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My mother is home on hospice after 3 weeks in the hospital, and 3 weeks in rehab with 2 fractures in her lower back. She has been home 3 weeks as of yesterday. The first 2 weeks were very difficult. However the last 3 days she is up and around, with her walker, sitting up in the chair and seems to be improving. She has vascular dementia, and is up and down mood wise. Has anyone else experienced this, will it last? Not getting much support from hospice, been waiting over a week for her pain meds and test results from the endoscope/ biopsy she had. The CNA that comes to bathe her is great, when I text her nurse, it takes hours for him to get back to me always stating he will look into it.

Hospice no longer provides much support, sadly.
They expect a patient to have approximately one visit a week from an RN for about one hour time, and only several baths from aids. This care is costing 100s of thousands of dollars in Medicare funds and quite honestly it is the Hedge Funds that are making out like bandits. Hospice is their new favorite. Families continue to supple almost all the care. There are a few out there dedicated and still carrying forward what was once a mission. But all too few.
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Reply to AlvaDeer
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pharmgirl05 Jun 23, 2024
I am wondering about this as well. We interviewed a hospice company for my family member's care (advanced dementia) and they said that they did not come out every day, only 2-3 days a week to bathe, and possibly other needs. They said they teach the family to provide most needs (we are already doing that!). Everyone is pushing hospice, saying, "they just provide so much", but I am not convinced from what I read and others that I talk to. Also, reading the fine print of the paperwork that you sign to initiate hospice, it looks like all of your care comes under the Hospice Medicare benefit, and you may be waiving many of your Original Medicare benefits if the hospice doctor does not approve the treatment. Or, it could be a confrontation at the least, or cancelling that particular hospice company, etc. I'm sure there is a place for it, but I am still on the fence.
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She could be what is called "rallying" as is common towards the end, or your mom may actually be improving. But either way, hospice should have your moms pain meds there same day. You SHOULD NOT have to wait over a week.
You need to be on the phone with your hospice office and ask to speak to whoever is your teams leader and make sure that your mom is getting the care and medications that she needs in a more timely manner.
I can tell you that my late husband was under hospice care in our home for the last 22 months of his life and I had to stay on top of them ALL the time. I was calling the main office weekly if not sometimes daily. I'm sure it got to the point when they saw my number pop up that they dreaded answering my call, but you know what, I could have cared less as I expected them to give my husband the care he deserved in his final months.
You now have to be your moms advocate and if that means calling them every day...so be it.
Hospice has to be available to you 7 days a week and 24 hours a day. Don't forget that.
If you're not pleased with this hospice agency, fire them and bring another one on board. And yes, you can do that. Your mom deserves better.
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Reply to funkygrandma59
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Let nature take its course.
not much can be done with heart failure, just meds, as far as nurse, talk to his supervisor.
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Reply to Funcountess
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Yeah, hospice seemed to of changed around covid. Seems like they did less during covid. Next to nothing for my dad and they just never changed back. It's sad 😢

Just enjoy and spend time with your mom while she is doing better, because it may be just her way of saying her goodbyes and finishing her business.

So sorry, stay strong 🙏🙂‍↕️
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Reply to Anxietynacy
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I cared for my dad in his final weeks on home hospice. He died after years of slow decline with CHF. He did the rallying while on hospice but it didn’t last. The final two weeks was a swift decline. The last week he stopped eating and remained in bed. Our hospice agency was very good, always responsive. You can change agencies if you’re displeased. Though ours was good, if I had it to do over, I would have used the one agency in the city that has an inpatient hospice house for the final week or two. It would have been far easier on the family. You may want to see if this is an option in your area. This is such a hard time, I wish you both peace
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My mom is 91 on hospice in board & care with CHF and A-fib (has a pacemaker). About 6 weeks ago she was hospitalized briefly with community-acquired pneumonia and hypoxia (since resolved) following a GL fall with compression fractures. She also is now up and around with her rollator with more staff assistance than before and has the up and down moods also. My mom sounds just like yours.

Did you ever hear what her recent ejection fraction was or her BNP level?
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kebideplin57 Jun 23, 2024
Boy they both should go out for coffee! Lol. Her cardiologist gave me her refraction numbers months ago I think it was 40. The cardiologist at the hospital did not give me any information other than she was in A-fib and was having episodes of tachycardia and hypotension. He did agree she qualified for hospice.
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The covid excuse is just that, an old and worn out excuse that holds no water anymore.

Call the hospice company and ask to speak to the person in charge, the supervisor. Let that person know the nurse in charge of your mother's case is constantly "looking into" your questions and concerns, but never getting back to you with answers or MEDS for mom. He either fixes this immediately or you'd like a different nurse assigned to moms case. Immediately. And her meds delivered today.

There are lots of hospice companies out there, so if this one is incompetent, you'll call another. In the meantime, make that call and get her meds.

As far as rallying goes, you'll likely see ups and downs with mom, good days and bad days, as I saw with mine, who had advanced dementia and CHF. When she went downhill, she turned on a dime one day and went from being engaged and interactive to bedbound and comatose, instantly, and passed exactly one week later w/o ever regaining consciousness. Hospice kept her comfortable and not agitated, so her passing was peaceful. She was 95.

Best of luck to you.
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kebideplin57 Jun 23, 2024
Thank you for your post it was helpful. Not really sure it's the nurse. Wondering if it's the Dr. Or the pharmacy. The Dr has to order the meds. Not even sure what pharmacy they use.
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You might consider another hospice company.
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kebideplin57 Jun 23, 2024
When my sister and dad went into hospice they were actively dying. They were transferred to a hospice facility and passed with in 24 hrs. Before I make changes, I want to be sure that I am not over reacting. Hoping to get some advice from people getting hospice services at home.
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Sorry, this was supposed to be a reply to pharmgirl05’s comments further down.

It’s definitely easier if your loved one and family are comfortable with end of life care and not automatically pursuing tests/treatments other than for comfort. People go on and off hospice all the time but I agree with you, easier not to of course. I don’t know your situation, but palliative care is also available, which is focused on decreasing doctor’s visits and improving quality of life for those with serious illnesses. It does not offer any hands-on care but a provider will come to the home and can order medications, bloodwork, etc. and the patient can remain on any treatment, including cancer treatments. It’s considered a step before hospice.
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Reply to MidwestOT
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Hospice means no Hospital. Its confort care. Family has always had to do the brunt of the work.

I think its the nurse. Yes, the doctor has to order the med and send it to the pharmacy Hospice uses. But the Nurse probably picks it up. A week is too long. And not calling you back is not good. Even if its to say the meds are being held up because they are out of it and waiting for the distributor to send it, the nurse s/be calling u . I would do exactly what Lea said to do. If you get nowhere, tell them ur looking for another Hospice.

All Hopice's should be using Medicare criteria. It depends on the size of the Hospice and how many Nurses and aides they are able to hire to how often you see them. And how long you can have an aide. Some its an hr, just long enough to bathe and dress a client. One member was able to get 4 or 5 hours.
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