term care at a nursing home, she suffers from Alzheimer's and Parkinson's disease, she no longer walks, speaks or eats by mouth. I am now in a very hard situation because my mom has been hospitalized 3 times since then, once to get a feeding tube, and twice with neumonia and C diff infrction. This last time she was intubated and spent 4 days in ICU, her Dr from the NH has advised me it is time to consider hospice because of how weak her body is after suffering from strong bouts of neumonia and the c diff, and her lungs just not responding to meds as they should. I am so scared this is her end, and I am not sure if I should just keep her from going into hospice a little longer. I feel I am giving my mom a death sentence and just giving up on her. What should I do?

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Hospice is about offering comfort and easing suffering at the end of life, at some point you have to accept that your mom is going to die some day no matter how hard you fight it and no matter what you and the doctors do. From my reading I've learned that the main reason we hear of people who die quickly once they sign up for hospice is that they do not make the call until death is immanent, the number one regret expressed is that they should have called for help sooner.
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At this point you have to ask yourself, would I want to continue life like this? It sounds as if the quality of life is gone for your mom.

Hospice is what's needed for her now, not prolonging life on a feeding tube. I'm so sorry your going through this. Hospice can be a great help.
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Hospice is NOT a death sentence. Death will occur on its own timetable, with or without hospice care.

My mother was released from the hospital back to her nursing home on hospice care. The hospital said they didn't expect she'd live out the week. After about 3 months, the hospice program said she was no longer eligible for their care ... she had recovered remarkably well. She lived another two years after that.

My husband died after 5 weeks on hospice care, in our home. They were so helpful I wish he had been on it longer. He was on palliative care before that, which in his case I feel was a waste of time and effort. His autopsy confirmed that he died from his dementia, but that it was remarkable he had not died sooner from his arterial sclerosis. He died when his body was ready, and it had nothing to do with what medical program he was on.

My best friend's husband died of cancer about a year ago. We were just talking about it last week and she said she really wished he had been on hospice longer. I think many people feel that way.
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My mother was on hospice care for two days before she died. She was eligible for hospice for a two full years before that, my brother refused to sign for it, opting for palliative care instead.

So instead of having weekly visits from additional aides, a social worker to run interference for us with the NH, an additional nurse to oversee what was going on with mom medically, volunteers to visit and an additional chaplain...well, she didn't get any of those things because palliative care didn't provide them.

Had we HAD hospice for those two years, I believe we would have had better oversight over her psych meds (which occasionally got changed because Medicare dictates the the NH try to reduce antidepressant use--so they decreased her meds without telling us, wreaking havoc--more oversight would have been useful there. More aides are ALWAYS a good thing.

I'm just so sad that I didn't insist much much sooner. Mom would have died exactly when she did, or she might have lived longer. But she would have been happier and less stressed.
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Please think long and hard about hospice. My father’s death was long and brutal at the hands of hospice, and they absolutely brought it on.

Despite the euphemisms they use about a “ journey” and all its glory and beauty, I’ll never get over his long and labored death—a far cry from dignified or peaceful.

They denied him nutrition and hydration for more than 12 days and pumped him with morphine. We sat vigil and watched him waste away.

He had Parkinson’s but was otherwise healthy. My father died of drug overdose and dehydration, two days before his 6-month approved hospice benefit ended. Coincidence?

He deserved better and I’ll live with that regret forever.
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Rubbish. Hospice can be re-approved for MANY 6 month segments. There are posters on this board whose parents were on hospice for years, some who 'graduated' because they improved so much that they were no longer eligible.
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Choosing hospice is not a death sentence, as stated above.
Think about what would happen if we allowed nature to take it’s course. Long before we had ventilators, antibiotics, ICU’s, etc people passed away as dying is part of life, no matter what.
Placing you mom on hospice is just allowing her body to go through the dying process pain free and comfortable.
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Ditto - rubbish. My mother passed away in her seventh month in hospice care - about three weeks AFTER she had been qualified for an additional three months.
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I was a hospice volunteer for many years. One of my patients was in a nursing home. He was relatively young and had COPD and heart problems. He had no money and no family. As you can imagine he was not in a very nice nursing home.
Once he was put on hospice he received multiple services that helped his quality of life for the next year and a half. I visited once or twice a week, a nurse came weekly, a social worker came regularly and a music therapist came every week and played his guitar and sang to the patient. He even wrote and recorded a song for the patient. He gave a copy of it to him so he could listen to it and he played the song at the patients funeral.
Throughout that year and a half we advocated for that patient in the nursing home. We reported things that were not done correctly and got the patient equipment that he needed. I have no doubt that hospice provided services that enriched his quality of life and made him comfortable.
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Thank you all for responding and helping me understand a little more about hospice service. I still have not told the NH my decision , but I am more confident now that this is what my.mom needs.
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cavila- I think you’re making a good choice - both my parents had hospice care.

Remember- you can change your mind at any time and if you see something you don’t understand- ask questions. As well - if there is a member of the hospice team you don’t get along with or don’t like their bedside manner - whatever- you are free to speak up and ask for a different person to fill that spot.

Best wishes.
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I'm planning to ask for a Hospice evaluation soon. Too many recent infections, multiple ER visits, can't get a vein, she's crying out in pain, scared in ER, getting catheter to get urine sample, she's lost the use of her feet, which she used to be able to scoot around in wheelchair, loss of vocabulary, losing ability to sit upright, sleeping more, and 2 ER doctors have asked if we have considered Hospice. So, I think we are there. I can't keep having her transported to the ER where she is stuck with needles, catheters for urine tests, she's scared, confused, crying out, etc. She has severe VD dementia, has no idea where she is, Type 2 diabetes, hypertension, arthritis, double incontinent, can't walk, recently lost the ability to feed herself.

