How do I know it's time for hospice care?

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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?


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.
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.
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.
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.
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.
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.
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.

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.
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.
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 needs.

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