Mom was doing well physically until about 3 weeks ago when she developed severe edema only in her arms and hands. The nursing home ran labs and did an ultrasound on her arms and found nothing wrong except for slightly elevated white blood cell count. They put her on a diuretic to control the edema and then told me she probably had less than 6 months to leave, and I should get hospice in because she is 96. I asked for more tests to be done because although she is bedridden, she is still alert, active, eating, recognizes her family, and isn’t suffering apart from being uncomfortable from the edema. The nursing home basically refused to run any more tests and just kept pushing hospice. My mother has no other physical conditions except the dementia and edema. She isn’t on any other meds. Her heart is good, she has good BP, she isn’t diabetic, so I wanted more tests done but agreed to a hospice evaluation. Long story short hospice evaluated her and didn’t think she was end of life yet but was concerned that she was getting aspiration pneumonia, so they told me to get her to the ER. They also think that the nursing home was neglecting her edema and could have run more tests and because they didn’t this probably caused her pneumonia. So, now Mom is in the hospital and being treated for pneumonia and they are running more tests to find the cause of the edema because it doesn’t appear to be due to heart failure. Now the hospital is asking if I want another hospice evaluation and now that Mom has pneumonia she probably qualifies. I’m on a roller coaster and trying to make the right decisions for her. I’m OK with getting her into hospice but will they stop the antibiotics? I’m so confused.
Once she's back in her nursing home you may decide that if another crisis comes up that it's not worth putting her through more hospital stays, needles, etc., and then the hospice decision can be made.
My mother was in the hospital with sepsis and dementia during Covid (and therefore not allowed visitors in the two weeks she was there), and it was so terrifying for her that I finally said we were done with hospitals. I put her on hospice the day she returned to her memory care, and said she's be treated for any ailments where she was and that was that. She was still on all her regular medications, she was continually treated for a pressure sore she got in the hospital, and she was treated in place when she developed gout in her hands and arms. No medications were withdrawn until I made the decision about three weeks before she died eight months later.
P.S. Were your mom's hands and arms red, swollen, and painful, or just full of fluid? No one but the hospice nurse believed my mother had gout, but she was tested and did indeed have it. It was caused by the great gobs of sugar she was taking in from living on Ensure for months. They switched her to the diabetic formula, put her on gout medication, and voila! -- cured -- all while on hospice.
I have no idea if antibiotics will be discontinued if hospice is brought it, question for them. I don't think water pills will be discontinued. Another question for hospice. If they will be, I may wait on Hospice. But I would keep and eye on Mom at the NH. If you feel she needs a hospital, you ask them to send her. If they won't then u do it. NHs are not prisons and Mom is has a right to the best care.
Alva is a nurse and can tell me if I am wrong. I would think any RN would be able to tell if a resident has pneumonia and definitely any doctor. I would ask why the DON why Mom was not sent to the hospital. And why an Xray was not ordered to rule out pneumonia. They don't have Xray machines on site but portable ones can be ordered.
You need to ask your mother’s doctor or the hospice doctor whether they are going to stop the antibiotics that your mother is taking if she goes into hospice. This is a medical question that must only be answered by your mother’s doctor.
Swelling can also be sign of poor circulation since she's bedridden and somewhere internally something is amiss. Not all tests are full proof and entirely reliable. You will also have to ask yourself how much do you want your mother to endure with running tests?
At some point, hospice doctor will stop any continuing treatment, but it's unlikely it will be that fast. If your mother's condition continues to deteriorate and no longer responding to even her antibiotics, doctor will then decide to try either something else, or stop entirely. Also, please be prepared sometimes all venues of treatment are exhausted and age is a factor when body can't respond as intended.
As much as you despise age used as an excuse, pneumonia combined with her age will cause weakness and put a strain on her body. This can escalate and happen quickly. I hope you get the answers you are seeking from the hospital doctor and peace of mind you have tried all you can to help your mom.
Can she recover from the pneumonia?
Otherwise, everyone is just guessing, as I am. But the doctor should know, and talk to you about your Mom's current diagnosis and prognosis.
Sometimes. just the age is considered. Don't do that.
Antibiotics won't be stopped immediately. The goal of hospice is to provide comfort care. The hospice doctor will have to evaluate your mom and determine what's the appropriate care for her. Also, please don't be discouraged by the word "hospice." Sometimes people get better and graduate off of hospice. Those are all still encouraging signs your mother hasn't lost her faculties and is eating. Is it possible to switch care providers for your mom to a different nursing home? The one she's at doesn't sound like they're invested in providing quality care if the hospital is even saying as much!
My late husband was under hospice care for the last 22 months of his life, and he was put on antibiotics(by hospice)several times because he had a UTI.
As long as someone continues to decline they will be eligible to remain under their care.
I would certainly bring them on board now and let them keep your mom comfortable and pain free.