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When do I call hospice?
My mother has non alcoholic cirrhosis of the liver. She is almost 84 years old. In the last 4 months I have noticed a change in her. She has been sleeping in bed a lot. She was able to take a shower and go to the bathroom by herself. 3 months ago she started having trouble standing up. Then she needed help in the bathroom to standup. Now she has quit going to the bathroom and we have to change her because she is afraid she will fall. She has been going to the bathroom every 2 to three hours for two months straight. She bleeds from her rectum and now is very bloated in her abdomen and legs and feet. I call the doctor every week and I know I am bothering them. Last Friday night she woke up at 2:30 and didn't make it to the bathroom and I had to give her a shower and she was so weak because she didn't eat and couldn't hold on to the bars and let go and I couldn't hold her up and she landed on the side of the tub, then went down to the floor and me and my sister couldn't get her up so we had to call an ambulance to get her up. She was taken to the hospital to make sure she didn't break anything and I couldn't even put a pull-up and she made a mess everywhere and the hospital released her like that and they had 2 male nurses put her in my truck and she was so loose. The hospital didn't care about that, all they cared about was her not having broken bones. Now she will not get up to go to the bathroom and she tells me her mind is not working right, that she feels very weak. She sleeps a lot now and I am so afraid that she is not going to wake up. What should I do? How do I know when she is ready for hospice? How do I ask her doctor for her prognosis. A month before that we took her to that same hospital because she couldn't get up and the doctor said her liver was gone and gave her 800 m of bactrim and it made her not have any good bacteria. She has been having diarrhea ever since. She is not eating now!
COMMUNITY LEADER
"Her doctor said that she would go ahead and admit her to the hospital because of our concerns and that they will get us in contact with social services after her doctor evaluates her."
I am glad to hear she is getting the care she needs and a referral to hospice as a future option. I am sorry it took to getting to this point for it to happen. It sounds like things are on the right track now thanks for your persistance.
Obvious I don't know your mother's health status but let me explain a little about HE.
HE can be caused by many different things. Of course the main thing the Lactulose is used for is to keep the digestive system moving so that no food stays too long in the bowel as this can cause the build up of ammonia and other toxins as the food is digested. The toxins are not cleared from her blood, as they are in healthy people by the liver, because her liver is too damaged (advanced cirrhosis). Then they travel through the blood to the brain.
There are also other conditions that can trigger HE. One is dehydration. A person who has diarrhea can become dehydrated and this can trigger an episode of HE. Also an infection or internal bleeding can trigger HE as well. Which is why the GI NP was concerned about a bleed in her head besides the obvious reason that a head bleed presents.
So as far as her HE concerned we can see that taking the right dose is very important to control HE. Ideally we want the patient to have 2-4 bowel moments per day. This will keep the toxins in check. Whether that is 2 doses over a day or 4 doses the goal is 2-4 bowel moments.
* If the patient has less bowel movements the ammonia and toxins can build up and go to the brain.
* If the patient takes too much Lactulose they will have diarrhea which will cause dehydration which will also trigger HE.
So taking the correct amount of lactulose is a fine balancing act.
It took me many months to figure all this out although it is in all of the literature about taking lactulose to manage HE but I didn't understand how important it was for me to feel the best I could while having HE.
Now if the patient has an infection or bleed these conditions will override the correct number of bowel movements and addition medical help is needed. Which is exactly what you have done.
Always air on the side of precaution.
I am glad that your mother's GI NP was made the right assessment of the situation as only doctors and nurses experienced with HE understand what is going on. In the future you may want to contact her should you have any questions about your mother's condition. I have had friends who on first look were thought to be drunk or mentally ill by doctors not knowing their medical history of advanced liver disease.
I'm sorry your mother and yourself have to go through this.Hopefully she will start to get the proper care she needs so lessen her suffering.
Let me know how things are going for you both.
Be well.
Hector
I am glad to hear she is getting the care she needs and a referral to hospice as a future option. I am sorry it took to getting to this point for it to happen. It sounds like things are on the right track now thanks for your persistance.
Obvious I don't know your mother's health status but let me explain a little about HE.
HE can be caused by many different things. Of course the main thing the Lactulose is used for is to keep the digestive system moving so that no food stays too long in the bowel as this can cause the build up of ammonia and other toxins as the food is digested. The toxins are not cleared from her blood, as they are in healthy people by the liver, because her liver is too damaged (advanced cirrhosis). Then they travel through the blood to the brain.
There are also other conditions that can trigger HE. One is dehydration. A person who has diarrhea can become dehydrated and this can trigger an episode of HE. Also an infection or internal bleeding can trigger HE as well. Which is why the GI NP was concerned about a bleed in her head besides the obvious reason that a head bleed presents.
So as far as her HE concerned we can see that taking the right dose is very important to control HE. Ideally we want the patient to have 2-4 bowel moments per day. This will keep the toxins in check. Whether that is 2 doses over a day or 4 doses the goal is 2-4 bowel moments.
* If the patient has less bowel movements the ammonia and toxins can build up and go to the brain.
* If the patient takes too much Lactulose they will have diarrhea which will cause dehydration which will also trigger HE.
So taking the correct amount of lactulose is a fine balancing act.
It took me many months to figure all this out although it is in all of the literature about taking lactulose to manage HE but I didn't understand how important it was for me to feel the best I could while having HE.
Now if the patient has an infection or bleed these conditions will override the correct number of bowel movements and addition medical help is needed. Which is exactly what you have done.
Always air on the side of precaution.
I am glad that your mother's GI NP was made the right assessment of the situation as only doctors and nurses experienced with HE understand what is going on. In the future you may want to contact her should you have any questions about your mother's condition. I have had friends who on first look were thought to be drunk or mentally ill by doctors not knowing their medical history of advanced liver disease.
I'm sorry your mother and yourself have to go through this.Hopefully she will start to get the proper care she needs so lessen her suffering.
Let me know how things are going for you both.
Be well.
Hector
Yesterday I was told by my mothers GI NP to take her to the ER because they wanted to make sure that she didn't have a slow bleed in her head and the fact that her labs ( that Friday) showed her ammonia levels were high.. She thought that that could be the reason why she isn't getting up anymore and that they would do an overall evaluation of her condition. When we got her to the ER, their were no orders for her and the ER Nurse said that sometimes that is what the Doctors office will say to cover themselves. I said I wasn't making this up. It was so hard getting her to the hospital. The nurse said that since my mom's ammonia levels were still high after taking meds for (HE) and that she is having diarrhea every 2 to 3 hours means that her condition is worsening and that we should contact hospice. That all I wanted to hear. Her doctor said that she would go ahead and admit her to the hospital because of our concerns and that they will get us in contact with social services after her doctor evaluates her. I just wanted to say that out of everyone the ER Nurse was the one to say mom needs hospice now and I appreciated this. I think the medical field is so afraid of lawsuits that they give families the run around.
She lives in El Paso, TX. I just called her Doctor and she is not in but they will have her NP call me back when she gets in. My mom say she is having trouble breathing and it feels like asthma . She has diabetes and ruemitoid arthritis. I want to thank you for replying so quickly. You have helped me! Should I take her back to the hospital and see if they will refer hospice to us?
I'm so sorry to hear your situation it breaks my heart First of all do you have home health care You should be able to get that they can change her and give he baths I know when I lost my mom she was no longer able to go to the bath room and bath So I had a woman who was real good and she taught us how to turn her side to side to bath her and change her but hospic would be better or both You will be in my prayers May God b with you
COMMUNITY LEADER
First, where are you located? Currently your mother is receiving poor to no care from her current "health care providers".
Sleeping a lot and not eating can be sign of her body shutting down when death is near. But since she isn't receiving expert medical care ( liver specialist who understand the compilations of a failing liver) we really don’t know her true health status. What can and can not be done. But at minimum we know she can be treated as a human being and helped with her suffering.
