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 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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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.
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!!!
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!