strange symptoms?
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Thank you all for your information.
Mlepp0416 -They are going to check my dad’s blood tomorrow to see if there are high levels of ammonia in the brain. He has progressively gotten worse just in the past 2 days. He becomes disoriented and sees strange things that aren’t there. He had to go change his shirt today because he said that he kept seeing odd shapes “jumping” off his shirt at him. He knew it wasn’t real, but it bothered him severely. It’s like he will be fine one minute, and the next completely out of it. Hoping the results tomorrow show that it isn’t just the cancer progressing. Guess we’ll wait and see.
Lainy – Thank you for the book suggestion. I am looking into that. I found out that there is also a place called the Caring House that helps with children in this situation. I plan to check on that as well.
Thank you for all the suggestions and comments. Without them we would never have known to ask about these things. And most of all thank you all for the encouragement. I am struggling, but finding ways to get through it for now. Each day brings new challenges, as you all know.
I had no help with Hospice. No pain meds in the end , no one there but me.
When his pain got so bad they shut the door. Make sure you research these
Hospices – my sister had one that was fabulous My heart go out to each and
everyone of you I never knew what hit us and maybe if we had found this
site our last 13 weeks could have been peaceful.
MaureenAnp – I’m so sorry for the news you received. As for having small children, I have a 2 year old – Dad’s first grandchild and they absolutely adored each other. It’s difficult, but like others have said, you will find the strength from somewhere and children are incredibly resilient – I like the idea Lainy mentioned about getting a few books…. they may help.
My heart goes out to you and your family…
Jen
anp….I too am sorry to hear of the progression of this disease. Also I agree with Lainy in that I know that you will have the strengths needed to support your family in this difficult time. You have shown it all along and I don’t see you faltering in the days and weeks ahead. For extra support don
Dear ANP, I am sorry to hear the new news. I believe it’s time for the doctor to give you a definite prognosis. You will be surprised at where your strength will come from. Don’t dread the booklet as it helps to have the time line and to know what to expect. When I had to put Teddy into the Hospice Facility, I knew exactly what to expect so was mentally prepared for that. Of course nothing can prepare one for the loss of a loved one but at least you will understand what is happening. This is a time now to make precious moments. For your daughter it might be a good idea to get a book or two on the passing of a loved one. I know they have books like that for children. Please stay in touch as it does help to write things out. We are here for you and we care. Make your mantra “I will be strong” and keep repeating it. Oddly you will begin to believe it.
My mother spoke with the hospice nurse today, and it was not good news. She noticed a significant change in dad’s condition since last week. She believes the confusion and difficulty speaking clear thoughts (and strange movements) are all from the disease. I spoke with him several times today and he sounded really good, but inbetween those times my mother said he was a little “spacey.” It is so strange to see him up and getting around fine, and know that things have progressed to this point.
We are about to receive the dreaded blue booklet. The nurse is going to be visiting more often. I have not let it sink in yet, because I know if I do, then I won’t be able to take care of my family like I need to. I have small children, one of whom is my dad’s best buddy. She begins Kindergarten next week. I have no idea how I am going to help her through this, when I know I will be a wreck. All I know is that my heart goes out to everyone going through this horrible disease, and their families. It takes away so much, and so quickly.
Thanks to all of you for your helpful responses. It really has helped with knowing what questions to ask. It really helps to hear of others experiences and be able to compare them to our situation and gather as many answers as possible.
Anp, Nothing to add to the wonderful responses and suggestions, just want to let you know I am thinking of you and your family at this time. Nancy
Anp,
I have to agree with what everyone else said. It makes me a bit sad to read your posts since Dad’s death happened just over a month ago and I’m having a much harder time now then when it first happened, but they are right – I think he’s trying to prepare you for what’s to come. Dad let us know that his time was coming, and he was right – and for him, it really did happen in a matter of a few days/weeks. He started to pick at the air and his blankets, talk to people who we could not see (but who I choose to believe really were there with him), and like your Dad, would be “with” us some of the time, and gone the rest. He slowly got more aggitated and couldn’t be alone, since he had no strength but would try to get up. Over the days, he was with us less and less until he became unresponsive (though still awake). We know he could hear us though, as he cried when he heard a certain song, and cried out to us occasionally. I’m so sorry for what you are going through. Please continuously tell your Dad that you are going to be okay, that you love him, and just be with him… even as things progress, I promise you that he will know you are there. I’m thinking and praying for you and yours.Jen
anp….I would also like to comment on the nausea. Gastro. cancers often are accompanied by nausea. In my husband’s case progression of the disease increased the nausea and blancing the medication vs. him staying lucid became more difficult as time went on. Additionally, even the smallest amount of secretion can lead to vomiting (in very progressed cases) and finding a balance in all can be challenging. I do however, believe that your Dad’s nurse is taken all in account and is working hard to keep your Dad at a comfortable level. My heart is with you.
