Follow
Share

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.

This question has been closed for answers. Ask a New Question.
Hospice will NOT stop any antibiotics. And you don't have to be at "end stage" to qualify for hospice care. A doctor has to believe that someone will die within 6 months to qualify for hospice care, but that doesn't necessarily mean that your mom will be dead in 6 months.
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.
Helpful Answer (2)
Report

Oh, my! You've been through a lot and I'm sorry to hear all the mixed messages you've received. Have the doctors done a scan to rule out blood clots for your mom? It's concerning to hear she has pneumonia as that can cause fluid to build around her lungs and heart, which can then exacerbate her edema. Does her blood test show elevation in enzymes?

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!
Helpful Answer (1)
Report
jdg1027 Aug 2023
I’m still waiting to hear back about more tests results. I didn’t ask about the enzymes but I will. I am strongly considering changing nursing homes but Mom is on medicaid and it’s so hard to find a medicaid bed in Florida where we live.
(0)
Report
If it was me, I would tell them you are going to wait for an accurate diagnosis by a specialist before putting her on hospice.

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.
Helpful Answer (1)
Report
jdg1027 Aug 2023
The one good thing about being in hospital is that they are running far more tests then the nursing home was willing to do so if nothing else I will get some answers. I get really upset when people say to me… “well she is 96 so it’s probably her time so just put her on pallative care.” It’s hard to do that with someone who clearly still has a lot of life in her and who is alert, eating, drinking, conversing, and has no other pre existing conditions. Her Mom lived to be 100 and all her siblings lived to their late 90s so longevity runs in her family. She doesn’t seem ready to die and if the nursing home took better care of her instead of giving up on her purely because of her age, she probably wouldn’t be in the hospital right now. But now with the pneumonia she may not recover so hospice is looking like the best option but I’m waiting to hear back from her hospital doctor as to the results of some other tests.
(1)
Report
See 2 more replies
I’m getting alot of conflicting info regarding the antibiotics and hospice. I asked the hospice intake nurse today if they would take her off of the antibiotics and diuretics if she was under their care and she said that sometimes they do and it is usually a call the doctor makes. I have heard such wonderful things about hospice that I’m inclined to go in that direction as long as I know she can continue to be treated for her pneumonia.
Helpful Answer (1)
Report

The nursing home is negligent in not calling the ambulance and having your mother taken to the ER for the edema. It’s clear that the edema is from the pneumonia and x-rays should have been taken to figure out where the swelling was coming from. You definitely have a malpractice lawsuit here.

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.
Helpful Answer (1)
Report

You can effectively replicate hospice without being on hospice by refusing further treatment. You don't sound ready to do that, so just put the hospice decision in the back of your mind for now and focus on getting her over the pneumonia.

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.
Helpful Answer (1)
Report

Are you pursuing hospice at home? Or will you transfer her hospice care at a nursing facility?

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.
Helpful Answer (0)
Report

Just want to say that you can always call 911 and have Mom taken to the Hospital. They do have a doctor who probably made the call. There is only so much testing that a NH can do.

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.
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter