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The Dr found a mass on dads liver about 2 yrs ago. They only recently biopsied it and found cancer. His ammonia levels have been high but were under control with medication. His skin is jaundiced and he is in pain and won't eat at times. he can barely swallow and his mouth and lips are dry and cracked. Last week the NH found him unresponsive in his wheelchair and had him hospitalized. He had no urine output until they hooked him up to a IV. They couldn't catheterize him because he has a large prostate. (their words) and had to use a condom cath to catch any urine. His ammonia levels were ok in the hospital so they sent him back to the nh after a 2 day stay. He has slowly woken up. Now dad is back in the hospital again with high ammonia levels and low platelets. He was admitted this time for aggressiveness and agitation. he won't take his meds, eat, drink and has thrown himself off the side of the bed and he is hitting the staff etc. This started 4 days ago and they said that he didn't want to see me. he has said that before so it was no surprise. The big surprise is that he didn't want to see his "DO NO WRONG" son. The one who wants Guardianship even though he hasn't visited more than 8 times in the last 4 yrs. The nurse said he is quiet and drowsy right now. What I want to know is if this erratic behavior and ammonia and platelet levels are a sign that he's nearing the end of his life. Has anyone gone thru this before? Maybe you can answer from your experience with Liver Cancer.

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Oh and they CAN hear hear you. I asked my husband to try to say my name if he could hear me. He struggled so but did say it! And said it repeatedly as best he could until his very last breath. He died in my arms. He left me with an unforgettable gift.
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It is probably too late to answer the original question. I would have said yes; i went through this in the spring of this year. A good hospice company is hard to come by. I had to fire two before found a good one.

You cared and you were there till the end. May that give you peace. The loved one appreciated it. I know it.
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Rosie he will soon be at peace and you can start the healing process. You will always miss him but he will stay in your heart. It is just possible that he will wake up and be lucid the day or hours before he dies. Hospice sounds as though they are managing his pain and agitation in the best way possible and being an inpatient facility they have more options. Remember that hearing is the last sense to go so continue to talk quietly to him and say your goodbyes. If he liked music play his favorites at low volume. Avoid wearing strong perfumes this can be very to the patient at this stage. Don't exhaust yourself at the bedside or have regrets if he dies when he is alone. he may have wanted it that way - it is often the case. As Butterfly said you did everything right given the information you had, you reached out to people who had gone before and most importantly listened. Be at Peace.
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Thank you for your update rosie123; you've done everything right and bless you for caring enough to follow through. You'll always wonder if you could have done more, don't second guess yourself. A calm and peace will wash over you and you'll know you did the very best you could with what you knew. Just hold his hand if he will let you and spend as much time as you can with him. Hugs.
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Hugs to you and your family as you go through the end of his life's journey. As much as you want to see them at peace and pain-free, it's still hard to go through.
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Thanks for all the answers they have been very helpful. he is in a Hospice facility. He is now a DNR. They allowed me to consent for that because I am his medical POA. he has been unresponsive since being admitted 3 days ago. he is to have nothing by mouth because he will choke. he gets pain meds and ativan in his arm where they put in a port. His urine is orangish red and he has a catheter in place. He only makes noise when they turn him or he tries to clear his throat. he does get the hiccups. he always had them before he was sick. Its kinda like his body is saying "whoa.. parts of us still work in here"..
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Please get Hospice involved ASAP like today. They will take care of everything with the NH, his doctor and also DNR. His body is starting to shut down and giving him an IV will only confuse his organs; morphine under his tongue will give him some relief from his pain and agitation. Do not let the NH make the decisions for you especially if you don't agree with them. That is where Hospice is so great. Call them today, please. Keep us posted and bless you for caring. It is so very tough to watch a loved one deteriorate; tell him you love him, hold his hand and do it as many times a day as you can. Make sure you also tell him it is o.k. to die when he is ready, or if he sees the "gate opening with a bright light" tell him to go. It's a hard decision - I know as I've been there recently, but it is the right one. Hugs, blessings and prayers.
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If there is not a DNR, wouldn't a POA with medical authority allow you to call the shots for palliative care only going forward?

That is what I would suggest with or without hospice. Enlist drs and care managers help to get this ordered.
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Everyone keeps mentioning the DNR... isn't it a little late now for that if it was not done earlier?
Thinking common sense, the patient would have to be cognizant and aware of the ramifications of a DNR, and this guy sounds like he really is not thinking rationally. Therefore, trying to get a DNR now may be impossible, but I am not completely sure.
Just a thought.
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I want to add that if he has liver cancer and the kidneys are involved (as it sounds like they are with the ammonia levels being high & urine output being low), there is nothing wrong with refusing more tests and treatment. At some point you have to draw the line and let nature take it's course.
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My aunt passed from a liver failure (no cancer, but i suspect the end is the same) Her doctor told her that with liver failure it's like going up a very steep hill...it very slowly chugs along getting worse with time, but once it reaches the top of the "hill", it careens out of control and crashes very quickly. This is exactly what happened with my aunt - she was gone before we knew it once she reached the top of that hill. I agree that hospice is a good choice, and also agree that it appears he is nearing the end. If he is not thinking clearly now, and doesn't already have a DNR in place you probably won't be able to get one if you don't have DPOA, but you can talk to hospice about that.
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IsabellaM: Get your mom evaluated right away. Get full panel blood test and urinalysis. This is not necessarily end of life. It may be something as simple as a urinary tract infection. That can cause all kinds of problems in the elderly. She also very likely is dehydrated and for her at this point that is problematic and can and should be corrected. The NH should be paying better attention.
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Hospice is essential but if the N/H does not have a contract you can not get them in. Ask for what is usually called " comfort care" in the nursing home.
From what you are telling us I would expect your father to pass within the next two weeks. Now I caution you with what I am about to advise because I am not there. Make sure there is a DNR in place. Comfort care includes nursing care to insure his skin remains intact and mouth care which he is not getting now. His mouth should be kept moist and lips lubricated. ice chips or sips of water are helpful. If he can't use a glass a sippy cup may help or take a straw dip it in water, hold your finger over the end to contain the water and put it in his mouth and release drip by drip. Another way is to use a syringe without a needle but only a drop at a time so he does not choke. Let him eat when and if he wants too. Offer things like jello and ice cream. Do not allow them to tube feed or use IV fluids. They may tell you he "needs" them because he is dehydrated. He does not dehydration is not painful,. it is thought to release endorphins which have a calming effect. Artificial rehydration and nutrition actually put an added stress on the body and the failing organs that are shutting down. Medications should be stopped, the only things he needs are pain meds and sedatives. There is a psychosis that goes along with liver failure and that is very distressing for patient and family to observe. The size of his bladder should be monitored because this also causes agitation if overfull. They may need to call in a urologist to place a catheter as his prostate is enlarged. Also his bowel function should be observed because constipation also causes agitation. Because someone is not eating or drinking it does not mean they are not producing feces. This is best managed with a rectal exam every few days followed by a small enema if indicated. If you find him in wet or soiled bedding, start by asking nicely and if that does not work quietly demand and stay at the nurses station till someone is sent to take care of him. Don't make loud demands this will only get you removed by security. You are there for your grandfather's comfort not to vent. If hospice is involved call them at once if you are not satisfied. Lying in a wet bed is a good first step to getting bedsores.
Now about bedsores, and other nurses may disagree with me they can not always be prevented and it is not always a sign of neglect. Even with two hourly turnings ,immaculate skin care and pressure relieving devices they do happen. I have even seen them on a patients ears. it is horrible but true. Antibiotics are also usually avoided. Pain medication can be given, orally by injection, IV rectally or by patch. As the circulation shuts down the place that maintains the best blood supply for the longest time is the mouth. For this reason a good medication to use is liquid morphine or it's synthetic counterpart. It is of very small volume given with a dropper of tiny needleless syringe. If the patient can not swallow it is absorbed in the mouth. Can even be given to an unconscious patient if they are showing non verbal signs of pain such as moaning. For the restlessness Ativan is very useful. it is a small pill which can be crushed and given in a little apple sauce , jam etc or rectally.
I seem to have written a text book here and if you have hospice they know all the tricks of the trade but I felt this might help others coping with this at home.
Expect to hear a lot more from me next week as I am having bunion surgery and to my surprise will not be allowed to weight bear for six weeks. did not know I was signing up for that!!!!!!!!!!!!
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My mother does not have cancer, but she is very sleepy and doesn't drink enough fluid (she just entered a nursing home). Is this end of life behavior? Sometimes she barely acknowledges us and hardly speaks. Other times she is quite lucid.
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Yes, by all means call in hospice. Don't delay. Call today!
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Call hospice, now. You will glad you did. Make it easier for your dad and you.
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Call hospice, now. You will be glad you did.
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These sound like end stage behavior. No urine output is a definite warning. Often they stop or refuse to eat as their way of controlling their death or they just don't feel like eating as it is painful. Is there a DNR in place? NH may start tube feeding, which he may not want. A blood panel for liver function might be helpful but you already know that he has liver CA. Any of these things or pain can cause agitation or behavior problems which can be managed with anti-psych or anti-axiety meds and pain meds for his pain. These are all part of comfort measures. Agree with hospice reommendation as they are preapred to offer care any time that no further medical treatment will be sought for his cancer. God bless.
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I agree. Time for hospice. The ammonia levels may be part of the behavior problem. He sounds like he is "out of it". I am so sorry.
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You might want to call your local hospice.
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