All my best wishes,
Marion
All my best wishes,
MarionAnp:
It could also be high ammonia levels in the brain. My husband Tom just spent three days in the hospital because he was doing some strange things and talking strange as well. He was smoking non existent cigarettes then dropping them and could not find them (He was not smoking). Then he wanted to go on the computer and after I got the laptop up and running he had no idea what to do or how to log in. I got him logged in and he sat there staring at it like he had no idea what it was. I got him to the doc’s office and he started doing and saying the strangest things so the doc got to see first hand what was going on. He was admitted, and yes, his ammonia levels in the brain were too high and he had a severe liver infection.Ammonia levels in the brain cause confusion, dis-oreientation and just plan make you act weird. The only way to get rid of the high ammonia levels in the brain is to put you on something that will make you go potty (#2) They want to to have loose bowel movements, but not watery and they put Tom on 30 mg of Generlac 2x a day and within 3 days he as back to normal with his ammonia levels.
Talke to your Dad’s doc, sounds like some blood work may be in order.
Go with God and KEEP KICKIN’ THAT cancer.
MargaretANP, your dad is trying to prepare you. People who are passing seem to have this inate insight and it is an incredible thing to be a part of. It’s not even a matter of thinking, I am so very sick I know I am dying. It is unexplainable like he told you. We saw Teddy actually greeting others who had gone many years ago. Jennifer S and Andie both recently went through this with their fathers. Please use this time to make precious moments. Let your dad know that you are all going to be OK. I am not a nurse or a doctor but I have to be honest with you that these are all signs. We don’t know when or where but he is mentally making his peace and when he is ready, that will be the time. But please talk to Hospice about making him more comfortable. Comfort is the bottom line.
Thanks, Lainy. My mother plans to talk to the hospice nurse tomorrow to see if we can gain any more insight. He takes nausea medication already, but he still has a lot of problems getting sick. It seems to come on so fast. I think she is going to ask about the booklet as well. My dad said today that he thinks his time is getting shorter. He says he can’t explain it, he just feels that way. That is very concerning to us. It just seems that he has gotten worse in the past few weeks. He’s having trouble carrying a conversation, whereas a few weeks ago, that was not a problem. We are very fortunate to have a wonderful hospice nurse who has become not only a great caregiver to dad, but a good friend as well. Just wish there were more solid answers out there for everyone going through this. Cancer encompasses so many things that are “unknown.” My heart goes out to all who are going through this.
Dear ANP, ‘hallucinations’ can come from the Meds and/or the advancement of the disease. At the end stage it is not uncommon to be picking at the sheets or in the air. I would discuss this with the Hospice Nurse as there are meds for anxiety and hallucinations. There is no reason for your dad to be nauseated as there are meds for that as well. Hospice has a job and that job is to keep him as comfortable as possible. They also have a booklet that explains what to look for when the patient is getting close to the end.
Has anyone noticed or had experiences with strange “hallucinations” during anytime of this disease? My dad is beginning to experience strange things and we cannot tell whether or not it is the disease or the medication. He will grab at things or look as if he is holding something and there is nothing there. He is on a large amount of pain meds and anxiety medicine, so it can be hard to tell at times what symptoms are coming from the cc. He is under hospice care and is “at himself” about 50% of the time. He feels ok and can get around well some of the time, and the rest of the time is usually sleeping or nauseated. I have heard that this can be common once things have progressed, but still uncertain.
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