Lovemypresley

((Eni)) I went through the same thing recently with my father, although they had not diagnosed brain mets. He had stage 4 NSSLC and was only diagnosed in March. He had his first and only round of chemo the Fri. before Easter. On 4/17, he was rushed back to the hospital and had to have emergency heart surgery. Afterwards, he was fine..acted normally other than a little confusion here and there. Then that Sat., he was neutropenic. He started acting strange, asking me if I heard the song playing over and over, etc...that Sunday, he was def. a changed person..called my mom asking her if she was at the hospital and that she would not find him, seeing kids who weren't there, seeing numbers on a turned off tv, hitting my mother after becoming agitated, pulled out his IV and catheter and was caught naked in the hallway, etcetcetc...that Monday, I begged his dr. to do a MRI to see if it had spread to his brain..they told me it was Sundown Syndrome...he was 69. SS does not cause crooked eyes and being totally incoherant, which he was that Monday. In just one day, I did not recognize him. I don't think he recognized me. And he stayed that way until he left us...that Thursday, 4/27. Tell me now it was Sundown! Anyway, to me, the mental decline was the hardest for me to deal with. Like you, I felt he was already gone and this man I was seeing was someone else...although I think at times in those last days, he knew a little... but I def. feel for you. I do understand what you are going through.... I hope the radiation helps her. I am sending prayers your way....

Thanks everyone.. I'm sorry I misled you. I was not with him when he passed this morning. They called and I went up after he was gone and spent a couple of hours with him... ..and yes, I wish they had done the surgery first. His dr. said in hindsight, they should have....this was just so so fast and I never said goodbye. His drs. office called me today and she said she was showing everyone his picture (she took it at his first appt. a few wks ago) and no one could believe this, as he looked so healthy. She said now it could have been a little piece of the tumor that broke off and caused an embolism..it's all speculation though..however, I wish I knew but we are not doing an autopsy to find out. I just have so many whatifs...I know that's not healthy. I'm having such a hard time...I suppose I will move down to the grief forum now. Thanks again and good luck to everyone.

Dad passed away around 6am this morning in his sleep at the hospital. I just spent 2 hours with him...god this so so hard. I am in shock. The dr. came in and he's in shock. He was doing better, and he thinks it was a blood clot to the lung....I can't believe he was only diagnosed 7 weeks ago. damn this cancer hell.

He seemed a little more alert today. Last night they told me he pulled his IV out again and pulled the catheter, so they restrained him and he still was today. He did get incoherent later on today and was pulling at everything and said, well mouthed "they are trying to kill me" and he wants to go home. They are giving him Ativan when needed. He aspirated, so he hasn't had anything by mouth other than the thickened cranberry stuff today. He choked with a straw but did better with a spoon. They are afraid to put a feeding tube in for fear he will def. pull it out. Tonight they moved him from ICU to a regular floor, clinical decision floor? Im upset over this, as he gets watched more in ICU, but I can't make them keep him there. His heart and bp seem a lot better, and tonight we were able to make out a little of what he was saying. He wanted diet coke and water, which he cant have. They only have one restraint on him now, so im praying he doesnt hurt himself tonight. They think he may have pneumonia and are giving him antibiotics and will do a chest xray tomorrow..they did put in a pic line today. I just hope he gets better mentally and stops the pulling, etc.

((Jodi)) I'm so sorry. Yes, she's an angel now, smiling down upon you and she will always live within you...

OH yes, the dr. changed his oxygen from the nose kind to the mask with the bag? That has helped. He's having such a hard time breathing it seems. His chest sound awful..full of congestion, wheezy...they did give him a breathing treatment today, after I told the dr. to order it. God, maybe they should start paying me! LOL

That's how he was...first he asked me why they were playing a song over and over, then he saw numbers on tv and tv wasn't on, then he saw tubes at the end of his bed, then a kid with cancer, called my mother asking her if she was in the hospital...very very sad. and Yes, I'm still so livid over Sundown. It took everything in my power not to walk up to that man this morning and tell him off. As far as being incoherant, I had read where that happens near the end, sort of like nature's way of protecting them..I asked his dr. about that today and he agreed. I think it's due to a combination of several things going on. Hugs to you <3

How do we go about getting POA?

I'm so sorry ((HUGS)) You dad sounds a lot like mine...