This is my question: Her appetite is good and she hasn't lost weight. Will that prevent approval?

Does her Primary have to approve it? Isn't it a conflict of his financial interest to not approve her? Won't he lose money, if she is approved?
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Sunny, the way it worked for my mom, A physician had to recommend a Hospice evaluation and A physician had to approve Hospice.

In mom's case, her doc at the NH recommended the evaluation. At the time, mom was approved by the Hospice organization for the service, but my POA brother decided that it wasn't time yet.

When the time came (when I was jumping up and down demanding better pain relief for mom) the NH doc who was on that day saw that she'd already been approved for Hospice a year earlier and scripted her for a Hospice eval. She was approved about an hour later by the Hospice organization.

Can't comment on conflict of interest.  My point is that it didn't have to be mom's primary; it was A doc who had to approve. 

Also, if she can't be approved for Hospice, which requires a life limiting dx with 6 months or less of life expectancy, consider asking for a Palliative Care eval.  We put that in place when mom could have been approved for Hospice.  It allowed us to tell the NH that we no longer wanted mom transported to the ER for treatment unless we approved in advance.

Thus, when she appeared to be suffering "just" from a UTI or pneumonia, the docs and nursing staff at the NH would treat, rather than sending mom in an ambulance to the ER. 
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Ok. I have been asking for Palliative care for years. Oh well....it seems there is some kind of confusion. ER doctor said the facility could do UTI test, but, facility said no. They had to send to ER. I'm in the middle. ER doctor not too pleased. (No issue with us, but, the facility and primary.)

I wonder if the ER doctor can reccommend..........A couple of months ago, another ER doctor told me that he was contacting the Primary about Hospice, but, I never heard anything back. Maybe, the Primary didn't agree. Oh well.....I think there is a conflict.

I will try Palliative Care again. I'm just not sure they understand what that means.
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Sunny, what I did was ask for a care meeting at mom's facility and had them call a hospice organization to be present at that meeting. It was agreed in principle thst mom was eligible for hospice or palliative care. Not to long before, the hospitalist at the local hospital had declared her " NOT ready" for palliative care.
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Unbelievable. I mean, where do these people come from? Sometimes, I really wonder how these people have jobs in their field. I often feel like I have to figure it out, explain it to them and hope they get it. AND THEY are the professionals. It's so frustrating. Another incident is involving my LO''s leaning. I had to recommend that her medication be reviewed, since that could cause leaning. Wouldn't you think the facility, a primary and ER doctor just might consider this? No, I had to do the research and inquire.
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Rorococo, thank you for sharing your story. What you witnessed was real. I have witnessed it too, as well as many others.

Don't ever let anyone convince you that you didn't see what you know you saw.

There are a lot of trolls from the hospice industry here doing damage control and soliciting new enrollees.
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Right, Prolife; lots of us folks who are caring for our dying parents are out here soliciting for Hospice organizations. Are YOU caring for a parent, spouse or child who has a life limiting illness? Or are you a troll? If your loved one has less than six months to live and suffering confusion, delerium, pain and terror, what do you want for them? More of that? Or meds that will calm them?

Morphine helped my mom, who appeared to be in some sort of physical or psychic pain, with pneumonia, wrist fracture, post hip fracture repair, vascular dementia, total aphasia,CHF and pleural effusions, transition peacefully from pain/terror to death, while my SIL and I played opera arias and music from her childhood.

Should we have made her suffer through whatever psychological terrors her abusive Catholic childhood were bringing to the forefront of her mind? She'd spent last summer convinced she had leprosy. And that she hadn't paid her taxes in 1936. And that she was a terrible person and was going to Hell, which to HER was a very real place.

Was I going to let that happen. Nope.

Prolife, take your agenda and shove it somewhere else. Hospice is a blessing.
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Proliferation, you've Clearly Never cared for anyone suffering at the end of their life. If I were a spouse or parent under your care, lacking Proper support and love,being denied the appropriate medication that would ease my suffering, I would request another Caregiver, or Medical POA. YOU ARE OBVIOUSLY Not going to be seeing to my wellbeing, and getting me the help that I need, to live out my days with dignity and as comfortable and pain free as possible! 

You are a cold and callous human being, who shouldn't ever be in the role as a Caregiver. I think you are on the wrong site, pushing your agenda on those who are trying to do the right thing by their Loved ones. I pity your one loved ones, as they must be suffering, it so sad! Dying in pain is such a cruel way to go, when there is such wonderful alternatives and can be prevented, such as Hospice, and I know, I've been through the painful journey of caring for 2 parents, dying of Cancer, and it isn't pretty. Thank God for Hospice!!!
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This intelligent and reasonable discussion was over when the troll showed up.  imo.























On top of spaghetti all covered with cheese
I lost my poor meatball when somebody sneezed
It rolled off the table, it rolled on the floor
And then my poor meatball rolled out of the door
It rolled in the garden and under a bush
And then my poor meatball was nothing but mush.
The mush was as tasty as tasty could be,
And early next summer it grew to a tree.
The tree was all covered with beautiful moss
It grew great big meatballs and tomato sauce.
So if you eat spaghetti all covered with cheese,
Hold on to your meatball and don't ever sneeze.


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That's all folks!
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Prolife is obviously not going to quit. So, I say let's all quit acknowledging his/her posts. You know how they say to ignore a bully............let's all ignore Prolife.
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How does a doctor make a determination about when to order hospice for elderly patients?
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If you would like to connect with others who have also experienced hospice (and other medical settings) murder, go to the Facebook page: Exposing the Invisible Culture of Death in American Health Care
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