“I call the doctor every week and I know I am bothering them. “
Bothering them? Too bad. That is their freaking job! Sorry to make them do their job but…What a poor human being these are.
Are they just hoping she dies so they don’t have to be uncomfortable and talk about the reality of death? Sorry.Then you shouldn't have gone into the medical profession.
Your mother and yourself are suffering needlessly because of their incompetence and lack of human compassion. Shame on them. You need to find some proper care for your mother. There are many caring healthcare professionals out there you just need to find them.
Your mother at minimum needs someone to at least make sure everything is being done to ease her suffering if there is no treatment for her condition. Does she have Medicare or Medicaid? She should be able to get home hospice care paid for by them now before it is too late. You can't do all this yourself you need help helping your mother otherwise all of this stress could affect your health too.
If is a liver transplant center near where you live they should be able to advise you and help you make sure everything that can be done is being done for your mother and if needed palliative/hospice services provided to minimize her suffering.
Let me know where you/your mother lives and I can find out what liver disease experts/liver transplant centers are near you and how to contact them. Doctors that work at liver transplant centers work with patients on a daily basis with End-Stage Liver Disease (ESLD). Not all patients can be saved by transplant so transplant centers know how to refer patients to palliative and hospice services and other end-of -life resources.
FYI: Bactrim (SMZ-TMP) contains two antibiotics that prevent or treat different types of infection caused by bacteria. An infection in someone in your mother condition with End-Stage Liver Disease could be fatal. Only a doctor can determine what treatments she should have and how to manage any side effects. I have been taking Bactrim for the last 10 months myself to prevent infection because I am a liver transplant patient. We too are prone to serious, life-threatening infections also. But the liver specialise will know what to do to help her manage any side effects.
You and your mother need some expert care now.
Hang in there. (Sorry about her lousy doctor and hospital. Unfortunately this is not the first time I have heard of incompetent care for people with advanced liver disease).
Hector
Sleeping a lot and not eating can be sign of her body shutting down when death is near. But since she isn't receiving expert medical care ( liver specialist who understand the compilations of a failing liver) we really don’t know her true health status. What can and can not be done. But at minimum we know she can be treated as a human being and helped with her suffering.
“I call the doctor every week and I know I am bothering them. “
Bothering them? Too bad. That is their freaking job! Sorry to make them do their job but…What a poor human being these are.
Are they just hoping she dies so they don’t have to be uncomfortable and talk about the reality of death? Sorry.Then you shouldn't have gone into the medical profession.
Your mother and yourself are suffering needlessly because of their incompetence and lack of human compassion. Shame on them. You need to find some proper care for your mother. There are many caring healthcare professionals out there you just need to find them.
Your mother at minimum needs someone to at least make sure everything is being done to ease her suffering if there is no treatment for her condition. Does she have Medicare or Medicaid? She should be able to get home hospice care paid for by them now before it is too late. You can't do all this yourself you need help helping your mother otherwise all of this stress could affect your health too.
If is a liver transplant center near where you live they should be able to advise you and help you make sure everything that can be done is being done for your mother and if needed palliative/hospice services provided to minimize her suffering.
Let me know where you/your mother lives and I can find out what liver disease experts/liver transplant centers are near you and how to contact them. Doctors that work at liver transplant centers work with patients on a daily basis with End-Stage Liver Disease (ESLD). Not all patients can be saved by transplant so transplant centers know how to refer patients to palliative and hospice services and other end-of -life resources.
FYI: Bactrim (SMZ-TMP) contains two antibiotics that prevent or treat different types of infection caused by bacteria. An infection in someone in your mother condition with End-Stage Liver Disease could be fatal. Only a doctor can determine what treatments she should have and how to manage any side effects. I have been taking Bactrim for the last 10 months myself to prevent infection because I am a liver transplant patient. We too are prone to serious, life-threatening infections also. But the liver specialise will know what to do to help her manage any side effects.
You and your mother need some expert care now.
Hang in there. (Sorry about her lousy doctor and hospital. Unfortunately this is not the first time I have heard of incompetent care for people with advanced liver disease).
Hector
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