I know, right? idiots

Thank you all so much for responding. Wow...dad's story sounds almost identical to a couple of yours. I left a message last night at the nurse's station for his dr. to call me this am, since I cannot be there that early. He called me this am and said "your dad's a very sick man." DUH I explained to him about his cognitive symptoms and he said that was the least of his worries right now, that the Atrial Fib is kicking in full force, heart rate was 180, bp low, and he said he's not out of the woods and I asked if he could go today and he said hopefully not, but yes... So I flew up there and he's not is his room. I freaked then was told he had been put in ICU. Thank you Lord! The dr. who called me is an associate of his reg. oncologist and was there and talked with me. Weird he was the one ordering everything, yet I saw his reg. dr. sitting at the nurses' station and he did not say one word to me. Yeah tell me again Sundown?!? So dr. said this is very uphill, the cancer is all around the heart causing this, and although he hates doing radiation to the heart, if he doesn't, he won't make it, b/c the chemo would take to long if it worked. He said the bad side effects of it to the heart wouldn't be for 9-12 months, and that he wouldn't be here in 9 months. I told him what I told about sundown, and he said his low oxygen level could play a part on his brain, along with a medication problem, but all he was taking were heart drugs and only Ambien the night after he went a little nuts. Also, his heart could be doing this, too. So he walked me up to ICU and omg...he looks bad...they said at least he wasn't gray, he had color now. The dr. also called in his cardiologist..you would think with the heart surgery, they would have called him by now?? He said this AF will happen over and over.. So they started him on new heart drugs via IV and yes, I told them to give him an IV and the dr. said he should have been on one. He can't eat because they need to do more swallow tests and he's out of it, but said he will prob. get a feeding tube. His reds are low so they gave him a blood transfusion..a little and more tomorrow, so not too much fluid at once, since that's a problem, + Lasiks. Dad did grab me and pull me to him and hugged today, so I hope he knows who I am... I am happy that they finally are being proactive, although they should have done this yesterday! It's so hard to watch...I would give anything to have my old dad back..even for a short while. But as I told his dr., I don't want him suffering. Thanks again for all your support. It's good to know others understand what we're going through.

Thanks Cindi. I just did my profile. I posted his story on the Family/Caregivers forum. Oh, and we're in VA.

Hi all, I just registered tonight and am glad I found this site. I am 39, only child of my dad, who just turned 69. Dad had a routine chest xray early last month and was diagnosed after having a ct scan (3/6) and bronchoscopy with NSCLC, stage 4. Also, his vocal cord nerve is paralyzed from it and the reason why he lost his voice. Also the cancer has encased pulmonary artery and narrowed it by 50%, so there's a chance it can rupture. He had his first appt. with oncologist on 4/7 and was offered a clinical trial. He had to have tests done prior, so he had a brain scan, which was normal, but his EKG came out bad, so they admitted him on 4/19 and was found to have Atrial Fib. and Pericardial Effusion, (fluid around the heart). They thought about doing surgery to drain the fluid, but istead gave him his first dose of chemo, Docetaxel and Carboplatin, on 4/21. He's supposed to have chemo once every 3 wks. x 6 cycles. He had no sudden side effects, and they discharged him on 4/24. We had to call 911 last Wed., because he was having a hard time breathing and I couldn't find his pulse. They found out in the ER that he had more fluid around his heart and was in heart failure, his bp was 60/40, high potassium and high blood sugar. So they did emergency surgery to drain the fluid. He seemed so much better the next day, but since then things have changed...they did say the cancer had spread to the pericardium, fluid and even saw tissue on his heart.... A few days ago, he started having hallucinations. He's not on pain meds in there. He kept hearing a song, kept seeing things, then on Sun., he ripped his IV out and the hallucinations were more. He called mom to ask if she was in the hospital and that she would never find him, etc. Also, Sat he became neutropenic, and they moved him from cardiology to oncology. They gave him a sleeping pill last night after he became violent and hit my mother, very next second, didn't know he had done this. Last night he walked down the hall sans clothes trying to leave. I went to visit him today, and omg what a shock in just 1 day. He doesnt look like dad. He's incoherent, his breathing is so labored and wheezy, and his eyes are foggy and crooked. He didn't even know me or where he was. It was so shocking, I had to leave and just broke down. I can't believe it's so fast. He was fine up until a few days ago, as far as his mind. The nurse told me "oh he has sundown syndrome. Some elderly patients get confused at night." Well, maybe, but it's all the time now and he's incoherent! I left and went over to speak with his nurse at the cancer dr and she said it may be his heart meds or maybe the cancer has spread to his brain, although the MRI was normal 2 1/2 weeks ago. She said she would get the dr. to order an MRI. Well, she called and said he didn't think it was necessary, that he felt it was...sundown syndrome! I explained that no one but us knows the difference, b/c his weekend nurses are not there today, his dr. was on vacation and just saw him this morning, so they can't see the difference. Also, a case worker came in and asked if we wanted him home after discharge with home health care/hospice or a nursing home. Well, we can't take care of him like this, but I wish they could find out why he's like this. Also, he choked on food this am, so they did a swallow test, because he cannot aspirate, and they have to give him thickener in his liquids now...not that he's drinking or eating..and they haven't put an IV in since he pulled it out yesterday morning. Has anyone had experience with the above when the patient is not on pain meds, patch , etc which could cause hallucinations and esp being incoherant? I am so afraid and so shocked...I can't believe how he's changed in just a couple of days...I cant get him out of my head. I swear if I had just walked by him not knowing, I would not have recognized him.

Hi all, Im so glad I found this site. My dad was just diagnosed last month and is in the hospital doing just awful. I'm so scared and so shocked and need support and hope to help others, too. thanks